Child Loss · Down Syndrome · Grief · Mattie · On My Heart · Parenting · special needs

Yes, I’m Talking to You- A Letter to My Friends with Medically Fragile Children

Hey, Momma! Hey, Daddy!

Yes, you, the one who has that beautiful child who has been labeled “medically fragile”. Yes, I’m talking to you today.

I know you.

I see you.

I know what it’s like to rejoice over crazy milestones that many parents may never experience. I know what it’s like to coax my tiny one to take in just 2 oz so that we won’t have to do a NGtube feeding. I remember when Gtube day finally came because despite my best efforts, his little heart just couldn’t endure the work needed to suck it all down.  I remember what it was like to switch from continuous feeds to bolus feeds- the grueling process of slowly transitioning, all the while trying to find a formula that he could tolerate.

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I remember what it was like to hold my baby in the PICU after surgery or during an illness with a tangle of tubes trying to trap me like Charlotte’s web. I remember going home from the hospital in scrubs after a drain tube in Mattie’s tummy had leaked all over me- and yes, I know the word “Ascites.”

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I celebrated things like tummy time, head lifting, first smiles, learning to sign “Momma”, pushing up to sitting, learning to put toys in his mouth, standing at the couch with support, and all the other skills that didn’t just come naturally on a baby book timeline. They were mastered with a great deal of therapy. I celebrated as if my baby boy were a prize fighter who was just given the championship belt.

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I know what it’s like to rejoice.

And I know what it’s like to be afraid. I know what it’s like to wrestle between believing for one more miracle, standing strong when I felt so very week, and the next moment wavering, sobbing, with fear rising up like an ominous rain cloud above my head.

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I’m sorry that fear is part of this journey. I know what it’s like to find yourself caught up in a movie in your head, playing out worst case scenarios, planning a freaking funeral in your brain. And then you shake it off because it hurts so badly. You stand up and brush off those horrible thoughts, turn on the TV to escape, stick your nose back in a good novel, and grab another glass of wine.

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And then my son died. Yes, your friend lost her sweet boy. The boy that you may have only know from the million and one expressions that were plastered all over Facebook. He was gone. “Miracle Mattie” didn’t get another miracle.  It didn’t matter that we had never met, never had coffee together, never even chatted on the phone. It didn’t matter, we were part of a special sorority, a “parenthood” like none other. We helped each other, we messaged back and forth about feeding problems, respiratory care, crazy stuff that other parents wouldn’t get.

Your heart dropped. You couldn’t breathe. This could not be happening.

It was way to close to home.

Because if it happened to Mattie, it could happen to……….. and then you cringed and tried to push the unthinkable out of your head.

And guess what, I understand that too.

I have been where you are sitting so many times I have lost count. I have watched  both strangers and friends say good bye to their children way to soon, all while I was still holding mine. The first time it happened I was literally rocking Mattie just feet away as a family stood and witnessed the greatest tragedy of their life.

Your lives intersected with mine, and right about now we all have lots of feelings. I’m going to share mine, and make a place for you to share yours as well.

Inevitably my grief is sometimes triggered by the joys and triumphs of your lives, by the “one more miracle” that you are walking in, by the milestones your sweet one is achieving. It’s grief though, not envy or bitterness.

Here’s some things you should know about me:

I am still your friend.

I still care deeply about your child.

I still get anxious for you when things go a little sideways.

I still rejoice with you over all the beauty in your life, and I would never want you to hold back! As a matter of fact I want you to celebrate and treasure every moment all the  more! And take a bazillion pictures.

I am not the same.

Yet I am the same.

Grief has changed me, given me a different perspective on life. I have less tolerance for some things and more tolerance for other things. My heart, though broken, is bigger. There are no rose colored glasses on my face, but I can still see.

I don’t want you to be afraid of me. When you reach out to me for my opinion or advice, I like it. It makes me feel like the road I traveled with Mattie has yet one more gift to give the world, the gift of understanding and wisdom, from one parent to another.

It’s always good when you do write to me, to acknowledge my grief. You don’t have to walk on egg shells, but you can always say, “Hey is today an ok day for me to ask your advice on something.”

It’s also nice if you check in on me once in awhile, just because of me, not because you need something (and that wasn’t meant to sound snarky). It’s nice to be cared for. And I ask you always to give me grace in case I have to say, “I’ll chat with you tomorrow, today is hard.” Oh and one more thing, remind me if I forget. It doesn’t mean I don’t care, it just means my brain is still a little foggy some days.

So you see, I am the same. I want to love and support you and your child. Sharing my experience and my memories helps me feel more alive.

But I am not the same, because I’m walking with a limp. I am not the same because my love goes just a bit deeper than before.

and please…… if you haven’t read Letting Love Call the Shots, read it now. 

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I’ll be working on a follow up to this post with some raw and honest remarks from some of my friends about how my journey through grief has impacted them as parents of medically fragile children. If you have something you’d like to share message me on Facebook or send an email to me at mattiebreathes@gmail.com (I would love if you would include a photo of you and your child).

5 thoughts on “Yes, I’m Talking to You- A Letter to My Friends with Medically Fragile Children

  1. We are in the process of adopting a 4-year-old girl with spina bifida, hydrocephalus, epilepsy, scoliosis and strabismus. So yes, I imagine I will be returning to your words of wisdom again and again in the future!

  2. I’ve only just found you through a post on the mighty, and I look forward to reading more. Our lives are similar in that I too lost a child who had a similar medical background as Mattie.
    Thank you for sharing your journey and for unwittingly channeling my thoughts. I feel supported and understood.
    Sybil (mom of Anna, 2 yrs)

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