Friday, February 17, 2012

There are places I remember

We visited the pediatrician yesterday for the gazillionth time; Max was sick. (If only doctors' offices offered Frequent Fever Miles!) Turns out Max had strep throat, but you wouldn't have known it to look at him. He ran around the office like he owned the place, charming the nurses into finding purple stickers for him and letting him try a stethoscope, and playing with various toys.

The waiting room has one of those wooden bead mazes. When Max was little, he wasn't able to manipulate the beads. He'd try so hard but the cerebral palsy had done a number on his fingers and he couldn't grasp any of them. I dreaded that waiting room because all the other kids would be flinging beads around that maze, but not Max. Now when we're there and Max pinches beads between his two fingers and zooms them around, I smile like a loon. It's one of those see-how-far-he's-come moments.

When you're parent to a kid with special needs, you can have a very different perspective on the most mundane events, places and activities. So many of them are filled with memories, bad and good. The ghosts of the special needs past constantly meet the miracles of the present.

I pass the house in our neighborhood where in summer early evenings our babysitter would wait with six-month-old Max for me when I walked home from the train and I'd break into a run when I saw them and bend down to look at Max in his stroller and he'd smile but he wasn't able to make eye contact because the stroke he'd had at birth had impaired the development of his vision and I'd desperately say "Max! Max! MAX!" but he still wouldn't look at me and my heart would sink because I had a baby who couldn't even look his mother in the eye amongst his many other delays—and I am very grateful that he is able to see me now.

I go to the restaurant where Baby Max couldn't sit up in a highchair because his muscles were weak and Dave held him as I fed him—and I am very grateful for how strong Max's body has grown.

I drive past the hospital where Max stayed for three nights when, at 15 months old, he had a grand mal seizure so bad that the paramedics couldn't stop it and I rode to the hospital in the ambulance with Max violently shaking and finally a doctor at the hospital got it under control—and I am very grateful that the medication has kept the seizures at bay.

I walk by the building in town where Max went to Music Together and he'd sit in my lap as the other toddlers jumped and danced and ran around the room—and I am very grateful for how well Max walks now.

I clean the glass of a picture frame that hangs in our stairwell, the one with three-year-old Max in an argyle vest with his hair combed neatly to the side for which the sweet photographer at The Picture People told Max "Say cheese!" when he wasn't smiling and I said "He can't talk" and the tears welled up—and I am very grateful for the words Max has.

I grab coffee at the Starbucks where I was sitting with Max one morning when he was five and feeding him pieces of muffin and a woman at the next table leaned over and said, "I am an occupational therapist and I work with kids like him, does he have cerebral palsy?" and I said "Yes" and she told me how cute he was and then added, kindly, "I know it's easier to feed him but you should work on letting him do it himself" and I said "You're right, I will"—and I am very grateful that Max can now feed himself.

I notice the guy on the train who, nine years ago, bumped into me and spilled a little coffee on my coat as I commuted to work on my first day back after maternity leave and I glared at him and screeched "WATCH WHERE YOU'RE GOING!" because I was a total wreck of a woman and what I really wanted to screech to the world was "MY BABY HAD A STROKE AND I AM LEAVING HIM AND RETURNING TO WORK AS IF EVERYTHING IS OK BUT EVERYTHING IS THE OPPOSITE OF OK AND HE HAS BRAIN DAMAGE AND HE MAY NEVER WALK OR TALK"—and I am very grateful for how far I've come. 


  1. Oh Ellen. Thank you! By sharing such tender places in your heart you open up the tender places in my own heart this morning. And from these places flow tears of gratitude and grace that would not otherwise have seen the light of this day. How grateful I am for you!

    I hope Max feels much better today. Enjoy the fruits of love you sow!

  2. Absolutely beautiful Ellen! I'm also thankful for how far we've come. Thanks for bringing this to the forefront of my mind today!

