I hope you all had a great weekend – ours was spent celebrating two very special friends at their wedding in Essex, CT. It was such a nice weekend away for us and we got to explore some really cute east coast towns – it was the best!
This post is kind of random but the further out that we get from Bea’s liver transplant, the less I think about it. Yes, I still think about when she was diagnosed, how much time we spent in the hospital, watching her get sicker, etc but it doesn’t consume my mind like it used to. Thankfully, she has remained fairly healthy over the last 3ish years which has allowed us to take a deep breathe and enjoy our time as a family of 4.
I am still involved in Cincinnati Children’s in a lot of different ways and had a meeting last night about patient care at CCHMC. Before the main speaker a couple of parents got up and talked about their time in patient with their children. Both had different circumstances and different outcomes, but I couldn’t help but be taken back to that moment of living and breathing all things liver and CCHMC. Hearing them talk about their kids and their stories and the toll it had (and still has) on their lives is astounding and, unfortunately, relatable.
Something the woman said that really struck me and almost hit me to the point of crying with no return was when she talked about how you experience the life altering moment of becoming a parent. That, alone, is a total game changer for most. And then you have a child that is diagnosed with a life threatening illness. You are tossed into a situation you would do anything not to be in and one of the scariest things is – you know nothing about the illness. You are in finance, or social media, or in education. You don’t know anything about the medical industry but you are tossed into it in the blink of an eye.
Something that she put into words that was hard for me to explain is that while you know nothing about this industry or this specific, rare disease and then are told in that moment you are your child’s voice, you are their advocate, and you are their fighting chance. How can you be those things when you don’t even know what you are talking about?
There is an insane amount of pressure in being a parent but an even unmeasurable amount when being a parent to a special needs child.
So, for those that are going through it now – I see you and I understand. You may not always know if you are making the right decisions but always speak up if you feel something isn’t right. Rely on your trusted medical team but ALWAYS feel like you can challenge, question, or advocate for your child. At the end of the day, you know them best.
And for those who are reading this without a special needs child – hopefully this post helps you understand a little better those who do 🙂