We are on day 4 of chemo and so far little Riley has been tolerating it amazingly well. The doctors and nurses are so on top of monitoring her and staying ahead of the early side affects with meds for things like nasuea, rash, etc… I could defineltly go on about the serious lack of sleep I’m experiencing and how losing the baby weight may be easier than I thought since the time to eat is difficult to find but who wants to hear about that? Yeah, yeah I’m tired…no shit…what new Mom isn’t? Riley is holding her own with all they are throwing at her and so for today things are looking good.
I have developed some wonderful relationships here in the hospital; as it turns out a serious bond can be formed in a short time when the common denominator is a sick child. When Kate (my old neighbor in the PCRC) showed up I remember passing her door the first few days…peering through the glass was like looking into a mirror…she looked so tired, so broken…just as I did in my first days. Introducing myself and assuring her that it would get easier somehow helped me as much as it did her and maybe even more. I felt a responsibilty as the “seasoned” SCID mom with a few weeks on her to be positive and comforting…as I spoke I began to realize things really had gotten easier for me, I wasn’t sure when it had happened but it had. It’s a bizaare thing living in a hospital…we’re going through the hardest thing imaginable and our friends and family are all hours away, unable to be by our sides while we live this everyday life. As much as I wish neither of us had ever been put in this situation it sure is damn nice to have each other. As the days go by and we are delivered good, bad and indifferent news by the doctors at least we have each other to lean on. We talk, cry, laugh, reassure and sometimes it’s all done over a beverage…choice options being beer and/or wine. For the time it takes to down a bud light we can escape our realities and it almost feels like we’re sneeking around in a college dorm or summer camp. Now that Riley and I are up in the BMT unit I do miss Kate being right next door but she’s just a quick elevator ride away and soon her lil baby will be ready for transplant and we’ll be happy to welcome them to 7 Long. The transition will be rocky for her just as it was for me at first but again I’ll be happy to share that it does get easier 😉
My new neighbor Alicia is a SCID mom too…she’s been here with her son almost 6 months. This girl has got a heart of gold and is quick to offer up little tricks to making life here a bit nicer. My second day here she tapped on my ante room door:
“Hey Alissa…I just saw there’s a really nice rocker in the hallway…do you have one?”
“What?! They have rocking chairs here?!”
“Yeah, but there’s only 7 in the WHOLE hospital…it took me weeks to get one…you should call your nurse quick and see if you can have it”
Within minutes my nurse was sanitizing that glorious leather rocker readying it for our enjoyment. And enjoy we did. Now that is some good looking out on Alicia’s part. Having a comfortable chair to rock Miss Riley in feels like a dream, such a normal thing to do with a newborn that I hadn’t had the luxury of but now do. I simply could not be more grateful for my new neighbor or this chair 😉
This afternoon Alicia and I snuck away to the 2nd floor Peets to induge in a frap…hey we deserve it, right? 😉 Exiting the elevator we ran into a little boy whose room I often peer into and swap smiles with. He is the sweetest little thing you’ve ever seen, he wanted to show us his disco dance moves so his Dad cranked on “Stayin Alive” (his favorite song) and a full on dance party ensued in the hallway…his little wheelchair could barely contain the fury of his moves. Doctors, nurses and even the guard that checks in visitors shook their bootys as they passed. Alicia and I then scurried down the hallway ducking behind IV poles, X-ray machines and desks to jump out with a “peek-a-boo” as his Dad raced him down trying to “catch” us. The sound of his little laughter carried through the whole unit and lit up everyones faces. You know being in a childrens hospital can be so excrutiating, you see and hear some of the sadness things…but then there are moments like that, moments that almost make it all okay. Moments that make me realize that our kids are all so amazing and as terrible as this it there is a true beauty in experiencing such unfiltered joy within these walls. A joy that so many will never know, will never understand. While most of the kids on this floor have lost their hair their spirits have gone nowhere. Beneath the frail exterior of chemo these youngsters are the strongest little beings you could ever imagine. I plan to spend my days here soaking up as much of their laughter as much of their light and as much of their strength as I can. In this hospital setting these kiddos are the teachers…us adults have more to learn from them then we could ever teach.
Tonight while rocking my little Riley to sleep we had a staring contest as we often do…her big blue eyes glued to mine. It’s obvious that the chemo is beginning to wear on her but it hasn’t changed her gaze. Looking in her eyes I can see how strong she is, those baby blues aren’t asking “Mommy, is it going to be ok?” they’re saying “Mommy, it’s going to be ok.” She kept on grinning until she lost the battle of waking and her eyes fluttered closed. My lesson for the day…keep on smiling because they are…lesson learned.
As always thank you so much for the support. xoxo
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