I have Cerebral Palsy

Let me just start with telling you that Emily is one cool cat sometimes. 

Lately she is totally in to her communication device.  She uses a Dynavox V max to talk.  She has about 40 choices per page with many sub-pages.  I can't even count the number of choices she has.  And she's good at it!  Like, really good.  She wants it as soon as she gets up and keeps it going all day.  This is a big improvement for her because the device is time consuming and can be frustrating, so it can take some encouragement to keep her going with it.  It's also exhausting for her to hit her head against a switch all day. 

Last week, she had to write about a story she read for Black History month.  It takes 72 hits to choose the letters to write "Today is Thursday", just to give you an idea of what she did this week.  She put together 4 complete sentences on her own during class.  That would have taken more than a hundred hits (using word prediction).  A 'hit' is when she turns her face to a button mounted to her headrest when the appropriate symbol is highlighted on the computer.  She sees the correct letter and her cheek presses the switch to make a selection.   She had to work quickly and efficiently to get so much done. 

These pictures were science homework, we've since changed the program adding many "parts of speech" pages to make writing faster.  I'll try to get some video, because it's something to see!

I am so proud of her, and she is so proud of herself.  Moments like this make me thankful that I've pushed so hard for education.  You never know what they're capable of until you offer them EVERY possible opportunity.  Anyway, I'm getting off track :)

This very cool computer of hers made me think of the days when she got her first one.  She was 3 or 4 and it only had a few choices on each page.  It was only about learning how to use it.  We gradually went up to 12 choices and then when she was in kindergarten they opened a program called "Gateway" for her.  It had many choices and pages to explore.  She loved it.  She sat for hours listening to choices and exploring communication. 

One day she came across a button that said "I have cerebral palsy".  She hit it.  My heart stopped.  I'd never heard those words before.  Oh, God!  I wish you didn't, Emily, I thought silently.  She hit the button again.  And again.  Over and over again the computer voice monotonically stated the truth.  "I have Cerebral Palsy"  It physically hurt to hear her obsessed with saying it.  "Yes Emily, you do.  Can you find something else to say?" 
"I have Cerebral Palsy"
"I know Sweetie, I know you do".

After a few hours of this, Jeff came to me almost in tears to tell me to remove the button.  He couldn't take hearing her say it anymore than I could.  I knew the button had to stay, but it was heartbreaking for us. 

Finally I asked her if she knew what cerebral palsy was.  "Uh-uh" she said. 
"Do you want to talk about it?"  A big smile and a big "Ya!" filled the room.

I explained to her that she was born very early.  I told her that babies were supposed to stay in their mommy's tummy for nine whole months.  She came out 3 months too soon.  I let her know that the brain needs a lot of air to be healthy and hers didn't get what it needed.  The parts of her brain that told her legs to move and her mouth to speak were hurt and that's what caused her Cerebral Palsy. 

She was content with that answer and didn't hit the button again. 

That was when I first discovered the power of communication.  She always knew she had CP, but it had never occurred to me to explain it to her.  When she had the opportunity she asked.  "I have Cerebral Palsy" wasn't the heart breaking statement I thought it was.  It was a question from a little girl who waited more than 5 years before she could ask it.  

She moved on to laughing as she hit the button "underpants" over and over in front of Hannah's friends...much to Hannah's mortification! 

That monotone computer voice that can be so difficult to listen to has been an amazing blessing to my children.  It is litterally their voice.  Seeing them use it makes "I have Cerebral Palsy" not quite so bad :)

Dry?

"So he did what the LORD had told him. He went to the Kerith Ravine, east of the Jordan, and stayed there. The ravens brought him bread and meat in the morning and bread and meat in the evening, and he drank from the brook. Some time later the brook dried up because there had been no rain in the land.  Then the word of the LORD came to him:  “Go at once..."  1 Kings 17:5-9 (niv)

I've been thinking a lot about the last year.  It was one year ago that Abby got sick.  She hasn't been in school for a year and hasn't really been healthy in that amount of time.  Before that, Emily was struggling with seizures daily.  She also still deals with that most days. 

I wrote a post about one year later that I didn't post.  It was fine and spoke of what we had been through and where we are now.  It was a perfectly fine post, but I never felt like it was done.  Then I started reading about Elijah.  I suddenly understood why nothing I was writing felt right. 

