When we got the diagnosis in January I felt a huge sense of relief.
Finally! Answers to so many questions.
We were certain of what I’d felt in my heart for a long time – Jackson had Childhood Apraxia of Speech.
With a diagnoses in hand, I sat out to educate myself and others. I hit the ground running to make sure we were doing everything we possibly could for Jackson.
What I didn’t do was grieve.
Last week the sadness and uncertainty nearly pulled me under. Somewhere between learning we needed to get an OT evaluation, realizing it’s highly likely that Jackson has Sensory Processing Disorder, and battling the school district to get his needs met, the grief found me.
So I fell apart in the shower. I let the water muffle the sound of my sobs.
At 2 a.m. silent tears hit my pillow. Jackson wasn’t feeling good and it killed me that he couldn’t tell me what was wrong.
I sat in my car and cried in the parking lot of the doctor’s office but quickly pulled myself together before my appointment.
The doctor walked in and her first words were That little boy of yours is so lucky to have you as his mama!
And I fell apart again – right there on the exam table – while my doctor hugged me.
Grief found me last week.
I grieved for the little boy who wants so desperately to talk.
I grieved because we have a long, hard road ahead.
I grieved because my three-year-old should be signing up to play soccer or participating in AWANAS.
I grieved because being the parent of a child with special needs is hard.
I grieved because very few people truly understand what we face on a daily basis.
The week leading up to Easter was filled with tears and sadness.
I was weary from worry.
But then Sunday came – overflowing with hope – and these words comforted me.
Because he lives
I can face tomorrow
Because he lives
All fear is gone
Because I know
He holds the future
And life is worth the living
Just because he lives.
This Apraxia journey is a roller coaster ride. There are days I feel strong and capable; Jackson’s biggest advocate. Other days I question my ability to get it right.
I never realized I’d be fighting so hard for my son at the age of three. That I’d be worried about IEP’s and making sure people see him for who he truly is and not the labels they want to slap on.
Yes, there are days that I feel defeated and frustrated – but hope always lingers.
Even though on the outside it often looks like things are falling apart on us, on the inside, God is making new life, not a day goes by without His unfolding grace. (2 Cor. 4:17 MSG)
Oh, how I’m thankful for His Grace.
And for the joy discovered amidst the hard.
Easter egg hunts. Texas Bluebonnets. Ice cream for dinner.
This little boy entrusted to me.
***Today I’m joining my friend Kristin for Three Word Wednesday. You can join the fun here.
What a poignant point you make. So often we rush to do in meeting the challenges before us. It’s easy to neglect our need to grieve. The pictures of your son made me smile, and I pray God will strengthen you for the ride and bring blessings you could never imagine at this point. Thank you for sharing your heart:)
Thank you Ginger! There are definitely blessings and joy in the midst of all the hard stuff. God is faithful each and every day! I believe this is another way for Him to get the glory. Thanks for stopping by my blog today….
Jennifer, when we ignore grief it can easily turn into a root of bitterness. So glad you had your meltdowns last week – you needed them. Your body, soul, and spirit needed the release. And, yes you can face tomorrow – He is already THERE!!! xo
I’ve never thought of the bitterness that could take root without grief. Thanks so much for sharing such a profound statement. Thanks for stopping by the blog today!
His unfolding grace. Amen. So glad God’s with you and shaping this journey of yours.
I couldn’t do it without Him, Kristin. 🙂
Jennifer, you are loved. From a special education teacher perspective, I am telling you that you are doing it right. Just keep exposing your sweet boy to as many language-enriching opportunities as possible. Keep speaking up for his rights and his needs. From a Christian sister perspective, remember that God is fighting for Jackson, too. He adores you both! 🙂 Big hugs from AZ!
Thank you so much for your encouraging words, Lee! They mean so much!
As a teacher who sat in one of those types of meetings today, thank you for voicing what I’m sure were some of the same feelings and thoughts that mother on the other side was having. I needed to hear it today.
Jennifer – thank you for being an amazing advocate for the kiddos you teach! I’m glad my words encouraged you today. 🙂
I can only imagine how hard this is. I loved what you posted about Holland–so very true. The pictures in the bluebonnets are just gorgeous–he is SUCH a cutie-pie. Hang in there, we are all rooting you on 🙂
Thanks Molly! Wasn’t the Holland story just beautiful? I was thrilled to see the pics of your little guy with his cool Captain America arm! SO COOL!
Jennifer, I have a 28 yr old son with developmental delays and “some apraxia”. It is a hard road but its a wonderful road too. Some days it will feel harder than hard and some days it will feel totally joyful. Hang in there, you know him better than anyone else and he needs you to be his advocate, possibly forever. My son works part time delivering the mail in an office building. His coworkers love him and he loves them! He still struggles with speech although he does talk and can be understood if people are patient with him. HE TRIES SO HARD! I’m so proud of him. One suggestion that we only recently found out about, check into a program called Interactive Metronome therapy. Look online, find a provider in your area. We started last Nov with our son and we have seen some improvement, it isnt a magic bullet but it is making progress. Dont ever give up on him (there were times where I said, ok we are where we are) keep looking for things that will help…not cure, help. As hard as it can be, every accomplishment is truly a cause for celebration!!!
Joy – Thank you so much for taking the time to comment on this blog post and offer encouragement from a mother who has had many years of experience on the Apraxia journey. It is greatly appreciated! I agree with you…”It’s a hard road, but wonderful, too” I will look in to the therapy you mentioned. We are currently on the waiting list to start equine therapy and I really think that’s going to help Jackson. Always looking for new ways to helps him out. Thanks again for your encouraging words!