We all want to see our children’s dreams come true and one of Noah’s life-long dreams has been to ride a bike. He has bravely faced the loss of many dreams as his mitochondrial disease has taken away his ability to walk and his ability to eat. If everyone who reads this post will share on FB and Tweet, blog and send emails to friends and family, he could win an adaptive bike. It only takes a moment, but hurry, nominations end at 11:59am EST TODAY (Tuesday 3/25)! https://www.friendshipcircle.org/bikes/2014/03/noah-5/
PRAYING FOR NOAH
A note from Kate, Noah’s mom:
YES. Noah is very sick in general and is struggling more than usual right now. He apparently has a viral illness and he has a great deal of yeast growing out in his urine. One or both of these is making him struggle more than usual. These struggles include increasingly delayed clotting times and increased pain and fatigue. This could sound scary (and by all means it could become scary and very serious), but he’s doing really well for Noah in spite of it all.
Yes, he’s “that sick.” He’s a fragile little boy who needs an exceptional amount of medical intervention just to stay alive. He’s acutely ill right now with the yeast and the virus and a central line that looks awful despite our prayers and bleeding from his tubes and lines. We aren’t taking any of that lightly. He’s being treated with appropriate meds and his labs are being watched. We have nurses in our homes 8 hours a day helping us keep a very, very close eye on how he’s doing. We’ve had the pediatrician out to our house once last week and had phone conversations as well. He’ll get acutely sick again and again, and won’t ever be healthy in between these acute times. He has been terrifyingly sick many times and probably will be again.
All of this is true, but it is only part of the truth.
In the last several days, while acutely sick, Noah has:
~Taken multiple “walks” (in his power chair) around the neighborhood
~ Gotten down on the floor to play
~Had a fantastic physical therapy session
~Used his walker to get to the family room multiple times – he is doing SO well with his walker and regularly moves from room to room using it. He used to have to sit after every couple of steps but can get from his bed to the family room in one go. He’s not a great walker and will always need his power chair to really get around at all or to leave the house, but he’s proven that he has the stamina and the physical ability to ride this particular adaptive bike.
~Worked on his schoolwork
~Had a blast doing St. Patrick’s Day activities
~Had friends over to play
~Gone to the theater to see Mr. Peabody and Sherman
~Gone to Starbucks to sit with me for a “juicebox date”
~Gone to the Dollar Tree to pick out a toy (he picked a pirate dress-up set)
~Gotten his hair cut.
I’m sure I’m forgetting something good, but those are the first things that came to mind. If it’s hard to wrap your mind around this, I truly understand. It can be hard to wrap our minds around it too. Typical life experiences teach us all that we should fit into boxes – we are sick or we are well, and our lives look very different based on the box in which we find ourselves. Sick children with unstable labs and I.V. pumps and infections belong in hospitals while healthy children are the ones who do the things I listed above.
Jeff and I and Noah’s medical team have worked extremely hard to reject those stereotypes when it comes to Noah. We will not recklessly expose him to harm but neither will we define him by his medical status. We allow and encourage Noah to live as normally as possible, and we let him guide many of the decisions that we make – if he feels good enough to have a date with Mommy or play outside, we let him do so no matter what his labs are telling us with very few exceptions. We encourage him to exceed expectations and to accomplish things that are hard or that we’ve been told aren’t possible. If that weren’t true, he wouldn’t be doing some walking right now!!
The decision to enter the bike contest was given a great deal of consideration. If Noah’s physical therapist did not believe with all of her heart that Noah could ride this bike and would derive enormous benefit from doing so, we wouldn’t have entered. His IV pumps are not gravity dependent and have quick-release clamps making it very easy to move them to an IV pole affixed to the bike or even put in a bike basket.
If he were so sickly that he wouldn’t ever feel well enough to ride the bike, we wouldn’t have entered.
If he didn’t have the passionate desire to ride a bike, we wouldn’t have entered.
It is true that he could at any time become very gravely ill and no longer be able to ride the bike, but it’s equally true that he could derive many, many hours of joy from riding it. This is true for all of the contestants as none of us know the future. Yes, he is in hospice but only because we are in a “continuum of care” state – children in hospice in SC can receive life-saving and life-extending treatment while in hospice and it’s not unusual for a child to be in hospice for years. If something happened so that Noah could never ride the bike again, we would of course arrange for the bike to be donated.
Now, having said all that, it’s highly unlikely that Noah could win this contest. He’s in third place and more than 14,000 votes behind. He could win by random drawing but the odds are slim. We want to continue to try our hardest for the remaining hours of the contest. While we believe with all of our hearts that Noah is as worthy as any other contestant and would enjoy this bike as much as any other contestant, we also recognize that the Lord is sovereign and knows who really needs to win. I wish every child could win and can only be happy for those who will ultimately receive bikes!!
Once again, the link is https://www.friendshipcircle.org/bikes/2014/03/noah-5/ . If every single person who reads this post will share on FB and Tweet blog and send emails to friends and family, he could possibly win. It only takes a moment to do any of those. The contest rules say nominations end at 11:59 on Wednesday, but there is a ticker on the site indicating that they end at 11:59 TOMORROW. I’ve emailed to ask for clarification, but it’s safest to assume we’ve only got hours to pull this off. Please consider taking a few minutes to quickly share, tweet, blog, and email.