Wednesday, December 30, 2009

Lord haste the day...

For quite some time I have logged people saying this odd thing. When my grandmother died people kept saying that she was better off now, not feeling anymore pain, and in heaven. All I could think was that's stupid. She is dead and I want her to be here with me. I never fully understood the idea of a new body, and no more pain. I didn't even really like it because it's just ambiguous.
So before Abigail was born our friends had a beautiful little girl who passed away shortly after birth. It was one of the hardest things I have ever experienced. At some point after I remember one of them saying that she wasn't in pain and had a new body and was in heaven. I got that same feeling I had before. I don't like that idea because I would rather she be here with you guys. I didn't tell them that, but I felt it.

So the season of advent (before Christmas) is a season of looking forward. We look forward to the birth of Christ (although it already happened) and celebrating God walking among men. We also look forward to the return of Christ. The time when He will make all things right. I haven't ever dwelt upon this idea much, but this year it was something that wouldn't leave my mind.
You see this crazy thing happened in May. The day we found out about Abigail having NF we were driving home. My mind was going over things a hundred times. Things like my daughter will probably have tumors. My child could die from this. If she becomes deformed in any way life will be really hard for her. Then this thought crossed my mind. It was one that had never been comforting to me until that day. "One day Abigail will have a new body, no more pain, no more sorrow."
It was such a peaceful feeling for a moment. To think one day my daughter will be in heaven. I don't want it to happen for a long time. But to think that some day she won't have to deal with her spots and freckling, worrying about tumors and cancer. She won't be made fun of for looking different. She won't have to go to numerous doctors appointments. She will only feel the peace and happiness of being with Jesus. That is comforting.
So this season of advent has brought me to a place of truly longing for the day of Christ return. This season of our life has been marked with appointments, worrying, and wondering what the future holds. I know that it is because of man's sinful nature that the world is in a place where disease, wars, drugs, sorrow, and pain are taking over...or it feels that way. We are a people who are depraved. We need a savior to rescue us from our depravity.
And here on earth even if you know the Savior, you still feel the pain and heartache that comes with sin. There is pain and sorrow and death. But some day there will be none of these things. Some day I won't have worry, or headaches or sleepless nights. Someday my husband won't be dealing with finances and mowing the yard. Some day my little girl will know only the good things. And for that day I am longing.

And I heard a loud voice from the throne saying, "Now the dwelling of God is with men, and He will live with them. They will be His people, and God himself with be with them and be their God. He will wipe away every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."
He who was seated on the throne said, "I am making everything new!" Then he said, "Write this down, for these words are trustworthy and true."
Revelation 21:3-5

Sunday, December 27, 2009

Our weekend lessons...

Abigail with one of her Christmas presents...our little drummer girl!

I have had a very deep and interesting train of thought for the last few weeks. I have been meaning to blog about it. I will. But for now I am going to write about what I have learned this weekend...

1.I have an amazing husband. I didn't really just learn this, just was reminded of it over the weekend.

2. Asthma in a toddler makes visiting homes with lots of allergens very hard on everyone...which leads to my next lesson...

3. Although a newborn eating every three hours is really hard on the body, it actaully can be worse. Holding a toddler who is wheezing,and who has even more trouble breathing when you lay them down to sleep, until two in the morning when she finally falls asleep is much harder.

4. I really really really love our own bed. I enjoy being with family, but I wish I could take our bed with us.

5.Although we live in a state that gets snow EVERY winter people forget how to drive in it in the off season which leads to...

6. Sitting on the interstate for an hour and a half with a toddler in the back seat as well as two dogs is not enjoyable for anyone in the car.

7. Rolling down your window to get fresh air while sitting on the interstate will invoke the man in the semi next to you to roll down his window and yell something at you despite the fact that your husband and toddler are in the car.

8. Watching someone get stuck, although stinky for them, is a nice form of entertainment when sitting on the interstate.

9. Benadryl (as prescribed by our doctor) does keep our toddler from getting car sick.

10. Benadryl wears off after eight hours. This means if you are driving 40 for a while, stuck for an hour and a half, end up having to stop for dinner, and get stuck on the loop in Indinanapolis because the Colts game just got over, the eight hours will be up and your child will puke.

11. There is nothing like a horrible car ride home to make being home feel even sweeter.

12. Thinking that we were done with doctors visits for the year was ridiculous...tomorrow will be number three since Abigail's well check...she has pink eye.

Although this post is sort of fussy, we did have a great time with all of our family Christmases and are thankful for our families. We hope all of you had a great Christmas as well!

Tuesday, December 22, 2009

Jason and Andrea sitting in a tree....

My very hot husband!

I often write about Abigail. She is after all what took over our lives in the last year and a half. However I wanted to veer a little from that. You see despite the fact that we love her immensely we existed before her, and will continue to be an us after she grows up and begins pursuing her own things in life. So I thought I would write about the us. Well maybe more about the him part of the us.
Jason and I were friends for a year before we started dating. We dated for almost three years total before we were married. We have been married for 5-1/2 years. If you add that all up we have known each other for 9-1/2 years. He has been my best friend through some of the hardest things I've ever experienced.
I won't share all of the things he walked with me through, but for some reason today the memory of a night in college came back. In the beginning of my sophomore year I ended up in the E.R. two night in a row because of this uncontrollable twitching. The doctors didn't seem to know what was going on. Jason was there for both E.R. visits. He sang to me and prayed with me. There was a few days between the trips and an appointment with a neurologist. During that time I was still twitching so I couldn't carry a lunch tray, missed classes and a lot of various other activities became hard or in need of a buddy. We had been dating for a month. I was certain he would walk away because seriously who wants to date a crazy girl who looks like she is doing some sort of crazy dance moves all the time.
So after I went to the neurologist I was diagnosed with a rare seizure disorder. From there I had to do a test where I stayed up all night. I DO NOT pull all nighters. NEVER! This was my only one, and had it been up to me I would have slept. I like sleep. I don't know why people choose to stay up late.
Anyway I had a myriad of friends who offered their house (since I lived in a dorm with a roommate) and took shifts hanging out with me. When Jason came he brought me string cheese, Dr. Pepper and my favorite very cheesy romantic movie. These were my three favorite things at that time in my life. It was one of the sweetest things ever.

When Jason and I were engaged and first married everyone told us those sweet romantic feeling would go away. That we too would just be another married couple some day. I refused to believe them. Guess what. The feelings didn't go away. Even on really bad days there is still this part of me that can't believe I married such a hottie! Seriously how did I end up with him. Beyond his good looks though he is still kind and loving and caring. I am still madly in love with him!
I love snuggling on the couch, holding his hand, laughing together (which we do all the time), going on dates, and about a million other things that we do. I feel so blessed to have a wonderful, hard working, very good looking, intelligent, compassionate, and hilarious, best friend and husband. So I thought I would let all of you know that I am madly in love with Jason Adam Mann!

Monday, December 21, 2009

The things we say...

"I just know that someday you are going to get pregnant." "I'm waiting on your announcement because I know it's coming." "As soon as you adopt you are going to get pregnant." "If you would just stop trying you would get pregnant."
That's right I've heard them all. My guess if you have ever struggled with infertility you have as well. I also imagine that most people who have not struggled have said these things. It's okay if you are guilty. I am not going to call you out individually or anything. I am just going to pass on some information to help you know what to say to your next friend who confides in you that they don't seem to be getting pregnant.
Each time I hear one of these little things I cringe. I often know the person is trying to make me feel better. Even people who say things like..."it took us five years to get pregnant"... Part of the reason that I personally cringe is because people assume that we are devastated we didn't get pregnant and "had" to adopt. We aren't. I 100% guarantee that we are in no way upset about our lack of biological children. We are excited to dream about how our next ADOPTION will go. What will our next kiddo look like? Where will they be from? What will our next adoption look like? You know the questions people wonder when trying to get pregnant, just slightly different.
So to follow that up I will tell you that while we were waiting these comments made me want to rip out my hair. It often took everything in me to not argue with the person. You see, just because your friends tried for ten years and now have a beautiful little boy does not mean I should try for ten years. I could counter with something like well I have friends who have tried for 16 and still have no biological children. But I don't.
My response to that is two things. I don't want to wait until I'm almost 40 to have my first child. We wanted to start adding to our family four years ago. I also am fine with having adopted children and then getting pregnant ten years from now. I won't sigh and think "if only I had waited instead of taking care of these other children." My hearts desire was to be a momma, not to get pregnant.
I also don't believe adopted children are second best. People say things like "we want to adopt but we want children of our own first." Really? Maybe it seems like semantics, but when talking to an adoptive parent don't refer to biological children as "children of our own." Unless you have gone through the adoption process, the waiting, the heartache of not being chosen by a birth parent, the crying yourself to sleep...and on and on...then you have no idea how hard it is (the very same way I have no idea how hard labor is). So don't discount my child to being less than my own. She is my own in every sense of the word. She may not have the same genetic make up, but Jason and I had a child of our own first.

