A great Noel

One of the perks of writing a blog is getting to know so many people from all around the country. I have made lovely connections with many other parents or siblings of disabled individuals or just people who read these stories. The connections are strong, even though I have never actually met many of them in person.

One such connection is Tamara in Alberta, Canada. Tamara's daughter Noel and Maggie had a lot of things in common. Both were disabled girls who were the center of their mothers lives and, sadly, both passed away far too young. Noel left us about six months or so before Maggie did. She was only about 16. Because of the similarities in their lives and our grief, Tamara and I have really connected - yet we've never been within 1000 miles of each other.  Some connections don't require face to face interaction.

One day in November I received a package. I hadn't ordered anything and it wasn't my birthday. What could it be? When I opened it I found this.

Tamara sent some people a pink cup with Noel's name on it because it would have been Noel's 18th birthday. She wanted to know that people would be thinking of her daughter on her birthday. I think it was a fantastic idea and I may do something similar in March. Even if they're gone, our girls are worth celebrating and what better day than the birthday.

Fast forward to Christmas Eve dinner. With all the hustle and bustle, I forgot to buy straws for my father in law. It's easier for him to drink through a straw and we were completely out. I simply pulled out the Noel cup with the built in straw and put his drink in that. Problem solved!

My sister in law was sitting next to my father in law and I heard her say, "Look Ed, it's a special Christmas cup. It says Noel." I just smiled to myself. How fitting that Noel saved Christmas dinner.

Thanks Noel. Thanks, Tamara

Give your input

My friend Elizabeth received a comment on her wonderful blog,  a moon, worn as it had been a shell. The comment was from a fourth year medical student who reached out to Elizabeth as the parent of a child with disabilities or special health care needs. The doctor wanted to know what parents want/need from their doctor and how s/he can provide that to parents and children s/he will meet in practice. Elizabeth called for responses. I gave one and if you feel the need, you should too. You can either respond at her specific post. (Just tell her you came from me) or respond here and I will forward it.

This was my response


Well, well well, kind Doctor. I applaud your willingness to bravely go where few doctors have gone before. It's a little place we like to call reality. Sorry for the snark, I do applaud you. Really I do. I want doctors who listen and get the fact that when I'm in his/her office with my severely disabled daughter for 25 minutes they do not understand my life or hers. They don't have to find a parking space that can accommodate her wheelchair, find space in a crowded elevator and find an outlet in the waiting room to plug in her suction machine. They don't know that I go home and lift her 80 lbs 20 times a day, change 10 diapers, catheterize and tube feed her and then have to do it all again the next day. They don't know about fighting insurance companies, schools, other services and the time and energy all of it takes. They don't know that I would do 100 times more than this if I were physically able because she is my child and even though it's a ton of work I should not have to justify her existence to anyone. at all. Ever. And especially not doctors. I want doctors to understand that saving a life means saving a LIFE -whatever that life is. I want them to read Elizabeth's blog over and over again until they get it as you seem to have. I want them to stand and cheer for my daughters amazing life, her amazing achievements, her amazing spirit without prompting. I want her to be valued as a human being. I want her to be judged by her character, and not by her disabilities. I want them to know we are all doing the absolute best we can in a very difficult situation and we do it proudly, even if a bit wearily. I want them all to want to reach out as you have. COngratulaitons. You will make an excellent doctor.

It's not a gang, it's a club

Maggie has many friends in wheelchairs or other assisted devices. It makes sense, these are her peers. Some of the more involved kids like Maggie have been in the same programs all their lives so we know the families pretty well. Other kids have moved ahead in their education and their social lives, but because we knew them when they were little and have stayed friendly with their parent(s) the kids still see each other.

Whenever I get together with the parents of disabled kids I am astounded by the similarities we have as parents despite the many different types of disabilities our children face. One of the biggest similarities is the isolation that both we and our children face. Everyone wants to be recognized for their individuality, but I have a news flash. It's good to be part of a group too.

Though I am blessed to have a large family and many friends, this particular group of people play a role that no one else can. They listen with interest when I brag about Maggie being able to make a yes/no sign or reach her hand out to get something. They don't smile pitifully, they rejoice. And they know I do the same for them.

Today I am thankful for those friends and their remarkable children.