Tuesday, November 30, 2010

and again why we pray.

Okay first of all if you haven't yet please read "Why we Pray." It proceeds this post and will help you follow the whole story a wee bit better. I'll wait here until you get back.
Welcome back. So the rest of the story goes something like this. We first found out about NF in May of '09. Abigail was mostly diagnosed (this is a little complicated to explain) in October of the same year. I'm not sure how long it lasted, but I spent many months...probably close to a year in a sort of fog. Every new spot, cry, and bump on her skin sent my head into a spin. I sat worrying about all of the worst things that could happen. I'm sure it didn't help that in that time period she was also diagnosed with asthma and tested for leukemia. None the less, I felt like someone had screwed up my whole world. And like the Israelites, even after seeing God touch my daughter's body, I still wavered crying out to God, "Where are you? Did you bring me into parenthood only to take the little girl you blessed me with in the first place?"
But somewhere in there I began to not just speak it, but really believe that God was still who He said He was. He was still good. He didn't give this to my daughter. It happened simply because of the sin that is in our world. When man fell in the garden, death, disease, pain, and suffering were introduced into being. Fast forward quite a bit and you can look around and see the effects of sin coming into the world. One of those effects is the disorder neurofibromatosis.
Somehow though, almost miraculously, over the last six months I have found peace. I have begun living again, and even with lots of crazy things still happening, new little things coming up, and three MRI's since June, I have been fine.
The honest truth is that it's still painful. Not knowing how much suffering my child will endure, but knowing that she will most likely experience pain is grueling. But over the last year and a half God has strengthened me. I feel like I can endure whatever comes because I know He is there.

"The Lord gives strength to his people: the Lord blesses his people with peace." Psalm 29:11

He also does all things at just the right time. If they had found any tumors in the beginning of our journey I would have possibly had a mental breakdown. That is not an exaggeration. But on Wednesday when we got the preliminary results of Abigail's MRI and found out that she has a tumor I felt strangely peaceful.
I have spent time grieving. It is sad to me that the pain she is experiencing in her leg (and most likely her back from compensating) is because of something being in her leg that shouldn't be. The incredible itching she has in her leg is also from it. But I have not for one moment questioned God. My faith has not wavered.
We still do not have a more precise statement from the doctor yet. But it is most likely that the tumor is congenital. It has always been there. It has been the reason for lots of little things going on with her.
I have sat over the past week of knowing and wondered if we hadn't prayed if she would have ever walked. I don't believe Abigail's healing rest on my shoulders, and hope that it doesn't depend upon my faith (or she is in trouble). I do believe that our God is good and wants to hear from us. He wants us to pray, ask, talk, and cry out. He doesn't always answer the way we had hoped. But He does always answer. And for that reason we will continue to pray.

*Just so you all know we have waited to share so we had time to process before going completely out there with all of it. We still do not have all of the information yet, and will not share things until we are ready.*

Please join us on our knees for our daughter,

Friday, November 26, 2010

Why we pray.

At nine months old Abigail couldn't/wouldn't put weight on her legs. If you held her up to a standing type position she would stick her feet straight out. If you put her in the exersaucer they sort of just dangled. We had just found out that she had NF1. I had known for a while she wasn't putting her legs down like most babies did, but kept it stored away for "just in case." So I mentioned it at her nine month check up. The doctor thought it constituted further investigation, and ordered an MRI. Insurance denied it.
So at this point we were stuck trying to figure out what to do. Our pcp could appeal to our insurance company. We didn't have an appointment with the NF clinic until October (this was July). Or we could apply for a state insurance specifically for children with special needs that MIGHT cover it. I felt so helpless to figure out what was going on with our baby.
I was reading in James one night and had to stop at this part:
"Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up." -James 5:13-14
I immediately felt like God was asking me to be obedient to His word. I didn't feel like He would or wouldn't heal her. Just that His word said to have the elders pray. So we did. And a few night later our pastor and his wife and children, as well as two of the elders and their families came and layed hands on Abigail, anointed her with oil and prayed. I could feel God moving. I didn't know what He was doing, but knew that He wanted to show Himself.
Before they all left our pastor's wife held Abigail up and she put weight on her legs. I was astonished, and wasn't certain if I believed it. I couldn't get her to do it again and thought it was probably just a fluke.
The next day we were playing at a friends house whom I had told all of the previous too. I was showing her how Abigail couldn't put weight on her legs, but instead all she kept doing was standing on her legs. I was nearly in tears as I watched it happen.
Over the next few months Abigail began to crawl finally, pull herself up, and eventually walk. With each new milestone I never forgot that God healed her. We didn't know if there was a tumor somewhere He had healed, if the leg issues were from her low muscle tone, or if we would ever know what He had healed. We simply rejoiced at our God's ability to perform miracles. And I still look at her sometimes, standing, dancing, jumping, and (making an attempt at) running and know that God did something, and has something awesome planned for her life.
There is more to this story....so you will have to stay tuned.

