It has been a month….
(Before you get all judgy – i am tired, i don’t like editing and so yes there are several mistakes in here – get over it….the world has bigger problems than which “there” I used.)
This last month has been a whirlwind. When we walked into the Childrens Hospital on August 11, 2016 I knew that it would be to confirm the diagnosis of SMA – Spinal Muscular Atrophy. I just wanted to get it over with. I knew in Winnipeg that he had SMA….I was just waiting for a stupid piece of paper from the genetics team to say that he it. I didn’t even really cry when they delivered the news. I just sat there holding him and then asking what is next. It was almost like a business meeting for me. I held my chin up high and tried to just be okay, I didn’t want to cry. I asked what type of funding the hospital needed, I asked what appointments would follow, I asked how we could best maneuverer in the process. I asked questions because I wanted answers. The doctor said normally they just deliver the news and then explain what SMA is. Unfortunately I know it all too well – more so type 2, but I know it, I have lived it and cared for it. They had told me a week earlier when we first got admitted at Alberta Children’s that he was likely not going to make his first birthday. They said Type 1, at first I was grieving him not walking, I was grieving the wheel chair van. I wasn’t even close to thinking he wouldn’t even make it 12 months.
That is the day that I took hardest – AUGUST 5. 2016 – 2 days before my 32 birthday. I swore (like really bad every choice word I could find I said it), I cried, and then I cried some more. I actually went into the fetal position. I could barely move or breath because everything I had dreamed of was being robbed, stripped away. My hopes for my kids to be chasing each other around the backyard next year, little league and family trips were no more. I lieterally just surivied 10 months of pregnancy – it isn’t 9 people, it is more like 10 – and BAM my baby was being taken away…..That day I took the hardest. That day I could barely breath, that day will forever be etched into my mind.
So what has the last month looked like? Well pretty incredible and pretty shitty (sorry Aunt K for the swearing) but that is really how it has been. The amount of texts, calls, emails, and messages I have received is overwhelming. People I haven’t seen or spoken to in 10-15 years have reached out. Kids I was a camp counsellor for have messaged me, donated and showed up, coworkers who I didn’t think even really liked me have had written personal letters……our friends have rallied around us. A team of my besties have managed to put up a website site overnight (love you J), design a logo which I love and I am a hard person to please, create a meal sign up, start a Go Fund Me campaign that has grown beyond our expectations, host spin fundraisers, send people to come and clean my house, and literally just show up to help with child care. IT IS CRAZY. It has blown us away.
I don’t have words and probably will never have words to properly thank everyone who has and is journeying with us. I don’t get to responding to all the messages and I can’t keep up with all the comments, but I will tell you this. I read them all and am encouraged, I find strength in numbers and the fact that people are taking time out of their lives for us. People have surprised us. I have to brag about my fitness family they have stepped up big– literally almost all the meals delivered thus far have been from clients that I teach Spin or Lagree to. The fitness community is strong – ha get it….bad joke and I have already used it, but it is seriously true. We have been so supported we couldn’t ask for more. Well we could ask for a cure – we are asking for a cure – where is that brilliant scientist that should be able to fix this….I want that. The highs have been high. But the lows have been low. I daily think about what I will have to say at his funeral. Yes that crosses my mind every single day. It is scary and it sucks….
More of the shitty part. Lewiston caught a cold, a virus, something…. I took him into ER on Saturday September 3, 2016 and had an okay visit. They did an x-ray and sent us home saying it was a cold and he would get through. I asked for suction as he sounded so congested and they said they didn’t do that. But HELLO – I now own a damn suction machine. I can carry my suction machine anywhere – BS you don’t suction,I can suction and I didn’t go to med school for 7 years. (the things I am learning) A challenge with this disease is that lots of Doc’s aren’t comfortable or familiar with SMA. Anyway, knowing that a few days later we had a scheduled follow up with Dr. Mah our Peds Neurologist I went home not too worried, worried but not too worried.
On Tuesday after his weight check up and then breast feeding in front of Dr. Mah she decided that we needed to get admitted and insert an NG feeding tube – that cute tube sticking out of his nose. He was having trouble swallowing and sucking, not gaining enough weight and need calories. I noticed his weakness but didn’t want to admit that he was declining faster than we had hoped.
So we checked into the Plaza – A.K.A. the Alberta Childrens Hospital – Unit 3 (represent best nurses ever) and stayed till Saturday Sept 10. 2016. More tests, more learning and fantastic care from our team of medical professionals. That brings us to present day. The road at the hospital was a long one, watching him struggle to breath, learning how to insert over a foot of tubing through his nose into his stomach and caring for our little boy that really is so innocent was hard, but we managed. Ronnie and I fought, we cried, and then cried some more. How is this our reality? How is this evening happening….
I have gone through every emotion. Mad, sad, angry, tired, frustrated, sad and then sad some more. I have wept with friends, nurses, doctors and family. I have scared off residents with my abrasive nature to ensure I get what we need and what is best for Lewiston – ask about me calling Simon 12 years old and the approval for the feeding pump – currently my fav story to tell. I have drunk way too much Starbucks and not had enough water. I barley wear mascara as it is usually running down my face by 10am and I haven’t worked out in a long time. Life has changed…..
Every time we go in now we meet with the Palliative Care team. It is hard, hard because it makes death seem so real. However they are beyond amazing and know how to make stuff happen. I can just imagine how those conversations go “well my patient is dying so it trumps yours…..now get it done” Seriously though if you need something at thei hospital just get the Palliative Care team involved and they move mountains. Probably too soon for that joke but deal with it.
So it has been a month. A full month of living with this shitty news. He has declined faster than expected – we really thought he wouldn’t need a feeding tube until November or December. He is much weaker than just a few weeks ago, BUT, he can still smile, he can still charm the nurses and doctors and he truly has become the most easy going baby all things considering.
Tomorrow we fly out to Winnipeg to see my parents and hang out at the farm. We are taking pictures with the family and I am going to enjoy the sunset.
Thank you for journey with our family. We are still fighting for his life don’t get me wrong, but I also need to live in reality and deal with the mess of the day to day.
In his grip,
- For a new trial to become available that has amazing results
- For our marriage – for me to be patience, and tender
- For Swayzie to be gentle – especially now with a feeding tube in
- For Lewiston’s Nexus Card to get approved and for him to get an interview and the card before we leave for Salt Lake City (Oct 13-Oct 18)
- For Lewiston’s strength, improved breathing, swallowing and overall health
- For a miracle a straight up miracle – complete healing