Surgery Day!

So here we are again… Hasbro Children’s Hospital! Addie is headed in for her second set of tubes and an adenoidectomy.  I talked to 4 different doctors yesterday, and though I am pretty much not answering my phone if I see 401-444-#### (which indicates someone from Lifespan Hospital Network calling me), I am thankful that we have such an amazing team, willing to do all the research possible to keep Addie safe and healthy.

As many have read, we’re going through a lot of diagnosing and problem-solving for Addie’s blackout episodes, which included an MRI. Sadly, we did not have full follow through of the order, and Addie will need to undergo another round of imaging so we can get a better idea of what might be happening. For this, we will head up to Boston (in a few weeks)…. for today, we just want to get through the ENT battle.

#aisforadelaide #warriorgirl #HasbroChildrensHospital

After I wrote about needing sedation (Addie is intubated as her airways are constricted), and how incredibly apprehensive that makes me (pregnancy hormones don’t help), many people chimed in. I wish that I could say their words helped, but sometimes they hurt or scared me more. When I lost my father 16 years ago I remember a lot of other people missing “the mark” of things to say- there are a thousand articles about what to say to someone who is grieving, but what about parents and caretakers who are scared? I know that nothing said truly makes anyone feel better, but there are things that have made me feel a bit worse about what’s going on and I wanted to share them with you because many parents have told me they too feel the same way–>

1. Don’t worry.
See, the thing is… I’m WAY past that.
2. It’s not a big surgery.
If my child is in surgery, it’s a big surgery to me. It’s a part of me I’ve entrusted to the Earth in a situation I cannot even try to control.
3. Been there. Done that.
While I am aware we are not reinventing the wheel here, routine surgery for one is not for another. Please, try to not one-up others.
4. I had that, and I was OK. (Or my child did)
I know lots of people with  lots of stories. I know kids that do GREAT under anesthesia. I know kids that have gone into comas from it, too. I know that when Addie wakes up she is a mess, her throat hurts, she’s raspy, she needs to be held and fights needed oxygen. I know that she gets ill, but refuses to drink or eat to help it. I know that she will be OK because we have a handpicked team, but brushing off a parent’s fear doesn’t make them feel better… or at least doesn’t work for me.
5. I know someone who died from that.
No joke. Someone told me they knew someone who had a child who died during a routine surgery- then they IM’d me their prayers. Ummmmmmm… I know things can happen, please don’t share those personal stories with me as I’m scheduling a routine surgery.
6. Try having (insert different procedure here).
This one really gets me. For some society has created a need for constant comparisons. Pissing contests. Who has it harder. I’ll tell you what, I know what hardship is. Maybe it is experience (I am still just a mom to one, and if you think back to those days, you too will remember your feelings were different then than they are now), maybe it’s age, or financial status, or location… or maybe, just maybe, it is how I feel as an individual. And it  is OK for me to feel the way I do. Maybe, someday, I will experience a similar hardship to you- but if you’re that person who feels like your life is harder, it just won’t matter… I’ll never be justified. This is, if you truly think of it, tragic for you.

And now that that’s off the table… I appreciate your kind words, your loving emails, texts, phone calls. So many are pulling for Addie to feel 100%, and for that I could not be more thankful. For those who go through major experimental surgeries, I pray for you everyday and I am thankful for the love and support offered to those families. When any family is going through unusual circumstances, the support system that surrounds them gives them the most strength. Thank you, Reader, for your strength.

lots of love,

13 Comments

Filed under Achondroplasia, Community, Parenting/Family/Lifestyle

13 Responses to Surgery Day!

  1. Stormy

    Hope everyone in the Martinka family is feeling 100% A-ok by the end of the day! Get well soon Addie!

  2. Rachel

    Thank YOU, Chelley, for being a role model of strength for us all. I am sure your insides are jello and your mind is racing with a thousand thoughts (both logical and illogical), but you model for us (and for Addie) what it is to stay the course with a steady hand and a warrior’s heart. If you could see how you appear to us (the outsiders), you would be amazed at yourself. And what’s super cool for our future generations are that your girls are soaking this up and learning how to face adversity with courage, a steady hand and hope in their hearts. Sending you all love and light. You will all be in my thoughts all day. (Thank goodness you are so online plugged in – as I am anxiously awaiting the updates!). Xoxoxo

  3. My heart is with you, you sweet precious people. Please let us know how it all goes <3

  4. Alicia Kamm

    Good luck Addie! We love you!

  5. Becky Ware

    prayers…

  6. Be strong, Addie will notice!
    Terry recently posted…Stay Positive In Bad SituationsMy Profile

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