Tuesday, May 25, 2010

What's on your Lucky List?

I was really happy to hear, on yesterday's post, that a bunch of you have parents who pitch in with childcare. You're lucky. Dave and I happened to be talking about luck last night. The kids have been hanging outside a lot lately, and Dave mentioned how lucky we are that we live on a dead end street, where Max and Sabrina can play out of cars' way.

It got me thinking about luck. We are most definitely not lucky that we have a child who had a stroke at birth. It happens to 1 in 4000 kids. Max was that 1 in 4000. And yet, in other ways, we are very lucky about Max.

• We are lucky that Max is doing as well as he is, despite all the grim things doctors told us when he was born.
• We are lucky that Max has determination in him. Fierce determination to find ways to do things that are a struggle for him, anything from holding a spoon to riding a bike.
• We are lucky that we are able to afford therapies for him and get the insurance company to pay for others (and we are lucky I have a big mouth for battling insurance companies).
• We are lucky there is a good school in our area to send Max to.
• We are lucky that there are good therapists and doctors in our area, too.
• We are lucky that Max has a feisty little sister who can inspire him to do more (when she is not tormenting him).
• We are lucky Max is as cute as he is, because I think it makes people want to go the extra mile for him.

That felt really good to write. Think about it: It's not essentially lucky that any of us had kids with disabilities, is it? And yet, really, there is much luck surrounding them.

What's on your Lucky List about your child?


  1. * It is lucky that we found out we were pregnant again the same day he was diagnosed with CP (it put the news in perspective and took away the chance for us to second guess having another child).
    * It is lucky that all our family lives close and can help with care.
    * It is lucky that my son was accepted to Shriner's hospital and will have free PT & OT until he is 18.
    * It is lucky that both my husband and I work for people that are amazing supportive f what we need to do for him.

  2. - I consider us (all of us) very lucky that we live in an Internet era;

    - In terms of getting therapy, getting diagnosed and excellent doctors, we are lucky that we live in the US, which is a consequence of me being lucky winning on the US Green Card lottery 6 years ago;

    - We are lucky that my mom is coming in 2 days to live with us and help with Ana;

    - We are not lucky that we have a child with merosin-negative CMD (1:76,000). I keep telling my husband that we have good odds of winning the lottery one day, too.

  3. ~We are beyond lucky that Down syndrome,in-utero stroke,major heart defect,catastrophic seizure disorder, and leukemia were no match for our miracle girl.

    ~We are beyond lucky and blessed to see her smiling face each day and privileged she chose us to be her family.

  4. Not so much LUCK as BLESSED, Ellen.
    ...that I can stay home with Faith
    ...that Faith is so happy and sweet
    ...that Faith is determined
    ...that we live on a dirt road in the country right across from Faith's favorite thing in the whole world...HORSES!

  5. These comments bring tears to my eyes...all of your children are so lucky to have you as parents. It's a TOUGH road, a daily struggle and not many understand.

    We are lucky that:
    1. We live in New Jersey where there are amazing schools with amazing teachers that truly care about the well being of the children. My son's teacher and aides are truly angels from above.
    2. That we have my parents and my sister-in-law who not only love our boys, but try to understand our struggles and listen to us.
    3. That we have our younger son who is a guardian angel to our older son.
    4. That we had a pediatrician that noticed T-man wasn't meeting his milestones. It was very subtle, but he noticed and we immediately got Early Intervention which changed the course of our lives for the better.
    5. That we have each other (my husband and I). He is the ONLY one who understands the day to day challenge, but also the incredible love that T-man gives us.
    6. That T-man is such a loving, sweet child who is truly happy I believe.
    7. That we are able to get the care and therapies that T-man needs.

    I could go on and on...thank you as always Ellen. You and your family are an inspiration.

  6. I feel that I'm just all sorts of lucky.

    That G survived the seemingly, statistically unsurvivable, that Children's Hospital and his surgeon exist. That his Deafness gives him a world to belong to.

