Monday, February 20, 2012

After all these years ...

After all these years, I still find it very difficult to let people in, to open up to "in real life" strangers and let them know that my life is just a little bit different from most.  I have no problem sharing the details of this life or my innermost thoughts and feelings when I'm on this side of the computer and I don't have to actually face the people I'm sharing with.  I find it extremely uncomfortable to share the fact that I have a disabled child with people I encounter in person, let alone share the details of this life. 

However, there are times where I have to step out of hiding and let people know that I need help and explain why.  Recent case in point:  I received an email last week from the parent assistant for Eric's class asking if any kids would be interested in joining a writing club that will meet before school one day a week.  Eric would love this as he is such a creative thinker and writer.  Problem is, Mark is at work early in the morning and I can't leave the house until 8am when Jack's nurse shows up.  To participate in the writer's club, Eric would have to leave the house around 7:45am.  I can't get him there.  So, I had to suck it up and share just enough about my life to let this mom know that yes, Eric was interested, but I couldn't get him there and ask her if there anyone who would be able to pick him up in the morning and take him to school.  It's times like this, when I can't even get my kid to school a half hour early that I really resent the restrictions this life places on our family.

Of course, the mom was very understanding and sent out an email asking if anyone could help give Eric a ride in the morning.  Within a few hours, two people volunteered.  I, of all people, should know that people like to help.  Heck, I like to help - that is why I founded The Willow Tree Foundation.  It's just much easier for me to give than receive.  

The mom also told me that Eric has talked about Jack with her and some of the kids in his class.  She told me he seemed sad when he was talking about Jack.  I guess it's a good thing I have Eric in Sibshop.

Eric also shared with me this weekend that his teacher "forced" him to talk about Jack.  Eric is like his mother, he doesn't like to be the center of attention.  I asked Eric what he shared and he said he told his teacher that Jack has muscular dystrophy, a trach, a machine that breathes for him and that he can't talk or eat.  Guess that pretty much sums it up! I asked Eric if the conversation was just between him and his teacher and he said, no - that he was asked about his brother in front of the entire class.  I don't know what the circumstances were or why the topic came up, but I give Eric a lot of credit for talking about Jack in front of his entire class. 


I spent most of the weekend drafting a "Management of a Ventilator Dependent Child" parent perspective essay for a Cure CMD International Webinar.  Not an easy thing to do. It's difficult to take thirteen years of experience and decide what is important to share and putting so many thoughts into an organized writing.  But, I finished around 2am this morning.  

Next thing I have to work on is my introduction speech for CHOC Grand Rounds next month when we roll out the TouchStones program.  Scary and exciting at the same time.  I'm anything but a public speaker, but, then again, I never thought I'd ever find myself suctioning a trach and adjusting vent settings either.  :)


Jack gets the new vent on Wednesday.  I'll be sure and let you know how it goes.  

Thanks for checking in.


Anonymous said...

Impressive, as usual. I appreciate what you have to say every time you write. I'm glad Eric has an outlet to share his experiences. It is a very good thing for him to know that there are other families like his and that he is not alone in having a sibling like Jack.

I hope Jack is feeling good, and I hope the vent transition is as smooth as it can be for him. He is a dear, sweet boy.

Sending lots of love from Texas,

Susan said...

Ann I totally understand. I too am a writer so expressing myself in writing is one thing. Real life is another thing. But you are right. People do like to help and I'm proud of you for asking. I know how hard that is and it's great he'll be able to participate. You should be proud of Eric for being able to talk about his feelings of sadness, which are appropriate. I know Evie and Adrian have times of feeling sad for what Ainsley goes through too. Much love.

worthy said...

Pleased that you were able to get someone to take Eric to school early and that he is able to share his experiences.

I hope Jack does well transitioning to the new vent.

sending much love across the pond xx

Tammy said...

You will do great! Isn't it amazing the things we can do when there is no other option. I'm glad that things have worked out for Eric and I hope all goes well for Jack this week. It was so good to see you and your family last Saturday. We still need to have you guys come out to "the farm" one of these days before it gets too hot!

Gr8Life said...

