Sunday, November 09, 2014

our five year journey with Multiple Sclerosis

dealing with symptoms of multiple sclerosis

i was asked by a beautiful friend of mine who also has MS and is very involved with the MS Society
if i would submit Mike and our family's story for her to share
one focusing on the effect of the disease on our family and how our lives have changed because of it
i was indeed grateful for this opportunity as it gave me time to reflect on these past five years
i cannot believe it has been that long 
and yet it feels so much longer since our lives are completely different

i only had a few paragraphs to share our five plus year experience with the effects of Multiple Sclerosis on my sweet husband
i pray i did it justice

thank you for sharing in our journey

I am honored to share with you a small part of my husband and our family’s journey with Multiple Sclerosis.  The summer of ’09 found my husband Mike in a thriving career with Apple as well as the backyard soccer hero to our three small boys, when our world was turned upside down and inside out.  For three months Mike had not been able to swallow food, losing weight at an alarming rate and suffering tremendous fatigue and weakness, to say nothing of the intense worry we faced.  We had found ourselves on the trail hop from doctor to doctor looking for answers.  When the diagnosis finally came, we were stunned.  I will never forget looking across at each other that night, not knowing what to think but feeling tremendous fear and as if our future plans and expectations of our life together were slipping through our fingers. 

The passing of each year has brought one family adjustment after another, and the onset of unexpected symptoms and the loss of functions for Mike.  We have learned together as a family the effects of the disease.  As fatigue, pain, temperature intolerance increased, and taste, sight, cognition, balance, and mobility decreased, we began experiencing little losses we had not expected... 
no more backyard races with the boys, loss of stamina to prepare meals that brought him delight and stress relief, inability to watch our boys’ sports games due to hot or cold temperatures, no more walking hand in hand on a date, and so many more.  

Blessings have come as well, one in the form of a beautiful baby girl, the child we had found out I was pregnant with the exact day we received Mike’s diagnosis. One night when our little girl was very young, I left her at home with Mike before putting her to bed.  Being beyond exhausted after a long day at work, Mike did not have the strength nor the balance to carry her up our stairs.  With her in his arm he sat on the stairs and tread by tread scooted and crawled his way to the top of the stairs to put her to bed.  My heart broke when I came home, not realizing that such a simple task would be so difficult for him.

Because of his love and sense of duty as a father, husband, and provider, Mike worked for as long as he could.  Leaving his career at Apple at the age of 36 due to his worsening symptoms.  He then worked for three additional companies trying to do what he could to provide for our family.  Mike has a gift of the mind and of words.  He has a thirst for knowledge and had a photographic memory.  He was a linguist, a scriptorian, a passionate researcher, an author, a teacher, and one of the those guys that would win Trivial Pursuit on one turn.  

The most difficult of symptoms, that of drastic cognitive decline, has robbed him of so many of his gifts and pleasures.  This decline has produced emotional scarring due to his inability to provide for our family any longer or function in his roles as a husband and father as he would wish.  He suffers from confusion, memory loss, inability to concentrate or perform simple tasks, as well as absent seizures.  He is home bound while I am now the sole provider for the our family of six.  When he has moments of physical and mental strength he does what he can at home and I have had to learn to let him, despite great sacrifice on his part.  I have learned that although his suffering is audible and quite visible when he does these tasks, I must allow him to do what he can to feel he is still contributing to our family and retaining what independence he has left.

Today our children are strong, having had to learn independence as well as reliance on one another.  They are brave, they are aware, they are compassionate and protective.  God has blessed us greatly.  He makes himself known to us each and every day through the kindness of others who bring my children home from school, come visit Mike on their lunch break, wash our laundry each week, take my son to football practice, and so much more.  

Mike is my champion.  His desire to make me happy, help where he can around the house, and remain loyal to his faith while instructing our children, renews what I knew the day I married this man almost seventeen years ago, how lucky I am to be able to be by his side each and every day.  Sometimes the future is scary, sometimes we wonder how we could possibly adjust to one more thing, but we continue to put in the work and step forward in faith that we can make our life full and joyous no matter what is on the horizon.  

{to read more of our journey with Multiple Sclerosis, click here}


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