This posting is probably brought about by the number of people who try to "fix" us not getting pregnant. It's pretty amazing to me when people take this on. I don't mind when people ask if we can get pregnant, or ask if we have ever been tested for things. Some people do mind those questions, so don't ask someone unless you know then well. However, if Jason and I were really worried or upset we would have gone through more procedures to figure out what was going on. As it stands, neither of us have ever been tested for anything related to pregnancy. We just haven't gotten pregnant; therefore we decided to adopt. That's our whole story.
Jason and I haven't been "trying" to get pregnant (nor are we preventing it) for almost three and a half years. We tried for about a year before that. So it seems the "just stop trying" did not work. Also now that we have a 16 month old adopted girly and that didn't seem to have any sort of affect on our status of not getting pregnant that "once you adopt you will get pregnant" also doesn't apply.
So please if you have friends who are struggling ask what they need. Do they need encouraging stories about other people who have gotten pregnant? Do they need you to just pray for them? Most people I know who are struggling with infertility are talking to other people who are struggling or who did struggle and now have children. They are finding the support they need from people who know exactly what it feels like.

As a final little note I wanted to let you know that our belief from reading the Bible is that God sometimes closes wombs. We believe with every ounce of our being that when God knit Abigail together in her tummy mommy He had us in mind to be her parents. He knew that had we gotten pregnant we would not yet have been on the journey of adopting. So because He loves us so much and wanted us to have the exact baby He chose for us He closed our womb. I do not know if it is temporary or permanent. I do not worry about it either way. Our daughter is amazing, and I know that whatever He has in mind for #2 will be just as awesome.

Enjoying a child of our own,

Friday, December 18, 2009

It's over!

She's reading a book here with signs in it...this one means eat.

If Abigail can stay healthy for the next two weeks, we are done with doctors appointments until next year. So all of you should pause with me right now and pray that this would be the case! was Abigail's 15 month well check. We heard nothing but good news. I walked out feeling like I could breathe easy for a little while. Abigail has grown. She is now 30.5 inches. She is around the 50% percentile for both height and weight. I was so nervous about what was going to have to be done if she hadn't grown still. Her head size is still literally off the charts, but I will follow with some more thoughts on that in a minute. The doctor said she is developing well, is very intelligent and seems to be doing great. She had to get a few immunizations that were quickly forgotten with the sucker from Gayle.
Yesterday morning was our evaluation for physical therapy. The two woman who come to evaluate were impressed by her as well. She scored off the chart for cognitive function. So apparently the large head mentioned above does mean a smarter kiddo. :) She did great with their testing, and they agreed that maybe her trunk muscles were a bit on the lower muscle tone side of things. So she will start physical therapy once a week after the new year. I am not sure how long she will have to do it, but this seems like no big deal to me at all. A woman, who has come highly recommended by two sets of friends who have daughters who have had to have pt, will come in our home and essentially play purposefully with our daughter for an hour a week. Abigail I'm certain will start to love it (bubbles, toys that are new to her, being the center of attention), and I'm hoping to get some pointers of things I can do to help her as well. Works out well all around.
We also had her pulmanologist follow up on Tuesday. We got a great report from him. He even said if she makes it though winter with minimal flare ups/issues related to asthma that we may be able to decrease or stop her medicine for a time. What a great week of appointments.
On Tuesday after her appointment we went and got french fries and looked at the water and stuffed animals in Riley's foyer. I would have liked to have just left after the appointment, but since she threw up all the way there and then had to get undressed during the appointment (after I had just changed her clothes and washed her up in the car) and was then looked over by a couple of people she doesn't know I thought I should end the day with something fun for her. She loves the water. I let her throw in a penny as well. I had to forcefully make her let go of it, but she liked the splash it made.
These appointments seemed like the perfect ending to a year that has been filled with so much. Since May Abigail has been to six specialist...not to mention the numerous trips to the family doctor, and two trips to the e.r. The joyful little blessing we have has taken every last thing in stride. She sits so nice while the doctor listens to her heart and lungs, looks in her ears, squishes her belly....and on and on. She has been put under two times this year, and has come out of both her normal happy self (although angry after both because of how hungry she was). I just can't help but feel like we were owed a week of good things. Especially after our 14 week run of doctors every week.
So mama and papa are ready to celebrate the birth of our saviour. We are ready to not think about doctors or nf (although I don't think this ever totally leaves my mind), or procedures, or anything related to anything medical. We are ready for a new year and a new hope. After all she is our Tohelet...our little girl who has taught us to walk in hope.

Hope deferred makes the heartsick, but a longing fulfilled is a tree of life. Proverbs 13:12

Wednesday, December 16, 2009

The stay at home/working debate

Abigail and Papa at the Christmas tree lighting

This is my 50th post so I will attempt to make it a good one. :)
Who has things harder? This is a debate (I admittingly hate) that has gone on since woman started contributing to America's workforce many years ago. If you are reading this because you think I'm going to make a sweeping statement that shows which side is right you should give up and walk away. I am not going to do that.
I will start with some thoughts. There are few places in the world where I as a woman who chooses to stay at home and take care of our daughter (and house, and laundry, and dishes, and on and on) have to defend that. America is one of them. It baffles me how people attempt to make stay at home moms feel shameful. I was checking my daughter in before her MRI. The woman asking questions got to "Are you employed?" I answered "I take care of her" to which she responded by sighing loudly and saying "So you are unemployed." I was annoyed. Not because I care what she thought of me. I will never see her again. Because she apparently didn't see any value in someone staying at home with their child. I fit only the description of "unemployed." I will agree that I don't contribute to the gross national income. I will not agree that I fit the description of unemployed.
So then we also have this catch 22 here in the United States. If you are a mother and you are in some way part of the workforce, you are made to feel bad. Don't you care about your children? Or even some people who say things like, "I didn't have children to let someone else raise them." So I will defend this by saying we have a wonderful female doctor. She has two children. I don't know who cares for them while she is working. I do know that I am thankful that she is a doctor. She is amazing and has made having a child with special health care needs a smoother transition, and being a first time mom easier. So that is my biggest defense of an amazing working mother.
Beyond that there are all sort of little categories people use to defend their position in life being the hardest. Single parenting, parenting multiples, large families, parenting children with special needs...the list continues to go on. So I will now follow with some of my thoughts on who really has it the hardest.
Life is around 25% choices you make, 25% things that happen beyond your control, and 50% how you respond to the choices you made and the things that have happened (those numbers are completely arbitrary, I made them up for the purpose of my example). Anyway because of that the person who has it the hardest is the person who chooses to respond in anger, bitterness, sulking, and whining.
You see I know single moms who are amazing. They work, take care of their children, and manage their lives with joy and smiles. They have bad days, and they are allowed that. I know parents who have lost small children. Once again their response to the situation is what makes their lives "not the hardest."
I could choose to sulk because of how "unfair" things seem to be for us. I even do choose to sulk sometimes. However on the days that I choose joy and laughter I feel like I may not have the hardest life. I may have a wonderful life filled with immeasurable blessings. I have an awesome husband who is attractive, funny, and a wonderful provider. He is also an AMAZING papa. I have a beautiful little girl who makes me laugh all the time. I have a nice home, enough money to pay bills, buy food, and sometimes do something extra (like get a coke from McDonald's). I have a car. I could continue to list things, but I think you get the idea. I do not have the hardest life.
Parenting is hard. Their is no doubt or argument about that. No matter if you stay at home or work at the local grocery store. Lots of people have children, but to truly parent is a task that is not for those who are faint in heart. To parent means to put every ounce of your heart and strength (and sanity some days) into a small being who will at some point break your heart. Even if it is not on purpose. It might be easier to be passive and allow Abigail to break the c.d. player instead of spanking her five times a day for touching it. However if I don't teach her self control now (or at least work towards it) what does that mean when she is 5, 10, or even 20? What does that look like. So what I am saying here is as far as parenting is concerned, parents have it the hardest.

A little side note for my friends who are still walking through infertility. I am in no way trying to say my job as a parent is harder than infertility struggles. I too was there, and will some day want a second child. Your task of having your heart long for a child is incredibly painful. I am praying for all of you.

Loving staying at home,

Sunday, December 13, 2009

Sunday morning in the e.r.