Hi Ann,
I loved this post!
I find it hard to let people in on my life and it has actually been something I have struggled with for a long time because I am really private. But I decided that I am who I am and my life is what it is and I can't change that. And I shouldn't have to hide it from others and if it makes them uncomfortable so be it. Although I really wish it didn't make people uncomfortable. But that does seem to be what it does.
I am always surprised by who steps up to be supportive or a friend, it is not usually the people I would expect it to be.
I know asking for help is REALLY hard for me to do. But It's also hard because I always think that some how I should be able to do it ALL with no help. I just don't know when to ask for help. I always think that their has to be a way that I can do it all myself.
My parents taught me to "never give up" "do for yourself that which you can do" and I guess I take it to the extreme. I know people like to help because I like you, like to help others when I can. But I do know their are people say that want to help, but when you ask them to help, they do it but they seem to have an "attitude" like they would rather not do it. I guess that it is not fair for me to make that type of judgment about why they seem to have an attitude. But it has happened to me. (it was a family member that has always said she wanted to help out. When I asked her to help me she did but I got the impression that she really didn't want to help me. She was doing it more out of "family duty" more than wanting to help out)

I have heard about SibShop and have wondered how much they would help my kids. my oldest son is 12.
Do they have kids in the group his age do you know?
My 12 year old is very bad at expressing his emotions or feelings. I have wanted to try therapy to see if that would help him but after talking to several parents that have kids his age some of them said their child still would not open-up to the therapist. I honestly think my son would likely not either. And my husband doesn't want me to take him to a therapist because he says "he's dealing with it all in his own way and there is nothing wrong with how he is dealing with it. And I don't want him to think he's wierd"
Around the end of 2010 I took him to the neurologist because he was having very frequent tic's The Neurologist diagnosed him with "chronic tic's" He said he is likely to do it more when he is tired or stressed. Well he started doing it more after we told him about Gummy having MLD and that he was goimg to die. So to me that shows they are obviously connected. I think the connection is that this stresses him. He has said he doesn't want his brother to die. When we told him about Gummy he seemed shocked and sad.

Gr8Life said...

I think he wanted to cry but thought he couldn't because he is a boy.
His Tic's did slow down over last summer but when school started again so did the frequent tic's. School really stresses him. He has really struggled with making friends and being teased at this school. But this year has been a pretty good year for him. I found out there is a group of kids that will let him play soccer with them during recess and that has made a huge difference. Also being in Boy Scouts has helped him a lot as well.
I am glad that Eric is able to talk about his brother. It can be hard to tell people about someone or something that is special to you because your worried they will just make fun of that which is precious to you.
I am curious about how you deal with people that stare at Jack.
I really hate it when people stare at my children. Some people excuse it because they are stares of sympathy, or because they think the person staring is obviously ignorant, Maybe the person starring is trying to decide if you would be open to talking to them because they want to ask questions. I don't know why people are starring I'm sure they all do it for different reasons, and I am sure they are not all doing it out of malice, but it still is hard. what is it you tell yourself when you find someone starring at your son? Does it bother you?
I think you should write a post about it.
Also what do you say when people ask "how Jack is doing"
I am always stumped for words when they ask how Gummy is doing. I always just say "fine".
I asked another mom what she say's when someone asks her how here daughter is and she said I say "well she still on this side of the ground"
I don't think I could say that as it sounds pretty morbid and is likely "off putting" to others.
I also love to read your posts.
I have been behind lately.
Thanks for sharing with us

Christy said...

How did I miss this post?! It's kinda funny because I think I share too quickly. And when I do, I usually regret it. I guess it depends on who I share it with and what their reaction is.

I am glad you reached out. I do think most people like to help. And Eric benefits, so it's worth it. I can't wait to see what he writes!

Love the sibshop. I think it's been great for Murphy, too. His teacher called me the other day and said he cried when they watched a movie about Helen Keller. So, I know what you mean when these awesome kids who have so much to deal with, break our hearts! Thankfully they have such great senses of humor! And they get that from us being so darn funny! ;-)

Thank you for sharing with us! We all benefit!

Love ya! xoxo