    And that he is a boy and all those scars are gonna drive the girls wild.


  7. I am not big on luck, but I definitely feel blessed beyond measure.

    I recently read a post from another SN mom and she said that she was praying for smiles from her child. That made me realize how blessed I am that I get smiles every day - and giggles - giggles are the best! It is far too easy to take things for granted.

  8. We're lucky that we live in a city with some terrific doctors and a great Children's Hospital.

    We're lucky that Mango is one of the happiest little boys you could meet. I've lost count of how many people have told us and how often I've heard that babys with neurological issues are generally 'fussy'.

    We're lucky that our school system gets us OT and PT in our home so we don't have to go out when it's yucky. We're also lucky to get additional OT and PT set up by our pediatrician - and they also come to us.

    We're lucky that he's a gorgeous boy - with a personality to match. People love to see him where ever we go, and this makes it easier when they ask why I don't let the 'big boy' out of his stroller to walk around, to tell them about his CP. Funny how people shy away from the disabled - even children - but I think it's because they have no idea what to say.

    We're lucky I am with him 24/7.

    We're lucky I have a pc so I don't go nutters.

    There is so much more I am lucky for about my son.

  9. I feel very lucky! We get help at school where we have a school community that wants to see my kid succeed. My special needs kid makes me try harder to be a better mom-slowing down, listening, being his advocate. I am lucky to be able to do all of those things for him. It could always be worse-but I can always try to make things better.

  10. We have been feeling all kinds of lucky lately. We finally know what is going on with our Max. We had been told for the last 18 months "you may never know.." over and over. Even the doctor doing the spinal tap last month said that. We wanted to say "all right then, lets just leave and stop subjecting our sweet boy to test after test. BUT finally we found out. Max has a glucose transport issue. Not enough glucose is getting to his brain and the myelin in the part of the brain that controls balance and vision is missing/immature. And we are thrilled! Doesn't that sound funny? On paper it looks scary, but no we are thrilled. If his glucose levels had been lower he would be having seisures and he has always been seisure free LUCK! If his glucose levels were lower there could be MR...this is not the case with Max. We are so happy to finally know what is going on, to be able to help him now. The most luck I feel though is to be his mom. Max has changed my life. I fought it for a long time, but when I finally accepted our road I realized that I am the luckest mom around.

  11. Though I didn't feel this way when our little Samantha was born with everything that accompanies her diagnosis, I feel incredibly blessed. My life has been changed for the better because of my sweetheart. She has molded us into better people. She's a true blessing.

  12. It is lucky that Amanda has the Mama she does, because she keeps our ship afloat in all types of weather.

    It is lucky that we have the schools that we do because the teachers have been great, the therapists wonderful, and the administration very responsive.

    It is lucky that I am a middle child and understand patience. Waiting more than three years for her to walk and more than ten to really talk seems natural.

    It is lucky that we have had five of the best baby sitters in the history of baby sitters.

    It is lucky that I work for Amanda's grandparents and they put their grandchild ahead of their sales director.

    It is lucky that I work with so many wonderful people who like Amanda more than they like me.

    It is lucky that I accept my coffee addiction because I seldom get enough sleep.

    It is lucky I had a welding accident when I was fifteen and destroyed my ability to smell out of one of my nostrils, because Amanda can be a true stinker.

    It is lucky that Amanda loves Charlie Brown cartoons because sometimes that is the only thing that will get her to sleep at night.

    It is lucky that Amanda shares her cookies, because I don't want to have to fight a twelve year old but I will for a good cookie.

    And finally, it is lucky that Amanda likes to watch football, because I'm a dad and that is what dads do.

  13. 1) I am lucky to be sitting here with time to read yet another inspiring blog post from Purple Superhero Max's awesome + fabulous + wise Superhero mom!!!

    2) I am lucky to have the chance to share with my own son stories of authentic Superheros like Purple Superhero Max!!!

