Is This Really Happening?
The time has come. The fantasy of my son just squeaking by on his medications, and looking healthy to the untrained eye… Has come to an end. Lucas will be admitted to The Dana Farber / Boston Children’s Pediatric Transplant Center on October 16th. That’s less than a month away, and I’m still pregnant. 38 weeks pregnant. I’m so scared. I don’t know what to expect. I know that this coming week Lucas has several appointments to get through to prepare for the BMT.
With that said, if this baby wants to come early… Then he has to come today, or wait until Thursday. Lucas desperately needs me in order to get through his appointments. No exaggeration. For some reason, he responds best to me. Probably because since he arrived on planet earth, he was literally attached to my breast for four years straight. I’ve slept with him almost every single night, and I’ve never missed a milestone. Except for that time that he decided to take his first steps with his Dad, and big sister. Sigh.
Every hospitalization has been just Lucas and I. Sure, Dad visits quite a bit. However, Lucas just feels unstable without me, and you know what? I wouldn’t want someone else to take my place anyways. I want to be there for him, just as much as he needs me to be there. So, you could imagine my nerves as I’m sitting here today having super intense contractions. There is no planning a natural onset of labor, that’s for sure.
Harrison will be baby number four for me, and I’m very hopeful to have a successful VBAC. I had two regular births, and then an emergency c section because little Jo flipped sideways during induction. Harrison has been head down this whole time. I am hopeful to go into labor on my own, and leave after a couple days with no complications. With everything else we are going through, that would be the best case scenario. However, I know all too well that it just can’t be planned.
In the featured image of this blog post, you’ll see Lucas holding a purple flower. This was outside of the dentist. He wouldn’t even let them brush his teeth. For those of you who don’t know, Lucas has Oppositional Defiant Disorder, and Anxiety. He also has sensory input needs, he’s very impulsive, hyper, and physically challenging. I call it the icing on the cake. We deal with two very extremes with him, the medical, and the behavioral. It’s almost like having a terminally ill child on the spectrum. Actually, it’s exactly like that.
I often refer to myself as a “Lion Tamer”. That’s because I feel like when the sh*t hits the fan, I’m the only one who can jump into the ring with him and get him out of his head. Redirection, positive reinforcement, time outs, rewards, sticker charts, ignoring him, punishing him… We’ve tried it all. Sadly, nothing works. We’ve actually been told that he is a non persuadable child. Imagine that. Imagine getting no help whatsoever when you seek it. We finally found a therapist that he gets along with, and that we love. Hopefully with some consistency, we will begin to see improvement.
I can only hope that we get through the next week of appointments. Monday: Therapy. Tuesday: Hearing Test, Oncologist Visit, and Echocardiogram. Wednesday: Lung Function Test, and the New Psychiatrist. Thursday: The Eye Doctor. Then on Friday I have another appointment for this pregnancy. That is also supposed to be Lucas’ last day of school. Thank God. Did I just say that? Yeah. Even though it’s nice to have him gone for a portion of the day getting his little mind stimulated, we can’t bear the mornings. He swears at us, screams, and barely eats when he knows he needs his belly meds to get on the bus, that he hates.
It’s a lot to deal with, and I’ve been okay for months. Just going through the motions. Maybe it’s because I fear the unknown, or that reality is finally kicking in. I’m not sure, but I’m totally starting to lose my mind. I decided to start blogging once again, mainly because I feel like I get therapeutic gratification from writing. Also, because my face is just not vlog worthy at the moment. I scratched my face the other night in my sleep, a lot. It’s a pregnancy related thing. It’s nice to have a place to vent, and a platform to share my stories with all of you. I know I’m not the only Mom going through all of this. Am I?
I hope to document our journey this way, and of course I will post videos when I get a chance to. If I even feel like it. Unmotivated, that’s what I am. Tired. Pregnant. Scared. I’m also thankful. We feel very fortunate to have a 100% bone marrow match for Lucas. Our room at The Ronald McDonald House in Boston is being paid for by some very dear friends and their non profit organization, The MCH Fund! Please take a moment to stop by their page too, and see what amazing people they are.
For now, I will go lay down some more. As I feel it’s the only thing I can do today. Although, I did manage to shower, fold laundry, and put it away. I’m packing my hospital bag, and praying that Harrison hurries, or waits until Thursday, and not too much later than that. I really don’t want a c section, without having proper recovery time before I take Lucas & Harrison to Boston. Jeez, maybe I should write a book.