I have been living life with these children for fourteen years.  None of them have been easy.  I should know without question that God has a plan and is working in ways I might never understand.  I don't think I struggle with the situation as much as not being able to see where I'm going, or why.  So, I do question because where and why matter to me.

I'll admit that I'm a little intimidated by the prophet Elijah and generally don't relate much with him.  God had chosen him, and he was faithful.  I don't see him continuously questioning God's plans the way I do.  But as I read the passage above, something jumped out at me.  God must have known that Elijah was willing to do what He asked of him, without question.  What struck me was the phase "the brook dried up". 

God knew Elijah was a faithful servant, but was he also so very human like me?  He could clearly hear the voice of God and did as he was told, but God had the brook dry up before He asked Elijah to move.  As He had been providing for all of Elijah's needs, he stayed where he was and waited.  God could have simply said, "Elijah, go at once...", but He didn't.  The brook dried up first.  There was nothing left for him in the place he was in, so when God said "move!", he did so quickly. 

I can't help but wonder if all of the provision had been there, water to drink from, meat brought by ravens, and communion with God, would he have been as receptive?  Was he like you and me enough for God to have allowed the brook to dry when He could have fed it forever supernaturally?  I believe that Elijah would have obeyed God even if he had everything he needed there, but I also believe that God knew that His confused child (me) would be reading one day and desperately need to understand that His way sometimes allows one place to become uninhabitable so His plan can be realized.  I think that options dry up in one place in life so that moving forward is not only easier, but necessary.  The Living Word never ceases to amaze me. 

So, I think that's been my problem lately.  I want the brook that understand to continue to nourish our family.  I want the place I know and feel comfortable in to be there for us.  I have been sitting at a brook that God allowed to dry up for more than a year.  I have been waiting for Him to send a healing rain, restoring what was, when perhaps I should have quickly moved to the next place God had for us.  The brook dried up, there is nothing there, but God is God and that means that somewhere else there is something for us.  He does not leave and He does not forsake. 


I have struggled to find a church that fits here, and I have struggled with ongoing, seemingly never ending medical problems. This is definitely a season of change for my family, but also a season of blessings.  It is so very easy to focus on everything that is wrong with the girls.  But I am going to try really hard to move from that place--the dry river--and head to the place I really believe God wants us to be.  Just as He'd already prepared Elijah and the next place he would be, so I am certain He has a place for all of us where we are.  

I now have to do what I can to deal with what we have to in the present (which has been trying lately) while moving forward to the future God has planned for us.

So much

There is so much going on around here!  I hate the long breaks in posting, but I never know what to say.   

Every day is so full and busy, but so often the same. 

We had a birthday part for the girls, which turned out nice for everyone except Emily and Abby.  They loved seeing family, but it was a lot for them.  Emily doesn't love crowds and mostly stayed by Grandpa.  Abby was horribly nauseous.  I finally had to turn her feeding off.  She just can't handle much activity.  I took her almost a week to recover. 

Abby's only time standing to bowl

Happy Birthday Abby! 

And Emily!!

Emily playing with Grandpa and cousin Jack



The face we saw most of the day as she wished she could throw up. 

I continue to struggle through the days with her. Always torn between what I want and what I have.  Hoping desperately for single days when she feels good and dealing with the reality of how rare they are. 

We took her back tot the GI doctor and learned that she had lost 5 pounds since October.  It's too much.  she weighs 60.8 pounds.  She needs to be about 75 for her height.  They would settle for 70.  She can't go back to school because anything (illness, fatigue, stress) that would cause her to lose weight would tip her over the edge.  We went up on the fluids again to a D15, again, any extra calories.

The last few days she has run a low grade fever, 100.3 yesterday.  She has an ingrown toenail that is having some trouble, so I'm hoping it explains the fever. 

In other news, Hannah and Sarah are great.  Hannah continues to love school. 

Sarah is the proud new mother of a furry toddler. 

My sister thought this was laundry, but it's just Sarah's unmade bed!  LOL

I feel like I'm wearing my stupid stamp for dealing with a puppy.  But I also feel like it's hard when Emily and Abby take up so much of our time to give Sarah some of what she needs.  She's asked for a dog for 4 years and it was never the right time.  It still isn't.  But she'll be 12 this summer and I don't think anything is going to be different anytime soon.  She's a really responsible kid and she LOVES this dog.  We all do except Abby.

