I haven’t blogged much about Jill and her status updates because there really wasn’t anything to update about. She was still getting twice weekly therapy and we were just ho-humming along.
At some point, she was referred to California Children’s Services (CCS), which is a state program that offers medical therapy services to kids with specific conditions. Cerebral Palsy being one of them. The therapy portion is not income dependent, so technically, you can be a millionaire and use them if you choose. This is good for us because we apparently make “too much” money to qualify for most any other program. Weird.
Anyway, part of seeing if Jill qualifies for the program is to undergo (yet another) assessment. This will be her third assesment in 3 months. But of course, everyone uses a different test (think SAT vs. ACT) so no one can use any other agency’s reports. No wonder stuff costs so much. Sigh…
So Jill had an appointment and they weren’t able to finish the test in the allotted hour…and then because of scheduling conflicts, we weren’t able to go back to finish it up for two weeks.
Yesterday we finished up her testing and the therapists were amazed at how much she had progressed in just two short weeks!
In fact, they had to actually go back and re-score her on a bunch of areas because there was so much difference that the test wouldn’t be accurate anymore!
Each item is scored as either 0, 1, 2. And in many places that she had scored a 0 (meaning she couldn’t perform the task at all), they changed to a 2 (meaning she completed the task)!
GO JILLY!!!!
I was crazy encouraged by all of this and thought to myself “well, little girl, we just might get through to the other end of the tunnel unscathed…”
And I’m still encouraged by all of that. Kinda.
Okay not really.
Today the therapist called to go over Jill’s results.
Reflexes: 5 month level
Stationary: 4 month level
Locomotion: 5 month level
(Jill is 8.5 months old)
Overall she scored in the 8% for kids her age. So, just like growth charts, basically, 92% of 8.5 month olds score higher than Jill…and only 7% score less.
My heart grew heavy.
She went on to say that Jill was definately a candidate for the CCS program and that we still had a few more steps to go through to qualify, but that it looked “good”.
For the first time in my life qualifying was something I *didn’t* want to do.
When I pressed her to give me her crystal ball predicition of what she thought Jill might “look like” in the future, she said:
“That’s the problem with this job. It doesn’t really matter how long you’ve been doing it…I’ve been doing it 30 years…you can’t predict based on past experiences. I’ve seen kids at Jill’s age do exactly what she does and they go on to walk and live relatively normal lives. I’ve also seen babies just like Jill who need wheelchairs, or who need crutches or walkers. I’ve seen every side of it. There’s just no way to know this early because every baby brain is so individual in the way it will continue to wire itself.”
I caught my breath as she spoke because my mommy ears only heard the words wheelchairs, crutches, and walkers. I *know* she said good stuff too…but that’s not what I heard. At least not as loud and clear.
“…and I don’t know yet, but we may consider getting Jill some equipment…maybe a special seat to help her sit up…I can’t say for sure yet, but her peers are sitting up by now and the doctors may want to look into equipment in the near future…”
And this is where my tears silently fell on the other side of that phone.
It’s a weird thing.
You would think that none of this would surprise me.
That I’ve prepared my heart.
That I’ve thought of all of this.
But the problem is that if I’m painfully honest…
…I’ve never believed that there would be anything wrong with Jill.
I always held out hope that this would be like Henry’s heart.
A stressor, a crazy time…but something for the baby books.
Something that went away.
Something that we could tease her about at her 16th birthday when we told stories of her baby years.
The fact that she continues to qualify for programs…that we keep meeting with more and more specialists…the fact that my therapist handed me info on a support group for special needs parents…
It’s not going away.
This is where I wish more than anything that I was being dramatic.
I wish I was over-reacting.
I wish someone would think “Oh what a hypochondriac that Jeannett is!”
And to be honest…I wish I didn’t hope so much.
I know that sounds terrible.
But I think my hope was more delusional than anything else.
So it hurts extra when you realize that you were likely kidding yourself.
Maybe I need to assume the worst and then be pleasantly surprised when it’s not?
I don’t know anymore.
I keep reading this over and over…
Romans 5:1-5
Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
I know it is Truth.
I know it.
I know it.
But it’s still crazy hard.
Crazy. Hard.
sorry for the double post.
but somehow dumping my thoughts out of my chest makes them sting a little less.
amazing how therapeutic blogging can be….
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oh man. it is such a journey-and you are at the very beginning with jill. and who knows where it will lead (well, God does, I guess!). but our role is to walk forward one step at a time. and if you look at the path right now, it’s actually quite lovely. you can’t see what the path will hold in 5 steps, you just have to be where you are. that said, i have a few tears falling right now. it really sucks to see your baby qualify for special programs. we want our kids to have every joy, opportunity and blessing possible. i love you friend. so glad to be sharing your journey.