There is a fear that one can only know when caring for a child. The fear that something is horribly wrong, but you can't seem to figure out what it is. Yeah. Abigail was sick....again. It was a weird chain of events that turned out fine in the end.
Abigail was fine when she went to bed last night. Slept all night. Woke up, took her medicine, played, just like other mornings. When I sat her down to give her breakfast the panic quickly ensued. I was giving Abigail yogurt. After the first bite she grabbed her cheek and started crying in pain. She kept signing hurt and grabbing her face. I tried giving her something else to eat (although yogurt seems soft and not something that would cause one pain). Everything was making it worse. Then I realized that her face was swollen on that side in front of her ear. I kept trying to think of any time she had fallen and hit it yesterday, just anything. Nothing came to mind, there was no bruise, and my brain was starting to think through scenarios.
The scariest one I could think of was of course a tumor. It fit the profile of a plexiform neurofibroma (it's not important that you understand what this is). However the fact that it appeared suddenly and wasn't on the MRI in November meant it would have been very fast growing putting her at higher risk for it being cancerous. So I'm watching the tears stream down my babies face and wondering if her face will be deformed. It is definitely one of the fears I have with the nf. It's not for vanity reasons. She is beautiful, and nothing can change that. It is more because I would like for my daughter to have a semi-normal life without getting stared and pointed at. So my thoughts were racing and my baby was in pain.
So I decided to take her temperature (not that it determines anything since she has had a fever for over a month now) and it came back over 100. I called the doctors office and the doctor on call said take her to the e.r. Ughhhhh...I don't like sitting somewhere not child friendly for hours with my daughter. I don't like having to deal with doctors who don't know her history. The more medical things that come up the less I want to see someone who doesn't have access to all of her information. I don't like feeling like Abigail is probably picking up a weird disease while waiting to be treated. I don't like the e.r.
But we went. It only took two hours total...truly amazing for not being a high priority case. At the end the nurse practitioner who was working came in's an ear infection that was also in her lymph node. I felt silly. I would have given her ibuprofen and taken her to our doctor tomorrow if I thought it was an ear infection. I couldn't have known, but felt silly none the less
So we are home, Abigail has acted fine the rest of the day and is on an antibiotic (again). Everything turned out to be not such a big deal.
All these appointments are taking their tole on Mama. I truly hope and pray that after Christmas we can go through a few months with no scheduled doctors appointments. I imagine that we will start her therapies after the beginning of 2010, but I think that seems a bit less stressful than all of these other things we have coming up.
However I imagine that we will be having some test to figure out why she isn't growing. We may be having an MRI to see if she has urinary tract reflex...and from there I know we will have a follow up e.n.t, well check, and pulmanoligist appointments in March, Neurologist in April, and ophthalmologist in June.
So I don't know if a break will come. I don't know if she will continue to get sick in between these times meaning more appointments. I am very ready for a break. I feel so wore out from all of the appointments. I have talked to lots of other parents whose children have special medical needs, and they all say the same thing I feel.
I feel like I have aged years in the past few months. There is something about walking through this that takes away whatever innocence an adult has left. Suddenly bad things can happen to us. The horror stories aren't just things that happen to a friend of a friend. They happen right here at our front door. Mostly that sucks. However there is something about this that is good.
That sounds like crazy talk doesn't it. However I know that I appreciate my husband and daughter in a way that I didn't before I knew that bad things could happen to us. I have always loved them both more than I can describe. However knowing that the promise of tomorrow is false means that I want to make sure Abigail knows how much we love her everyday. Even when she's whining and being disobedient; I don't want to take moments for granted. I hope that the turmoil and worry that comes in our life now spurs me on to be a better Mama and a better wife. If this doesn't change someone there is not much that would cause a person to evaluate life.

Now listen, you who say, "Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money." Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. James 4:13-14

Attempting to live our fullest today,

Saturday, December 12, 2009

As fast as House's staff :0

Mama, Papa, Abigail, Maggie(lab), and Myla(beagle).

The doctors office called yesterday. They called and left a message while I was outside. I didn't think to check until I got ready to make a phone call later. There was the message that we had a waiting message from American Health Network. I actually held my breath as I listened. Blood test came back normal!
I started crying. Weird huh. I have been nervous about other things. Abigail getting tubes in her ears, trying to figure out why her birth blood test came back abnormal (she carries sickle cell trait) and the MRI a few weeks ago. Although all of those things felt overwhelming I don't think I realized how worried I was about this.
We didn't really tell many people the specific things they were "ruling out" (which in my head means they may also be ruling them in). They were ruling out leukemia. Just to hear that word associated in any way with your child sends a parent into a frenzy. I know she is higher risk for leukemia and cancer because of her genetic disorder. I also knew that persistent fever and swollen lymph nodes could be signs. So I was scared.
The relief from the normal test sent me into tears. The blood work showed no signs of infection. So the fever is apparently just something that some kids with nf have although it hasn't been documented by doctors. It has been documented by other worried mamas. :)
We will have a few more test coming up. I think we will be having more testing because she still isn't gaining height at all. She hasn't grown since her 12 month well check....and has only grown 1.5 inches since her 9 month well check. So we will need to do a little more research.
We also have an evaluation by first steps (our states early intervention program) because of her poor muscle tone. We already know she qualifies because of that diagnoses, but I am still interested to see what they say. Abigail has this funny walk. She falls ALL the time still. I know toddlers fall a lot. However I have been around lots off toddlers and her falling is more. I'm pretty sure it's linked to the muscle tone. It's funny to watch her walk sometimes. She appears to be wearing big heavy boots. I'm pretty sure this is all related to the poor muscle tone, but we will see what they have to say...and what our doctor has to say at her 15 month well check on Friday.
We have her follow up pulmanologist appointment at Riley on Tuesday as well. It is just to see if her asthma medication is controlling it. From what we can tell it is. She hasn't had any flares ups since it got regulated in October. However we are also looking for a new home for our chocolate lab and beagle. She seems to be allergic. I have been cleaning more to prevent any issues, but we know we need to find new families for them. Anyone out there interested?
Other than that we are excited about holidays and family time. We have a tricycle for Abigail (a few months away before she can use it) and a baby doll. All we have left is a pair of pajamas and we have her presents. We can't wait to give her the baby. She has become very interested lately, and this one sucks it's thumb, can take a bath (but is still soft bodied), and opens and shuts her eyes. She is just at the beginning of being able to appreciate these things, but she will love the baby for now.
So I hope all of you are doing well. Thanks for all the support and prayers we receive from you. It means so much to us. As the chaos of next weeks appointments and Christmases ensue I may not write as much.

For now though, I am going to go take a nap,

Thursday, December 10, 2009

Waiting on...

Mama, Papa, Abigail, and Monkey

And so we wait. We are at a month of a fever ranging from 100-101. Abigail's only other symptom is swollen lymph nodes. We have noticed a few other things that may be related, but am not sure. I have patiently waited through numerous doctors appointments and maybe it could be's....

However we are passed the point of it being a virus (as well as she has no other symptoms of a virus) and on round three of antibiotic that isn't touching the fever. So when the second urine test came back clear I decided to be the crazy mom. I said can we do some blood work. I may be off, but shouldn't we start ruling out some bigger things. The doctor agreed. I think she was thinking the same thing already...I just said it first.

So today we went for blood work. We ended up taking a stool sample too...because of possible blood in it. I know that probably makes some of you a little squeamish. So the testing went okay. Abigail screamed through it, but they had to poke her three times and everyone thought she was cute so there were like 5 phlobotomist standing there.

Now we have a three to five day wait. I don't like the wait. I keep going over all of the possibilities of what it might be...over and over and over and over. I feel somewhat relieved to be getting either some answers or ruling things out. It's nice to be on that road finally, but also somewhat fearful of getting some answers.

Waiting is hard. House's staff never takes that long on television to get blood test results back. Apparently though we aren't on an hour long sitcom. This is real life. So we could use some prayers for always. And answers. And hope.

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

So we wait here, praying, trusting, and hoping in the mighty God that we serve.

Tuesday, December 8, 2009

Italy or Holland?

