January 24 is Moebius Syndrome Awareness Day

Tomorrow, Tuesday, January 24th is Moebius Syndrome Awareness day. I ask you to please wear purple and talk about Moebius Syndrome and this little boy named Luke that you know with Moebius Syndrome.

Why is Moebius Syndrome Awarness day important?

1. The more people that know about Moebius Syndrome the more likely babies can be diagnosed right away and their parents do not have to wait in limbo no knowing what is going on with their child. Luke was lucky and we had a friend with Moebius Syndrome and doctors who had seen Moebius Syndrome. I know adults and children that didn't find out for many months, years or even decades. Also, when you know your child has Moebius you become part of the Moebius Commuinty where people have been where you are and can help you through it and give you advice and encouragement and just be there. When you are unsure of your child's future it is nice to see adults with Moebius that are living life like everyone else.

2. The more people that know about Moebius Syndrome easier life will be for Luke. When people know that he can't smile and may breathe through a trach but he is a normal little boy who loves to play, has feelings and is just as intelligent as the next kid (although we think he may be smarter, no bias ;) ) Hopefully, when people understand why he doesn't smile or show expressions they will not stare as much or treat him poorly.

Here are some links to stores and articles written about Moebius people:

Tim Smith, adult

Chelsey Thomas, young adult

Jayden, 4

Caleb, 7

Kevin Smant's blog post with many more links

I must say I wish I was more involved with the media and such but I can hardly keep my head above water most days. I think my mom once told me that Luke is young takes a lot of work and I can do more when he is older. This made me feel better espcially since I am also in the middle of sleep training for Hannah. (I think we are at almost 2 hours of crying tonight).

Tomorrow happens to be play group and so Luke, Hannah and I are dressing in purple. Luke didn't have anything purple and I don't get out to just "shop" often so I didn't pick him up a shirt or get around to ordering one online. So I made him a purple t-shirt tonight, organic material even, out of some material I had lying around. It has some flaws and due to time constraints I didn't want to take the time to pull out entire seams. However, for a freehand t-shirt I think it does the job. I am actually quite proud of myself, especially since I just never seemed to have the drive, or talent (which I may still not have) for sewing like my seamstress caliber mother and great-grandmother. We also have bracelets (which my parents got for me) to hand out at playgroup. One of Luke's teacher/therapists is meeting us there and has agreed to wear some purple herself. And the nurse and therapist that came to the house today got bracelets. So I guess I am starting with a small group and as Luke gets older and I feel more under control (or maybe you parents of older kids are laughing thinking that I will ever feel under control until they are much much older) I will expand my awareness day activities.

So if you have gotten to the end of this post here's the take away message:

Wear purple Tuesday, January 24th and talk about Moebius Syndrome

Project Life - saving my family's memories

So I head about Project Life through the Mom Creative blog.  I am always on a mission to record our lives enough so that I can look back on the memories later.  I don't want to forget the things in our life and times with my kids.  I love looking back at scrapbooks and memories.  So Project Life was a fairly simple easy plan.  I am more digital so I decided to try it digitally but who knows I may do it by paper if digital doesn't work out.

So here are my first week's pages...I have lots of creative aspirations that I have to tone down to the reality that I just don't have that much time.

I used two kits from Wishing Well Creations, "Everyday Life" Bundle volumes 1 and 2.

More Project Life links:
http://www.beckyhiggins.com/
http://gluestickgirl.typepad.com/moments/2011/11/project-life-how-i-make-it-work-for-me.html\

Blessings through it all

Counting my blessings today that we live in Michigan which has good government insurance programs for fragile kids and that our primary insurance through Kevin's work is pretty good.  I know of at least one person who has moved to a different state, one that is moving and one that may have to pick up everything and move just to get their children the medical attention they need to survive.  I am not talking just moving for a better doctor.  I am talking about moving to get their children home care to get out of hospitals and to be able to afford the supplies needed to keep their children breathing and eating.

I also am thankful that we had good doctors to diagnose Luke early and that they have all seen Moebius in some form.  This makes things lots easier.  Also I never had doctors tell me that Luke would not walk, eat, function normally cognitively or live.  Many parents with Moebius have been told some awful things but their kids have risen above it all.

I am thankful that we have fairly stable nursing and very few days of no coverage.  This is a rarity I have found, especially in a rural area.  Yes I get all worked up becuase there are issues in dealing with a nursing company and nurses in your house ever day, but those nurses are there, ever day.

There are so many things that God has blessed us with through all the awfulness of having a child with large medical issues. 

Thank you God for being there with us!