    3) I am lucky to be a mom who is smart enough to learn from even smarter ... See Moremoms like Purple Superhero Max's lovely mom!!!

    * Go Purple Superhero Max + his Superhero mom + his Superhero family!!!! Thanks for all you do in sharing your wisdom with all those (like my family) who are lucky to read/know of your awesome + inspiring truly Superhero life!

  14. Great list!!! I have so many on my list of what we are lucky about...too many to list here!! I agree I think Olivia being so adorable helps a ton! ;)

  15. I feel blessed that:

    1) We live only 20 minutes from a top-notch Children's Hospital
    2) That we have wonderful insurance to pay for all her therapies and doctor's appointments
    3) That A qualified under a little-known medical waiver to receive Medi-Cal based on her medical needs, not our financial needs, and that Medi-Cal covers our co-pays!
    4) That we have an amazing team of doctors, therapists and teachers all rooting for my daughter
    5) That A has a typically developing older brother who makes her strive even harder, because she wants to be just like him!
    6) That she is doing so unbelievably well (just started walking! is getting her feeding tube removed in a few weeks!) despise all the grim news of her medical defects.
    7) That I get to see her and my son every day...the loves of my life.

  16. I've always said that I'm the lucky one who got to be blessed with Jailen. I do feel like it's luck. I'm lucky that I'm the one who gets to be strengthened & encouraged by him. I'm lucky that I'm the one who gets to feel the overwhelming emotional excitement when he says an understandable sentence, or takes a bite of his food without spilling any of it, or points at something with just one finger, or when he recognizes his name on paper, or when he sings a christian song as we're driving down the road. I'm the lucky one who gets to hold his hand at night watching him smile himself to sleep. It doesn't get any better than this. And although I do complain sometimes about the whole situation, I truly honestly feel lucky to have him. I'm just ecstatic that I was a "chosen" special needs parent.

    Thanks for the post, Ellen! :)

    Jailen's Mom:), Jessica

  17. Awesome post, Ellen! You are indeed lucky to have such great kids, and they're lucky to have you. As for me, I too am one lucky mama. My lucky list includes:
    1. Monkey can walk. When he was first diagnosed and I knew absolutely nothing about pediatric stroke, I just assumed that he would be on wheels for the rest of his life. Boy, was I wrong - he keeps me running all day!
    2. Monkey has far more use of his left arm than I thought he would ever have, much less by the age of five. When it comes to playing baseball, he can bat with two hands and is the grounder king. With a little more practice and possibly a splint sewn into his glove, I have faith that he'll be able to use Lefty as his catching hand.
    3. He's a very sharp little guy who has the smarts to overcome the physical stuff.
    4. We have a great support system when it comes to our family and friends. In fact, we have a PT, an OT and two SLP's within our immediate family alone! Gotta love it when a family get - together can double as an Early Intervention appointment. =)
    5. Above all, Monkey SURVIVED his stroke and is here with me.

  18. There was certainly a time when I didn't consider myself very lucky at all, but as time has passed and I have come to such a better place of acceptance, I am finally able to embrace all of the ways that I am OH SO incredibly lucky!

    I am lucky to have twin girls who BOTH survived their extremely early birth, and are now the best of playmates.

    I am lucky that my girls have such a lust for life and joyful spirits. They are always up for any adventure and have a way about them that makes even the hard times easier. Even during the worst of times they were always such happy, calm, peaceful babies.

    I am lucky that they are social and smart, and they are both learning to READ despite all of their challenges. This really amazes me.

    I am lucky that they can both see and hear, even though it has taken some surgeries and technology to make this happen.

    I am lucky that they give and receive love so effortlessly and passionately.

    I am lucky that they can both talk and can communicate their ideas, hopes, and dreams to me. I never take this for granted.

    I am lucky to have so many friends (in the computer as well as real life), and a family who support us and love us so much!


Thanks for sharing!