It Comes in Floods - Grief of a Special Needs Parent

I have talked before about how the being a special needs parent has left me in a puddle of grief at unexpected times. This morning is no different. I am sitting here at my office covered in reports needing to be completed, but now unable to do them due to the tears continually flowing - blurring the screen and watering the documentation needed for the reports!

It was a simple phone call from one of my favorite school employees. She loves our kids, she is a cheerleader for us and a champion of all! But this morning, her words hit me like a sucker punch to the gut - "when we meet about Ava's schedule for next year, do you and John want to talk about putting her in some life skills classes?" It's a simple question, right? And we have talked about it many times - I know the answer. Yet saying it out loud feels like a betrayal, or maybe just another bubble of denial busted right open! I don't think I live in denial - but moments like this teach me that I still hold onto hope against hope that in the end, it will all be ok. And it will - just not the "ok" you dream of when you hold your perfectly healthy baby girl.

 I was talking to a friend just this week about how blessed we are by Ava. How thankful we are for her sweet spirit, contagious laughter, and determination! It makes me feel guilty about feeling guilty - she will love life no matter what it brings!

We want her to be the best Ava she can be, and fulfill all God's purposes for her in this life! So that answer is "yes"! We will put her in life skills classes for some of the day in order to begin the preparation for adult living - something that for her, we truthfully have no idea what will look like!

The grief this morning brought will pass - I will reconcile again that despite what our expectation of "normal" is, Ava Claire is fearfully and wonderfully made, and we know this full well!

Our Ava...we have another diagnosis

It’s been over a month now, but still, it seems surreal. It still has not quite sunk in.

We completed a neuropsychological evaluation with Ava. We were hoping to gain more information on how to best help her be the best she can be. Much of what we learned we already knew. Some of what we learned was new information. And some of what we learned we knew, but we had been trying not to know.

The official diagnosis we have currently is Borderline Intellectual Functioning, but only because our Neuropsychologist is a “purist” – her words, not mine – and felt there were some scores in the functioning range that kept her form giving the Intellectually Disabled Diagnosis. She did note in her report as well as in our consult that she expects Ava’s scores to dip in the next few years as she gets older which means the ultimate diagnosis it Intellectually Disabled.

Borderline Intellectual Functioning

Intellectually Disabled

It really didn’t matter; the news was the same. We heard from someone’s mouth for the first time that they did not expect that Ava will ever be able to live on her own without support. And we were warned with what we have already known – we will have to protect Ava fiercely from those who might want to take advantage of her. We sat and talked about things that no mother of a 10 year old should ever have to think much less devise a plan.

I can’t say that we were totally blind sided. We knew it was a possibility. But hearing it. Seeing it in black and white. It took away our last bit of hope. Don’t get me wrong, with Jesus we always have Hope! It wasn’t that Hope that we lost. It was the hope that the things we saw were just delays. It was the hope that we would go in and they would tell us “It’s all going to be ok.” It was the hope that they would say, “She may have some delays, but she will function on an independent level at some point.” Those were the hopes that were gone.

I wanted to write about it then…when it happened. But I knew I would short circuit my computer with the tears that refused to be contained. I would hold it together until the last child was dropped off for school. Then the damn would break and the tears would flow. I would cry until I didn’t think I could cry anymore….then it would start again. I would text John because I couldn’t call. He would never have been able to understand what I was trying to blubber. I would pull myself together before everyone came home…then start it all over the next day. That went on for about a week.

I struggled with struggling. I mean, anyone who knows Ava loves her! We couldn’t ask for a more wonderful daughter…how could I be so sad? There were some days that it was just a totally selfish grief that overwhelmed me. The thought that I will never be an empty nester. I mean we already knew we would be ancient by the time we got the kids raised, but there was that hope of 10 good years after that to travel, do missions, REST! But the new news meant I will never be able to go on a vacation without making sure someone is watching our Ava. I told you it was selfish….but it’s real.

I have settled in my innermost being that God is good. We have been through enough in our family that battle is won and settled. So I didn’t get angry at God. But I did wrestle some more with the fact that her disorder is in her DNA! It IS how she was knit together in my womb by God almighty! It means that how she is now is her fearfully and wonderfully made. It means that how she is now includes ALL she needs for the plans and purposes God has for her. So can I even pray for healing? Should I pray for healing? Does she need healing? I haven’t settled those yet.

I have two friends who have always inspired me on their special needs parenting journeys. I had no idea God had been preparing me for the journey myself…still sounds weird…special needs parent. One of these friends shared a post a couple weeks ago that summed up all I had been feeling perfectly! She called it “special needs parent grief”. She is WAY further down this path than me, and her daughter has challenges that require much more of her as a mom than my daughter ever will me – so to compare would be insane. But she spoke of how it hits you when you least expect it. We were in the van and everyone was talking about what they wanted to be. I hear Ava’s sweet voice blurt out, “I am going to be a doctor!” Before I even know it the tears are spilling over onto my cheeks, and I have to feign something in my eye to not upset the kids who notice the water works.

Then the Sunday after we got the news, I was bawling my way through worship. I look over where the kids stand, and I see this…

Ava fully engaged in worship! Eyes closed, hands open ready to receive, fully basking in the Glory of her Heavenly Father. And in that moment the first sense of peace I had since the news. I have no idea what Ava’s future holds, but as we have always said, I know Who holds her future! I have no idea what it means for me as a mother, but I know the One who promises to provide me with ALL I need to do ALL He has given me…and He gave me Ava!