I'm letting go. Of what you ask? The idea of what normal is. The idea of what life should look like. MY idea that is. You see I have realized over the past few weeks that part of the reason that I feel so overwhelmed by doctors appointments is because they are not in my plan.
A long time ago...well maybe not that long...I had this image of what my "family" would be. I had this picture of my bulging belly. I could see Jason holding my hand as I brought our child into the world. I knew it would all be perfect and beautiful.
Well the bulging belly never happened for me. It was actually very easy for me to let go of that having a biological child. I know some people really struggle, but it wasn't that hard for Jason and I to accept that we would adopt and move on.
Then I had this idea of how our adoption would work out. Our adoption attorney would call and tell us a baby had been born and we could go pick her up from the hospital. We would get her and she would be perfect. That is not at all how it worked out. I am glad because Abigail's birth mom was amazing and I would have really missed out if I had not gotten to spend so much time with her.
So then once we had been chosen I felt like things were going smooth. The birth mother was awesome and let me come to appointments. She invited me to be in the room while she gave birth. She sat and told me stories about her and her family. It was great. Finally I could stop letting go of what I wanted. This was exactly what I wanted.
Then came the day of Abigail's birth. She was supposed to come out crying. She did not. She came out not breathing and they called a code. She was in the NI CU for three days but over all that went well and ended up being not so bad.
From there though I still had my thoughts. Abigail and I would be home together everyday. We would go to story hour, grocery shopping, read books, go on walks, and eagerly await Jason coming home from work everyday. That part is mostly true. For the first eight months aside from the frequent ear infections things were pretty smooth. Abigail was such an easy baby. Slept for eight hours at night at eight weeks. By four months was doing eleven hour nights. Did all of the "drop evening nap" and other things in the time the books said. She was not strong willed, slept in her bed, ate broccoli, drank know all the things a kid with an easy personality would do.
Then came the day that God showed me I needed to let go. The day of the beginning of lots more doctors appointments, lots more worry, lots more figuring out what I believed about God. That day I have written specifically about in other post, but that is not what this is about. This is about letting go.
I have gone through a range of emotions. First was bewildering numbness. Then came a period were I cried all the time. I have gotten angry. I have felt sorry for myself. I have been sad for my daughter. I sometimes feel all of these things on the same day.
I recently realized that I had been to a doctor with Abigail every week for 12 weeks straight. I don't know how to describe that realization. I am tired of doctors, and I can't imagine how tired she is of someone she is unfamiliar with looking her over, listening to her heart, holding her down, being there when she wakes up in an unfamiliar place...and so on. This was not on my schedule of things I would be doing as a stay at home mom. It isn't in there with reading books, giggling, and taking walks.
Once again though I am letting go. So we go to the doctor a lot. That is part of MY staying at home. Some families do all the things I listed and that's it. However God formed my little girl together in her tummy mommy's womb. He knew her and knew what her future held. He knew what my plans were, and He knew that they would be changed.
He knew that I would have to learn to let go. I believe every parent who has a child with special needs will tell you that you work through acceptance. Part of working through it is coming to terms with letting go of what you are still trying to hold on to. Letting go of what "normal" is and moving on with what your "normal" is now.
There is a poem that I thought I would end with because it describes well the feeling I am trying to portray.

Welcome to Holland
by: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not experienced that unique experience to understand it, to imagine how it would feel. It's like this...
When you are going to have a baby it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland!" you say. "What do you mean Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you have been there for a while, you catch your breath and you look begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy...and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland.

This poem is beautiful. So I'm learning to let go of Italy. I still talk to lots of people there. I have wonderful friends who I'm glad did not also end up in Holland. And I have met some truly amazing people in Holland. I am thankful for Holland. But am still sad about not being in Italy.

Our beautiful little Holland :)

Letting go,

Thursday, December 3, 2009

15 months.............

Okay a little bit of time has past since my last post about all the wonderful things about Abigail. Enough time that I think I should go on and on about her again. She is changing quickly. Not as much as in the first year, but learning new things all the time. I am often amazed at how intelligent she is.
She is officially 15 months. It's still shocks me how fast things go. I know everyone tells you this before you have kids, but seriously, it goes fast. We are still loving it and think that being parents is an amazing and wonderful thing. Abigail is a wonderful blessing in our lives that repeatedly leads us back to praying "please show us what to do because we are in need of Your guidance and direction in how to parent and what's best for Abigail."
So anyway let the story begin. As of two days ago Abigail walks all the time. She had taken steps before, but now if she falls she almost always stands back up instead of crawling. I still haven't adjusted to hearing her coming and turning to see her wobbly little body coming towards me...much slower than crawling at the moment. It also is still amazing to me because at nine months she couldn't put weight on her legs. I have not forgotten, nor will I ever forget, that God healed her. Six months later she is walking, climbing steps, dancing, clapping, and being a toddler.
She is picking up on new things at the speed of light. She has seen me blow my nose a few times so she has started trying to pull tissues out of the trash and blow her nose. I gave her a cloth diaper to use...a little more sanitary than used tissues.
She does motions to this little light of mine, He's got the whole world in His hands, I'm a little teapot, twinkle twinkle, and the itsy bitsy spider. She LOVES music. If she is awake she ask for it to be on. It is on so much that for the first time ever I enjoy the silence while she is in bed. She also enjoys playing the piano, drums (that I made), tambourine, and a few other little percussion type instruments that we have. She is musical.
Her vocabulary though is still the thing that when I think about it I am blown away. Between signs and words she is off the charts. I am going to list them all so you can be impressed too. For signs she knows: more, eat, please, all-done, thank you, no thank you, drink, water, milk, cheese, cracker, banana, apple, blueberry, sit, potty, brush teeth, stinky, help, book, music, train, airplane, up, down, shoes, socks, flower, butterfly, tree, light, baby, monkey, bird, hear, phone, hurt, hot, yuck, night-night(bed), Jesus and mama. A few of them are her own signs she uses, but she uses them consistently and we know what they mean. So the words she can say: all-done, down, mama, papa, dog, monkey, Maggie, Myla, stop, quit (those last two are courtesy of the dogs), shoes, bath, night-night, and teeth, I know impressive. My fifteen month old has nearly 50 words in her vocabulary and can put two or three together. She is so smart.
So to explain a few things from the list. The potty...she is so interested when I go. I am not trying to train her. I have a little one though so I pulled it out and said Abigail's potty and showed her the sign. She asks to sit on it. It never last long, so she is usually clothed, but it turned out to be a smart move. Yesterday we needed to get a urine sample to see if her uti had cleared up. She peed out of the first bag. I didn't want them to have to cath her. Soooo...I put the bag on her, sat her on the potty, turned on some kid songs (from the 80's) and gave her water. Within two minutes she had peed....and that meant no catheter! Hooray for Abigail liking to sit on the potty. I'm also hoping it will mean she will show interest earlier, but I'll take what I get for now.
The stop and quit are what we say to Maggie and Myla (our dogs) over and over and over for licking Abigail's face. She now emphatically tells them stop and quit as well. It's funny to hear someone that little try to use the same firm voice as an adult. It comes out sounding like a growl.
Beyond the walking and vocabulary she loves animals. She is getting pretty good with some of their noises. She can do a dog, cat, pig, sheep, horse, cow, owl, rooster, and turkey. Apparently snowmen and giraffes also make a noise similar to a cow, but we aren't sure why that is! She also does a train noise, sirens, and a cars with no mufflers. It makes living in the city with lots of noise a little more enjoyable. :) And it makes us laugh.
She is a lover. She hugs and kisses everything still. She loves her monkey and lambie. Monkey was her gift for the one year after adoption finalization day. Lambie was an Easter gift from grandma Brenda and grandpa Eric. They are her favorites. She has started calling for monkey (we taught her this) when she wants him. She yells "MON MON." It's cute. One the way home from Thanksgiving though we didn't give him to her because she gets car sick. So for about an hour off and on in the car she yelled for him. Maybe that wasn't the best thing to teach her?
She also has started insisting we kiss him when we kiss her goodnight. She makes a kiss noise and holds him up so I have to say goodnight to Abigail Tohelet Mann and Monkey Mann. I also though it would be funny to pretend to suck his thumb since Abigail sucks hers. She pretends to suck his thumb and now insist that Jason and I do as well. It's comical since she often has a foot or his tail instead of his thumb. :)
Abigail and monkey
Oh the stories I could tell going on and on. Ones that I think are way cuter than anyone else ever will. That's what parenting is though. So enjoy these and if you want more let me know. I'm certain I could think of some more great things to tell you about this little girl that we have fallen madly in love with!

Tuesday, December 1, 2009

Christmas Tradition

Our Nativity Scene

As a child I was allowed to wake up whatever time I wanted on Christmas morning. My two sisters and I shared a room and around 3-4 a.m. one of us would wake up, get the other two up, and go wake up our parents. We would go downstairs and unwrap gifts. Usually by 7-8 we had played for a bit and fell back asleep in various locations in our home. I love that my parents didn't make us wait until a certain time to get up, or eat breakfast first or go to visit our grandparents right away. I truly appreciate a lot of the traditions that we had.

When us girls got older and cared more about clothes my parents would give us money. Then on the day after Christmas my mom would take us three girls and we would all go shopping anywhere we wanted to go. We would go out to lunch, and just enjoy girl time and spending our money. My mom always said it was easier than buying something then taking it back. I'm not sure if that's 100% true, but it definitely made for great memories.

