It Could Be So Much Worse

Today a facebook friend posted a link to “Mitchell’s Journey“.  This is a page about a boy, Mitchell, that had Duchene Muscular Dystrophy and his family’s journey.  Duchene Muscular Dystrophy is a catastrophic muscle wasting disease which results in progressive muscle deterioration and is fatal by late teens/early twenties.

This morning Mitchell passed away with his family by his side.

Picture of Will’s fingers with the blisters.

Picture of Will’s fingers with the blisters.

Back last April my oldest son, Will, woke up and his knuckles, elbows and knees were swollen and had almost what looked like blisters/warts.  It was horrible – one day he was fine and the next day he was swollen in all his joints with blisters.  I took him to the doctor  and the doctor was concerned because the blister/whelps were on his joints. She reassured us they were not warts because of the look, swelling and clusters of the places. She is not a doctor that ever has a look of absolute concern but she had that look when speaking with me. She requested blood work be drawn. Long story short she referred him to a pediatric rheumatoid arthritis doctor at Vanderbilt Children’s Hospital.  When we met the doctor at Vandy she was leaning towards Juvenile Dermatomyositis. Which is an autoimmune inflammatory muscle disorder and vasculopathy that affects children.  It is a painful disease.  We had to take him back and forth to Vandy for about 3 months – having blood drawn… they would check his enzyme levels.  If any of the enzyme levels came back questionable – we had to go back again.  He constantly ran fever in the 99’s for 3 months.  The swelling/blisters had gone away around a month of the initial “outbreak”.  Finally – his enzymes came back fine and his fever went away.  So, needless to say they ruled out Juvenile Dermatomyositis and chalked it up to being some sort of virus.  You talk about an emotional roller-coaster…

Where I am going with this story is – I went through every scenario possible of “what if’s”… the treatments for that disease were so harsh for a child and yes, there was the possibility of death.   I imagined my little boy going through the pain of the disease… I kept telling myself “if this is what he has YOU have to be strong for him.”   I prayed every sleepless night that my child didn’t have to go through this horrible disease… I prayed… I prayed and I prayed.   When we received the news that it was not Juvenile Dermatomyositis – I was overjoyed and almost beside myself.

When I read about the struggles of families losing their children to horrible diseases or accidents… I, in a sense, am thankful for what struggles my family has.  They are big struggles to us – but they could be so much worse.   We are lucky that we have two beautiful, healthy children.  We are lucky that we do not have to watch our child suffer with a painful disease… we are lucky that we do not have to bury our child due to that painful disease… we are lucky.    This doesn’t mean we do not struggle every day with the hurdles of autism and it doesn’t mean it doesn’t hurt us to see him struggle with trying to get out his emotions or explain to us how he is feeling… but it could be so much worse.  I am thankful…

The video below is one of Mitchell’s Journey… it speaks wonders not only for him but for everyone that has struggles in their lives…

Mitchell’s Journey – Thank You from Christopher M. Jones on Vimeo.

I will share with you the note that Mitchell’s father wrote regarding the death of his son… what a strong family… they were so lucky to have Mitchell and Mitchell was so very lucky to have the parents he had.  God Bless Them and Be With Them.

 

Dear Family, Friends and Loving Supporters,

At approximately 1:30 AM (Saturday, March 2nd) our sweet Mitchell passed away.

In the hours leading up to his passing we gathered around him as a family, spoke with him, told him how much we loved him, kissed him, cuddled and loved this young man with all that we had. We were grateful that he was able to squeeze our hands to acknowledge he was hearing us. We will miss our baby so very much. Mitchell, while weak in body was giant in spirit.

Last week Mitchell told me that his favorite day is Friday saying it “felt special” because we usually dedicated that evening to family. So in honor of our boy we had our weekly Friday night “den party” but this time in his room. We all spoke softly as we watched a movie and enjoyed each other’s company. Mitchell was fading throughout the night, but he kept giving us hand squeeze signals that he was with us and we are sure he loved having us all spend time with him.

Just as I had drifted off to sleep at around 1:00AM I had an impression that I should formally tuck him in (something he asks me to do every night). I got up from the floor, pulled his blanket over his chest, kissed his forehead and whispered into his ear, “Mitchie, this is Dad. I am tucking you in, just as you like it. Remember what we talked about … don’t be afraid, everything is okay. I love you, son. So very much.” With that, I kissed him on the forehead a few more times, pressed my face against his and squeezed his hand. With that, Mitchell passed away in less than an hour. I was so grateful to hear that impression and that I acted on it. I would hope that he heard my voice and recognized he had one last tuck and cuddle with his daddy and that it brought him peace and assurance.

Natalie spent the entire evening cradling and caressing her son and assuring him that he was okay and that he was safe in her arms. She never left his side. Natalie has been a valiant and loving mother to her son. I took this photo of Natalie and Mitch last night just before midnight. She loved him with all that she had and served him even more.

In the coming days, weeks and months we will be sharing some events along Mitchell’s Journey that have strengthened our faith in God, widened our view of suffering, tender experiences with Mitch, things we learned from Mitchell and some of the remarkable things we learned about you, Mitchell’s Journey followers.

We want to thank all of you who reached out to our boy to offer love and support. Your packages and letters of encouragement made him feel special. Your notes on this Facebook page were read to him daily and it made him feel that he wasn’t alone. From the bottom of our hearts we thank you.

Our hearts are heavy with sorrow, but filled with gratitude and peace. Mitchell’s Journey is not over: it has only just begun … in this life and the life after.

 

Below is mailing and paypal donation information if you would like to make donations to “Mitchell’s Journey”…

MAILING ADDRESS:
Mitchell’s Journey
5526 West 13400 South #102
Herriman, UT 84096

DONATION ACCOUNT
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=M93R6MNRF4EY6

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