It's funny how after only three days of straight rain in Calgary and I'm done with it. I don't know how I survived so much of my life on the West Coast, the rain is draining emotionally and physically. I guess I can't really blame all of my current mental state on the rain but it certainly doesn't help! It's a rough day, well rough morning so far, guess I should try for higher hopes for the day. Every once in awhile life just catches up on you when you run from it long enough (at least that is true in my case).
Part of my rough start to the day was that Mr.B had the worst Night Terror yet last night. For those of you that haven't witnessed a night terror, the child (Mr.B) screams and thrashes about while staying mostly asleep. B was so far into it by the time I got to him I wasn't sure if he was actually even able to breathe as it sounded like his windpipe was restricted. The hardest thing to do through a night terror is to not panic yourself. This one was such a doozy that Mike even woke during it and got to witness one first hand. One of the few things that 'help' (when you feel helpless) is to turn on the lights and it helps to 'shock' him a bit. It lasted for a good 20 mins last night, with me holding him and alternately talking and singing to him with the attempt to soothe him while he 'slept' through it. I know night terrors are somewhat 'normal' in kids but B is only 18mths and with all the trauma he's endured it breaks my heart. It's hard to not think the night terror was due to the stress he endured by having to go through the contrast dye test yesterday.
The other part of it is that there have been a few deaths in the past month, no they are not my family members or even close friends but I feel a kinship to them nonetheless. It doesn't matter where you are from, if you hear of another Mom suffering after the tragic death of her child after battling life from the start, you feel. Close to home this week ACH lost a little one, Baby Hope who was born without the left side of her heart. I didn't know Hope, or Hope's story really but I did know her Mom in passing to say 'hello' in the hallway. There are so many of us at ACH that try to fight the good fight each and everyday and you think that maybe, just maybe your life might get simpler one day.
I have to say that there are not many of my friends that have an idea in mind of what their child's funeral may look like in their minds eye. Not many people, in their dark times, plan and try to imagine how life will possibly go on after losing their child, the love of their lives. But some of us do, I know I do. So many times I get asked by you or other parents with ill kids how I can possibly stay so positive. It's not something that just comes naturally to me all the times, sometimes it's really really hard, but what it is to me? A choice. I choose to try to find a positive in each and everyday. It is certainly much harder at times, days like today (when I cry while driving to drop off the 'big' boys to school for no apparent reason), when I feel the crush of panic mixed with non-stop exhaustion that I have B on a timeline. I just want to shake the hell out of the sands of time for a definitive answer, I want to know dammit how much time I have with this child! I had a discussion with another Momma of a sick little one yesterday about losing Baby Hope and she said it just makes it so much more clear that she could lose her daughter too, no one is 'safe'.
How do you ever come to terms with a critically ill child? You don't, you just live really. I have times of great clarity and I have times of complete and utter depression and failure. If I don't try to find a minute positive in my day to day life then on those dark days I will get eaten whole and my family needs me, heck, I need me.
There are days where it would seemingly be easier to just push everyone away but I've done that at other times in my life and it didn't work well for me. So many of you are now invested in B and his little life story (and for that I am so very grateful for you love and support). I see other parents deep within their grief for their ill/disabled child and I see ones that are trying to bring about positive change. Not one parent is 'smarter' or 'better' than the other, we just deal with what life has handed us differently. If you are friends with a parent that is the type to push everyone away, don't take it personally, it's really not about you. Don't abandon that friendship (even if it seems as though the parent may have), keep making contact in small ways by letting them know you are there. You can't be in the friendship if you need a response from the parent to feel validated she/he may just not have it in them. Every positive comment and a simply 'you are in my thoughts' goes a really long way to helping that person not feel so alone (although it may look like that's how they choose to live).
Our children are all unique and fragile, life can be too short for any child so hug them, nurture them and just simply L-O-V-E them always (even when you are frustrated/angry/done). While you may not be able to understand what we are going through, the constant rollercoaster of Mr.B, your support, kindness and love will never go overlooked (even if I can't seem to form a timely response to you).
I got a call late on Weds afternoon from Diagnostic Imaging that they had squeezed B into his contrast test Thurs (yesterday). I was relieved to get it behind us but I also felt the slow panic that comes with this test each time it happens. There are only a few things in Braeden's life that really stand out to me, so much of it is a blur but one. The day Braeden had to be 'coded' Code Blue is a day that will always stick with me. I can replay it in my head like it is in high definition colour. Knowing this same test was the start of the chain of events that led to his code that day just makes my stomach clench. Know I am well aware that Mr.B is so much stronger now, so much more prepared for the tests that they throw at him (not that he is happy about any of them).
We got to ACH yesterday (I thankfully had Ashley along with me) knowing that it was going to be a great day (test aside) because we'd been able to arrange a short (but sweet) visit with Braeden's first ever room mate Parker (NICU) and his Momma Jaime (Happy Birthday today my friend). There are few things as rewarding as seeing a wee one from the NICU being silly and being a 'baby'! I got to shamelessly snuggle Parker (would've snuck him in my diaper bag if I could've). Sometimes in life you just find someone that you 'click' with and Jaime is certainly one of those! She offers me/us strength and love from afar and we have some similarities as Parker is her youngest of three boys as well. We are obviously on different journeys in our lives and yet the same. We hope that we can meet again soon so that they boys can 'roll' all over the place together!
It was also a pick-me-up day at ACH because when you stand in the cafe at centre court at 12:30-1pm you tend to see all kinds of lovely people you know! We always love the chance to see any of our ACH family!
Over to DI and we walked into register and B started to cry. He's had more than his fair share of imaging to know where we were. It's so hard now with B being aware of his surroundings, he knows that he's there to be poked or prodded. We always see familiar faces at Diagnostic Imaging though and they are always happy to see Mr.B. (It was the AMAZING DI team that sponsored us for Christmas this past year). The test itself went well, we had the lovely Theresa there as the nurse and Dr. Haider there to read the scan as well as a second Radiologist. B tolerated the test better than expected and everyone got to be serenaded with Maroon 5 and Fall Out Boys songs (by moi), anything to make my sweet boy more at ease. The prelim results are that the Fundo is in fact intact still, they could see a good wrap still. His stomach seemed to be emptying well and there were no major blockages spotted. Great right? Yes, great but that also means no answers as to why B is unable to tolerate his feeds properly or why he is simply refluxing so bad when the Fundo wrap is there. I am grateful that the test is over and done with at least and I look forward to meeting with Dr.Brindle next week to see what her opinion is to move forward. The Motillium isn't making a considerable difference thus far either so my frustration is certainly high. I can maintain feeding him over 2 1/2 hrs but I'm not sure how much longer B will tolerate him as it leaves him 'upright' and 'strapped in' for that period of time. Not to mention my already lack of sleep coupled with B retching in his sleep with the ever present fear of aspiration into his lungs.
Not that life is meant to be simple...
I got a call the other day as well from Braeden's GI Nurse and she informed me that B's file is 'closed' with Dr.Wrobel. How on earth could that make any sense? This is a kid with his intestines surgically altered, he's gonna have a few GI issues through his journey not to mention he's on a daily med that she prescribed...yeah. Anyhow we are now waiting for that to be sorted out and for Dr.Wrobel to come back from her week away to get in to see her. Sometimes (just sometimes) I think of how much easier it could be to have him admitted then things happen on the Dr's time, not ours.
The update on the rest of our day is that it got better, Heidi and I took the boys out bowling in Cochrane and we had some good laughs. Why sit in the rain when you can go bowling or...
From Our Home to Yours...