Not The Life I Would Have Chosen For Her — MaryGrace Update

Last week, through tear-filled eyes I signed my name on forms with scary words like “developmental delay” and “special education” in regard to my sweet sweet girl.

I had been through this a year and a half ago with our Jameso (he has a speech delay and has been receiving services for a while). However, there is still something painful about seeing those words in print, next to your child’s name, and signing in agreement that there is an issue.

It hurts.
It stings.
It’s devastating.

As mothers and our children’s advocates, we want the best for them that the world has to offer. Right?

Just like you… this started for me when they were in the womb and has carried out into the big bad world. I want my children to grow, flourish, and be the best possible version of themselves. Right now, my concern for the “best the world has to offer” includes therapies and services.
Sometimes the needs are bigger than us and we need to call in the experts.

Both James and MaryGrace received in-home services for speech and MG also did physical therapy. The positive effects these therapies had on my littles was astounding. These sweet strangers came into our home, into our lives and made things all the more brighter. These therapists taught me how to better connect with, encourage, and teach my kids with all sorts of tricks and skills. The progress while under their care was immense and such a blessing. I will be forever grateful.

Unfortunately, the in-home services stop at 3-years-old. At which point the child is re-evaluated and if services are still needed the child is given an IEP (Individualized Education Plan) and they receive services in a preschool setting.

Fast forward to present time… MG’s evaluation was done a couple of weeks ago and it was determined that she would need further services.

As I was very delicately given the findings, I couldn’t help but feel like a failure… I knew it was all in my head but I still couldn’t shake it..

The women sharing the report with me were incredibly gentle and kind with their approach. I think it’s because they are mamas too. They just get it. They said the hard things delicately, passed the tissues, acknowledged the hurt and carefully proceeded through the report.
(When I think of how many times a week or month they have a mom like me across the table and still mange to conduct themselves with deep and sincere compassion, I can’t help but believe that these women are living out their calling. I am truly grateful for them.)

Toward the end of the report there is this one terrible awful sentence. It has all the yucky words wrapped up into one and you sign agreeing that your child is disabled/delayed/special education.

I knew it was coming.
I read it 18 months ago.
It devastated me last time. (picture an ugly cry)
I thought I was prepared this time.

Nope. Not prepared. Not ready.
And this IEP seemed so much worse. Unlike James, she didn’t need a little extra help with her speech… she needs a lot of extra help, in many areas, not just speech.

As I drove home I wondered how a mama could ever truly be ready for such a thing.

I recalled how as mamas when we are carrying our sweet babes in our bellies or lulling them off to sleep with a gentle sway, we don’t dream up scenarios which include “special education” or “developmental delays.” We dream of a healthy child running and jumping and laughing and playing and talking and functioning just the way a child is supposed to do for certain ages and milestones.

Signing my name under those heavy phrases was like admitting that all those dreams were a facade.

Granted, MaryGrace’s issues are not as extreme as so many others… but I have this new, huge heart for these moms.

I don’t know if they carry the burden like I do? I don’t know if they wonder if they could have done something differently? But I assume this is not the life or the burden they/we would have chosen for our children.

Every time I really have to face the facts of any of my children’s shortcomings I can’t help but wonder:
What could I have done differently?
Did I eat something wrong during my pregnancies?
Am I not teaching them and working with them enough?
How could I have and how can I do this better?

Honestly, it’s exhausting and makes me nauseous.
I feel like a failure.
I feel like my only job in this world to raise these kids well and most days I feel like I am failing.

It a clear state of mind, I know this is something I have to surrender. Even if I was too stressed during my pregnancy or accidentally ate soft cheese… those things are done and all I can do now is my best. I can advocate for her to have the best services possible, I can love her, be patient with her, and give her the best chance at life that is humanly possible.

So if you are a mama of a kiddo with special needs… I get you. I feel your hurt and your frustrations. There are lots of us and we need to love on and encourage one another.

If you are not a mama of a child with special needs, you most likely know someone who is. Please love them well and encourage them big. Don’t let words like “disability” or “special needs” or “chronic illness” keep you away. They need community. They need play dates and chances are… their kids are absolutely awesome.

Just think of the amazing gift you are giving your child… you are teaching them to love people who may be a bit different than themselves.
Sounds a lot like real life, right?

~The World’s Okayest Mom

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6 thoughts on “Not The Life I Would Have Chosen For Her — MaryGrace Update

  1. Praying for you and MG. Christen I saw this summer how very much love and opportunities you give not just MG but the four of them. You have a wonderful little family and God will walk beside you, holding you up. guiding your path. You are not alone Christen. I love and admire you so much.

  2. I can only imagine the size of the lump in your throat as you signed your name. You are a special mom of special children. Ain’t nothing wrong with that! Your faith, strength and the very important Mom Love will carry you through the difficult times. You have an army of friends to call upon when you can see the end of your rope. You’re not alone and are allowed to feel all that you are feeling now. But my guess is little Miss MG will flourish and highs will outnumber the lows and life will be very close to how you have imagined it. Love you, love your babies & your handsome husband. You have been chosen to mother your kids cause He knows you can.

  3. Us mamas of kiddos with special needs are an incredible group. We rise from the ashes. We are painfully truthful and we are the world’s greatest advocates. As much as it hurts, you are perfectly prepared for this journey— you are never alone. xoxoxo

  4. Speaking as a teacher, you just gave your daughter the greatest gift. She will flourish with all that is being given to her. But most importantly, she will flourish due to your love!

  5. This week I had my child’s second to last IEP meeting ever. Next year, at eighteen, she will graduate from the system. There is still the feeling of dread, before each meeting, and a little hurt over her struggle…but also great pride at what she does so well! Everything in her control she excels at! All of her assigmenments are turned in on time, she has no tardies and has yet to miss a day this year. Over and over again we hear how she encourages others and draws in the fringe kids. When she moved up to the high school our first orientation was for kids in the special ed department. Part of me wanted to say, “this isn’t where she belongs.” There were kids that were completely non-verbal, or profoundly disabled. She looked each of them in the eye and addressed them as “her friends.” She assured their parents that she had an older brother and sister at the high school and they were going to love it there! And then I knew….this is her gifting. As parents, sometimes our kids don’t get to live out the dreams we dreamed for them. Their walk looks different, and maybe it is better than we could ever have dreamed…God is faithful like that.

  6. I can’t imagine the pain and fear you’re feeling for your kids but I do know they are blessed to have you in their corner.