I suppose I ought to make this post two parts.
I haven’t updated in a while and I suppose I am a bit ashamed of it. Mostly because I didn’t write only to avoid the disaster I created when I switched everything over to my own domain. I was so excited to start my blog journey free of domain issues, and hoped it would help bring in some income for our family, but when the switch became so overwhelming and time consuming… I just kind of shut down. It is an awful habit of mine, to be honest. I have no clue how to code, or how to add ads, or how to make this blog how it is “supposed to” look. I just know how to write. And the longer I put it all off, the more I wanted to avoid it. I felt like a failure.
Tonight, I had to write. I have so much on my heart and on my soul that I just feel cripplingly heavy. My insides are just, I suppose it isn’t describable unless you have felt it.
I don’t know where to start.
I took on the role of Southeastern Coordinator of the Chromosome 18 Registry and Research Society. I am beyond happy to take on this volunteer position. Part of my 2019 goals was to help more people, and this was a direct line into that. I want to help parents to advocate for their babies. I want our story, Georgia’s story, to inspire hope. I want to change the world for these kids. We have been so lucky and so blessed with Georgia and her health, and it just doesn’t seem right to not help others when we can. I don’t know if any of that makes sense, but I am trying to straighten everything out in my mind as I type. I am trying to just, get this out of me.
Here is the thing about helping new Trisomy families. It isn’t easy. Most Trisomy moms of older kids give up on helping newer parents because it is emotionally exhausting and honestly, can be quite depressing. Yes, it is wonderful when you help a new mom or dad find the care their child deserves. But then, you feel invested in that child, and when something happens to that child, you feel all the emotions as if it were your own. I know that it is strange, and maybe I am too much of an empath, I am not sure. But it is hard to watch a baby you have tried to help die.
The other side? The parents don’t listen to your advice and then the baby dies. That may even be worse. Watching a little boy or girl pass away because you urged that mama to get that baby help, and then it just doesn’t happen. God…. that will break you. It will incite anger and sadness, which is a deadly combo. You don’t know who to be mad at or how to process the grief of losing a child you most likely never met. It is hard. So hard.
But I want to help. So I will be strong. But damn, today, it was just exhausting to be strong. It was exhausting to shuffle my child from appointment to appointment. It was exhausting to be a mother while balancing the job of comforting an expecting mother who is frightened. I am rambling off the list of equipment she needs to advocate for while buckling my child in her car seat. I am trying to give my child 100 percent and their child 100 percent, and it is exhausting. And then, another parent messages me, and I feel compelled to help her too. And then a father, in another country, with most likely no hope for his child, messages me in a foreign language asking me what to do. What to do? I don’t know. I can only give what I have learned in the two years of stalking Facebook groups for information. I know I am not obligated to help, but I feel called to do it. I feel like God gave me this task. And it isn’t one for the weak of heart.
And maybe there is a part three to all of this. Maybe I am more emotional right now because my sweet little girl is turning two years old in less than five days. The thought of it makes me want to cry. Every time I think of her birthday, I relive every single moment. The good and the bad, the ugly and the beautiful, the trauma and the victories. Everything washes over me, and I for a special needs mom who most likely has some kind of PTSD from watching her baby have needles pressed into her forehead, that reminiscing can be emotionally exhausting on its own.
There is so much joy in this journey. There is beauty where you least expect it. I love the lessons God has given me in this amazingly overwhelming journey of parenthood. I love that I can embrace the different. I love that my daughter’s smile is worth so much more because we fought for it. I love to see her thrive, to see her play, to hear the doctors and therapists and nurses just in awe of her accomplishments. She is a miracle. And miracles do not come for free.
I sit here now with tears falling into my lap as I think of the sacrifices and blessings that my life has encountered in the last two years.
It’s been beyond words. And honestly, unbelievable. In my child alone, I have witnessed God’s goodness, His infinite love, and His power in prayer. I have see her brain heal itself, her heart heal itself, her tiny airways open up. We were told so many things would just not be possible, and yet, here we are, with an almost two year old who chugs strawberry milk and shakes her head no when I ask if she missed me. She is the child I prayed for every day when I was pregnant, and the child I mourned when we received our diagnosis. She has, by all definitions, been fierce in the face of adversity.
God knows I am grateful for the miracles. I am grateful for the strength. I am grateful for my incredible marriage that took a hardship that would cripple most, and we internalized it into our own sort of super power. If it wasn’t for our miracle baby Georgia, I can’t imagine where our lives would be. Maybe easier, but less full, less happy, less joyful.
And I want others to feel this. I want others to see God’s goodness. I want others to believe that prayer can change things. I want other Trisomy 18 kids like Georgia in this world… because their parents had the resources and knowledge to give them a chance.
I’m tired of watching these babies die.
On that note, forgive me as the site goes through some changes as I attempt to figure out how to make this a successful-ish blog. I appreciate every comment and every share and every bit of support. It truly gives me purpose.