I've been neglecting this little space lately. So right now I pledge (is that what you do… pledge?), anyway I pledge to write more often. Twice a week at least, or maybe I should be realistic and commit to once a week just to be safe (we'll just see what happens). To be honest I know this lil nook really helps me process all of what's gone on and I want one day to be able to look back and have it all documented because all of the details and the emotions blend together after awhile and it's hard to decipher any of it.
I know my thoughts gain clarity when I'm alone with them. I haven't had much time to myself which is odd given that I feel so isolated. Daddy and Grandma and Auntie are on rotation so that I'm not alone in this for too long but it wears on a Momma not having seen home (or anywhere really) for this long. Not to mention not having a real break from my little old man and from all that comes along with this. So forgive me for any confusion but here's my best attempt at separating all that's happened in the last several weeks…
I'll start with the great news, we found out the results of Kiah's chimerism testing (engraftment analysis). The donor cells have engrafted! This means that the enzyme missing in his body is now being produced by the donor cells. We are thrilled.
In the past weeks we've been back and forth between the Ronald McDonald House and the Children's Hospital (mostly the hospital). Been discharged a few times but readmitted due to random fevers. Momma's heart stops every time the thermometer comes out. Most of the fevers haven't amounted to anything. He did however get something called PJP pneumonia a few weeks back and it had us really scared for a bit. Thankfully he was started on an antibiotic and improved very quickly. I am learning and comforted by the fact that the back and forth, up and down of all this is to be expected (you would think I would have caught on after 14 weeks in the NICU).
The main difficulty Kiah is having is a skin rash that covers his whole body. The doctors have determined that this is likely a form of skin GVHD (graft-verses-host disease - where the transplanted immune cells attack Kiah's own cells). This is being managed by high dose steroids and topical creams. Oh, and let me tell you, steroids and toddlers don't mix. My lil monkey has turned into a wild ape. Actually the whole primate thing is a good fit given that one of the drugs he is on actually stimulates hair growth. He is quickly developing a mustache. Really the hair growth is not isolated to just the mustache region… it pretty much covers his whole face and is working it's way down his body. Interesting look given the bald head and steroid induced chubby cheeks. Truly he pulls it off quite well.
don't let the smile fool you… ;)
I've been debating even writing this (started a couple of times in the past weeks), not wanting to sink in the molasses of these raw emotions and not wanting to spend even a second more dwelling on the aches and pains of this reality. But the truth is I am stuck. I am stuck and the only way out is to to sink deep, inhale the smell, taste it and move on (easier said than done). This is my attempt…
Few will ever understand what it is to carry your baby for just six months and then have that baby taken from your body while you lie asleep and helpless. Being unable to see him for thirteen hours and than watching that tiny soul struggle to survive every minute of everyday afterward.
They won't get what it means to stay awake at night watching the rise and fall of his chest, obsessively counting his respirations.
They can't comprehend what is is to sit in countless appointments where that baby of yours is picked apart in pieces. Then spending the weeks and months following putting those pieces back together in your mind, in an attempt to keep your sanity.
Few will know how it feels to hold yourself together while you carry your baby down a long hallway towards the operating room, handing him over for yet another surgery.
How do you describe the day you are told your child has a horrible disease that will drastically shorten the length and quality of his life, the piercing sound of your scream, the acidity of your tears, the ache of your soul.
Few will know what it is too see your toddler intubated twice and lie lifeless in the weeks following, fighting for life once again. Then spending 30 something hours awake with him as he works through sedation withdrawal, picking at his own body through hallucinations and clawing at your face.
How do you explain what it is to hear that the only way to preserve your sweet boys brain from deteriorating is a risky stem cell transplant involving chemotherapy. That their best guess is that your baby only has a twenty-five percent chance of surviving it all. They won't get making that choice and everything that goes with it. The heart wrenching moments you spent alone planning the details of his funeral in your mind as a sort of preparation for the worst.
Few could ever get the overwhelming guilt you feel for falling asleep and in doing so not pushing his morphine button at the 6 minute mark and then waking in a panic to your toddler screaming in unbearable pain. Watching him drool as the mouth sores make even his own saliva too painful to swallow. Bathing his cold weak body in a tub full of his own hair. Then spending countless nights next to him as he wriggles his body against the bed in attempt to stop the itch of his skin.
Few will ever understand the ache of this Momma as she lies helpless in the suffering of her sweet boy.
Sometimes the sweet aroma of molasses is masked by the sheer weight of it's stickiness.
To those of you who don't, I pray you never understand.
