Have I ever mentioned that I’m a control freak. I admit it. Though I’m rather blase’ about it. I pride myself with the ability to roll with the punches. Yet I really don’t. I just pretend. Until I can catch up and truly roll. The Sibs arrival on Monday really threw me. Truthfully I wasn’t even looking forward to seeing them. Why should I see them, when I won’t really be present for them. It will only raise my anxiety and add more to my plate. Thankfully, they did come. Monday stressed me out to no end. Those of you that know Curtis REALLY well will get it. Curtis has Asperger’s and during the last 42 days, yes, it had been 42 days since we had seen each other, I was beginning to question if he really was a little off. “Am I making am mountain out of a mole hill?” “Am I LOOKING for issues in him, just for attention?” “Can I just not handle my child?” After only 5 minutes with him on Monday, the answer was a resounding “NO, you are not making this up. Curtis is certainly wired differently.” It was overwhelming and I forgot how to handle it. I forgot how to compatmentalize it and not explode. I didn’t explode, I kind of walled myself off and interacted with everyone in a very protracted way. While madly running around this little room, keeping my hands and body busy. Truthfully, all I wanted to do was to be back HomeHome, quietly cuddling with them and sharing in a communal cry. Not trying to get that connection side-by-side sibling who is fighting for his life, in a very public hospital room. These three beings we have created are my life. Every thing that I do is to get them to a happy, healthy and fullfilling adulthood. Everything. Sometimes I don’t think they really know how much I love them and to what lengths I would go to, to secure them. Not in a self-sacrificing way. Never. My take on parenting can be summed as follows:
I see every person in my life, this way. We are here to enrich, witness and experience. Together, in our separateness.
Curtis, AnnMarie, my mom, myself and Gregory spent a good portion of today hanging out in the room. Thankfully Gregory had a relatively slow “hospital” day. Counts? More of the same. Fever? More of the same (Day 9) Platelets? Of course! Weight? Holding at 13.9k (Thank you, thank you, thank you) His heart rate is lower, if you can call 130-150 lower. His temperature spikes are quicker, shorter. Not nearly as high, but I think they are more frequent. The sibs and I ran to the book store for some Retail Therapy. I have yet to locate a great second hand book store so we hit the local Barnes & Noble. Which in my heart of hearts, I cannot stand. Yet it has books and books were what I needed. I finally picked up Expecting Adam. I SHOULD have read it nearly four years ago, sorry Tana. I was also told to read A Prayer for Owen Meany by John Irving. It came highly recommended by Dr Manley and one of my favorite nurses, Susanne. I had to buy them ’cause the magic that is Kindle does not have every book. Which I’m totally good with, ’cause I have a romance with BOOKS. The feel, the smell, the weight. The pride in seeing a stack of well loved favorites. Being able to thrust one at a friend and say “HERE! You NEED to read this!” You can’t do that with a digital copy. Sorry. I wasn’t able to find Hooray for Diffendoofer Day. Shame on B&N. They don’t stock it. Shame, shame, shame. So instead he received “Where The Wild Things Are”. Here’s my confession. I’ve never read this book. I’ve been a parent for 10 years and we do not own it. Ever. I’m anxious to curl up with Gregory and dive in. I’m not even going to read it beforehand. We will both experience it fresh and new. Exciting? I think so.
This evening The Sibs and I spent a few hours at the apartment. It felt normal. I cooked food. I used a full size sink. I did laundry, in between. I took out the trash, swept the floor and directed the kids bathing. We sat down at a table, together, and ate. I think it was surreal for them, too. Every once in a while one of them would stop and say “I’ve missed you Mommy.”. Or comment on how they like something I said, which is just how we communicate, but they have been without it for 42 days and we both were reminded what we had been mising out on. I’ve been physically absent for 42 days, but I’ve been mentally absent for 121 days. I’ve decided that the only way I am going to make it through the next few years is to hunker down and focus entirely on our family. All the other stuff will still be there, but it will be fluttering on the edges. In order to keep a hold on my relationship with Curtis and AnnMarie, they NEED to be crystaline to me. The next year with Gregory is going to be intense.
While we were gone, Gregory developed a rash on his belly and legs. Around 6:00pm. I guess the nurse looked at it and grabbed the provider on the floor. This rash seems to be transitory. It appears for a little while, them moves to a different location. Do you know what this probably means????? He is engrafting. Let me repeat that. GREGORY IS PROBABLY ENGRAFTING! While this is by no means the end or even a full victory, it does mean that my knowledge has turned into a belief. I now believe that this will work. As we all know “Knowing and Believing are Two Different Things”. We could see some cells tomorrow. I am giddily rejoicing in this incredibly huge moment of his healing. This is a victory worth embracing. I sure hope we see something tomorrow. I respect that this is a “probably”. I just really need something, right now.
This year I will not be subjecting you to Gregory’s birth story. Which is something I like to do on the OffSpring’s birthday’s. It just doesn’t feel right to do it, this year. Suffice it to say, four years ago today, I was spending hours gazing at this little (he was 6# 2oz, or should I say 2.78 K) bundle of wisdom, wondering what fantastic things he was going bring to our lives. For sure, he has filled us with awe, wonderment, love, joy and yes, peace. Our RockStar has things yet to accomplish. ♥
I feel a little spent. I feel alot lighter. I can’t wait for AM labs. ANC, Baby. Here it comes. ’til later, gotta jet.