Happy 2nd Survivor Day
Colby is a survivor is so many ways. Today marks the second anniversary of his stroke. In this 24 hour period two years ago our lives were irrevocable changed. Not for the better or for the worse. There is really no way to make a judgement call on that. I suppose that I could do the poor me pity party all the time but I choose not to. It's to exhausting to be honest. I have to much to keep track of and to get done. I am constantly amazed at how many people tell me that they admire us for what we do with our family. I don't think we do anything special. We live our lives one day at a time just like everyone else. Have there been occasions where we have lived one minute at a time. Absolutely. But in the end, Colby made the decision to stay so what choice do we have but to follow his example. He is such an example to me. He smiles everyday. How can I not smile when he can? How can I not look at the bright side of things when he finds joy in the simple pleasures of life?
First day riding the bus
In the last year we finished up his Hyperbaric treatments for awhile. So he has had 80 treatments all together. The difference in his comfort level has been profound. We had a relatively uneventful winter but we had to go and mix that up this spring. We put in a baclofen pump which came unstitched after three weeks. So we went back for emergency surgery. After three days we went home. Two days later we were back to take the pump completely out. He had staph meningitis. Because why wouldn't he? It's what Colby does. He hears all the potential side effects makes a subconscious decision to go through them all and then does them exactly as we were told.
He is a trooper! Three surgeries no pump. You would think I would be mad. To a degree I still am. But while we were there we found out his blood pressure was 172/112 consistently every 6 hours. That's not a good thing when you are three or four or forty four for that matter. So we added two more meds to the list. Because why wouldn't we? It's what we do. Meds, meds, meds and more meds.
In June I made the jump to night nursing. I hadn't slept longer than 3 hours in over eighteen months. I had to do something. Shannon if you are reading this, you are a life saver literally! I reread his sleep study right before we switched. I had forgotten that it said his sleep pathways were damaged and that the chances of him ever sleeping through the night are very very slim. So 5 nights a week I get sweet sweet sleep. It's amazing how much more energy I have and can take better care of him during the day when I'm not so exhausted all the time.
Anyway I got off topic. This post is about Colby not me, even though it's really about all of us. I fully believe Colby had a choice this day two years ago. I remember whispering to him. It was the hardest thing I have ever done. I told him that if he needed to go that we would be ok. I loved him and I hoped he would stay but if he made the choice to leave us I would see him again. It felt like he wavered for a few hours. Like he couldn't make a decision. Then there was as quiet of a moment comes when your in the ICU on a ventilator and a dialysis machine. I felt peace. It wasn't strong, it wasn't sure, it was a brief moment but I knew in my heart that he choose to fight. I knew he would fight until he won or until his body couldn't fight anymore. There were still three more weeks of very touch and go times.
Mohawk after they took the EEG leads off. We couldn't wash his hair really well from all the sticky glue so we gave him a mohawk.
We were told to consider taking him off the vent because his brain activity was so low. I told the neurologist that as long as there were waves he would stay on. I don't think (looking back with some perspective) that she meant we should take him off right then. I think she was trying to prepare us for the possibility. I don't think she expected him to live. Not many people did.
We went to breakfast while he went to have an MRI. All he had at that point was the dialysis stuff in him. When we got back he was hooked up like this. He coded during the MRI and they put him on a vent because he wasn't breathing on his own anymore.
When your child is given a diagnosis there is always some amount of uncertainty and fear. I don't think it matters what your child is diagnosed with it still comes. There is always a grief period. Always. Some people have what other people see as "easy" problems and others have what people might see as "difficult" problems. I have come to think of it as a matter of perspective. I have always said I couldn't handle a child with diabetes or with autism. Why those two stuck with me I don't know. I've learned I need to be much more specific in life. But really, who would ever think to say I can't handle a child who has a bilateral basal ganglia infarction, loses his motor skills, ability to speak, eat, or do the basic things in life? I didn't know enough to say I couldn't handle it so I had to decide to handle it.
Off the vent but still doing dialysis. The tube in his nose was feeding him.
I've talked about grief before on this blog. I don't know that I'll ever stop talking about it. Just because you grieve doesn't mean it's constant or that you focus your life on it. At first you do. But it also doesn't fully go away. It's always there in the back of your mind, kind of like a shadow hanging over the rest of your thoughts. I think I will always have a hard time watching boys Colby's age play. My brother and his wife are having a little boy this month. I am so happy for them and so sad for Colby all at the same time. It is bittersweet to see their joy and still feel my own pain. I hope I explain that right. I'm not sure it's possible to put it into words. There are days these emotions surprise and shock me even still. My hopes and dreams for Colby had to be replaced all in the matter of one 24 hour period. I still have hopes and dreams for Colby but they are different ones now. You go through life thinking one day doesn't really make a difference in the grand scheme of life until one day changes everything.
I was cleaning out the toy room this last week to have a garage sale. An ordinary thing to do in most households. Yet after 30 minutes I was sitting on the floor sobbing. Holding Colby's football that had his name written on it. I didn't expect it to hit me that hard. And so for 5 minutes I let myself feel it, then I put away my grief to move forward. Colby is a survivor so I will be to.
This picture is actually before he went to Primary's. It's the day after his appendectomy when we still didn't know anything was wrong. See how not puffy he is. In the next picture he is swollen because his kidneys stopped working.
What I am trying to get at is that today is a happy day. Really! We have so much to be thankful for that I choose to focus on all that we have on this day. We have met more amazing people than I can count. We have seen the Lords hand in many areas of our life. We have felt the angels that surround our home. Some might wonder why it's taken me this long to share the pictures of his story. The hole in my heart has finally healed enough for me to start sharing. It's something I need to do. I feel compelled. If his story makes one person aware of what e.coli can do to a child it will be worth it in the end. Colby has a story to tell. Maybe not with his voice (even though I believe he will talk again) but with his life. He inspires me to be a better person. He makes me put perspective on my life. Life is precious and it's to short to waste on the unimportant inconsequential things so many of us get hung up on. When I feel myself doing that I force myself to step back and remember the things that truly matter. He reminds me that each day is a gift and that I had better make the most of it. If he has to fight hard then I will fight harder for him. And so that demands that our family together become survivors. As so we go on surviving.
(Ironically as you are reading this we are probably at the kidney doctors office. Funny two years ago today they didn't catch that he was having a stroke for over 20 hours and now we're back again. I actually find it slightly amusing.)
Kidney failure. The bandage is covering his central line that went directly to his heart. His stroke had probably already started at this point but I can't be sure because I didn't time stamp the picture. I do know they moved us up to the third floor within 12 hours of this picture being taken so I think he was already having the stroke at this point but nobody caught it.
This video is one my mom and sister made for a class they had to take. To be honest I have watched it twice. John came home a year ago and found me sobbing over it. He thought someone had died. The second time was today. It's about 6 minutes long.