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,
Wednesday, November 25, 2009
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
Papa
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 know...it 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 diaper...dad 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 too...in 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 decreases...as 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
AAAAAHHHHHHHH......
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 stop...like 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.
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 stop...like 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.
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 Abigail...it 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 nf1...cafe 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.
Subscribe to:
Posts (Atom)