Dog Crap Kind of Day

It’s been a day. After reflecting on my yesterday, I should have seen it coming.

I cleaned bathrooms yesterday. I hate cleaning bathrooms. But I cleaned them. I even painted the basement bathroom before cleaning it. I literally scrubbed them both so hard that my arms and shoulders were sore this morning.

Later in the evening I sat down to read with one of the kids and our little dog jumped up with us. I started to pet her until I realized she was covered in her own crap. If not her own crap, then the crap of her dog brother. I had to give her a bath in my clean bathtub and then clean it again. That is 3 bathtubs in one day; my least favorite chore ever.

I woke up this morning to a press release that informed us that the FDA had denied approval of Ataluren again. There is still a path forward and boys will still get medicine. All good news. Except after months and months of the process, after waiting for months for the answer…that is what I wanted, an answer!

Now we will wait, I can talk to the drug company or other parents, but it still means we wait longer for an answer. What if the answer is no again? What do I do for my boys at this point? Wait!? It is not what I was expecting despite having an understanding that it could happen. I can’t process it today. It worked out because today was not done with me yet.

Max has been home for 2 days now and today it was confirmed that he has Influenza B. Yuck. He’s going to miss school and play practice. 3 of his 5 siblings are starting Tamiflu with him. I’m washing bedding and have cloroxed the entire house and have the diffuser going.

I have a headache and can’t decide if I’m getting sick, tired, stressed, sore or all of the above. I also forgot to eat lunch until 3:45. Food helps.

Mister Charlie asked me if he was going to die when he was 13 as we pulled into the drive way after school.

(( This is the silence in my heart for the few moments before getting out of the van, walking around to his side and giving him a big hug ))

It hurts as bad as you imagine it does if you are fortunate to have never been asked such a question. I know other Duchenne parents read this blog so I know that some of you know the feeling too.

Another first grader told him that. I want to be mad at that kid, but he’s a first grader and probably overheard something he didn’t understand. I’m really not mad.

It didn’t happen today, but today is when Charlie asked me if it was true.

We had a good talk. I told him we are doing things that have never been done (no thanks to the FDA) and we are changing the outcome. I told him that no one knows how old they will be when they die and neither do we.

Rowen ended it with, “We are Duchenne history makers!” I’m glad he felt like a warrior about it because I mostly felt like a pile of mush about it. Not a conversation you can prepare for.

I’ll have to see about going in and talking with his friends again. Still stings.

So now, I put a hold on all homework doings. We are watching Teen Titans, eating yogurt (Charlie in his underwear) and putting off the real world for an hour. Except me, I am processing or trying to as I write this…it’s the only way I know how to process a day such as this.

There were good things today, I’m sure. I paid preschool tuition on time. It’s the only bill I am responsible to pay and this is quite possibly the first time I’ve paid it on time all school year. So there’s that.

I may not clean the bathrooms again for awhile.

Max’s Blessings

I met Max at school yesterday at 11:05 so that I could carry him downstairs to the lunch room. It’s the same most days.

Yesterday, as he was on my back he rested his head on my shoulder and told me Wonder was out on DVD. He wanted to see it.

He told me that Mr. A (the teacher of the class just before lunch) gave a speech on being Kind. His teacher told them that somebody might be having the worst day and you can either make it worse for the person or you could make it better. Even a smile can make someone’s day better.

At that point he was almost whispering and he said, “it reminds me of me.”

We were to the bottom of the stairs and I lowered him to the ground. Lots of days be hugs me and I go upstairs to wait for him.

Yesterday there was no hug and he walked off down the corridor with one arm outstretched running his hand along the wall and holding his lunch in the other.

He was deep in thought.

Less than 2 hours later a text from his study hall teacher dinged on my phone. He was telling her he was very tired. She thought he looked a little sad too.

I had a hunch I knew what was going on. It was the melancholy deep thought he was in when I left him at lunch.

He came home. He was sad. I could sense tears just under the surface. He told me his legs hurt when he walked. He looked exhausted.

At home he surfed through the pay per view channels and found the movie Wonder. We ordered it and watch it together. At the end of the movie his eyes were welling with tears.

I sat next to him. I told him he could tell me anything.

The tears started and he told me to go away.

I was fighting back tears. I needed to make sure he was ok. So I asked him to tell me if the tears were because he was hurting because kids are mean or if they were because he felt blessed to have so much kindness in his own life.

He said the tears were because he was so blessed.

He is so blessed. He is 12. He has a rare disease that is slowly robbing him of his independence. He is the smallest kid in his class and is the only one in the building that uses a motorized scooter to help him around. He needs help on the stairs and in and out of the van. He needs help with almost everything.

With all of that in mind, yesterday when his teacher talked about kindness, he saw his blessings.

His friends are kind. His teachers are kind. He told me he never feels like people stare at him unless we are out of town and have all 3 boys on scooters.

He was overcome by his blessings. He felt so much emotion that it exhausted him.

We both cried. He were so full of gratitude for our blessings that our eyes were leaking. Kindness is a beautiful thing. Everyone deserves kindness. I’m thankful that Max is embraced with kindness.

Shrapnel, Memories, Love, Joy & Walls

I want to write about shrapnel. Shrapnel. The word I’ve decided to use when a little piece of something from the past lodges itself into the present unexpectedly.

There is also my first memory and its reality or lack there of. It’s very vivid and has been my whole life. I think I remember it through interpretation. My childhood mind trying to make sense of something outside the understanding of a child. Instead of a memory, it seems more like a story told from a child’s point of view. As an adult I see through the childhood interpretation, but without someone to tell me what really happened, it’s reality is a question.

All of these blogs will someday be pieced together to form the book I know I have to write and this earliest memory is giving that book a shape, a beginning. I’m excited and scared to write it.

I need to write about love. The amazing love I found through this blog. For the longest time, and I’ve shared it previously, I felt unworthy of love (shrapnel). I am loved though.

I realize my true struggle was always loving myself. My defense mechanism for the majority of my life was to be harder on myself, to hate myself more than the way I perceived others felt about me. That way when someone in my childhood didn’t show up or failed me or hurt me in some way, it would never hurt as bad as what I already believed about myself.

Writing it all out, my journey with joy, the loss of my sister…it all suddenly became so clear. I am the one that needs to love me and needs to be kind to me.

I read a passage today in a book about joy.

“There is a wall in my heart that I know was erected as a protection from being hurt. But I am ready to let it come down so that my heart can heal.”

This is the perfect description of where you find me today.

A big part of finding myself ready to let it come down is faith, my family, my husband, motherhood you, your gifts, the little notes, the kind words. They made me realize that if a person that barely knows me can think of me and see good, then it is time that I do so as well.

I gave an interview today. It was an interview on parenting children with exceptionalities. It was a more difficult interview than I imagined. There was conversation about what I hope for my children’s future. I cried. It is hard for me to think of the future because when I do my deepest fear of my children not part of it is there, in my future. It forces me to think about the uncertainties. I don’t like it, it hurts.At the end of the interview though, I was able to say to myself that I am doing a good job as a mom. I’m not perfect, I still beat myself up sometimes (shrapnel), but I think I’m doing a good job. I think I am not a perfect mom, but I think I take good care of my children.I might as well have moved a mountain. Love is changing me. The wall is coming down.