Now that we have a little girl we are trying to figure out some things about Christmas and traditions. We really want it to be about Christ and not presents. We want Abigail to know that Christmas is when we celebrate Christ coming to earth to live among us. It is also a great time to look forward to when He will return to take us all home.

I decided to do some research about advent (the season before Christmas that marks the technical beginning of a new year in the Christian calender). While researching I learned some really fun things that I think we might try.

First of all we have decided not to do Santa clause. I know...gasp, shock, the horror. It was a personal decision we made. We are truly fine with other people teaching their kids about Santa. For this reason we don't want Abigail to be the one who tells all the other kids that he isn't real. So we have decided to celebrate St. Nicholas day on December 6. We will put something sweet in Abigail's stocking and talk about the man who was later fashioned into Santa clause. Hopefully as she gets older we can explain why some people tell their children about Santa and then she won't go around telling other children that they are wrong. :)

We have decided to not do presents on December 25th. We will celebrate the birth of Christ on this day. The twelve days of Christmas begin at sundown on Christmas Eve. The last day is January 6th. It is known as the day of epiphany. It is traditionally celebrated as the day the wise men arrived with the gifts for the King of Kings. So we will do gifts this day and do three gifts each since that is how many Jesus got. I also read that lots of households move their wise men closer to the nativity scene each day and then add them in on the day of epiphany. We will do this because it is fun and a good object lesson to help remember why we are doing this.

A couple of other days in December I think we will celebrate are St. Stephen day and The Day of the Innocent. St. Steven day is the 26th and it is the day that we recognize the first Christian martyr from the book of Acts in the Bible. We thought it would be a great time to introduce bigger world concepts and teach her about people in other parts of the world who are being martyred....and praying for them.

The day of the innocent is December 28th and it is the day we recognize all the boys under 2 that Herod killed when he was trying to kill baby Jesus. We also thought it would be a good day to introduce the idea of children around the world who are suffering, going without, and dying. It will also be a time where we will eventually introduce the idea of abortion to Abigail and how many innocent babies are being killed here and now.

Obviously some of these concepts are a few years down the road since she is only 15 months. But it is great to already be thinking through some of the things that we want to teach her someday. We have also decided to do advent at home. I bought a wreath and candles. The four Sundays before Christmas and then on Christmas day we will read different parts of the Christmas story from our Bible and Abigail's Jesus Storybook Bible. We will talk a little bit and pray.

We did our first candle this past Sunday. We read about the angel coming to Mary and telling her she was going to have a baby. We read Mary's song together from Luke. We sat by the figurines of Jesus, Joseph and Mary we have with the shepard and animals. I don't know how much actually sinks in to Abigail's little brain. However yesterday and today she has pointed to the candles and signed light. She also has pointed to the figurines and signed baby Jesus. So even if she doesn't get the full concept, she is understanding something.

It is exciting to see the Christmas story again for the first time; to be the one to share the magical story of a baby born 2000 years ago. Conceived by a virgin, born to suffer and die for our sins; conquering death and sin so that we could have eternal life. I like that we are introducing new traditions, but Christmas is magical in and of itself...if you believe.

Enjoying Christmas through the eyes of our child,

Wednesday, November 25, 2009


Although I should be getting things to ready for our venture to visit family I have a little on my mind so I thought I would share.
We are going to Jason's brother's house for Thanksgiving. Everyone will be there. It will be full of adults talking, children laughing, and the general chaos that ten adults, one teenager, and six children bring. It's the good chaos where you are all together and love having family.
No matter what though, the introvert in me always fights with the excited part of me before holidays. I always look forward to the food and family and laughter...and I always dread not having me time. It has gotten worse over the past year as well. I am used to my life consisting of Abigail and I all day, and then Jason added in the evening. Even with that I sometimes need to get away by myself.
However this Thanksgiving has me thinking a little more about family and being thankful. I think it is because I am thankful to have a wonderful husband and daughter. I am thankful to look around and know that we have lots of friends. I am thankful that we have extended family, and that we get to spend time with them.
Since Saturday I have thought about our friend's who lost their home to a fire. The mom has been through a lot in her life. She lost a baby to SIDS when he was around 10 months. She lost a husband to cancer a few years back. And less than a week before Thanksgiving she lost her home to a fire. Every time I think about that all I can do is be grateful. I have a wonderful baby, husband, and home. I have lost none of those things...and I have much more beyond that!
So I am fighting harder with the introvert in me to remember that I will return to my introverted ways in a few days. For now though I am going to look forward to the family, food, laughter, and chaos. I have been given much to be thankful for!

Happy Thanksgiving,

Saturday, November 21, 2009

And they'll know we are Christians by our love....

A baptism at the river...and all of those present to witness.

I feel like I need to debrief from my day so this seems a good place to do it. It started out chaotic and just seemed to stay on that path all day. However it was also one of the most beautiful displays of the body of Christ I've ever been a part of.
One of the things I love about our lives is living in community. We moved intentionally into a neighborhood. We live within walking distance of most of the people we go to church with. We know our neighbors and are familiar with quite a few people who live in our neighborhood.
So this morning a group of us were at a house for woman's Bible study. Someone else from our church knocked to tell us that a neighbor's house was on fire.
Within minutes there was a group of people jumping in. There were people who were closer to the family hugging, talking, calling red cross. There was a few of us who took the three younger kids to a house to eat lunch and not worry about the logistics of it all. There were people who went into the house, when it was cleared, and bagged all the laundry. There are households washing load after load of laundry right now to get the smell out.
The family is in a hotel for the next two nights. Someone will go pick the kids up for church in the morning. Someone took them dinner tonight. Someone else will take them dinner tomorrow night. There is another person having all of the clean laundry brought to her house so she can keep it until they figure out what they are doing.
I was with the kids all day. I am certain that there were so many more things going on behind the scenes that other people weren't aware of. It was a horrible situation that reminded me of what amazing people I have in my life.
I can't begin to tell you how thankful I am for the people who have touched our lives since we lived here. It was interesting to watch everything unfold today. There are four kids in the family and each one seems to have a family from church they spend lots of time with. Their mom comes to our church sometimes, and goes to another church sometimes.
However I see this woman when I am on walks with Abigail all the time. She is one of the woman who tells me I am doing a good job on Abigail's hair and it means so much to me. I have known her children for five years. She and her family are part of our community.
So on my way home tonight I was glad that my part of the day was over. I was tired and ready to see my husband and daughter. I cranked up the radio and looked forward to the scream that would ensue from a sweet little girl when I got home. It was a little weird knowing that there was a family mourning and working through the fact that their house had caught on fire. I was done with my "shift" of helping. I would go home and pray for them and do some of their laundry. There wasn't anything else I could do, but there is always this weird feeling when you go home to your life and you know that the person you are leaving can't just go on with life.
However the cranked up radio began playing one of my favorite songs. It was the perfect words for the day....
"Everyone needs compassion a love that's never failing, let mercy fall on me. Everyone needs forgiveness, the kindness of a Savior, the Hope of nations." (Mighty to Save)

That's what this family needed. Compassion and the kindness of a Savior. That's what we are called to be as the body of Christ. A beautiful picture of Christ. I am so grateful to be part of this beautiful body. It is not perfect, but watching it in action today reminds me of the love we are called to show, and how fortunate we are to be part of a body that is great at showing this love.

In awe of the beauty I saw today,

Thursday, November 19, 2009


This is all Jason did until we could finally hold Abigail. You can look and tell how much he loved her from the first moment.