Whoa, Jeannett. If I had only known this was coming down the pike, I would have found a room in that fabulous house, and last night we could have talked. REALLY talked. You are killing me when you say say your tears fell silently down while you were on the phone. I’m crying just typing it.
That Bible verse says it all, though, doesn’t it? Even though I see Jill getting stronger every time I see her, my offerings of hope are so limited compared to the riches there in the Word.
Yet she keeps astounding the world, the doctors, the support folk. It isn’t too much to ask for miracles for her. God WANTS us to boldy ask!
Take Care, Friend. It was good to see you last night.
I love your blog title and header.
Welcome to SITS. We’re happy to have you.
You know how we may always have that desire for more kids, though actually having more may never happen? In that same way I think a big part of your heart will always break when you hear news like this for Jill. But though you may always feel that, you know the Lord will see you through every day just as He’s seen you through every day so far… and you have a lot of prayer warriors praying you and your family through, too.
Praying for you!! Great seeing you, however briefly, last night. Meant to ask about your sweet girl but it didn’t seem like the time/place? Now I wish I had. You’re not alone! Praying Psalm 121 for ya’ll.
Beautiful blog…your story about your Jill made me sad but I know there are so many blessings in there, sounds like you’re an incredible mama…so glad I’ve found your blog, thanks for helping me through some struggles today with your thoughts at POM!
http://thepursuitofmommyness.com/
Jeannett about 7 years ago ~ I was in your shoes ~ with my sweet baby boy ~ His medical issues started at 8 weeks with his eyes ~ and spiraled after that ~ he qualified for all those programs~ he had countless assessments and tests ~ we have battled medical concerns~ he is 7 now ~ life is so different than we expected or planned ~ But God’s plan is beautiful ~ Life is beautiful in ways we could never have imagined ~ you will meet people and go places you would never have otherwise ~ There are blessings in the roughest of journeys. Those verses are “cling to verses” !! anytime… =)
Jenn
But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed. Isaiah 53:5
I’m having a hard time writing because I’m trying not to cry while @ work…My heart goes out to you and please know that I, along with your other friends, will stand and pray you through. Although the path is dark right now and sadness weighs heavy on your heart, I know my God and HE will see you through! I’ve been through my fair share of trials with my kids, they aren’t walking with the Lord… I can’t say “Oh, I know how you feel” because to truly speak those words would be untrue. I don’t know, but I know you love your daughter more than life itself. That you want the very best for her, more than you’ve ever wanted for yourself.
We cannot really comprehend this, but the Lord loves us more than that. He loves little Jill more than you and HE will be victorious! I can’t say what the victory will look like, but in 2 weeks she improved from 0 to 2 and that is a miracle! Get ready for more miracles! I hope that these will comfort your heart as they have mine: 1 Cor 4:7-18, Isa 43:1-7, Josh 1:9 – Blessings!
don’t stop hoping. it can be crushingly disappointed when things don’t turn out how you hoped, but it’s so crucial to keep hoping. how many times has God told us things in the Bible so we might have hope? i can tell you since i have life-long health problems, that hope is key. disappointment is real and painful and seemingly endless at times, and acceptance is also so important, but hope is needed for survival. jill needs you to hope. be real, be expectant, fight for her, accept the unknown and the possible realities, but always hope.
I cried right along with you while reading this. My son, Thomas, is 3 years old and has quad CP. While I often agree that it would be simpler to let the hope go instead of face potential disappointment, it is really the hope that makes us strive to give our kids the best life possible.
We were told that Thomas would have “neurological issues” when he was born. We found out when he was 9 months old that he had severe CP. When he was one year old, a neurologist told us that the amount of brain matter damage meant he would never stand or walk and not speak. We were told to begin working with communication boards.
Today, he speaks in complete sentences…often with more than ten words. He uses vocabulary above the level of that typically expected for a child his age.
My point? Experts can guess, but they don’t always guess right. It is our hope as parents that keeps our children growing and developing. You will do what’s best for your beautiful little girl. Just the love in this post alone shows me that she will grow up happy and cared for. There are days when I cry alone in the car or have to leave library story time to compose myself, but there are more days when I remind myself that whether or not my son walks will not determine the value of his life … the love and support he receives will.
Best wishes for you & your family! Cath
What a beautiful precious little girl. I am sure with your awesome parenting and encouragement that she will excel and thrive more than any doctor or therapist could imagine.
I just read your blog for the first time ever (my friend gave me your blogspot address when I was sharing about my daughter)…my eyes welling up with tears, the similarities alarming, overwhelming. It’s nice to know someone is going through the same thing, so I thank you for sharing, for pouring your heart out. You’ve encouraged me tonight. Your children are beautiful and so are their stories!