I'm having one of those pity-me-pity-Pip-pity-what-we-got-going-on kinda days...I realize by tomorrow afternoon, my stress, sorrow and snickers will be gone and that in the grand scheme of things, this really is not a big deal...I get that so many kids & families, have it so much harder...Trust me, my best friend is in a hospital hours away from her other kids because her little boy has cancer. So I get it, but bear with me here friends, because as routine-and-not-that-big-of-a-deal as this is, it still is my reality and it still sucks.
Tomorrow, Pip faces her 6th surgery... Six - Bloody hell. My little girl is not even two years old and she's had more surgeries than most people have their entire life.
Tomorrow, Pip faces her 6th surgery... Six - Bloody hell. My little girl is not even two years old and she's had more surgeries than most people have their entire life.
Pip has conductive hearing loss & this time, she is getting #Myringotomy - aka Ear Tube Surgery. Ideally, this will help with the fluid in her ears, her constant congestion and also help accelerate her speech & language. Another thing common in kiddos with Down syndrome, that again, my darling Pip can check off the list...
The thing is I'm so bloody tired of that list...I just want for one moment to breath and just be with her...Not worry about another blood test, an upcoming surgery, new contacts, a heart check up, braces fitting, eye exams and on and on and on...
I'm so bloody sad that my little girl has yet another complication in life. She has already been through so much & with her eyes and such, has still so far to go.
I'm so bloody jealous of mommas that get to plan their days around play dates & activities and not therapies & specialists...My day and weeks leading up to any surgery are filled with appointments, keeping Pip "isolated" & away from germs as much as I can & endlessly looking at her trying to remember every piece of her, just in case.
I'm so bloody anxious that something will go wrong - These doctors/nurses/specialist are just human after all, and mistakes are bound to happen - I just continually hope not on my girl.
I'm so bloody bitter that I'll have yet another sleepless night filled with worry and a morning with 4700 calories made up completely of snickers to ease or eat away that stress.
I'm so bloody tired of feeling so helpless...As a momma, it's me who makes Pip feel better when the nurses can't find a vein, it's me who she snugs her little body into if she's hurt herself, it's me who she looks for when she does something funny, it's me who gets the biggest smiles that light up her face & giggles that gurgle from deep in her belly...It's me who makes her feel safe...And I hate that for these small moments in her life there is absolutely nothing I can do.
And I'm so bloody scared, terrified really, at the thought of her not waking up.
Her very first surgery at 5 weeks old, had complications and she had a terrible time coming out of anesthetic and now every surgery since, I'm petrified it will happen again. I realize lots & lots of kids get these bloody Ear Tubes, and the surgery itself isn't that big of a deal - But you see, for me, it is...It's another routine surgery to add to her list of others. It's another round of doctor appointments and specialists to see on top of the Rolodex list she already does. It's one more thing on the check list of complications with Down syndrome, that my girl has to face that others don't...
So to be honest, this time I'm bloody annoyed....Enough already Fate - Seriously, Enough!!!
13 Comments
♡♡♡ Being a momma is tough. Seeing your baby hurt at any time it feels as if the pain is your own. I can't imagine the stress. *Hugs*
ReplyDeleteAll i can offer is the sniffles and a virtual hug from one mom to another. Your candor is inspiring. (((Hugs)))
ReplyDelete<3
ReplyDeleteAs hard as it is right now...invest in Pip! She will do and be awesome even thru her surgeries!
ReplyDeleteLife certainly seems terribly unfair, but there are so many golden moments even in the midst of hardship!
I am praying for you all...it's not easy, not our first choice but usually you have the power to make another choice that is hope, and faith in your circumstances!
Oh my goodness Pip is so adorable! I will say a prayer for her and family. My great nephew has downs and he had heart surgery last winter and he is doing great! My daughter had cancer when she was two, it was a stressful time and with many prayers said and great Dr's she beat it and recently made me a grandmother. Pip is on my prayer list. Take care
ReplyDeleteOlive
Being a Mom with a special child takes a special woman. You are this special woman, you can do this even if it takes 4000 calories of snickers, screaming and crying uoi can do this. I can't promise that it will ever get easier, I have been doing this for 26 years with my son but our kids look for us every moment because we are Mom and no one can ever replace that. Love yourself as much as you can enjoy the happy moment and know that you can do this.
ReplyDeleteI will be thinking of you all, thoughts and prayers to your sweet girl. It doesn't matter how routine, general anesthetic itself is scary for any parent. I'm certain pip will do wonderful! Love following along with your sweet family!
ReplyDeleteThe Law of Attraction stuff got me through a lot. I started with "Ask and it is Given" and did the exercises. Powerful stuff - you have to get over the initial hokey-feeling of it all though.
ReplyDeleteAlso: I don't know if this is a consolation but even if a child doesn't have surgery needs, they won't necessarily be spending their time in playdates and all that. I know we don't and never have!
xoxo hugs.
I feel for you and with you. My daughter is 16 and although she has had only one surgery (age 4 months, open heart, successful) there are so many other things that "get in our way". I have had many of those I-wish-my-daughter-didn't-have-DS kind of days. Then she does something great or thoughtful or funny that makes me appreciate her and all the lessons I've learned from being her mom.
ReplyDeleteEveryone's life has ups and downs, wish this was called "up syndrome", might be easier to take some days.
Hang in there, you are not alone!
thank you for having the guts to say it. it's not fair. I'm mad about it. These kids work harder than anyone. Parenting these 'angels' is calorific. Catching a break, few & far. Being afraid to express it, so that hopefully these precious ones won't be exterminated. it's enough to make ya crazy.
ReplyDeleteYes!! Thank you for saying it!! My little bug-a-boo is now 7 and she had her first surgery at 10 weeks. Very difficult time with anesthesia that resulted in several nights with one to one care on the pediatric cardiac icu floor. Fast forward 6+ years and I still have the same fear about her making it through one more "routine" procedure. The silver lining is, that the older they get the stronger they are, the better they handle anesthesia but we still worry.
ReplyDeleteBe annoyed, be p.o'd. I won't pretend that I know what you are going through but I do know every mom wants take every pain away from their child and carry it for them. I sent out a prayer for your family.
ReplyDeleteI feel you, Momma. My son has just turned 2 and has not been back in the hospital for almost 3 months now and there is not a day that I don't hope for things to remain good. I, too, envy other moms who plans for playdates and road trips as majority of my plans with my son consists of doctors appointments and therapy schedules. It is tiring but I guess there is a reason why we are chosen to be the Moms of these little warriors of ours. And for now, we can only do our best and hope that everything will be alright
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