The same thing happens to me every night when I get in bed. I am exhausted from the day. Yesterday I was more exhausted than usual because I spent the day cleaning out closets, and going through the areas of our home where loose papers, and small items that we don't know what to do with go. So back to bed. I am so tired and ready to lay down. My head hits the pillow, Jason starts snoring and my head begins running at cheetah speeds.
I think about the day, the next day, Abigail, Jason...I go through what meals I will make and what groceries we need. Did I start the dishwasher? What was that noise? I go through the list of things I said to other people that day that were stupid, and how they are probably laying in bed thinking about how stupid that thing was. I remember the time the dog ate my nutty bar when I was three. I think about my family.
I was doing all of these things last night. I get more and more annoyed with each thought that my brain won't shut it's mouth so I can sleep. So then I go through the stop thinking, stop thinking, stop thinking, that man at the stop sign today went before it was his turn. Did I turn on the dishwasher? I forgot to clean out the fridge so I could put those dishes in the dishwasher. Will we get the results of the ultrasound tomorrow? Will they be normal? I'm sure you are loving hearing about what I think, but I am getting to the point.
About ten minutes in last night I felt someone sitting on the bed with me. You know the way a parent does when they are reassuring a sick child, or after a nightmare. I couldn't literally feel someone, but they were there. And I hear that still small voice that I love so much to hear.
I felt Him bend down and kiss all over my face, and He just said "I love you." It wasn't profound in the way some of the things He has spoken have been. It was exactly what I needed to hear.
There's this large part of me that longs so much for a daddy who loves me. I guess my dad probably does, but he doesn't talk to me so I don't know. When I see Jason with Abigail it makes me heart feel full. It is healing to watch a daddy love their daughter so much. It helps me to remember the way God feels about me.
There are lots of days though where I don't feel beautiful or loved. I don't know what my identity is. I don't know if anyone really likes me, or if I make a difference in the world. Maybe lots of other people feel this way, or maybe it's just me. And sometimes when I see how much Jason loves Abigail, how she lights up and screams when he gets home from work, and how after she's in bed he recalls things she's done (even naughty things) and laughs affectionately at how great she is; I am sad that I never had that. I am grieved that my dad does not, nor has he ever, felt that way about me.
So when I got that feeling of Him kissing me all over the face over and over again, I can't begin to describe how much it made my heart leap. This is something I do with Abigail. I just love her so much that I want to keep kissing her over and over until she pushes me away. To know that the God who created the universe feels that way about me, like He just can't kiss me enough, well that's all I need to get through today.
I hope and pray someday that my dad and I will be reconciled. However God has shown me through Jason, and Himself, what a daddy is. There is nothing more beautiful that a father and his daughter together. I am overjoyed that Abigail has a papa who loves her this way. I am also overjoyed that I have a Papa who loves me this way.

Enjoying the love of my Papa,

Wednesday, November 18, 2009

Isn't she wonderful!

Once again our little one is on an antibiotic. This time it is for a uti. I am thankful they figured out what was causing the fever, and that she did not seem to be in a lot of pain from it. She had to have an ultrasound today to look at her kidneys. She did so well laying still in the dark room with goop on her belly. She is our little amazing girl. She just seems to take everything in stride. Although I wish her life were not such that she had to deal with so much, her personality makes it feel easier.

However I do still feel overwhelmed. I can't tell you the number of antibiotics she has been on. She has some sort of infection every two or three weeks on average. There have been a few longer spells with nothing, and they felt nice.

I remember her first time being sick. She was six weeks old and I had been around enough kids that I wasn't too worried about it. However she had a fever so someone told me I was supposed to take her in. They officially diagnosed her with congestion. Not very exciting.

I'm not sure if it's from knowing her better now, or worrying about things I never thought I would, but I tend to not wait as long to call the doctor. The few times I have had to take her to a walk in clinic or a different doctor they have thought me a silly mom because she usually acts fine. However, every time she has something; an ear infection, strep throat...the list goes on.

I am getting more used to the fact that she is sick a lot. Some kids are. I wonder why she is since she is home with me all the time, and rarely interacts with other children. None the less it is who she is.

However I think during every illness large or small I have the thought of how crazy it is that she has to deal with the normal childhood illnesses along with asthma and nf. Even her normal ones usually bring about two trips (at least) to the family doctor. She also had to have tubes put in her ears. That's one of those minor things that feels slightly major to parents. It was scary at the time. Now it feels like a small blip on the monitor of things she has dealt with.

Yesterday when the doctors office called to schedule her ultrasound the woman on the phone was letting me know that the technician may need my help holding her and that some kids are a little afraid during the procedure. I laughed out loud. She paused for a moment and I explained that she had an MRI of her brain last week, I was certain Abigail and I would be able to handle her ultrasound; and she did.

I think that was the moment it hit me though that this is truly what our life holds. I don't feel sorry for us, nor am I bitter. This is just what it is. We will see lots of doctors, have lots of procedures, and deal with each thing as it comes. As I stated in the beginning, our daughter being so amazing makes all of it much easier!

Thankful for a wonderful daughter,

Monday, November 16, 2009

What is a mother?

Abigail breastfeeding at two weeks old.

I've been thinking for the last few days about being a parent. More specifically a mother. What makes a person a mother? At what point in the process of being pregnant is it okay to call someone a mom. If someone adopts at what point are they considered a mother. This isn't because I'm having some sort of crisis about being an adoptive mother. I feel very secure in my mother status and believe God chose me to be Abigail's mother (and Jason her father).

However I was trying to recount when I started to feel like a mom. We waited on Abigail for three years. So the moment I opened my heart to hoping in what God had promised...was that the turning point where I unofficially became a mother. My gestation was nearly three years. Sure I didn't have the growing belly and some might argue that mine was easier, but physically less stressful does not make it easier. So back to the mother thing again. Did the transition occur when Abigail's tummy mommy (we will call her V) called and said that she wanted us to adopt her baby. Was that the day I could start walking around saying I'm a momma?

I am still unsure. It's harder for me to figure out as well. Because V was an amazing tummy mommy. She took care of Abigail and herself so that her daughter could be healthy. So I will never discount that fact that she is Abigail's momma. We might share that title, and that may feel threatening to some, but she loved with an unselfish sort of love.

The dictionary defines mother as a female parent. It also refers to maternal tenderness and affection. So I am a mother in the true definition of the word. Some woman argue that only giving birth makes this true. Some would say that they mother the children they care for while parents are at work or doing other things.

So not to long after Abigail was born I had a child tell me I wasn't her real momma. The child is kind of a punky child and was trying to anger me (although I didn't let him worked). Since that day I have wondered about the idea of being a real momma.

This particularly struck me because of the situation this child is in. His mother is close to double digits in the number of children she has. The older ones take care of the younger. The range in age from 18 to the youngest who is the same age as Abigail (a little over a year). The younger kids prefer the older girls that take care of them over their mother. Their mother is partially a victim of generational poverty, and partially a victim of making bad choices. We won't go into that here. However I just kept thinking about this child telling me I wasn't Abigail's real momma, and what being a real momma meant to him. I never asked, and probably never will. The child was too young to understand life outside of you didn't give birth.

I will say though at this point that I don't think I would handle a comment like that well. I have covered my love for V and am not discounting her roll in Abigail's life. I will say though that I cut the cord when Abigail was born, and since then I have taken care of her (as well as papa of course, but this is about momma). Although V came to visit Abigail in the nicu, Jason and I were there through all of the test, listening to what the doctors said, and feeding her when she was finally allowed to eat. As soon as we got legal custody of her I began breastfeeding (that's right you can do that) and was up every three hours (with my husband by my side...he does need some credit for that) trying to figure out how to nurse her with a supplemental nutrition system. When we got home Jason still helped with middle of the night stuff (making the formula, changing things) but once again I was the only one who could feed her. I took her to all of her doctor appointments. I got spit up on. I changed poopy diapers. I took her for follow up blood test. I held her when she got shots. I worried through the legal process before everything was official. I made all of her baby food, washed her clothes and diapers (once again yes, we use cloth diapers). I am with her nearly all of her waking hours.

Somewhere in there I am certain my status of mother, if it had been questioned, became official. Over the next few months though I took on more things and these are the reasons I would get pretty defensive now if someone said I was not her real momma. I have sat through SO many doctors appointments, spent hours upon hours researching, worrying, and losing sleep. I have written everything down from doctors appointments. I have kissed her when she fell down, held her in the middle of the night when she was sick, sat through her ear tube surgery, and a MRI.

I am the one who has been there for everything. I am unquestionably her momma. She would tell you that her 14 month old way.

However as I think about this I also think about friends who have struggled through infertility. They may not have the pitter patter of little feet in their home, but I have never seen such mother hearts. Does not having children mean they are not mommas. Sure the definition might not work in that case, but still I wonder.

So here I would like to pose an open question. What do you think? What makes someone a momma? When do you become a momma? Does having children make you a momma? Does not having children make you not a momma?

Wondering about the bigger picture,

Saturday, November 14, 2009

How nf affects us emotionally.

Our wedding day passionate kiss!

