I've been quiet here because I've been struggling a lot lately and didn't particularly feel like whining in public. Noah is doing well for Noah. While I truly am thankful that he's so stable, I've just been grieving lately. We're between a rock and a hard place in several areas and last week we were asked to make an excruciatingly difficult decision regarding one area of his care. The doctor (who we love and trust) that brought this up did so saying it was a roll of the dice. If we move ahead, we could possibly extend his life and improve his quality of life . . . or NOT. No way to know unless we try, and if we chose wrong, it could be very difficult.
I've been having nightmares that we decided to move ahead and that Noah died, and that people kept shoving the consent paperwork in my face and telling me that I killed him because I signed the consent. It's been rough. My heart has been heavy to say the least.
Jeff and I spoke to the doctor again yesterday, and the decision has been temporarily postponed. It's not an emergency kind of thing, and we all agreed that getting Noah to his birthday happy and healthy (ish) is a top priority. We'll revisit it sometime this fall after his birthday. We are also going to be meeting with our pediatrician and our hospice team. It's important for Jeff and I to discuss this with the people who know Noah best and who see him the most. There are a lot of obstacles in the way of moving ahead with this decision. If we can't find solutions for these challenges, we just can't move forward with this surgery, but we want to give his team a chance to weigh in and possibly brainstorm solutions. I don't know which would be worse - all agreeing that this isn't a feasible possibility (and we no longer have a decision to make, but know that we really tried), or coming up with a possible solution (and knowing the decision rests with us). The doctor yesterday described this as "horrendously complicated" and pointed out that it was entirely possible that the surgery would be a failure and we'd need to do more surgery to undo the first surgery. Like he said last week, it's a roll of the dice . . . triumph or failure with no crystal ball.
At any rate, I've been sad and I've been angry (at the situation, not at any person) and I've felt defeated. I hate mito and I hate that we just make decisions about putting out fires rather than actually making Noah better. All we ever do is try to identify the lesser of the evils when all I ever want is a cure.
It's taken until today for me to remember something very important. We fight so. very. hard. to make sure Noah is defined by the life he lives rather than the disease attacking him. I may be embarrassingly slow on the uptake here, but it hit me today that the enormity of the problem facing us had overshadowed the fact that I'm the mommy of the most amazing little boy. In the middle of the "what if's" I lost sight of what really matters.
It matters that he's doing so very well right now.
It matters that God is in control of this.
It matters that Noah's team is brilliant and loving and godly and they want to help walk us through this.
It matters that Noah is happy and adorable and grateful - the other day he told me he was the luckiest boy in the world because he has a great house and a great bed and a great family and a great church and lots of friends AND a new shark pillow. :-) That pretty much took my breath away.
It matters that I get to be with Noah every day and love on him and teach him and cuddle him and kiss him goodnight . . . and I get to do the same thing with his seven brothers and sisters. (Except some of those rascally teens aren't really snuggly any more.)
It matters that we have today. We have right now. The enemy wants me so worried about the future that I lose what is right in front of me right this minute, but I can't live that way, so I've chosen to reset my attitude and enjoy all we've been blessed with. We still have a decision to make, and my heart is bruised just thinking about it, but when the hurt creeps up on me I need to keep on choosing gratitude and joy whether I actually feel like doing so or not.
Blessings,
Kate