Tuesday, November 23, 2010

What do you ask for?

As I sat reading in Psalms this afternoon I could feel my heart stirring. I love the way David writes so truthfully; how his emotions are so much like mine floating up and down with each new twist and turn of events. I also relate because I express my thoughts and emotions much better by writing them down.
After I layed the Bible down I sat there thinking and trying to pray. I say trying because with each fleeting thought all I could come back to was 'I don't know what to pray.' I don't know what to ask for on behalf of my sweet girl going into tomorrow. Peace, comfort, and mercy are almost always at the front of it. But beyond that what else do I ask for.
I can pray that they don't find anything, but in reality they might. I can pray that if they find something God is able to be glorified by our response as well as Abigail's response throughout her lifetime. I can pray for answers.
I then sat and thought about what do I ask for my friend's children with special needs? I generally pray whatever it is they ask for; healing, comfort, peace, and so on. But what if I ask for the wrong thing for my baby. What if I should be asking only for the strength to walk through, but I am asking for answers. And certainly there are no "wrong" prayers. God wants us to ask for things.
As I sat there thinking though, the sweet little prayers that Abigail prays flowed through my mind. They are often something like this, "Jeyah, Guy, boo-boo, help. Sarah, boo, ahhh! Mamal atar, cupcake. Noo noo ding ding. Amen."
I doubt very much of that made sense to any of you. But as her parent, I know what she is trying to say. I know what she is asking for, and I love that she just tells Jesus things. Sometimes her prayers are even more simple than that. I was then reminded of yesterday morning. We woke up to rain. Abigail loves to go outside when it's raining. By the time we ran our errand yesterday morning it had stopped. She asked me if I could make it rain and thunder. I responded by telling her that mama couldn't do it, but she could ask Jesus. She stopped as we were walking into the store and said, "Jeyah, rain, thunder. Amen." Last night as I was sitting on the couch and it began raining Jason looked at me and said, "Is that thunder?" I couldn't help but find the beauty in it. My sweet little girl asked Jesus to make it rain and thunder during a time of year where we are often seeing snow. And it did just that.
So after thinking all of this through I decided to try to pray more like my daughter. My prayer going into tomorrow is simply this, "Jesus, Abigail. Amen."

What do you pray for you children?

Monday, November 22, 2010

As the day draws near...

I've been trying to write a post all day. But all my thoughts just keep getting jumbled together and not making sense. So I erase it all and start over, only to find myself not being able to say what I'm trying to say. So here's the fifth try today.
I am starting to feel the "just before MRI" nerves kick in. They make me want to call and cancel the MRI. They also make me want to demand that they give me the results that day. I got "the" phone call today where they go over the list of Abigail's diagnoses and special needs, arrival time, and when she can no longer have food and drink beforehand.
It feels MUCH scarier this time. Because before we didn't know about the possibility of mastocytosis; and she may not have had it then. And now, the whole time she is having the MRI I'm going to be wondering if she is having a reaction, going into anaphylaxis, and if we will end up in the hospital for Thanksgiving.
I think I asked the lady three times if they were doing things differently because of it. She assured me that she was the first appointment of the day so they could do something (I can't remember what it's called) to take the extra precautions. But really is that supposed to make me feel better. So you guys are ready should she go into anaphylaxis, but can't we just avoid that.
But Wednesday I will get up and drive to Riley, do the procedure, and we will go to McDonald's afterward. She will be her almost normal self by the afternoon. I will feel relieved it's over, and anxious to get the results. And of course I will most likely have to wait until Friday because of Thanksgiving.
And from there I don't know where we will go. Because I've never had anything but good results. And I don't know what to expect this time. I don't know how to react if they find something. I think I know where we will go from there based on my countless time spent researching, but in reality how do you decide between a risky surgery, chemo, or "wait and see" for your child; knowing that all three hold huge risk. And if she doesn't have one, how do you rejoice when your other NF friends are dealing with optic gliomas, plexis, and migraines in their children.
It's pretty incredible how sitting in the doctor's office on May 6 of 2009 totally changed my life. I have amazing friends I would never have known. Thank you Tara, Cindy, Bridget and Vicki. I have learned so much. During Abigail's re-evaluation the other day I answered a question they asked and the woman looked up at me and told me I sounded like a doctor. Yes, I am becoming a wealth of knowledge about many things medical.
And some days a small part of me wishes we weren't here. It wishes that when Abigail is pretending she wasn't so good with her doctor kit. It wishes that our money and time could be spent on driving to Indy for fun things like the Children's Museum, and Connor Prairie.
But then Abigail wouldn't be Abigail; and that thought makes me sad. I wouldn't have met the woman I mentioned above; and that thought makes me sad. Yes it is both the beauty and pain of living in Holland that I am feeling right now.
You can of course feel free to pray that I sleep well the next few nights, that the doctors extra precautions are the correct ones for keeping Abigail from having any sort of reaction, that results come quickly, and that we continue to find peace that surpasses all understanding.