Then at a night of worship we had, our youth pastor gave an amazing Word that he received for Ava. He shared how he saw her dancing in a field of flowers GRACEFULLY! That means the jerky motions are gone. The instability is gone. The dystonia is gone! Pastor Ben said he believes we will see her dance that way in the physical, that it was not just a spiritual grace!

So God continues to be faithful. He continues to provide encouragement and give us His Hope for our Ava….His Ava!

Now I have to have that conversation with myself several times a day some days….and some days I just get stuck in the sadness of it all. We are still working through it all. But one thing that has never changed….I am blessed to be that little girls mom! I am ready for many more adventures with Ava!

Our Ava, We have a diagnosis....

You are going about your day as normal. Then the phone rings. You have no idea that your world is about to change forever with what the person on the other side of the call is going to share...

That could be the scenario for many things in life. For me this week, it was the call that said, "We have the results back from Ava's testing." Next she said, "Do you have a few minutes that we could talk?" There was part of me in that moment that wanted to scream, "NO! I don't have a few minutes for you to tell me what is wrong! I don't know if I will ever have a few minutes for this conversation!" But I knew delaying the inevitable was not going to help my daughter no matter what the news was.

Bottom line, we now have an official diagnosis. Ava has Duplication 16P13.3 Syndrome. Fancy name, huh?!  Simply, it means that she has duplication on her 16th chromosome. That duplication can cause many symptoms, and it is what causes the delays and difficulties we see in Ava. It is a life long condition.

So now what? I mean, what do you do with that? I went from relief at having an answer we have searched for the last 6 years to sadness that I really had an answer. It kind of takes all denial away that you might have been hanging onto that all is well....just a minor delay here and there. But it did not take much research before I was overcome with thankfulness! As I read all that can be caused by this particular syndrome,  I thanked God that Ava has very mild symptoms! There are kidney and heart issues associated with it that we have not had to deal with. And ultimately, I just had to thank God that He knit my precious baby girl in my womb! I can honestly say the one emotion I have not had since learning about the diagnosis is fear. My God is a great big God! He knows every hair on my sweet girl's head. He made her, fearfully and wonderfully made her! As I said that scripture over and over in my head this week, I have to admit there was some confusion in my soul. Chromosomes are the knitting! They are what gives the instructions for the creating....so if the chromosome is not "normal" then did God cause that? I don't believe He causes illness. And I am not going to pretend I have the theological understanding to really even think about questions like that! But what quickly settled into my spirit was "Does it matter?" Regardless of what the answer is, does it change that God is a good God? Nope! Not one bit! So there will be no why questions from me to God. He is good all the time....even when I hear that my daughter has an abnormality in how she is knit together! It's funny. I remember when a friend found out her unborn baby had Spina Bifida. I remember asking God how to reconcile Psalm 139 with babies who are knit together in a way that we don't think of as "wonderful". I had to chuckle as I thought back on how I wrestled with that for my friend knowing now that God had me wrestling with that then because He knew what I would face now. Oh how I love Him! The conclusion that I came to and feel God inspired in me for my friend's baby is that we hear fearfully and wonderfully made as perfectly and according to the world's standard of abilities. But what He knits together is what is fearfully and wonderfully made for His kingdom! I don't believe God causes illness, and I will believe and ask God to heal Ava so that she functions on a level that the world sees as "normal", but I rest in the fact that God loves her more than I do, and He knit her together with a purpose for His Kingdom, and she has all she needs to fulfill that purpose!

As I look at Ava, I can't help but see that God did in fact knit her together amazingly! She has a joy that I don't even begin to grasp. She has a faith and a connection to the Holy Spirit that I am envious of at times. Her childlike innocence and belief in the things of God's Word makes her an amazing warrior for the kingdom! And she does not meet a stranger! She is loved everywhere she goes. This syndrome was not even discovered until 2010 (ironically, that's when we started doing our tests to see what was happening with our sweet girl!), and in 2013 only 26 cases had been documented. They now think that 1 in 150,000 births have this duplication. So what that tells me is that we now have proof that she is the rare treasure we always knew she was!

So what now? Well, Cook Children's Hospital got a few mad momma calls that day because for 2 years we have been trying to get her into a neurologist that will listen to us. But their policy says we cannot switch doctors. We have an appointment with a new neurologist in September. ;) We have to have some hard conversations about educational goals and long term goals in order to make sure financially and legally she will be provided for and cared for. Now that we have a "life long" condition diagnosis, we can go more boldly into realms that we really couldn't before to try to get her all she needs to be successful and live the best life possible. All this is a new arena for us, so we are definitely on a learning curve! But again, we trust God to bring wisdom and provide fully!

Over the last few days as I have processed all the new information, I have just stood in awe at my sweet girl! I have learned to appreciate her laugh more. I have learned to soak in her smile and the sparkle in her eyes. Its as if the diagnosis has given me permission to let her be her. I don't have to "push"  her to be what every other 10 year old girl is. I have permission to just enjoy who she is and where she is and love her for right now! And that is the best gift I could have been given!

For all who have walked this path with us, loved our sweet girl, worked with her at school and at church, prayed with us for answers, we thank you! And we appreciate you! Please don't stop praying! Now that we have a diagnosis we will be searching for ways to make sure we are doing all we can to help Ava become all she can be! We are excited about her future that we know is full of hope because of our amazing and good God! Thanks for walking with us!