Life has been in overdrive lately. I guess that is how life goes in a family of 8!
There has been some good and some bad in the past couple of weeks. Sometimes I am happy to be so busy because it stops me from obsessing over the things I can’t control. Then I look in the mirror and I see the gray hairs, the bags under my eyes, and the extra weight and I know that being so busy wears on a person. I really hate to slow down sometimes though because then I start to think and worry.
I know I write a lot about Duchenne; but it plays a huge role in my life. What I hate most about it is what it is doing to my boys. But what I hate second most is that it robs me of dreaming about the future. I hate to think about the future because I don’t know what it will look like for the boys. I don’t want to dream about amazing things because I don’t want them to crush me if it can’t come true; but I don’t want to imagine the worst because without hope life could be unbearable.
A little update on what is keeping us busy these days. Our oldest daughter plays on a good high school basketball team and they just finished three weeks of sub-district, district, and state play. They finished third in their class at state. Jason and I made it to every game and took all the kids to the state tournament. Our daughter has 5 younger siblings who adore her and think she hung the moon; although, they would never admit that. It was fun and we are proud of her.
The day after state, our 8 year old had two basketball games and baseball practice and because the weather was so nice we took our daughter out for discus practice at a park where the little ones had fun playing in a large dirt pile. After an ice-cream break, we did some chores, made supper, and went to evening Mass.
Sometimes our family life seems like an oxymoron. We have healthy athletic, sport loving kids that keep us busy with non-stop leagues, tournaments, and practices. We also have children living with a chronic progressive disease that keep us busy with non-stop doctor appointments, specialist visits, runs to the pharmacy, clinical trials, etc. It is like living in two worlds with very little overlap. It can feel like living two lives at once. It is probably while we are tired.
A couple of weeks ago we received news that the clinical trial drug that our three boys are on received a refuse to file letter from the FDA. In summary, it means that the FDA refused to even consider approving the drug for commercial use in the United States. For close to a week we did not know what that meant and were worried that it would mean our boys would have to come off the drug.
At this point, this drug is our best chance at slowing the progress of the disease and changing the outcome for our sons. For now the boys will stay on the drug and the drug company is doing what it can to continue to seek FDA approval. I am taking the boys to Kansas City tomorrow to pick up another 12 week supply of the medicine for the boys and we just hope that it will not be our last supply.
We will get home in the middle of the week. Then leave on Sunday to take the boys to their specialty clinic in Cincinnati, where they will endure three days of procedures, consults, and appointments. They generally have the best attitude during those days. The hardest part is keeping them fed, because we have such a busy schedule it is hard to find time to eat. The other hard part is getting them through blood draws and any IVs.
As long as we make sure they get to eat, they really do a good job and get through the days with smiles and minimal tears. They are usually so tired afterwards that they fall asleep on the drive to the hotel. But after some rest they are absolutely contented to go eat out or swim in the hotel pool.
We are busy and sometimes sad and sometimes stressed. But at the end of everyday I am able to thank God for a long list of things. We have six happy children; they smile every single day. We laugh together every day. I am doing all of this with my best friend, whom I am still in-love with and still makes be feel absolutely adored. We have warm beds, cupboards and a refrigerator full of food, a home full of happy memories. A dog and a cat that add to our funny stories. The list goes on and on. It is all of those things that give us fuel for the busy days.