Taking deep breaths,

Tuesday, November 16, 2010

A lot of things jumbled in one post.

It's been a week filled with middle of the night nebulizer treatments, phone calls to figure out appointments, and the dreaded re-evaluation by early intervention (called first steps in Indiana). It's also been a week where I have spent much time thinking, thinking, thinking....because that's what I do.
Why is her asthma so bad? Is there something going on we can't see? Why is it only at night time? Am I ever going to sleep through the night again? And the inevitable call to the pulmanologist I have waited too long to make only because I don't want to have to increase her medicine, or make another Riley trip since we have three in the next three weeks. But after the emergency room trip earlier this week for it, and the lying awake for an hour after her treatment last night...waiting for another attack, I decided for both of our sakes I should call.
I also tried to be "smart" and make same day appointments a few months ago. Turns out that despite the fact that I checked (TWICE) the dermatologist appointment is not at the same facility as the follow-up with the speech and language pathologist; and of course there isn't enough time to drive from one place to the next...so two trips it is.
And lastly our re-evaluation. It's such a bittersweet things. I'm not certain if all states are like this right now, but ours is really cutting back on services for children with special needs. We know that Abigail's diagnoses qualify her for services automatically. That doesn't mean that first steps will willingly give them to us. By the standards of the state Abigail has never technically qualified. If the standard says children should walk by x age, and the child is walking by dragging one foot behind them, they still are considered as walking. Yeap. Pretty ridiculous, but that's the way they roll. So the two incredibly kind ladies who have evaluated her before, came and did so today. And for the first time ever: she qualified, based on her lackings in areas. It's great that I didn't have to call doctors to get orders written so that she would get what she needs. It sucks that her lacking is becoming more evident. I do have to counter my "damn the man" speech here with the fact that the providers (her therapist) are not the issue. They are phenomenal. The bureaucracy part is where it gets messy.
So this afternoon I sit. Waiting. Waiting on doctors to return phone calls. Waiting for Abigail to wake up from nap. Waiting for her MRI next week. Waiting for results. Waiting to find out if she has mastocytosis. Waiting for my head to stop spinning so I can send out e-mails to her providers. Waiting to hear when we get to add occupational therapy to our mix. Waiting on life to return to normal...and by normal I mean?

Taking some me time,

Monday, November 15, 2010


Imagine if you will what it would be like to be in an earthquake. The whole world moving, things falling and crumbling around you. There is fear, confusion, uncertainty. Even after the earthquake stops, you don't feel safe or secure. You know about the aftershocks. You know that earthquakes set off things like volcanoes and tsunamis. The whole world has just shifted, and all you can do is wait for what will come next. Now imagine if you will that you are the only person feeling this earthquake. Nobody else even knows it's happening. You try telling them, but they just don't seem to understand. A few people might be able to look and see that you are in one, but they still don't feel the effects like you do.
It sounds like some weird sci-fi movie. But it's reality for me, and a lot of other parents out there. It's what it felt like to hear a label for the first time. Those aftershocks are every little thing along the way after those words are first spoken; all of the "your child will probably never", and "will have trouble with..." Yes I feel like I live in a world of earthquakes. And like people who live near fault lines sometimes I find peace. Every now and then there is enough of a break between the quaking for me to think things are okay, but then my world gets rocked a little bit.
After a while you learn how to stand, walk, and even thrive while the ground is moving beneath you. You have days that you forget what life was like when things stood still. You aren't even certain how you would survive in that world anymore.
And there are days when you try to explain to everyone else that you are shaking because of world around you moving. But they just shake their heads and walk away. They can't see it moving, they don't want to see it moving. Because if your ground can shake, then that might mean there's could too. So instead they ignore you. They look away and pretend not to notice.
And then there are times when you look up and notice that other woman who also is shaking like you are. You see her immediately at a playground, doctors office, or grocery store. And from the depths of your spirit you cry out to her. You smile at each other and talk about this earthquake world. You walk away knowing that someone else out there understands you.
Some days you curse the quaking wishing it would have never come. You cry and you scream knowing that it won't change anything. And then you pick yourself up and move on. Because although there are lots of really horrible things about not being able to get great footing, there are also lots of really great things about how it has changed your perspective on life.

