My momma heart is broken...at least is was on Wednesday and now it's slowly on the mend. But it will break again....over and over and over. We knew from an early age that something just wasn't "quite right" with Will. Since he was two and a half he's been receiving services to help him with his delays in speech, cognitive, and social development. Words such as "autism" and "Asperger's" were mentioned here and there, but there was never a definitive diagnosis given. Wednesday we finally got our diagnosis - Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS). I know what you're thinking...what the heck does that mean? I know...it's kind of a mouthful. It means he doesn't really fit anywhere...he displays autistic tendencies, but doesn't meet all the criteria; his delay in speech excludes him from an Asperger's diagnosis; and he's not "normal." So he gets this default diagnosis...almost like the null hypothesis of The Autistic Spectrum.
The Spectrum...huh. I thought we might be able to avoid this categorization. Two and a half years ago when we started all this, I was about positive he was autistic. He displayed so many of the tendencies and just didn't talk. There didn't seem to be any understanding when we spoke to him. But since then he's made huge improvements...to the point where I thought, 'He's grown out of this. He won't need extra services. We've beaten this.' We started talking about where he'll go to school next year...maybe we can send him to the Christian school like we wanted...maybe we can get by with just a little bit of speech therapy each week - or maybe none...maybe he can be normal.
Normal. What is normal, anyway? I'll tell you...it's the expectation you have before you become a momma. Your excitement is sparked by the two pink lines and you start to wonder what he's going to look like. You look ahead to daddy teaching him how to fish or to his first day of school. You look to birthday parties and sleep overs with all his friends. I still had hopes of these things...until Wednesday. My hopes are gone. This may never be a reality for Will, and my heart is broken. Is he ever going to experience true friendship? Will he ever find someone that can get past his weirdness and social awkwardness and get to know him for the super sweet boy he is? Will he always be the odd kid?
Remember, this isn't autism...he's not shut off in his own little world with no concept of what's going on around him. The thing about PDD-NOS is that he totally wants to be normal...he wants to fit in and be liked, but he doesn't know how to do that. He's super sensitive and my mommy defenses go up every time he tells me someone was mean to him. Or when I see he's not being loved the way I know he needs to be loved. I want to protect him...keep him with me forever...never let him get hurt by the mean kid at the party or the teacher who's annoyed with him. I don't want him to know that heartache...I want to take it away for him...be his filter...his sieve of emotional protection.
I've had these thoughts and feelings off and on over these past few years, and they all resurfaced on Wednesday when we were given his diagnosis. I was pretty down...wondering where we went wrong or if I ate something I shouldn't have when I was pregnant with him. Gregg knew my thoughts and reminded me again that Will was made just as God intended. This was no mistake, no accident. Heart on the mend. God has brought many people into my life that have special needs kids...many who have much more severe diagnoses than Will. I'm always encouraged by their perspective...by their reminders that our children were created by God, knit together while we were still carrying them (Psalm 139:13). He is beautiful and just the way God intended. Sweet, loving, and a 100% momma's boy...okay 99%.
I need to stop focusing on the difficulties or the issues I perceive as negative and enjoy the wonderful things that make Will...Will. And guess what. That includes this thing called PDD-NOS...this catch-all diagnosis that is now part our lives...his life. I know my heart will break again...the next time he's left out at a birthday party, or when he just can't get a concept at school, or the ultimate heartache...will he ever have the ability to really understand the message of the gospel and accept for himself the love and promise that Christ has to offer? Yes, my momma heart will break, but it will mend again as I choose to trust the plan God has for our lives, including this diagnosis and all that comes with it. And along the way I will bring all my anxieties and fears to the feet of Jesus and He will give me peace that will allow me to embrace my baby boy for who he is...and he is beautiful.
"Do not be anxious about anything, but in every situation,
by prayer and petition, with thanksgiving, present your requests to God.
And the peace of God, which transcends all understanding,
will guard your hearts and your minds in Christ Jesus."
~Philippians 4:6-7
Oh, Martha. I will pray for you as you parent your special boy. I know with Drew, there was a relief when the doctor said prenatal alcohol exposure, because there was an answer, at the same time I wanted to be wrong about my gut feeling and hoped he would outgrow this behavior and catch up to be "normal". Jathan and I have had to guard ourselves about the fear of the future and daily trust that God knows and we are not alone.
ReplyDeleteI love you dear friend! Tears flow as I read your post because I truley understand your feelings. Bringing up a deaf child brings a lot of the same feelings you describe. Please know that you are never alone and your feelings are expected. There is a thought I read in a book that has stuck with me. If God could put Will back into the womb and guarantee you that he would be "normal" (although I am not sure what the definition of that is) but He could not guarantee his personality, would you do it? Will is very fortunate to have such loving and caring parents and it is a learning process. Please do not be to hard on yourself because if God did not think you were a perfect fit for this sweet little boy, he would not have chosen you to be his mother! He knows that you are capable of giving him everything he needs and will do a wonderful job at it!
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