Sunday, June 11, 2006

Caregiving: what a long strange trip it's been

     Friday night was a significant landmark in our journey of living with MS. Our daughter graduated from high school.

     16 and a half years ago when Patti’s first major MS exacerbation left her knocked out of the ‘hands on’ side of parenting we discovered a book, “Mainstay: For the Well Spouse of the Chronically Ill” by Maggie Strong. 

    One ‘lesson learned the hard way’ in Strong’s experience as both a parent and a spouse caregiver whose husband had MS was that the immediate needs of the child must be the focus of the family and not the chronic illness. … While that may sound so logical, yet so many times over the years MS has tried and tried again to demand the center of attention, resources, and focus.

     Frankly it has taken much sacrifice on Patti’s part to place being a Mother FIRST, and chronically ill SECOND. With the progression of Patti’s physical and cerebral symptoms and as the spouse caregiver and basically single parent it has been a delicate and often unfair balancing act of time and resources. Megan has certainly faced unusual personal challenges along the way. However, we have stayed the course and tried to keep our family focus on the immediate needs of our daughter.

          … You can’t sit through a graduation ceremony and not drift into memories. I’m obviously showing my age and counter culture streak but even with “Pomp and Circumstances” playing over and over; the Grateful Dead lyric “… lately it occurs to me, what a long strange trip it's been … ” seemed oh so appropriate. <grin>


  1. Congratulations to you all and especially to Miss Megan! Wishing her a fantastic future with college, career and whatever else she aspires to do. I'm sure with two loving parents like you and Patti she is bound to do well :)

    Congratulations also to you, Patrick, and you, Patti, for doing your best to stick with your main focus in raising a child through a chronic debilitating illness. My hats go off to you for your dedication to do so.


  2. Congrats to you, Patti, and Megan on staying such a wonderful family through all this! You definitely have my admiration. Good luck to Megan and enjoy the next journey through college.

  3. Congratulations to your daughter for the high school graduation, and for Patti's and you for making the sacrifices to provide Megan's needs as she grew. You both stayed the course. Megan is certainly a stronger and a more thoughtful person because of the unusual personal challenges she has had to meet along the way. I am always proud of the high school graduates, especially if they are a student I know personally, but I get the real goose bumps when I  think of the emotions the parents are feeling on that day. I remember our son's HS graduation, and it was more emotional than his college graduation. I suppose because that is the first milestone before they actually leave home for independence, even if it is to live in a dorm or share an apartment with college mates. What a great day of celebration! God Bless Megan as she makes her way in the world. Love, Bea

  4. Congratulations to your daughter:) and to you and patti for making (daughter) the focus of your attention:) have a good week


  5. many times did you just hold your head and wonder can this all be many times did Megan think why can't I live in a normal many times did Patti say why me, why us, why now?  And through it all came challenge, courage, and commitment to the important things.  Congratulations on this success as well as all the others that have brought you to this place......and courage to each of you as you face tomorrow which will be filled with many new challenges.  But the most important thing is to savor the moment and hold on to these good times for this is the material of dreams.

  6. How perfectly AWESOME!!!!!!

    Congrats DAD!

  7. I just can't imagine what Megan has been through during her young life.  I send my congrats to her and best wishes for a great future.

    God Bless you Patrick


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