One Breath, One Step, One Moment, One day at a Time.

Have you ever reached the point where you begin to wonder if you stood in the middle of a crowded room and screamed would anyone hear or really see you? I asked my friend, Erika, this very question last week and I am still wondering the answer. We are all caught up in our own problems do we really see and hear each other anymore? I mean really.

Today is my day of standing in the middle of that room. I am screaming on the inside. I want to scream on the outside, but I am afraid I would never stop screaming and crying. As many of you know, we always have a lot going on. My husband and I are nurses, we both work full-time, have three beautiful children,2 of which have significant special needs, and we decided to both go back to school to obtain our MSN in Nursing and Healthcare administration. Sometimes I think we are idiots. This is our everyday life. And then…….

Jayetta recently was able to see a new neurologist and geneticist. They sat with us and discussed Jaye’s lab results and her MRI from March which showed disease progression through her brainstem and increased demyelination in her spine. They still don’t know what it is, it doesn’t have a name, it has never been seen in another human being, it has only been seen in rats and it is always fatal. When we ask about time, we hear we don’t know. I hate this answer. It makes me want to scream, cry, and pull my hair out.

We hit this point where she appeared to not be progressing as fast. We discussed this with the neurologist. He wants us to see another genetics specialist (this will be our third) for another opinion and potentially more testing. I had to ask, what will this do? Will it make a difference for her or change her outcome. He said, “Most likely not, but maybe he can give you more of an understanding and how much more time she has, it may also help someone else’s child in the future”. My heart and soul shattered completely and I do not think it will be whole again.

This past 2 weeks has been a challenge, Jaye got a virus (not COVID) from our sitter. It has really knocked her on her butt. It has made her progressively worse. to the point that as of Friday, she shakes uncontrollably to the point she cannot hold anything… Not a cup, spoon, her lion, absolutely nothing. She wants to play outside and do things she has been doing but she is so much weaker that it is so hard for her. Today she would not eat breakfast because she could not pick up a tiny piece of muffin and put in her mouth. At lunch she would only eat if I cut up a cheese burger in to small tiny pieces and fed her small bites, less than dime size piece at a time.

The other thing that has changed rapidly is her vision. Yesterday she couldn’t see anything except shadows. She was sitting next to me on the grass and said where is Noah. Noah was sitting on the other side of me quietly dismantling my flower we were supposed to be planting. Dom looked at me puzzled and I mouthed, “She can’t see today.” When you look at her eyes, they are not focusing on anything, they go in different directions and have this glassy disoriented look to them. , I carried her from spot to spot with me and we talked while I planted flowers.

Yesterday and today, Dom and I looked at each other with tears in our eyes. We both know time is getting shorter and we don’t know how many good days we have left. We are trying to put on a brave face as interact with the world. If you ask us, we will most likely tell you we are fine or act like we are fine……..everything is fine. “It’s ok. We are ok. She is doing good”. When in all honesty, we are both people standing in the room screaming and crying on the inside.

I have heard so many things like…. It will get easier; God doesn’t give you anything you can’t handle; We are all dying some of us just sooner than others; You are such a good mom and have given her a good life; She is blessed to have you…….. the list is so long. I understand when people say this they mean well and they are really just trying to comfort me or let me know they care, but honestly please don’t say this to someone who is watching their child die one cruel breath at a time. It would be so much easier to say, I am sorry. I really don’t know what to say, but I am here to listen if you need to talk or someone to sit with you. Maybe just hug that person.

I have been told many times that I am strong and they are not sure how I do this. My answer is always the same. I am not strong. I pray, I cry, I am angry, I am sad, I am exhausted, but I love my children so much. They are my miracle. They made my saved me, not the other way around. I count each day we are all together a blessing. Life is hard, tragic, and messy, but is is also beautiful, touching and has many blessings.

I know this was a long post. I am not even sure I will post it as it is so personal. My mask is lowered for you to see inside to some of my true feelings, leaving me vulnerable and scared of what people will think but then another side of me is telling me to post it because it is cathartic and it might help someone else realize they are not alone. No matter which way I go with this please keep us in your thoughts and prayers as we move forward one breath, one step, one moment, one day at a time.