My heart hurts. Not like call 911 because something is wrong, but the aching sort of pain. There have only been a few other circumstances where I could say that I physically could feel the hurt. The death of my grandmother, living far away from Jason while we were dating, and waiting on a baby. And as the first sentence says it hurts now.
Nobody could prepare a parent to deal with the news that their child has an unpredictable disorder. For that reason nobody can tell you how you will react. There is an element of all the doctor's appointments, medical knowledge being thrown at you, really hard medical decisions, and just fear that causes so many emotions that a person does not know how to respond.
This turmoil often causes us to respond to each other with angst. Yes that is right we are sometimes so frustrated and angry about everything we end up fighting with each other. I imagine that many people in the situation we are in have similar responses. About once every two or three months something will come up and all the stress from it will build up and explode some night after Abigail's in bed.
Last night this is what happened. I am worried because Abigail runs a fever...a lot. She has had one over 100 for over a week. There only other symptom is a slightly enlarged lymph node. I start to look at what can cause this in a child with nf. There are only a few possibilities listed. I have talked to other parents who have kids with nf and they have had lots of unexplained fevers. Perhaps it is just some sort of fluke that no doctor has ever recorded. Perhaps there is something else going on that we need to investigate more.
Talking about this and what the possibilities are causes us both to be scared and lash out. Nobody tells you about this part of nf. The part that affects families emotionally isn't listed as one of the things that could happen with nf...or any other issue that a child may have. It's the thing that can bring about division in family.
We have talked since day one about how important it is to be okay with the fact that we deal with this differently. Studies show that when a family loses a child or deals with a chronic illness the reason for higher rates of divorce is because each person is frustrated that the other person is not dealing with it "correctly." We both need room to respond how God made us to respond. I tend to research everything. I need to talk to people who are dealing with it as well. Jason seems to be able to take things as they come.
Even being aware of this and intentional we still sometimes get frustrated with the other person and end up fighting. I hope that as we move forward into this; the fighting over this it has with everything else. No matter what lies ahead we will persevere. This is one of the beautiful things about our marriage. In 5-1/2 years we have been through much, and with each trial we grow stronger, and closer together.
After an hour and a half of talking, me crying, and some raised voices last night all I could think is I wonder how many other people going through things feel lonely like this. At the end of our discussion we were both fine. We had come to a point where we acknowledged that how the other person felt was good. In the end we both want what is best for Abigail. Knowing that makes it easier to work through what the other person believes.
So the true reason for this post was just me thinking about how many other families are dealing with this exact same thing. How many other people feel lonely and frustrated and wondering if their reactions to what is going on is normal. I would say yes. Whatever your reaction is...anger, frustration, sorrow, fear, whatever it is normal and acceptable. It is okay sometimes to lose it with each other as long as you come back together in the end.
I want others to know that the only reason we are making it through this is because we have Christ. There is no other way that our family would make it through this or have any reason to make it through this.

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 16-18

Looking forward to the eternal as we may our way through the seen,

Thursday, November 12, 2009

MRI results

How we all feel right now!

The call came early yesterday. The MRI was normal. I literally could have ran laps outside screaming. I was so happy and relieved. I was on a high for an hour or more. I did eventually come back to reality and realize that this means there are still a few things going on we need to figure out. However the fact that whatever is going on is not being caused by a brain tumor is comforting.

So we are back to enjoying life with a toddler. Those who have nf or parents of those who have nf will tell you that though there is so much comfort in having an appointment where everything comes out okay, but there is still this part of your brain reminding you that the future could be different.

For today though, Abigail is fine. And that is all we can do is live, and be thankful for today. Tomorrow has enough worries of it's own. Today we are going to celebrate Jason's 30th birthday. It's nice to be celebrating without a cloud of fear, or horrible news hanging over our heads.

Celebrating life,

Tuesday, November 10, 2009


And the MRI is over. We don't know the results, but the actual test is done. I thought I would tell you about the day because I don't know how long results will take, and I don't know how soon after we find out we will want everyone to know. Everything is dependent on what is found out. So for tonight...we will focus solely on today.
Abigail got up at her normal time and we got ready. She didn't seem to notice that I skipped feeding her breakfast. She played and was happy as I finished up the morning. We left a little after nine. We didn't have to be there until 11:15, but I am still not a confident Indianapolis driver and this was my first solo Riley trip. She did great on the way down. She puked a bit, but since there wasn't much in her stomach there wasn't much to puke up. She feel asleep about fifteen minutes before the parking garage. I'll take it though.
So as I parked the car I confidently walked in the hospital knowing that I had faced my fear of driving to the parking garage...and conquered it. Didn't even have to turn around once!!
Our first most trips so far was to change out of pukey clothes. We are getting good at being prepared though. After that we walked to the main Riley building and looked at the water and all of the stuffed animals. Took the glass elevator up to the second floor and checked in at day surgery.
From there we went down to the MRI area and waited some more. It was around 12 or so and she was starting to sign eat but I just kept ignoring her and she didn't ever get upset. This is truly amazing to me. Abigail loves food, and tends to be persistent when she is hungry.
They came and got her and I got to stay until she was under. It was pretty hard and sad for me. She cried as they held the mask over her mouth. When she was asleep they moved the mask so I could kiss her goodbye. It was so sad she had little tears on her cheeks and I was supposed to leave her. I kissed her and walked out.
As I got to the waiting room I was fighting back sobbing. There were lots of other people there. I looked over and their were magazines laying there with their normal headlines. I truly thought how could anyone read this while their child is having an MRI. Maybe they do. None of the other parents that were waiting with me seemed to be interested in the latest Hollywood gossip.
After what felt like hours they came and got me. She did great and was pretty much herself again once we got food in her.

Over all the day went really well. We were at Riley for quite some time, but once again our baby bug proved to be her usual easy going self. I wonder if I will ever get used to all of the appointments and worrying. I wonder if at the end of these days my body won't be full of tension pain. Mostly though I still just wonder what our future holds.
Mostly though I feel like although we don't know yet what the results of today's scan will be I am thankful. I am thankful that we live in a place and time where we can get amazing health care for our daughter. I am thankful for medicaid and that they pay for our visits to the doctors and specialist. I am thankful that I have the physical and emotional strength to be there for our daughter.
I am most thankful that we have the opportunity to raise a wonderful little girl. No matter what has happened and what may come I would not trade a single day. If anything was different then we wouldn't have Abigail. She wouldn't be the joyful and funny girl that we love.

Oh and the night before she started walking so here's a little clip of that! Enjoy...we are.

Learning to be content in all circumstances,

Monday, November 9, 2009

The day before....

I feel pretty messy this morning. The messiness has ensued since last Tuesday and just seems to be growing by day. Saturday I was trying not to cry all day. We got an invite to a backyard bonfire and it was fantastic. Hanging out with everyone, talking, and laughing is great medicine on days full of fear. Sunday felt the same. This morning...I am no longer trying not to cry...just trying to make it through the day....trying hard not to let the possibilites of what lies ahead swallow me. It feels like it might though.

So many fears come with nf. I don't think I have ever listed all of the possibilites on here. They are permanatly stuck in my head. Here is the definintion and possibilities.

"Neurofibromatosis involves the uncontrolled growth of tumors along the nervous system, which can result in terrible disfigurement, defornity, deafness, blindness, brain tumors, cancer and death. While not all nF pateints suffer from the most severe symptoms, all live their lives with the uncertainty of knowing whether they too will be severly affected because NF is a highly variable and progressive disorder."

The list of things that could happen:

Brain Tumors, Deformities, Spinal cord tumors, headaches, deafness, pseudoarthrosis, scoliosis, cancer, pain, learning disabilities, seizures, paralysis, high blood pressure, blindness, short stature, macrocephaly, hydrocephalus, death...

It's scary. That is all there is to that. Nobody given this information for their own life could go through it without wondering what is going to happen to me? Which ones from that list are going to be what I am dealt? Most of the people I have talked to have doctors who seem so passive and dismissive of all of the issues. Doctors who say things like your pain can't be that bad, or your tumors may be noticable, but they aren't interfearing with functioning.

Abigail's case is still "mild" at the moment. I am thankful that we have bypassed some things already that are possibilities. However I feel tomorrow could pull the mild out from under us. It could take us to a new level. I mean your case can only be considered mild until you know otherwise...and tomorrow we will have an MRI of her brain. If they find something, anything, it means we aren't dealing with mild anymore.

Most parents think about their kids future. I wonder what she will be when she gets older. I wonder if she will go to college, and what her passions will be. I wonder who she will marry. Those things don't go through my head as much. As her list of mysterious symptoms grows and we get ready to find out what is going on I often wonder if she will grow up. Will this beautiful child who has taught me to love with reckless abandon ever get to have her papa walk her down the aisle...or will she be walking on streets of gold with her Heavenly Papa?

Children are a blessing from the Lord. Even when they are throwing fits, yelling, have poopy diapers, or throw food on the floor, they are still a blessing. Even when they talk back, sneak out, and make bad decisions, they are still a blessing. When they move out get married, and start a life of their own they are still a blessing. I hope that we get to enjoy our blessing for many years to come.

Friday, November 6, 2009

My scattered thoughts...

Just our daughter being her beautiful self!

I'm feeling all over the place hear lately. Not literally, more mentally. I have about three streams of thought process going on and I want to write about all of them. So I will try to neatly organize and collect my thoughts for an A+ English paper....or I'll ramble about each thought. Either way, here we go.

