So Nicolas is 8 now.  Yesterday, he was outside (nice weather in Illinois) and he called me and said he can't get up.  I usually help him up, but he said that he can't get up by himself anymore.  Feels like this has happened overnight.  I am so exhausted because I stayed up crying about this last night.  I'm not ready for this at all!!!  Again last night when in the house he needed me to help him off the floor while he was playing with our dog, and told me again that he can't get up off floor - that it's too hard for him now.  I thanked him for letting me know and that I would tell his doctors (Dr. Wong), but I'm a mess today at work.  This is ridiculously hard!!  What do I do?  Please anyone that can help me answer his question about this - please help!

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Michelle,

This is very hard. Crying is good. It is hard to know why this is happening suddenly, but it is important that you have him seen soon. It could be part of his DMD, but maybe not. My son fell when he was about 12 and couldn't walk. It turned out he had swelling from the fall and when it went down, he was fine. Whatever it is, get it addressed as best you can.

I used to be someone who thought I was in control. And a lot of times I could make things work because I am persistent and creative and good at prioritizing  (High tech manager, MBA, travel the world...) At 64, I don't think that any more and it is not only DMD that brought about that change. So what do I think now? Somethings I can change things and Pat Furlong is an example of that although there is always a personal price for that kind of dedication. (The article on Pat in the New Yorker December 2010 issue is worth keeping and re-reading.) Others require adaptation and watchfulness. DMD is one of those. I keep up as I can on opportunities to improve John's life and focus on what can be done each day. It keeps the anxiety and fear from overwhelming me.

It helps that I have many friends who have significant disabilities. I just got a request from a friend to provide some local housing/living guidance to a young man who has DMD and is starting law school in my city. I have friends who have mitochondrial disorders bu who have gone to law school, adopted kids, go camping, travel, serve on national commissions, do what they want with their lives with adaptations including, of all things, entering a Peeps diorama contest.

 

I went to a memorial service for a good friend on Sunday. She had spinal muscle atrophy and was supposed to die before age 7. She died at age 47, married, with an adopted daughter, a nationally recognized poet/essayist/speaker, having traveled to several continents (with her electric wheelchair, respirator, cough assist...). to attend conferences or speak. She had written extensively about how the society around us, not understanding what is really possible, makes people with disabilities (PWD) feel they have no value, no future.. And how that debilitates the PWD and their families. Very few "walkies" (her term which I love for people without mobility challenges) that I know have had nearly as rich a life as she had or made such a clear contribution to society. People came from all over the world to honor her.

So the conversation I am suggesting might go like this

"^$#^#^$ darn it, Nicholas suddenly seems to be weaker. I am so scared. I better call Dr. Wong and his pediatrician today (doing what needs to be done).

This could really change the responsibilities I have and reduce the time for other things. (some of which you don't really want to do anything so let them drop off the list first).

I am worried about the future - can we go on vacation, could he die, can I handle this, will I be up to the challenges, I meant to give that donation to help Japan, what about the service dog (notice the jumping around to all levels, all time zones...).

I don't know who to call, none of my friends or family really understand (they say nice things, avoid the topic, don't invite you to xxx, don't call as often..)

They are damn cowards abandoning me when I need support. They need to grow up and come to grips with the idea that we are all one stroke or accident away from having a disabling condition!!! (Anger is good)

I am so sad/sorry/destroyed/overwhelmed. Why me?? (Look around in nature. There are many varieties of trees, plants, animals. That is why there is genetic variation - for survival.)

Where is the phone number of the local ARC? (they will know of other groups of parents who are facing tough medical challenges - maybe not DMD, but in a lot of cases it doesn't matter).

Why am I so disorganized today? (The miracle being that you are still thinking and forging ahead) I don't know whether to laugh, cry, scream. put on the coffee pot (all good alone or in combination).

I am very sad. I am very scared. I feel so alone. I don't know what to do. (all normal and transitory feelings reflecting the impact of reality).

I am not going to let this ruin my life or his. I will do the best I can (remembering the pictures of the Japanese survivors from the earthquake.)

And I will reach out today and help someone else(open the door at the grocery store, pick up that paper littering the sidewalk). That will make me feel like I can do something while I wait for those **%*(^%*(^%(* doctors to call (yeah, they are busy but they make good anonymous targets as long as you are polite in person).

I better make that list of things to do. I am so overloaded I might forget to brush my teeth. Do I need to think about changing jobs?

Yes, Nicholas. It is scary but we'll just forge ahead. What movie do you want to see this weekend? Or do you want to go the the museum and see the stuff about the pirates. I saw there is a baseball team for kids your age and they work around your medical condition - do you want to sign up?..."

Write your own story. Don't let anyone tell you that your story or that of Nicholas is any less valuable than their "normal" story - whatever they think that is. Choose from the options in front of you. Don't worry about those that fall away.

I had to change my perspective on life, what was a good life, who mattered, whether I accepted the "judgments" of the broader society around me on what/who was valuable. It has been hard and some days I still cry. Then I go look at the plaque that my son John with DMD got from a company that makes emergency escape equipment to transport PWD or people with injuries out of disasters. He (Mr. mechanical ability) suggested an improvement to their product which they implemented. I play the video of the cheer leading team to which one of my other sons belongs. They are the national cheer leading champions in the special needs category - when you see kids in braces doing pyramids and handstands on the wheelchairs of their peers - well it is harder to say "this is too hard."

