Thoughts for My Birthday

I turn 38 this week. I know some think that sounds old, more of you probably think it sounds young. I have had enough hard life experiences though to make me feel much older than I am. I sometimes do not believe how much life has been squeezed into only 38 years.

I have often been told I have an old soul. I agree. I love simple things. I love old music and black and white movies. The fast paced world of today does very little for me. I love living in a small town in a rural part of an agricultural state where life moves slower.

I love a house full of Christmas decorations in the winter and a garden full of vegetables in the summer. I want to be surrounded by my dogs and my kids. I look forward to being the Grandma Betty that bakes cookies the grands love and giving them Christmases at grandmas house that give them happy memories to savor long after I’m gone. I love being my husband’s wive. I love to be home.

As year 37 of my life comes to a close it does not do so without painful memories of experiences life brought me in the last 12 months. It was a difficult year to say the least. It took a toll on me. I’ve gained weight. I’ve lost sleep. I’ve cried many tears. I’m tired. I have anxiety attacks.

I have not counted my troubles though, but my blessings instead.

Counting my blessings, finding joy in the journey; that has been the best medicine for my anxiety, the strongest prescription for my broken heart.

I am broken and changed, but I am happy.

Today I am counting 38 blessings; one for each year. This is my gift to me. This is what I count today.

  1. I am married to man that makes it possible for me to say to my daughters, “marry a man that treats you the way your father treats me.”
  2. My children are happy and smile a lot.
  3. I have a village that is 100 percent committed to all the children in it, including mine.
  4. I like to workout and it makes me feel better.
  5. I have a soft bed.
  6. Although there is no cure for Duchenne, my boys live in a time where treatment is available and research is bringing new and better treatments that may change the outcome for my sons.
  7. We have a chairlift that takes my boys up and down the stairs to play PS4 in the game room.
  8. My children are brave.
  9. My children are not shy.
  10. My husband works hard to provide for our family.
  11. My kids love me.
  12. God is good.
  13. When it is cold outside, I sit inside a warm house.
  14. I have cars that start and that are reliable.
  15. I found a chicken dumpling recipe today that made me remember someone very special. I’m making them on my birthday.
  16. Every time I think I need to paint my living room a new color I remember my oldest saying it wouldn’t look like home if I did.
  17. We’ve given our kids a home, not just a house.
  18. We’ve been happily married for 16 years.
  19. We have access to good medical care.
  20. I have dogs.
  21. My cat sleeps curled up next to me.
  22. I have a husband that hates the cat and still lets it sleep curled up next me.
  23. There is always food in our cupboards.
  24. My children wear clean clothes with no holes.
  25. My kids are in a great school system.
  26. There is a new library in my town. I love to go to the library.
  27. We have a favorite place to eat. Macho nachos are our favorite food at our favorite place.
  28. After 18 years of macho nachos at our favorite place, I can now make them nearly as good a home. There are times when you just need nachos.
  29. I have 6 children. I love having a big family.
  30. My youngest child looks just like me.
  31. My oldest child is a good person. It gives me faith we are doing something right and the youngest 5 will be good people too.
  32. I have hope.
  33. My children know and love their cousins. We love our nieces and nephews.
  34. My husband’s side of the family is my side too. They love me and make me happy.
  35. I have sisters. No matter what, I love them and they love me.
  36. St. Cecilia’s Catholic Church
  37. We have a deck that I can thaw out on when the AC makes me too cold.
  38. That God gave me a heart to count my blessings and not my troubles.

May our blessings, mine and yours always outnumber our troubles!

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Birthday Boys

My birthday boys, then and now, will be 7 and 9 this week. I’ve been in the worst mood the last two days. At first, I thought it was the more typical mom feeling of being taken for granted and feeling like the last one anyone in the family considers, me included.

I was wrong. It hit me this morning. It’s the fact that my babies are another year older. I’ve not typically struggled with birthdays and holidays with my boys. The celebrations of them being here with me has been such a fun and bright part of the birthday that I didn’t think a lot about the fact that I don’t know how many they will have, or the changes that have occurred in the last 12 months or what they will lose in the next 12 months.

There is no handbook on how to raise a child with a terminal illness, more specifically Duchenne, more specifically three very different boys with Duchenne. I question if I’ve made the right decisions for them. I wonder what the next hard decision will be. I have to accept that I have to trust that I made the right decision with the information I had at the time. And trust that I will make another best decision if that information changes.

This was a hard year full of battles and changes. We are still waiting and fighting for FDA approval of Ataluren, the insurance battle for coverage of another important medicine is still ongoing. At home we installed a chair lift and built a ramp.

We know that soon we need a new vehicle because although I am strong and work hard in the weight room to be able to lift the boys and their scooters into the van, doing so long term is not practical.

When we were first diagnosed we were told the boys would be confined to a wheelchair by the time they turned 9. We found a better doctor and we know because Max that 9 is not the average anymore and that it is 12, 13, 14 and older now before boys stop walking completely.

But, Rowen is going to be 9. There are things that are becoming increasing more hard for my son and he needs growing amounts of help. Bathroom modification is necessary sooner than later. If we are forced to stop using Ataluren in the next year if it doesn’t gain FDA approval, it could be 9 for Rowen.

Last Saturday we couldn’t get a handicapp parking spot and because of snow and frigid temperatures I asked the boys to walk further than usual so I would not have to unload the scooters…there was a door close to us that we could enter and then just walk the hallway to get to the gym on the other end of the school. It was really really hard for him. I’m actually crying now because I felt so bad for not taking his scooter. Seriously, his muscles don’t work like mine and everything is hard for him, but I decided it was too cold to help him by getting his scooter. I feel like scum.

And yeah, I’ve been so damn mad at my husband for leaving me to travel alone with the boys. And I hate that, because they are my children. I hate that sometimes traveling alone overwhelms me. I hate that I’m mad at my husband, he is my partner in all this and really we can’t afford to me mad at each other.

Then last week at church, it was just me and Rowen. He wanted to lift his legs up into the pew. He could not. He had to grab the material of his pants and pull up to get his legs up. It’s those little things I notice that eat at me.

This post really has no lesson to be learned. It is just this. Duchenne is hard. These birthdays are hard for me this year. I do know though, that it would not hurt like this if I didn’t love them so much. To have this love for them, to have them, to be able to celebrate them though….I would take the hurt and stress a million times over…my children are my everything and we will celebrate them this week and always.