First I've been thinking a lot about things I believe. These are good things to think about. What do I believe about...? So lately there have been a few verses in my head that I wonder about. They all have to do with being healed, and seemingly say if you pray, believe, etc. you will be healed. And then I think about Paul. He did all of these things and wrote a large portion of the new testament. Guess what. He wasn't healed. So then I've been asking God what does this mean. He did heal Abigail of something over the summer. So we go from there to...

I've had a lot of people tell me lately I couldn't do what you are. I couldn't handle my child having something medically scary. I would go insane, and to be honest I sometimes feel like I might be. Then there is still this idea (I know it's becoming a bit of a theme) that God doesn't give us more than we can handle. I have yet to find that in the Bible. I do think though that more correctly God gives you the grace to handle whatever it is that you are going through. His grace is sufficient because His power is made perfect in my weakness. Believe me, dealing with all of Abigail's medical stuff has left me weak...

So back to this first thought with my third thought. The past four years of our lives have been crazy. A quick overview. Decided to go for it with kiddos...weren't getting pregnant. Felt like God was calling us to adopt. So we prayed some more. Clearly He said have a home study and wait for your baby. It will be a girl, you should name her means father's joy...she will bring you and Jason joy, but she will be my joy. Okay. We did that. Here we sit with the baby that we did not strive for. We waited on God and the situation for the adoption, the birth mom, the wonderful daughter, none could be a more perfect story than the one He wrote. Fast forward around eight months. Sitting in a specialist office for some final clearances of she's healthy. Doctor starts talking about au lait spots...and tumors. I nearly fall over. We had said we would have been fine with a child with special needs. And we are. I just had in mind something like downs syndrome.

Go from there to where we sit today. Yes nf sucks. Sure I don't understand why. However God knew from the moment she was formed in her tummy mommy's womb that she would have nf. He knew we would be her mom and dad. He knew we would have what it takes to get through this. Not because we are super human. Because we are followers of Christ. He knew His grace would be sufficient for us. Hopefully this brings it full circle and connects it all...

I started reading Hosea yesterday. It is an interesting book. The overview is that God tells Hosea to take a prostitute as his wife. She is unfaithful, they have children that are most likely not his...she continually betrays him. However he goes out and disguises himself, buys her and brings her home. He loves her and is committed to her. It is supposed to symbolize how Israel prostituted itself and God has continued to love and redeem. And how we do the same, turning away from God and running to other things even though everything we need is right here at home. As I was reading I kept thinking this makes no sense to me. Why would you tell a man to marry an unfaithful woman. How hard that must have been for him.

Then I quietly hear. The same way that nf doesn't make sense to you. I do things to teach people about me and to bring glory to me. Immediately I am reminded of all the people who have talked about how faithful they see Jason and I being. It's not a moment of pride, but a moment of realizing (again) that if our lives point other's to Christ that's all that matters. We went to a David Crowder Band concert last night, and although I loved this song before there was a line that sort of punctuated the end of the thoughts of the last few days. You should go on YouTube and listen to it, it's beautiful.

David Crowder Band: How He loves

"When all of a sudden,

I am unaware of these afflictions eclipsed by glory,

and I realise just how beautiful You are,

and how great Your affections are for me."

Amen. In the presence of the Almighty, the passing troubles of life seem to be eclipsed.

Saturday, October 31, 2009

Our nf appointment

Abigail enjoying the water in Riley...

Abigail walking around in between appointments...

The first neurologist appointment has been completed. We went, we saw, and came home tired. Over all it was a pretty great day considering it was spent entirely at Riley Children's Hospital outpatient. Abigail only got sick once on the way down...and we were so prepared that we didn't have to change her clothes or wash her car seat again. Her sweat test worked this time (and she does not have cystic fibrosis). So we won't have to do that again. Her hearing is great. We ate McDonald's for lunch (and Abigail had her very first happy meal...judge all you deserved some fast food), and Abigail loved all of the stuffed animals and water fountain in the hospital. She loved being able to walk holding our hands.
The neurologist appointment was this afternoon. First of all we came to the waiting room and there was a mom with her two kids. They all had nf. I doubt that others would have been able to look at them and tell, but all of my research has brought me to a point where I saw it right away. Then we waited and Abigail played for a while. I overheard someone telling someone else that this was the nf clinic...the disease the elephant man had. I nearly said something to them...but contained myself before I caused a scene. The elephant man had proteus syndrome. Not nf. For some reason though he is still associated with this disorder.
When our turn came we were both feeling...fine, calm, and ready to face whatever the Doctor had to tell us. We saw a med student first...went through history....other health issues....and on and on. Then the doctor came in and examined her. Annoyingly he still can't "officially" diagnose her.
Nf1 has a list of things that can get you diagnosed. You must have two. Abigail has two...sort of. You have to have 6 or more cafe au lait spots that are at least 5mm. She has 30 cal...but only five that meet the size criteria. You have to have groin or auxiliary (arm pit) freckling. She does...but she only has two freckles...and you must have three. So we are one cal and one freckle short of making it official. For those of you who don't know about nf she will eventually meet the criteria as things appear more as the person ages.
The last part is the only thing that is sort of scary as a parent. Abigail has macrocephely (a large head)...which we knew. It is also very common with nf. She apparently has lower muscle tone as well. On top of that she has not grown at all in height in the past few months. So the things these could point to are hydrocephalus (which is also something that can come with nf) and a tumor somewhere causing issues. So next Tuesday we will go back to Riley for a brain MRI.
So overall the day didn't feel good or bad. I think we had researched enough that we were not shocked by anything he told us. We aren't very upset about any of it right now. I feel like we can feel the prayers of the saints washing over us with peace. We are not fearful.
We are grateful to be surrounded by people who love us and love Jesus. There is something truly peaceful to be sitting and knowing that people all over the state, country, and a few in other countries are praying for us, and thinking about us. So thank you everyone. We appreciate all of you more than you will ever know. We will continue to update when we find out more.

Filled with the peace that passes understanding,

Tuesday, October 27, 2009

As the day draws near.

It is slowly making it's way into my thoughts again. It is like it has sort of crept up slowly and now it's moving at full speed. We have one week left until our first nf appointment. For the most part I have prepared myself...I think. I am fairly certain that the diagnoses will be made official. From that though, I don't know what else to expect. I don't know if they will want to schedule an MRI, or x-rays, blood test, appointments with a geneticist, or oncologist. I just don't know.

And that is the part that has me lying awake. The unknowns. What if they find something. What if she has a horrible tumor already that is slowly causing her more and more issues. What if.....I can't even bring myself to write very many of the other things I can think up. So I find myself attempting to fill my time with reading and checking facebook. My mind numbing housework is hard to do because everywhere are small reminders of Abigail; and they nearly always lead me to thoughts of the appointment.

It is the last appointment that we have to make it through for a month. That is granted that she stays healthy. A month might not seem like very long, but we have been to at least one doctor appointment every week for the past six weeks. A month off would be a huge relief. I'm glad we are knocking out three appointments on Tuesday as well. It means that we will be at Riley ALL DAY, and that we will most likely have a tired crabby kiddo, but it will all be done.

Since my goal of this blog is to be honest and informative I will tell you I am scared. I am scared for my daughter and what her future holds. I am scared that she will have a severe case of nf and go to be with Jesus well before I am ready to let her go. I am scared that I don't have what it takes as a mom to do what's best for her. I am scared that she will be bitter at God one day. I am scared that my heart will break from the pain I feel and the longing I have for her to not ever have to face this sort of disorder. I am just scared.

Since I am being honest I will also tell you that I don't want to hear that God only gives me what I can handle, or that He has some sort of purpose for this. I have said this before and will say it here. God did not give this disorder to my baby. He is not testing me or Jason. He isn't trying to find out how much we can handle. She has a disorder because the world is a fallen place.

Psalm 121
A song of ascents.

1 I lift up my eyes to the hills—

where does my help come from?
2 My help comes from the LORD,

the Maker of heaven and earth.
3 He will not let your foot slip—

he who watches over you will not slumber;
4 indeed, he who watches over Israel

will neither slumber nor sleep.
5 The LORD watches over you—

the LORD is your shade at your right hand;
6 the sun will not harm you by day,

nor the moon by night.
7 The LORD will keep you from all harm—

he will watch over your life;
8 the LORD will watch over your coming and going

both now and forevermore.

I am thankful that my God is watching over my baby. He is much better at it than I will ever be. I need to sleep sometimes. He holds her all the time. Just like Abigail so sweetly sings;

He's got the whole world in His hands,

He's got my baby bug in His hands!