A Huge Hurting Heart

The MTM-CNM Community is one where it often feels as if we are of one heart...when there is joy, we all celebrate together and yet when there is sorrow, we all grieve. This has been a rough Spring...Javad had his "episode" (as we lovingly call it) and now more of our friends are having a rough time. Little Grayson recently received a trach and is struggling with pain management and how to deal with this new thing in his life, Mitchell was struck by a taxi on his college campus and broke both femurs as well as a variety of other issues. We are lucky that he survived. Finally, sweet Allie had been feeling under the weather and got to celebrate her 10th birthday with friends. Sadly, she began feeling worse so her mom, Jenna. took her to the doctor and she was admitted. She is one of the sweetest girls you will ever  have the opportunity to meet. Today Allie's heart stopped and she is on life support. As a mother who recently went through this exact thing...it is a struggle watching your child struggle. This is where our heart finds the challenge. On one hand, we draw together for support and caring find the commonalities and on the other, when someone is hurting, we all hurt as a giant hurting heart.

As a parent of a medically fragile child, I often struggle with the idea of fairness. I know that I have addressed this in the past, but it continues to be an area where I have internal strife. Overall, I feel like I approach my life with optimism...I try not to focus on the negative, although even at the best of times, I may feel like climbing to the mountain top and screaming. This is one of those times. As I watch Javad struggle each day, making improvements so small that they are almost not perceptible, I wonder where the fairness in life is. Why is it that others don't have these same challenges, why is it that my sweet boy keeps getting struck down, who said that you will only get what you can handle? Sometimes we feel like we are going to break!

Sweet Allie is on my mind...her sweet smile and sweet spirit shining through. Her mother, one of the most amazing young women that I have ever met, is one who deserves the entire package...a life where love abounds. Pictures of their family make me smile...children gathered, love gushing from the seams. Joy screaming from the page. Allie's sweet heart stopped and now she is in critical condition...our community weeps and cries...this is not fair. My wish for Allie is that she will get a new heart...one that is strong, one that pumps strongly so that she may never feel weak again...not in the same way.

Grayson, such a sweet boy, has recently gotten his trach. It can be a rough transition for some, this life breathing tube. For my sweet boy it was instrumental in his growth and health. For years I was unsure how I felt, but now am on the front line of the club that educates about trachs. I think about sweet Grayson and and send him wishes for a pain free and stress free transition. It can be scary and frustrating for all involved at first... <3

Mitchell, one of the most incredible young men I have ever known, has been to each MTM-CNM Family Conference, bringing his sense of humor and pride to the event. He is a shining example of what an amazing family and strong parents can bring. Mitchell is in college and showing us how living with this disease can be done. In one moment, Mitchell's life, and many of ours as well, was changed. Crossing the street in his wheelchair he was struck by a taxi and now recovers in the ICU. He is on the ventilator and will take time to get strong again. In times like this, I struggle to find the meaning...why becomes the question where there is no answer.

Many families in our community have to cross the path where fair and unfair meet. Having this diagnosis is already a frustration, at times, dealing with issues that, as a parent, make you feel powerless. Fighting against insurance, medical professionals, supply companies and so on. A job on top of the job of managing every day "regular life." We are lucky, in many ways, with a community of cheerleaders supporting us in so many ways. These are people that I have relied on for guidance along my path. Each of us walking together, supporting one another in good times and bad...one massive heart beat aligned together. When times are rough, as they are for some though, it feels one a huge hurting heart.
























































































































































































































































































































































































































































































































































































































 on the other

Comments

Post a Comment

Send me some love...

Popular posts from this blog

Where everyone knows your name...

Image
Yesterday my sweet giraffe boy was released from the hospital. He was admitted a week ago Friday with pneumonia in both lungs. It had already been a rough week. He had been wracked with fever and overwhelming amount of secretions. I won't go into the finer details, but let's just say that there was snot coming from every orifice of his cute face. This was our first hospitalization in about a year. It was both strange and comforting to be there, walking familiar halls that I have walked so many times before.

I have always said, "If you're at the hospital, you don't want them to know your name, but when you have a medically fragile child, you want to go to a hospital where they know their name." That is Randall Children's Hospital. Javad is well known here to both nurses and doctors alike. They marvel at how big he is (almost 16) and how well he is doing. Some were honest, this time, that they never thought he would make it to 16. It's both refreshing a…
Read more

Grabbing teardrops from the sky

Image
Being the parent of a medically fragile child can be like riding a roller coaster with a blindfold on. As you are riding along, the breeze flowing through your hair, all of the sudden you are rocketing downward, screaming, body flying and being jostled from side to side, then a sudden stop where your stomach feels like it's coming into your throat. Then other times, the ride is going along smoothly, rolling hills, laughter and joy. It feels blissful and warm, peaceful almost.

You never know what to expect. In some ways, parenting a medically fragile child is similar to parenting any child. In some ways it is quite simple, you get accustomed to the medical part, you become a professional of sorts, while balancing the constant surprises.

In my small MTM-CNM community, there is a sense of interconnectedness. I don't want it to seem that everyone gets along swimmingly. It's a group of families brought together by children who have the same disease. There are many personalities…
Read more

An Unexpected Birthday

Image
My sweet giraffe boy just celebrated his 16th birthday. Although Javad shook his head "no" every time I asked if it was his birthday, I assured him that it was indeed his day since I had been present sixteen years earlier for that ever so epic day. When I think back to that day now, I realize what a fog it is...blurred images like a watercolor painting in the rain. The joy of entering the hospital, welcoming a new member of the family, to the chaos and wondering of the next steps. I remember laying in the operating room, waiting for the scheduled C-section, hearing the doctor pronounce that "It's a boy," then nothing. No sound coming from my sweet boy's lungs, silence except the doctors talking. My questions were answered in vague ways before they injected me with Morphine and I went off to slumber land for the next hours.

While I was sleeping, much discussion was happening, looking at his lungs, putting him under an oxygen tent. The hospital where he was b…
Read more