Hoping the aftershocks are small,

Thursday, November 11, 2010

Two men I love.

This week holds the birthday of two men who have shaped my life. I thought I would share a little about both of them.
Yesterday marked the 87th birthday of my papal. The story is told that when he was born a tea cup would fit over his head. He only went to school through the third grade. Him and my grandmother were married for nearly fifty years before cancer took her. I have never seen a man more devoted. He was by her side caring for her, loving her, and being strong through tears until she took her last breath. There was something so moving to me about the tears that flowed freely as he stood by her casket and talked to people at her visitation and funeral. He didn't hide how sad he was. He didn't apologize for being sad. Instead he talked about the amazing woman he was married to, and how "if she didn't go to heaven ain't nobody going."
If you met him you might describe him as a man of few words. But his heart more than makes up for it. He loves Andy Griffith, and the movie The Fox and The Hound. He likes to eat cornbread and milk. He believes Sundays are for rest. After smoking for probably around 40-50 years he stopped cold turkey. He would give you the shirt off of his back if you needed it. He is the father of six, grandfather of 18, great-grandfather of 25, and great-great grandfather of one (if all my math is correct). One of the coolest things about him, he still works; 5-1/2 days a week. I had the amazing blessing of being able to live with him for a small chunk of time, and I knew that if I grew up and married someone half as amazing as him I would be okay.

My papal, Abigail, and I at her first Christmas.

Jason got to meet my papal the summer before we started dating. I wouldn't realize until a little while later that their birthday fell just two days apart. Tomorrow I will celebrate my husband turning 31. I can say that I married a man whom I think runs a pretty close race with how great my papal is.
Jason provides for our family because it is important to him (and me) that I get to be at home with our daughter. He doesn't just provide by having a job, he pours over our finances to figure out where to allocate each dollar to so that we are making the wisest choices. He walks to work everyday so that we only need one car. He comes home at night and helps with dishes, housework, and gives me nights out. He does an amazing job loving and caring for both Abigail and me.
I don't know if I could ever put into words how much he means to me. My life is full of laughter, wisdom, and the best friend anyone could ask for all because he is in it. I hope that we will get to celebrate our 50th anniversary together in 44 years, and that his grandchildren will say of him the same things that I say of my papal.
The hottie I get to spend the rest of my life with.
Happy birthday to two of my favorite men,

Sunday, November 7, 2010

The valley of the shadow...

I think everyone knows the verses from Psalms that my title refers to. They are read at funerals. They were even referenced in a nineties rap song. Jason and I both cringe when they are read at funerals. Neither of us want them read at ours. However they are some interesting verses. And in reality they don't only refer to dying, or being on the brink of death. There is a lot in those six verses.

"The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me besides quiet waters, he restores my soul. He guides me in paths of righteousness for his name's sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23