 

I don't know if there are organized groups of PWD where you live, people who say "damn, that was harder than I thought" and move on. There are many of us on the same path as you are, both ahead of you and behind you. You are not alone. It will not be all right in the classical sense, but it will be all right.

 

Ginny

Ginny,

You are awesome.  I read this and wept, but then felt acceptance.  Thank you so much for your words of encouragement.  This is exactly what I needed today.  Especially today knowing my son can't "get up" anymore.  Once you lose the ability, as we see our sons go through each step, it hurts more and more.  To read what you wrote, just makes me that much stronger, and also more realistic, but okay with it.  This morning I was horribly sad... wanted to crawl in a hole.  After reading what you wrote, I feel empowered to let Nicolas know and all his care providers (teachers and daycare providers when not in school) that we will get through this and it's just one step at a time.  Thank you Ginny - you are wonderful!!

Michelle,

I had tried to respond earlier but it did not go through. Thankfully Ginny has already responded to you by the this time.

I am so sorry, and I don't have a clue what to say except that I can feel your torment and pain, and I wish all the boys and their parents could be spared such shock.

We are all thinking of you and sending the energy you need to deal with this. I know that other parents with experience like Ginny will be able to help support you better than my pitiful words, but I wanted to ackowledge you and Nicolas for what you are going through right now.

A.

Thank you so much Andrea!!  I know this is difficult for anyone to go through - or has been through - I just wish it wasn't so soon.  When are we ever ready for this?  I appreciate everyone's words of wisdom, thoughts and prayers.  I think I need to just take a breath, as a friend just emailed me.  Just breathe!  This has been hard to do today, but Jessica is right - I need to take a step back and breathe.
Ginny- Your post was awesome. I will hold on to it for one of my hard days. I am only 74 days into this journey, but I have already experienced a lot of your thoughts. Thanks again.

Michelle, I completely believe I will react the same way and will look back to this posting to see Ginny's strong arms to give me a hug.  In fact, this morning Connor had a huge leg cramp that took me awhile to massage.  Instantly, I was going through a smaller version of all the feelings and thoughts that you and Ginny described, including "Screw the job! I'm going to stay home and play with my son! Oh wait...I need the money to pay the bills - grrrrr!"  With every little tidbit out of sorts, I'm chomping at the bit to understand why, what, how and then how can I make this better!  Of course, then I'm consumed ALL day at work and barely get anything done...if at all which then leads to guilt for wasting my company's time and turns into I just SHOULD have stayed home and played with my son.  Cyclical effect, of sorts. 

 

Depending on your persuasion: I have days when I think a good glass of wine sounds good, and others  that a good cardio kickboxing class would be good too!  I just added the local gym's hot tub and steam room to the mix as means to sooth my fears and get the brain thinking of something else.

 

Hang in there!

 http://www.uua.org/documen ts/hersheylaura/telling.pd f

http://www.thenthdegree.co m/proudpoem.asp by Laura Hershey

 

Two of my favorite peoms for times like these.

 

Ginny

 


Ginny,

Hope you don't mind that I took a peek at the poems too. Thank you for sharing these helpful words ans your kind spirit.

Andrea

Andrea,

 

You are welcome. They were shared with me and helped me. Passing them on is one way of sharing what I have been given.

 

Ginny

There are no words of comfort when your son finds it impossible to do the things he had been doing. One day my son, Patrick said "my legs won't work anymore." He did not walk again. I tried to second guess the progression, what happened, what I might have missed. Cried because somewhere in my heart I thought he had more time. Angry because Duchenne, one more time seemed to catch me off guard.

Like you Michelle, I cried myself to sleep and woke up crying. I think you should contact Dr. Wong, see if there are options or if she has some suggestions.

And wrap your arms around your son to ask if his muscles are feeling different, if he is feeling ok, to understand how he sees this change.

Last, it might be a good idea to connect with Helen Posselt. In my opinion, she is the best PT in the world, and may have some thoughts.

Michelle, please keep in touch and let me know what is going on.

Warm regards,
Pat

Thank you all so very much.  I was blindsided by this... as you said Pat - I thought I had more time.  I've always known what can and most probably will occur in the future, but I always kept it in the distance.  And now I see Nicolas going through some very tough times.  I see his determined struggle to go up the stairs or simply get up from the floor.  He knows that the battle is starting to be lost little by little.  I see the depression in his big brown eyes.  He just wants to be a normal boy.  My heart just broke when he said he just can't do it anymore.  

 

I am so much better today after reading all your posts, and in browsing through the other discussions.  I'm so very thankful that this website is here for venting and for information.  I wouldn't know what to do without PPMD.  I have emailed Dr. Wong and waiting for response back.  

Now that Connor is old enough, he is beginning to verbalize his anger towards having DMD.  He still talks about how he just doesn't understand why God would make him this way.  He sometimes talks about how he does not want to start doing things that he knows he won't be able to do after awhile because of DMD.  And somehow, I thought this pessimism would be minimized by maintaining a matter-of-fact, let's not make this a big deal attititude towards DMD in front of him.  We've tried to convey the idea that it's a fact of life, nothing we can change right now, so let's have as much fun as possible until the doctors find a way to help him.

 

I'm trying to understand what brings on the thoughts (like Pat has suggested) but he's still deflecting when I get to these questions.  He's only 5.5 years old, so I'm not surprised.  I'm sure we'll help him talk about it more as time moves on.  It's been tough hearing him talk like this.  He understands more than what we've given him credit for...

 

However, I cannot imagine how tough it is for him when he sees the same thing your son sees, Michelle.   Just breaks my heart. 

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