I looked down at the stairs leading to the Target Field baseball diamond. Sensing the leather front row seats calling to my son Josiah.
We watched momentarily as people climbed the stairs. Certainly getting
him down there would not require to much effort but the return trip up
would demand more muscle strength. Force I was not sure I might be
capable of. With out hesitation my Josiah was on his way down the steps
on the back of a family friend. Its a gift to have family and close
friends who instinctively know when to jump in and help without being
asked.

At a recent physical for my sons, I had asked their doctor half
lightheartedly if perhaps I could be prescribed steroids. Smiling, I
waited for a response. Our eyes engaged briefly in silence, he finally
chuckled telling me it might change my feminine petite features some.
At a point in my life now where lifting my sons was becoming a real
hardship I felt myself feeling desperate. My son Cody out weighed me by
five pounds, each day I felt more strain lifting him. I was willing to
bargain, barter, to trade in my thin figure for any amount of muscle
that might allow me to continue to maneuver and meet my sons needs with
out needing assistance every time we went somewhere. If I could only
have some extra muscle strength, just to have the ability to transfer
Cody from one place to the next without the fear of dropping him or
falling myself. I was not given steroids but I was encouraged to keep
up my hope. I am not exactly sure what hope and the ability to lift my
son have in common if anything. Hope I knew I did have, it was muscle
Duchenne was taking from my sons and requiring me to gain.


Today though it felt good to not view the stairs as a threat. I was
happy to see Josiah be apart of the crowd. I was pleased he was able to
have the opportunity to experience something that was important to him.
He did not have to sit on the side and watch other children go where he
was not able. It felt good to not have my own limits affect my son.

Even though lifting Josiah for me was not so much of a struggle right now,
new challenges were beginning to face us each day. As much as I fought
as a single parent I knew our time was coming when we would rely and
need outside help more. Sitting next to Josiah I looked out at the
people around us, watching other children move freely about. There at
my side was my beautiful son, content with having the opportunity to be
in that stadium seat, not asking for anything more. We enjoyed the
afternoon with my niece and her friend. Touring all that Target Field
offered Josiah had no limits to where he could go and what he could
see. We confronted obstacles and accepted help with out feeling like a
burden. I am blessed, I have family willing to take whatever extra step
needed to be there for me and my sons. Always knowing exactly when to
be the extra muscle and allowing me and my sons to keep some pride and
dignity.
















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Comment by Cheri Gunvalson on March 28, 2010 at 11:38am
Rita,
I so appreciate your posts. I don't know how you do it. I out weigh Jacob and cannot lift him. The best I can do is slide him from his bed to his power chair. I did get a beasy board that is a transfer board with a disc that slides. That said I am Jacob last choice to transfer him he much prefers his dad, brother or sister.

Your posts are so good for those of us with older boys especially those who have help to appreciate it better and for those with younger boys to prepare for the future even though it is very hard to think about.


I find it so much harder to share/write about these difficult issues the older Jacob gets and the more dependant he is on us at a time when his peers are graduating and leaving home. Like you we also have an older son who doesn't have DMD in college and it is so hard for the younger brother to see the freedoms thier brothers have that they never will. As we try to be the best mom's for these boys yet we are put many times in no win situations. Our oldest son Ben was a very good football player and champion high hurdler. Many times when Ben would be on the podium and get the medal he would look over to his brother in the power chair and I know wanted to trade places with Jacob for a while. As a mom I'd look at both boys and all I'd want to do is cry but
that would make both boys upset. Both Ben and Kelsey appear to be doing well inspite of it all, if only there was a manual or cookbook on how to journey with DMD on many impossible issues.

Thank you Rita for being brave enough to address these difficult areas! Cheri
Comment by Jennifer Shumsky on March 28, 2010 at 10:35am
Rita,
I too enjoy your posts. We really have to meet up sometime. (or maybe we have and I don't remember at an MDA event). I am blessed that my son is still small and my husband still does the piggyback lifting for most of these events, but I too feel so burdened when I need to carry/lift him. God Bless!
Comment by Ann Avery on March 28, 2010 at 6:27am
Rita--I so enjoy your blog posts. Do you have a Hoyer type lift? I stopped lifting my son at about 75 pounds and still use his older style manual pump lift. The new ones are electric, but I don't mind "pumping iron". Please continue to share your experiences as you go on this unwanted journey. It sounds like you have a wonderfull group of supportive people who will prove even more invaluable as time goes on. With 2 boys with dmd you must be TWICE as special a mom as you seem.

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