I'm forcing myself to write tonight… ;)
He snuggled in, chewing the corner of one monkey (sometimes two), sandwiched between his favourite fox and elephant blankets, cozied up in stripped jam jams… It was a relief to see him there in his new bed in his own room even if it was only for a few days this past week. I sleep better knowing he's in the comfort of our home. Too many nights spent away, 627 from the time he was born to be exact (yes, I counted). 627 nights our family was divided, one of us sleeping the night with him, the other in the quiet emptiness of our home. Gawd, I miss being a family and all of what that looks like to those unfamiliar with this life.
Since the last time I posted everything has happened yet I remain still in this space, lonely in the darkness of this. The world is moving, life goes on. Babies have been born that I have yet to lay my eyes on. Weddings celebrated, my presence just in love and warm wishes. Vacations have been enjoyed and experienced. Birthdays and holidays have been cheers'd to. The loss of family members are being grieved. Life goes on. All while I remain still in this space, enduring the ache of this life which is difficult at best.
We spent the last six months admitted to ACH on isolation. Infection after infection, it was later discovered that Kiah had developed grade 4 GVHD (graft vs host disease) in his gut. By that time it was too late, his colon was beyond repair. Months of complete gut rest, him curled in the fetal position in intense pain, stomach cramping and guttural moaning. It was decided that the only option was an ileostomy, which was performed on August first. We are holding out hope that at some point the surgeon will be able to reconnect his small bowel to his rectum. To say this has been difficult would be a gross understatement. We are heartbroken, another hurdle sweet boy will have to overcome.
As usual he handles it like a champ. He knee slaps in laughter and lightheartedness about the very things that make me weep when his bald head hits the pillow. His ability to let go of what just was in order to fully enjoy what is now astounds and inspires me. I have difficulty everyday making sense of how such an innocent soul could be so profoundly wise. There is knowledge behind those big brown eyes that I am certain I will never fully grasp nor come to understand.
For now I hold out hope that more and more nights will be spent at home, chewed monkeys, stripped jams and all.
my sweet little old boy…
I am full to the top… and empty all at the same time. Not surprisingly it's been awhile since I last posted, no excuses (don't need em'), it's just been awhile.
Sweet boy had been sleeping in his own bed, in his own home. We hadn't yet been discharged to Edmonton but were able to spend a few weekends at home as long as he was doing well. It was everything. That was until we were admitted two weeks ago, initially with a fever caused by a blood infection. Most recently due to a virus that may be suppressing his bone marrow.
It has been 249 days since Kiah underwent a Umbilical Cord Stem Cell transplant and everything that goes with it (261 since we arrived in Calgary). The transplant was a success. His last chimerism blood test confirmed once again that one hundred percent of the cells being made in his body are donor cells. Therefore he has not received his weekly Enzyme Replacement Therapy since day 100 (back in October).
Blood infection aside his main issues now are the instability of his blood counts- he is currently needing sometimes twice daily platelet transfusions and red blood every three to four days. As well as managing his skin (Graft Verses Host in the form of a rash). Unfortunately resolving these complications takes time and it will be several more months before they transfer his care back home. In the meantime his immune system is greatly compromised (as we've seen with the two reicent blood infections and new virus), due to his long steroid and cyclosporine wean. It has been over eight months since Kiah has been able to be in any sort of public place besides the Ronald McDonald house, Alberta Children's Hospital and our home. Worse yet, he now remains on isolation at ACH due to the current virus. Truth be told he doesn't seem to notice. As usual he is unfazed by all of it. This is his normal, it's all he remembers and everything he's used to. That fact saddens me to my core and yet provides me relief at the same time. I would give anything for him to have a full life and all that he deserves.
Regardless of where we are, our days are full and I often find myself caught up in his joy, just as I always have. Even in the darkest moments sweet boy brings light and laughter to the surface. He currently insists on being called "Dr. Love" by everyone he comes in contact with- it was Buttercup until Dr.Love took over recently (both fitting I think). <3
some of the bright spots of the last few months…
Sometimes Superheros reside in the hearts of small children fighting big battles.
- Unknown
For my Sweet Boy who has always worn the cape,
You are my breath hold, you're my exhale. You are my best accomplishment and my most intense fear. You are my grey strands, you're my laugh lines. You are my greatest weakness and my deepest strength. You are my downfall, you're my uplifter. You are my tension, you're my release. You are my best distraction and my focus in life. You are my favourite teacher and my revealer of all life's lessons.
You are my batman, my superman, my light in the darkness, my bringer back to earth. You are my hope in all humanity, you're my faith igniter.
You are you, and all of who you are makes me all of who I am. You sweet boy are my superhero.
Love, Momma
In tribute to all you've achieved, and in honor of World Prematurity Day, a few photos from those very first moments…
