Sweet, sweet boy,
Today baby boy you are three. However you were sure to remind me this morning that you are a big boy and not a teeny tiny baby anymore. (I'll do my best to let go one day, but I can't promise anything). I usually write this early on your birthday, in the wee hours of the morning before you get up while I have some clarity of thought. This year is different. Here I am with just an hour left on this special day, struggling to find the words to describe to you how truly perfect you are, and how every bit of who you are inspires me. I realize instead that I, along with help from others did our very best to show you today.
This morning we woke up with dinosaur and kitty cat hugs and watched a special video (several times), sent by Auntie and Milo. We then rushed out to a last minute clinic visit where you were greeted with the warmest birthday wishes of everyone who passed you by, it was as if you had a "Birthday Boy" sticker across your forehead. Everyone remembered and they all made sure you felt special. Before we left some of the gang came to sing "Happy Birthday" to you in the waiting room and give you a special gift. You spent the rest of the morning listing all of the Doctors and Nurses who were there singing and even a few who were not. I think you felt so overwhelmed at that moment you included a few with the rest of the bunch. I went along with it knowing it added to you feeling special.
After making a few more pit stops at the hospital we ventured out to the park. You have had and continue to have no interest in the park equipment, just wanted to head over to the "special" basketball net where you can be lifted up to slam dunk the ball while saying "Michael Jordan, Michael Jordan, Michael Jordan" (not to sure if your hoping to channel him or what but it's pretty much become your routine). A couple of times you got mad at the balloon I had tied to your pants, but were easily distracted by your love of the game and your need to practice your jump shot. And while you were on the court today, two nurses sat in the shade each playing guitar right across from the net, what are the chances we could combine two of your very favourite things at the same exact time on your very special day.
From there we headed back to the Ronald McDonald house where some of the staff and the house guests were waiting to greet you, they sang "Happy Birthday" while you wore the special birthday hat and I think you felt pretty important covered in glitter and
pom-poms. For lunch you ate your usual hotdogs, cheese, and noodles this time on an Ernie-orange plate (cause you still see the world through Sesame Street coloured glasses and because orange is currently your favourite colour). After lunch we went outside to blow bubbles on the deck. This a great feat considering your long time fear of bubbles (makes me laugh after all you've been through and your scared of bubbles). ;)
Afterwards it was time for a quick nap. When you got up Daddy phoned and had a special surprise waiting for us downstairs. You then stopped to notify me that Daddy was your best buddy, not shocking given his special present. Along with that, a gift was left at the front door by one of the food service ladies you became attached to while on the unit (I am still in awe of how people are drawn to your spirit). Then it was time for a walk down to the pond where we chased the ducks with the motorized boat that Daddy got you. We also fed the ducks their "toast", (as you like to joke) and we giggled as we pretended they were singing "Happy Birthday" to you. Your belly laugh is my most favourite sound in the world, it lights me up inside (not to be confused with the cackle you've been forcing out lately). :)
By then, it was time for supper. We ate in the dining room with the other house guests and before dinner you were presented with a special batman cake that the ladies had made for you. Everyone sang Happy Birthday once again and you sunk down into your chair with the shy, coy little smile you often wear in these situations, loving every minute but not wanting to let on. After dinner we did the same with a cupcake. Almost every night you like to pretend it's someones birthday. You poke straws, toothpicks or stir-sticks into a cupcake and after we sing you pretend to blow out the candles, so you have had a lot of practice since last year but there's nothing like the real thing. You even made sure to share a cupcake with a friend and you were very proud to sit next to her at the table while you licked icing off your fingers. Then it was time to show you the orange bike and helmet we got for you. You were really proud riding it around the dining room with blue icing smeared all over your face. :)
Next we played instruments (mainly the bongo drums you'd been asking for all day), and sang songs in the craft room. Before leaving to go back to our room you drew pictures of happy faces as you often do and said goodnight to everyone. After your shower we put our towel hats on (really just a formality considering you have no hair). We cuddled in bed and phoned family who were waiting to wish you happy birthday, you were excited to "hang up" on them. Later, I tried to bongo drum your back, at first you thought this was very funny but I took it too far as I often do and you were done with me being silly. Before it was time for bed we watched your favourite Elmo videos Will-i-am being at the top of the list and finished with Kitty Birdie (Katy Perry) chasing Elmo, while half-naked. We said our goodnights and squeezed our dinosaur and kitty cat hugs before you cuddled/chewed your monkey to sleep.
The day ended just as it had begun, and to think I've spent the last few weeks worried that you wouldn't feel extra loved on your special day. Not just on your birthday but everyday, this space is my love letter to you. I hope you read it one day and always know what a gift you are in my life. You are the sweetest soul I have ever known. I am your Mommy and you are my Buggy Bear in that very first moment three years ago and in every single moment afterwards.
Three!
Just a quick photo heavy and music inspired post to share some of the sweet spots over the past few weeks…
Since he was just teeny tiny, Momma's boy has always been all about music. And over the past year especially music therapy has helped him through some difficult times, allowing him to be a kid for a short while. Really he's like a musical genius and he takes this stuff very seriously. ;)
Oh and the harmonica playing drummer… yup, that's the best Daddy in the universe.
I stumble in the darkness… No not just a metaphor for my life currently, I did actually just stumble in the dark (tripped over my Crocs to be exact… yes Crocs). I'm writing in the darkness of this room, our room. Not wanting to risk waking the sweet boy in the crib next to me. I've been awake for too many hours now, yet in this silent space my mind is busy…
It's wearing on him, as it is on me. His little body aches and he tires quickly. Unable to sleep soundly after months of intrusion. Hospitals aren't exactly conducive to sleep. This fact shouldn't be so surprising considering about nine months of Kiah's almost three years have been spent admitted to one hospital or another. From the beeping of the machines to the frequent blood draws and the continuous diaper changes it's surprising he sleeps at all. Now back at the Ronald McDonald house, he has become the interruption, calling out constantly in the night.
His muscles are weak, and his body tremors, unable to regulate it's own temperature. Daylight often finds him on the hip of a family member getting down only for energy bursts that are short lived. His temper wild, easily agitated, a side effect of the drugs overwhelming his tiny form. Sweet boy is all tuckered out and having difficulty managing his emotions. Welcome to the club lil guy… welcome to the club.
He misses home and asks about it often. It's proving more and more difficult explaining to my almost three year old all of what is going on, why we can't just pack up and go home, why we can't sleep in our own beds, why we can't see our family.
There is light though, in this darkness. We are making it through to the other side. Momma's sweet boy continues to grow stronger every second and I look so forward to the day the weight of this has lifted and it all becomes distant.
My eyes now heavy, I know that if I hope to get any sleep at all I better step over that Croc and crawl back in bed. Goodnight and Good morning.
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.
