I guess I could have written this in my blog instead of here on this discussion board. As much as I blog, I should blog it but I'll just post it here.
I have been struggling alot in my committment to the muscular dystrophy community. I have found myself building this wall..distanting myself from people and the topic alll together. It's hard not to when you face with it every day. But it seems like at times when I do check in with one of the MD online communities another boy has passed away and I just sit there and cry and cry. Then I get angry. Not at the boy or the parents or the MD community, but at the disease.
With all the new technology, the advances in proper care and treatment, the advocacy work, the research, the fundraisings, you will think that there has to be some kind of break. Like there has to be that cure by now. Why is it taking so long and why do so many have to "die" while waiting? I'm sure you may be asking yourself the same thing.
I know God has given me this young man as a gift. (I no longer can call him a "boy" since he is now 20 years old.). And now that he has passed his teen years and I see how well he actually is doing, I know I am blessed in so many ways. He is not on a trach. He is now "addicted" to his bipap. Although he is unable to eat solid foods, he still has his nutrition through the g-tube, and drinks his juices every day. Tim is advanced with his health while he is doing better comparing to others,he has his days when his feet swell and he can't burp due to the formula. His hands are now so limited to what he can do and the latest thing is that he has to have his cell phone with him 24/7 because he is so afraid that I will "leave him". I can't even go to the bathroom or to the kitchen without him having that phone. He needs to know he can contact someone if I should fall over or don't come back from an errand. It is a fear of being left behind with no help.
Now anyone who knows me I would never abandon my son...not intentionally. But I guess he is afraid I would get into an accident, or fall and get hurt and end up in the hospital....or die on him. It is a valid fear. I understand that. But sometimes its to the extreme of just walking over to the kitchen....or to the bathroom;..or to my bedroom.
He has a fear of loosing me as much as I have that fear of loosing him. We have become "best friends"in a way. I'm there for him 24/7 when no one else is willing to be there. Although we finally! finally!! got respite care and a home health aid...I still need some kind of solid sleep without the interuptions every few hours.
Last January, I was at a treatment center for my depression. It was group therapy. And the therapist made a comment to me about Timothy. It's not how he said, it's what he said. He assumed that because Tim was no longer eating (not thinking of the g-tube) that Tim might have no more than 6 months to live. I don't know why that hit me really hard. And although the rest of the group thought he was insensitive to my feelings by saying that...I knew what he was saying. I found myself running out of the room and actually hiding in the women's bathroom in a corner sobbing.
I was not ready or willing to accept the fact that Tim may not be around this summer. Of course, he was wrong about this theory...but it still affected my way of thinking. All I could remember is sitting there sobbing...& begging God for mercy. I was actually negotiating with God to please spare this boy's life...to give him a chance of a successful and productive life and take me instead. I was negotiating with God. Something God does not do...negotiate. But I did beg for mercy.
One of the other therapist tried to get me out of the corner and back into group and yet every time I went back into that room and heard this one male therapist speak I would just break down and run out again. I was feeling weak. Tired. Afraid. Confuse. My emotions out of control. I had to get a grip and say stop it!! He is wrong...he does not know what he is talking about. But it already had affected me.
My assigned therapist agreed with me that he was out of place to say that since he is not a physician and does not know all the facts. So I knew it was not how he said but what he said that took ahold of my emotions. It was just pure scary to know that there was that possiblity.
I talked to Tim's primary doctor about this and she assured me this would not happen since he is getting nutrition through the G-tube. It made sense to me and I felt a lot better after that conversation.
As a mother who is the only caregiver of my son's life, it can affect you emotionally, physically and spiritually. No parent should witness anything emotionally like this. But unfortunately we do. But you see, I know about all the new advances. I know about all the new technology. I know about all the advocacy and fundraising to save these lives...but it not how much you know but what you do with that information that makes a difference in your home.
I have back off in the fundraising because no matter what I do and what I suggestions I apply, I am unable to raise any funds. It is very discouraging and depressing. My fear as new parents with boys recently diagnosed will get the same treatment in time as their boys get older. After a while, no matter how hard or how much you work to saving your son's life, people including family and friends will get tired in giving to a worthy cause for a worthy child. It will happen...sadly. And if not...then that is 10 stars for you. That is why I suggest to be careful how often you ask friends and family...you don't want to loose that momentum...you don't want to loose that priviledge or hope. But you don't want to scare them away either.
Its not that I don't want to do it or be part of it, I do...it's just now I'm so tired and I'm exhausted.
So I told Pat, when the day comes if I win the lottery (lol..right?!) I will for sure donate very big to PPMD because I believe in that cause and its values. She, of course, laughed and thanked me for thinking of them. I know if and when I should win the lottery, PPMD is on top of my list. But right now, it is only wishful thinking.
I don't mean to "abandon" the muscular dystrophy community, I really don't. I'm just exhausted. I get discourage quickly now and, of course, my depression often gets the best of me. And although I know I have good intentions about alot of stuff to help raise awareness, I have to find myself doing other things to occupy my mind.
I am still here...I still read the boards at times. I'm just taking a break. So forgive me if I lack the "support" I know you all need and want. That I 'm willing to do. Just at times, some of us needs that break to find new ways to refresh our minds and spirits.
We need a retreat for parents who needs a break.
Tim quit going to UF due to his limitations but I'm working on encouraging him to at least take online classes. Just trying to motivate him. I'm his motivation coach. Now...if I can just find my motivation coach...maybe that is Tim.
I hope my honesty does not offend or upset anyone. It does happen when single parents lack the support and help. It's no ones fault but the system. Its what it is. Sadly, It's reality.