Category Archives: Pregnancy Loss

True Life: I have a Disabled Child

March is National Disability Month as well as National Cerebral Palsy Awareness month with Cerebral Palsy Awareness day being March 25.  A few weeks ago the reality finally set in that I have a disabled child.  Super Mighty Max is a year and a half old (18 months old).  The reality of him making progress to be a “normal or typical” child has finally set in.  From hospital stays, choosing therapy services, going through the process of getting granted Medicaid and disability, to now going through the interview process for having an in home nurse.  This process has not been easy nor fun, but I have finally realized Super Mighty Max is atypical.  Everyone has a grieving process they go through in their mind about the expectation of their children.  I, like you, if you have children expect your child to do great things.  What we expect them to do, be like, have, grow, and learn ultimately no one expects to take care of their children for life.  I have finally faced the reality that I have a disabled child.

I know you are thinking like really, Erica?  You are just getting IT?  But, you have been writing about Super Mighty Max for months and have been transparent about this process.  You started a blog and have written about your thoughts here and here.  I know. I know.  I really do know.  I like to think I’m optimistic (although pessimism sets in sometimes).  I think all the while in the back of my mind I have been waiting, hoping, praying that Super Mighty Max would wake up and change just like that.  That he would grow out of this diagnosis called Spastic Quadriplegic Cerebral Palsy.  That he would start doing those things that kids his age do.  That God would do something miraculous and he would be a bodacious into everything toddler.

But the Good News is (as my husband says often in his sermons), I have a Disabled Child.

Cognitively Super Mighty Max is a 18 month old.  He cries when he wants attention.  Loves being held and sleeping under you in your bed.  Loves watching TV, but sometimes dislikes therapy or play time.  But physically he is more of a 3-6 month old if I’m honest with myself.  There are so many things I wish he could do right now.  How much those things would make life easier.  But then I digress and remember that its not my fault.  That God made Super Mighty Max in his image and he has purpose on this earth no matter his ability.

I saw a post on Instagram that stated if you “Put a Go in from of DISABLED.  It Spells: God is Abled.”  See the picture is below.

Put a Go in front of DISABLED it Spells GOD IS ABLED!

Put a GO in front of DISABLED.   It Spells: GOD IS ABLED!

God is abled.  I know what he can do.  I have prayed that God uses Super Mighty Max as a vessel to others, and that his disability would be a testimony.

 

Stay Super, Make Mighty Moves, and Be Blessed!

~Erica

An open letter to my son in heaven!

BJ, I’m writing this letter to you, because I never got the chance to talk to you in person. Its been 3 years now, since you’ve been gone. Time has definitely flown by. I miss you, I really do miss you, sometimes all I can think about is how life can be so unfair. I still don’t know why you had to go, I understand somewhat, why you didn’t make it, but that’s only the medical side of it. Intellectually, spiritually, mentally, I don’t get it. 

 
On Sunday, while driving to church, all I could think about was you. I shed a few tears, reflected, cried, and teared up again. Behind those tears is the pain of you not being here. It’s the pain of not knowing what you look like at 3 years old. It’s the pain of disappointment. It’s the pain of not teaching you how to go potty, or get dressed, or brush your teeth. It’s the pain of never being able to see you smile. It’s the pain of never seeing you crawl or walk. It’s the pain of never throwing the football with you. It’s the pain of anticipating a great gift, but then feeling like I was robbed of the gift. Its the pain of feeling and wondering if I didn’t something wrong to make this happen. It’s the pain, of pain, I don’t have the words to articulate. Again, it’s the pain of you not being here. 

  
Since you left us, it’s been hard on your mother and I. While each day gets better, we still grieve your loss. We’re smiling again, but we miss you still. We’re laughing again, but we still think of you. We’re getting on with life, but apart of us is missing, because you’re not here. Honestly, some days are better than others. 

I’m sure you already know, but we have a son now, your little brother, named Maxwell, who is our heart and joy. He’s a fighter and extremely resilient. I bet he looks how you would’ve looked at his age. We know that you and your little sister Brielle, are looking down on him, to cheer him on from Heaven. When he’s of age, we’ll tell him about you. Not only him, but the world! We will continue to tell your story and help other families with similar stories! We will make sure you’re never forgotten! 

  
Happy Birthday BJ, I love You!!!

Dad
PS…I’m going to blow out a candle in your honor, I’m sure you like cake, just like your daddy!

%d bloggers like this: