Thursday, August 19, 2010

A letter to Max: I do not mourn who you are

Dear Max,

After I put up the post yesterday on being sad about us not getting a happy ending, it occurred to me that someday, you may read it and think that I consider you a tragedy. (I know for sure you will think I am the world's lamest cook, but that is a whole other story.)

I wrote to you last year right around this time, too. It was the night before you got the stem cell infusion at Duke University, and I wanted you to know that I do not regret your disabilities. I didn't want you to ever get the impression we were doing that procedure because we thought you were lacking in any way. Once again, I don't want you to feel that I in any way mourn who you are.

Because I am your mother, I mourn that you had a stroke. I will always mourn that. At times, I get bummed that you have more challenges to overcome than other kids. At times, I get sad that you were not miraculously healed.

But I do not mourn YOU, Max. I can't imagine any other Max. Like last year, you are a boy who is full of enthusiasm and sweetness and brightness and all sorts of wonderfulness, not to mention Good Hair. This year, you've become a boy with a really great sense of humor. You've developed lots of, shall we call them, passions—purple! Car washes! Toyota Siennas! More purple! You're spelling your name out loud and doing an admirable job of writing it. You're saying lots of new words, and wow, is your "NOOOOOO!" clear. You are trying hard to speak in sentences. You are getting very wise; when you want to sleep in our bed at night and I say "You can't, it's broken!" you laugh at me and say "NOOOOOO!" (Apologies for trying to put one over on you, but you kick in your sleep.) You're doing an awesome job of feeding yourself. You're walking up and down stairs by yourself. You pedal your green tractor down the hill like a speed demon, with a wicked little grin on your face the entire time. You've learned how to isolate your pointer finger and use it to point to things and peck out stuff on your iPad, quite the amazing feat. You are getting really brave about exploring new places, even pancake houses. You have a best friend at school, Caleb, your first ever best friend. You have all sorts of new interests like miniature golf, computer games, finger-painting and the show Max and Ruby, and you think it is hysterical when I call it Max and Poopy, which is good for my ego because it's really hard to get a laugh out of Sabrina. You plant the yummiest kisses on my cheek and when you nestle your head into my shoulder and make those sweet sounds, I am the happiest girl in the world.

I love you as you are, Max. I always will.


  1. This is wonderful, both in sentiment and execution. I sometimes wonder what my kids will think when they read my blog. I hope I'm not providing fodder for others to tease them or for them to be embarrassed. I'm going to copy you and write a letter to my children on my blog.

  2. Yep. That's it, exactly.

    Sometimes it does help to list all the progress, to step away from the day-to-day and take a moment to be impressed--I think Max has done some amazing things since I started peeking at your blog, and I don't know the half of it.

    You promised us another report on that Prolo-whatever-pad...he's using it a lot? Is it helping? Do you talk back-n-forth with it to kind of give him the idea that it is "cool" to use?

    Be water, my friend!

  3. I found this to be a very moving post.

  4. Thank you so much for yet another heartfelt and moving post. A wonderful and gentle reminder that we all need to make sure we let our kids with special needs know that while we want to help them to make their lives easier, we do not see them as "less than" in any way. Thank you.

  5. I think we mourn many things that happen to our children, broken arms, broken hearts, broken dreams. For a parent of a special needs child, we mourn different things, and we mourn differently. We can tell a child with a broken arm that it will heal. We can tell a child with a broken heart that one day it will mend and they will find love again. We can tell a child who wanted to go to a specific college and did not get in, that they will enjoy the college that they do get accepted to and their goals in life will go on.

    We cannot tell our special needs children that their disabilities will go away. That is a difficult pill to swallow. As parents, we want to make everything "all better" for our children, and as parents of special needs children, we learn that we cannot make everything better at least a decade earlier than other parents.

    Take a parent whose child is addicted to drugs and whose dreams in life are destroy. Those parents mourn the "what could have been"...they just mourn it later in life.

  6. What a lovely letter to Max, Ellen. Thanks for sharing it with us! You guys are so lucky to have each other.

  7. Max is a smart kid. In the future I don't think he'll have any problem seeing your words as simply wanting the best in life for your children. You want them to be happy! You would spare him and Sabrina any and all difficulties if possible--gladly take any suffering on his or her behalf! You love them. You're their mom. It's what moms do.