Despite the reputation for being a funeral passage I actually feel like it describes our lives pretty well. My personal journey with Christ began my senior year of high school, and Jason's his junior year of college. And for many years it felt like we lived in green pastures beside quiet waters. God spent numerous years building us up with great things. It's not that there weren't any bad things in those years. They just didn't really make us question anything we believed in.
And although the wait for a baby was hard, it was not a valley of the shadow of death. I know people who live in that valley; but for us we are just in close proximity.
For the first nine months or so after Abigail's diagnoses, that's where it felt like I lived; in almost constant fear that my baby would be taken from me. And as I move further away from the diagnoses the thing I have been able to look back and see is that God never changed. I did. A whole bunch. I will continue to change. Through the times I wondered what He was doing, and why; He gently comforted me with His rod and His staff. He also prepared a table for me before my enemy; the enemy who enjoys telling me all the things that could happen, and why this might be happening to my baby. As I sit at that table and supp, none of those things from the enemy can even be heard above my heart crying out in praise.
I really do feel anointed in this situation. I feel the grace and mercy of the Lord washing over me, and I see it pouring over my daughter. I watch my little girl and know that my cup runeth over. As I hold her, play with her, sing, dance, laugh, and cry I could not contain another ounce or moment of the greatness the Lord has brought to me. I know that His goodness and love will follow me forever, and some day my husband, daughter, and I will dwell in the house of the Lord forever.
I don't want this to sound cliche. It's not something I'm supposed to say because I'm a Christian. When we first found out about Abigail's NF I felt like someone had rocked my whole world. I imagine that if I could see things the way God did during that time there was a large shadow over me.
The thing about all of it is that I really can look backward, at now, and forward, and see that God didn't change, isn't changing, and will not change. His world was not rocked by my daughter's diagnoses. He knew when He knit her together in her mother's womb that there was a chromosomal mutation. He knew when and where she would get tumors. He knew that Jason and I would be her parents. He knows the number of her days, the time of her last breath, and the way to cure anything she may ever face.
Over the last few weeks as I have begun to try to prepare myself for another MRI and what may come of it, I have been shocked at how peaceful I feel. I have even been able to look at pictures of what might lie ahead for Abigail if she does have a tumor on her leg, and have been fine. It's not that I'm not saddened by the possibility. It's that it doesn't actually change who Abigail is, who I am, or who God is.
Knowing who I am in Christ, who my daughter is, and who Christ is means that even when things look and feel shaky, I will not be moved. My life, my hope, my joy, my peace, my everything comes from a foundation that is solid. Had I not walked into this with that foundation, the months of grieving I encountered would have taken me to the pit of despair and left me there. But as I stand, I can face tomorrow knowing that my God is good. And that is all I need to get me through anything that NF can bring our way.

Enjoying the green pastures and quiet waters,

Wednesday, November 3, 2010

Pink boots.

Every girl needs a pair of pink cowgirl boots. They go with everything. They make fun noises when you walk. And, they never go out of style. Who doesn't look good in a pair of pink cowgirl boots. However when your little girl is limited to one pair of shoes because of afo's and de-rotation straps you strictly ban people from buying things like this. They just remind you that she can't wear them. But somehow that slipped by one person. And so Abigail is now the proud owner of a pair. I must hide them because she can't wear them all the time. An occasional romp in them is okay, but they definitely do not help her walking issues.
So Sunday morning we got ready for church and put them on (along with her new hilarious "happy face"). She loved them. She told everyone "boots." It was fun to get to see her be excited and just be a girly girl. And so I vowed that night to hide them.
Monday came and she had therapy so I put her afo's and tennis shoes on. That afternoon we just hung out at home, played, and enjoyed the day.
Tuesday morning Abigail tells me she needs to wear a skirt, so she can dance (because we all know you can't dance in jeans). So we put on the skirt grandma just sent and came downstairs. And lo and behold mama had apparently forgotten to make her boots disappear. I turned around and she was holding them telling me boots. So I put them on knowing I wouldn't forget last night.

Because two days of wearing them wouldn't hurt her. We would go back to her tennis shoes today. And besides that she can't wear her straps because they are irritating one of her legs. So we will give her one more day.
And I bet you can guess what I did after Abigail was in bed last night. I sat on the couch with my husband and completely forgot about the boots again. So this morning when we were getting ready to put shoes on for library time I looked down and realized it was too late. She was already holding her boots and asking to wear them. And in case you didn't notice from the pictures above, she is really cute. It's hard to say no to such a simple and easy request that will make her happy. So pink cowboy boots it was.
But right now she's napping (okay she's really talking in her bed, but she's supposed to be going to sleep), and so I'm going to go put her pink boots away. I think if I wait much longer we will have a full out battle on our hands. But probably not one I would fight very hard. Even though I know it's good for her to wear her afo's and straps, I also know that she has a lifetime of hard things and it's okay to let her be who she wants to be sometimes. Pink boots aren't worth the battle.

Going to hide some really cute little boots,

UPDATE: I hid them yesterday, I swear I did. And this morning she brought them to me again and said, "boots please." And sure they look a little ridiculous with footie pajamas, but they can be worn with anything.