This month. It never gets easier for me. You’d think it would man, but it doesn’t. Five years ago this time I was doing the best I could to prepare myself for a journey I knew nothing about. I was praying fervently for my sons life as he continued to grow this last week in my belly. I was fu*@ing terrified. I can say that word because well...because there is really no other way to describe it.
My unborn baby, with HLHS. It was all about to unfold in a matter of days.... as my 30th birthday came and went 6 days before his scheduled arrival, I wished harder than I had ever wished when I blew out that candle.
I feel like 5 years in. 3 open heart surgeries, who knows how many hospital stays, ambulance rides, caths, needle pokes, echo’s and ekg’s in that I would be desensitized to this month, but I am not.
October 8, 2009.
My life would forever change.
The person that I thought I was, was no longer. I grew up more in those first two months than my entire 30 years prior.
I learned what really mattered in life.
I learned how to beg and bargain.
I learned how to be stoic when all I wanted to do was crumble.
I, the passive person that I am, learned how to fight for what she knew was right for her son. I became his advocate. I finally found my voice.
I learned how to stand beside this little baby that lived inside of me and keep myself together when all I wanted to do was grab him and run. To bring him home to his family.
I eventually got to do that. Many don’t. I am fully, fully aware of this.
I think each birthday that rolls around reminds me that we have made it another year. HE made it another year. He is not “fixed”. His repairs are palliative. We don’t know how long his half of a heart will hold out.
His birthdays are incredibly bittersweet for me. I am overwhelmed with gratitude. So much so that I don’t know what to do with it. I cry. A lot. I am crying right now. Sometimes crying is all I know to do. It’s been like that a lot on this journey.
The truth is, we wait. And wait. And wait. There are 3 surgeries. The Norwood, Glenn and Fontan. There are ages that those happen at. You have a “plan”. I like a plan!!! There is no plan now that he has had his surgeries and is doing well. So I guess I feel like we live in limbo a little bit. I want to know what’s next and when, but they can’t tell me that. It’s not up to any of us here.
And I know I have said all this before, but tonight in Ju Jitsu, which my boy loves so very much, I was slapped in the face with the reminder as I watched him start out running with his class. Then start to lag behind, then stumble, his face strained and pale. I thought he was going to go down. He sat down looking spacey and I called out to the coach. He recovered as I sat there shaking. Just shaking. Inside I was screaming something isn’t right, but on the outside I kept it together as best I could. I wanted to grab him and run him home just as I did as a newborn in that hospital.
Outwardly on a daily basis he doesn’t look sick, but he is. Sick isn’t the right word I guess. I don’t know what you call walking around with half a heart, other than heroic. It can’t be easy. Everything other kids do so easily is so taxing on him. I wonder what he feels like at times. What must that feel like.
I love him so much and I am scared. As he gets older I get more scared. I can’t explain it other than there is no plan. We watch. We wait. We hope. We pray.
Today scared me and reminded me that outwardly he may not seem fragile. He certainly doesn’t act it, but inside that little heart of his is working so hard. Life goes on. I get that. For us special needs Mamas, however, the fight continues. Inside our brains and our hearts, even though we walk around looking otherwise (most of the time ;) But most of all the fight continues inside all of our babies. These kids are the biggest fighters of all.
His birthday is just around the bend. It’s going to be a day of celebrating! FIVE years. I remember it all, and there is a lot to remember, like it was yesterday. All of those feelings and emotions threaten to overwhelm me at any time, but especially come October. There will be tears. Happy, full of thank you tears.
Life ain’t always beautiful, but it’s a beautiful ride....
I love you Paxton West. You and your brothers are everything to me.
Love and hugs