    Other moms don't have to clarify that they love their children in spite of, let's say, a broken arm and they also don't have to feel guilty for saying they wish there was anything they could've done to prevent the breaking of said arm.

    I love my son and I want to do everything in my power to make his life happy and difficulty free. For some moms that means buying the car with extra airbags, for us its a stem cell infusion at Duke. (Bertrand has his this Tuesday!) We love our kids. It's what moms do. :)

  8. Aw. I got teary-eyed reading this. And that's saying something!

    I mean, usually I just cry during episodes of Bethenny Getting Married.

    Jokes aside, I love this post. Frame it.

  9. Lovely! I was just saying something along the same lines this morning about our T-man to my husband. Max is a fortunate little guy!

  10. This made me cry. What amazing gifts you and Max have given each other.

  11. What beautiful words. You are an awesome mom and I am sure that Max knows that!

  12. I love this post. Now I have to go find a tissue, though...

  13. As the grown up child with disabilities, I have to say that this post truly moved me. I grew up with a mother who constantly mourned who I should have been. I'm very lucky to have found a husband who accepts me just as I am, because it's finally made my mother realize she missed out on a lot dreaming about who I could have been.

  14. I have enjoyed reading through your blog and plan to come back to read the older post. I have tried to start my own blog about my son, but find it difficult at times with all of his challenges.

    You have inspired me to share more of my own stories. I know there are so many parents out there who need someone to relate to. Often our friends and family don't understand.


  15. All Max has to do is read a few posts on your blog to understand the complete love you have for him. It is evident in every post you make. :)

    As much as I hate that my daughter is disabled and has to constantly work harder than typical kids to do basic things, she is awesome! I wouldn't trade her for the world. She is the cutest, smiliest, funniest, happiest, giggliest, stinkiest, sometimes most NORMAL kid ever!

    I don't for a second think that Max will think anything other than DANG my Mom loves me a lot. :)

  16. You made me cry just now! I mean that in a good way. :-)

  17. Ah this is a delight, such a joy to Max is so clearly a joy to you.

    I often feel like a 'voyeur' here as I don't have a child with special needs. But i had some problems with my second child and it took me a long, long time to love him. He wasn't planned or, frankly, wanted. I had a lot of medical issues which meant a second child had been strongly advised against, so I really just didn't want him. But I got pregnant against all the odds and that was that.

    I've blogged about it a little, but I often wonder how he might feel if he read my thoughts. I did write a letter like this to him a while back. it felt good to feel that 'rush' of love and pride as i wrote it. I didn't want to be pregnant, I didn't want another child but I don't regret him for a minute. xx

  18. Thanks, all. I was really moved by your comments. I hope you were wearing waterproof mascara. :)

    Felicia, I promise a new video of Max using the iPad soon! He thinks it's awesome.

  19. What a great piece of heartfelt writing!

    As an adult with CP, I loved reading this post and could almost hear my own parents voices. My mom and dad raised me to believe that I could accomplish great things through hard work and sacrifice. I was not introduced as "our son with cerebral palsy." I was just Johnny. I know that mindset is a large reason for my success today.

    Remember, the word disability means "without ability." We all have ability. You just have to look for it.

    Thanks -

    John W. Quinn
    Author of Someone Like Me - An Unlikely Story of Challenge and Triumph Over Cerebral Palsy

  20. I loved this post, and I loved the last one. I've been struggling with all my conflicting feelings, maybe I need to learn how not to see them as conflicting - mourning what Hannah won't get and celebrating the joyous creature that she is. I just posted a video of her smiling after trotting for the first time at hippotherapy - two years old and full of joy at her accomplishments, yet I wept today when my PT said botox to me for the first time when he watched her heel not coming down. Bittersweet, more sweet than bitter.

  21. Thank you for sharing your heart with you son and for showing us all how to love fully and wholly!

  22. I love your honesty on your blog. And I'm getting some insights into this different world I have entered, the world of being a mom of a child with a disability. It's so different from the world I have been living the 7 years prior to having Myra. Thus, I have given you a blog award! You can see it here:


Thanks for sharing!