I fought for over two years to find Olivia’s diagnosis. I have two years’ worth of posts (almost daily for a while) in the archives of ShareYourStory where I lamented not knowing what was wrong with my baby.
I also spent a lot of time talking about sleep because back then I was getting very little of it.
But that search for a diagnosis was very much the focus of a lot of my posts. I thought having a diagnosis would change everything.
In the end, it actually changed nothing.
We continued with therapies. We continued loving Olivia. We went on with treating her like Alyssa’s little sister, expecting that she would walk even if the research her doctor told us not to do (duh, of course we researched 5p- syndrome) said she wouldn’t walk.
We continued to talk to her even though the research said she would never talk back to us.
And I continued to post at Share. I continued to lean on the women I’d met there, women who were further in their journey and who understood my desperate need to help my baby be the best she could possibly be.
And yet, everything changed. Suddenly, having a diagnosis of 5p- syndrome (aka Cri du Chat) meant we had an answer to why Olivia only weighed five pounds and two ounces even though she was born nine days past her due date. That’s 41 weeks, two days gestation for anyone counting.
We now knew why she didn’t sit up until she was a year old, didn’t crawl until she was seventeen months old, why she didn’t walk until she was twenty-nine months old.
That answer meant the world to me; even if it didn’t really change anything.
It changed my heart. It gave me something to focus on. It let me see that even at two years old, Olivia was already defying the odds that the research gave her. It showed me that she was amazing and I was allowed to be so proud of her just for being her. Every single milestone started to mean even more than it already had meant, which was a huge morale booster.
But nothing changed when I thought about Olivia and who she was. She was still my feisty, stubborn girl who rolled her eyes at her occupational therapist. She was my second born, my baby, who fought so hard to learn everything that came naturally to her sister and her cousin, who was a year younger than she was.
She was still my competitive sweetheart who watched that one-year-younger cousin walk and decided that damn it, she could do that too. And so she did.
Getting that diagnosis opened a whole new world for us. It brought new Facebook friends into our world to show us that we were alone in this world of 5p- syndrome. Even though the statistics say that only 1 in 50,000 babies are born with 5p- syndrome each year, there are lot of these amazing kids out there. And their parents love them as much as we love Olivia.
But still, the diagnosis changed nothing when it came to my main source of support, which continued to be ShareYourStory. This is the place where I vented before the diagnosis and it’s where I’ve continued to post both celebrations and frustrations for the past almost eight years since receiving Olivia’s diagnosis.
This place is everything to me. It’s provided lasting, deep friendships for which I am so grateful. It’s a place where I can vent, where I can laugh and cry and not feel judged for anything that’s happened.
It’s a place where I can give back to others who are facing diagnoses of their own, who are facing NICU stays, who have been dealt the most difficult journey of all, a world without their child. In this place, we can support each other, lean on each other, be each other’s everything while expecting nothing in return.
I love you and A&O. I have felt as though I have watched your girls grow through the years. This is our safe place a place we can come together and just be a listening ear. We may not completely understand but we can still offer support and cheer you on through the journey. Thank you for all the years you have given to Share!
So many hugs and lots of Love,
I couldn't agree more!! Even though I still feel new sometimes, I know I am accepted and never judged. I feel
Like o know your girls and I'm proud to say you were the first person to reach out and show me what to do here.
Love and hugs
Tommie you are one of the most empathetic supporters here. And I'm blessed to call you my friend. I'm so proud of you and proud of Olivia for all the progress you've both made. You never gave up... and that's why Olivia has never given up. (Maybe it's the other way around. ;-) )
Hugs and love!
You are such a strong mother who has advocated since day one for your kids. So many families can learn from your struggle and your story. I'm glad that you have a diagnosis at least to know what you are working with. The search to understand seems to always be continuing and I hope that your family finds understanding.
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