Sometimes I feel prepared but really I am not

Last week was emotionally exhausting. It started off with virtual advocacy with over 400 people in DC on zoom calls. 2 other families, Patrick and I met with Senator Cassidy and Rep Scalise’s office. To say the least, it was empowering to tell our story and ask for help to find a cure for Wyatt and other boys with duchenne. It wasn’t the same as going to Washington DC like last year but it was still amazing for so many people to be able to have our voice heard even though it was virtual. I pray that all of the meetings made an impression and will put our tax dollars to something that we need.

After our last meeting, Patrick and I started on our to-do list that we have been putting off because sometimes that is easier than facing the reality. We have been trying to update our will for years and have finally started the process. Years ago when we wrote the initial one I was pregnant with Wynston. It’s hard to face the reality of death and with having a child with a disability it creates even more hurdles. You see Wyatt can only have a certain amount of money in his name in order to qualify for help from the state and federal government when he becomes 18 so a special needs trust needs to be established and planned for ahead of time, God forbid we are not ready. We also knew that we needed to have a safety net in place if anything would happen to Patrick and I; we need someone to take care of Wyatt for the long haul not just as a minor. It’s so hard to think of the finality of life and what will happen when I am not here. When we wrote the initial will we felt like we were preparing ourselves for the future but now it’s even harder to do because so much progression has taken place. It’s hard to think of anyone else taking care of your children and even harder when they are so complex and have so many needs. So Ptarick and I did what we needed to do and got that pretty much finalized side by side.

And then the biggest hurdle of the exhausting day. As I said in a previous post we need to purchase an electric wheelchair for Wyatt. After lots of research and talking to other DMD families we decided to get an EZ Lite electric chair. It will be good for around the house, school, neighborhood and traveling. We picked out all the extras and determined the best one for him and when we hit submit order I broke down into tears. I know I should not be so upsetting because it will give him even more freedom to get around and I know I should be thankful he is still walking but God that was a hard pill to swallow. I am truly grateful that he is doing great and I think about how prepared I thought I was for all of these changes but last week showed me that you can prepare and prepare but you are never truly ready. Patrick hugged me and we cried together because change is hard even when you think you are ready to hit submit. It took me a few days, tears and glasses of wine to feel better today and write this blog.

If that wasn’t enough for 1 week a friend of ours who we met almost 6 years ago died unexpectedly. He was around Patrick and my age and he has 2 children Wyatt and Wynston’s age. It was totally heartbreaking and I still can’t stop thinking about his family. His son was in the same trial Wyatt was in where another participant died. We talked often during the trial and were there to help one another when the adverse events started. The DMD community is very close especially when sad or scary things happen especially in trials and times like this. So that morning when Wynston saw me crying he asked me what was wrong and I told him. He said, “oh mom! Now that poor mom is going to have to take care of the duchenne boy by herself.” It is definitely one of those things that we prepare for like writing our will but it is hard to imagine life without Patrick and how the boys and I would get through that unimaginable heartbreak. Later when I was taking Wyatt to his doctor’s appointment I cried again because of a song that came on. I told him what happened and then apologized for crying. He said, “mom you don’t have to be sorry. It’s ok to be sad, your friend died, you can cry.” I love these boys so much and I love their support. I pray for the Diemler family and hope that they will find their way through this tragedy.

It takes time to heal the wounds of not being truly prepared. I am so grateful for my friends and family who are there when I need a shoulder to cry on, need someone to just watch Dateline with me so I don’t have to think about the reality of life, and those who are there to have a laugh or a glass of wine with. I am ready to take this week on and prepare myself for Wyatt’s trial appointment on Friday and for when his wheelchair arrives. I just know with all of my support crew I will be ok and as ready as I can be.