We've had her for a few days now.  She's a lot of work, but learning fast and an absolute sweetie.  I think I needed a little ball of love too.  We all love Nola, but she is Emily's dog and very bonded to her.  We love on her, but we're mindful of the fact that Em needs to be the primary love giver.  Nola isn't so sure about the pup, but she puts up with her.  Yesterday they napped together...sooo cute! 

As usual, we have so much to deal with, and yet so little changes.  Everything in me knows that regardless of circumstances, who I am should not move.  But when faced with a world that doesn't yield, a child that doesn't get well, a heartache that doesn't ease, I move.  Ever so slightly, I change.  My natural optimism feels like well rehearsed lines.  My faith occasionally becomes marked with a question, rather than a firm period. 

It wouldn't do any good to write this blog as if I always handle things well.  I don't.  I am learning and moving as I go.  I pray for answers and something besides me to change a little, and wish for days filled with not quite so much. 

Fourteen

Fourteen years ago today, I woke up knowing that something was wrong.  It was one of those unignorable feelings of dread.  I just knew that that was the day my life would change.  There was no way I could have imagined how significant that change would be. 

Emily Claire came screaming into the world at 2:30 pm by emergency c-section.  She was loud and looked so much better than I expected.  2 minutes later, Abigail Grace did the same.  They were puffy and remarkably stable.  We had expected such tiny little things at only 27 weeks gestation, but the steroids they had been giving me to help develop their lungs along with the fluids and other meds I was on went a long way in making those first few minutes better than we'd hoped. 

For a short time that day, we were thrilled and relieved to hear our beautiful babies crying and breathing on their own. 

I knew they were early and looking back, I should have been more concerned,   but I wasn't.  I was in love.  I felt overwhelmingly grateful that they were doing well and believed that they would be okay.  I thought that feeling I woke up with was my girls coming way too soon. 

I only saw them those first few minutes, and then on my way to my room, they took me in the stretcher by the NICU to see them.  By then both babies needed help breathing.  I still wasn't afraid.  I really thought they would be fine. 

I was so hopeful and so happy that they looked good.  I remember that day without fear. 

Even though that day was one that still makes me smile, it is also a reminder of how quickly things change.  It reminds me that one minute they were in me, safe and growing, and the next they were fighting for their lives.  They were survivors from the very beginning! 

I'm not trying to sound like it was all wonderful.  I still limp through every January as I am reminded of how far we are from where I hoped the girls would be.  It's hard to watch the years go by and see your children stay the same.  They have the exact same motor skills they had at 4 months old.  Their friends, babies we knew are moving on and we aren't. 

Even when they were little I was in tears buying their first birthday cake, knowing they would not be able to bring their hands to their mouths--God, in His infinite mercy knew I needed to see my babies having fun with their cake, so they stuck their faces in it instead.  I loved that moment.  I loved knowing that it might not be what I thought it would, but that they would enjoy the world in their own way.  It opened my heart to a different normal. 

Around that time, a therapist told me to get a book about raising a child with Cerebral Palsy.  I went out to the book store to do as I was told, but I couldn't buy it.  I couldn't walk past "What to expect the first year" filled with all of the developmental milestones I'd dreamed of and pick up a CP book.  So in what I considered a compromise, I bought a book called "Changed by a Child" by Barbara Gill.  It became my lifeline.  I still have it, wrinkled, written in, and worn out.   It was a series of short insights into this new life I was trying to figure out.  One mother wrote: " I had accept that I was not going to die from this, and my child is not dying today, so I had to learn to live".  Those simple words had a huge impact on my outlook. 

When it's all so scary and unknown, you wish you could just curl up and leave it all behind.  I wanted our lives back and I couldn't imagine living abundantly or joyfully with so much hurt.  Realizing that we all had to live--not survive--but live with what we had helped me to move forward.  It helped me to recognize the joy and the gifts that my girls were, and embrace who they would become. 

This year, I have my typical January blues, but it is certainly tempered with gratitude.  There were many days in the last year that I wondered what a birthday would feel like without both of my girls with us.  And the words of that book are still with me.  Even when I don't know what tomorrow will bring, as long as there is breath in our bodies we have to live. 

Thankfully I don't have to think about any of that today.  They are here and doing alright.  We are even having a birthday celebration for them on Sunday.  I was afraid to plan anything in case they got sick, but we are going to try.  It will just be family, but it should be fun and the girls will know how much we all love them.

So, fourteen years.  The story continues to unfold, and however it plays out, I am blessed to be be changed by a child.