  3. So true. Every word.
    I waited for 4 years for Ashley to say Daddy.
    We ached for him to stand now he shuffles around the furniture.
    His vision was set at about 10 inches at 1 year and we had to crouch close for him to see us. Now he spots me coming in the door and shouts to me.
    So very much to be thankful for.
    Thank you for articulating this so beautifully.

  4. This was beautiful. In the 7 months since my daughter has been diagnosed with CP we celebrate all of her progress. Reading this post made me so excited about continuing to celebrate her achievements - whatever they may be! Thanks for opening up Ellen.

  5. You always get tears in my eyes.... If we knew then what we know now... Wao! Congratulations for everything you guys have reach. Im sure that whats to come would be greater. Thanks for sharing and letting us know we are not alone.

  6. I think that has been the greatest gift for me, seeing how far I have come in the years since Nik was born. Seems we always hit some new hurdle and I feel like I can't find my way (emotionally) past it. yet, I do. That's the gift he has given me.

  7. I guess you gave us the tissue warning on facebook last night - but I forgot! we're still in the earlier stages for some things and later for others, but I know just how you feel. I remember the days when no one (and I mean NO one) else could hold/care for Jack without him screaming nonstop (sometimes for hours) not even his very involved and loving dad, as he's telling me "Can I push the button when you leave mommy? bye!" at preschool.
    Feel better Max!!

  8. Just reading this gives me so much hope for Zelda to one day talk, walk, sit up, feed herself, etc. she turns 4 this month and I've been a wreck, its not fair to her.

  9. I SO know what you mean. We are in the process of getting my daughter's first IEP (she turns three early March). I have had to tell her medical history so many times in the last few weeks, to evaluators, the district nurse.... Every time I have to explain that she wasn't exactly alive when she was born, or when I discuss how late all her milestones were. It kills me. Then I think about how far she has come, in spite of it all. It's helpful to see how healing progresses for those who have traveled farther in this journey.

  10. This is so beautiful.

    How far Max has come, how far you have come.

    Today, I cried because my 5y/o got out of the van at school drop off and walked into school by himself. Even though one of his teachers was watching him walk in, a TA would be in the hallway to see him get to his class, and his teacher would be waiting at the door for him, so he would be well-supervised, I never thought he'd be able to do that. Big change from having to be walked in.

  11. I got teary eyed as I was reading this myself. I can relate to so many of the moments you described. Thank God all of those moments are temporary, and we are not what we once were not. :)


  12. Whew...I had a lump in my throat the entire time reading and had to stop twice to wipe away the tears.

    I have those moments too - all the time.

    YAY MAX! And you :)

  13. Yeah Ellen! Awesome post.

  14. i read the last one & i almost cried. i am going through that myself right now...i just came back to work from maternity leave and my 4 month old baby boy had a stroke at birth. maternity leave was awful. i spent the entire time crying & worrying & googling "stroke" & looking for abnormalities in my newborn 24/7. and i haven't told any coworkers what happened so when they keep asking, "how's the baby?" i just smile and say "he's great!" and i'll show a photo like everything's normal but really, it kills me inside. i too feel like screaming, "my baby boy has brain damage! we have to do physical therapy day and night, and he's only a little baby!" and it doesn't help that i'm surrounded by happy pregnant coworkers.

  15. Beautiful post, and I hope Max recovers from his strep throat quickly.

    I was kind of sad reading it, though, because I also thought most of those things when my nearly five-year-old was a baby, and now she is still in the same place she was then for most of it. Her speech does continue to slowly improve, though, and I'm grateful for that...

  16. I always lurk, but that was just the best post ever. Beautiful. Thank you.

  17. Thank you. It's so important to reflect on how far we've all come, even when we still have so far to go (please G-d). Baby steps are still steps! You inspired me to start putting together my own list. So glad to have found your site recently.

  18. Ellen, you remind all of us to cherish the small steps. At age 56, Billy still has to be medicated every day for psoriasis. This morning he walked in the living room and said "Mom, I did it myself."

    This is big for both of us.

    You also remind me how hard it was to go to work and leave our special kids. In looking back, I know it enabled my other kids to grow and to help Billy grow.

    We all need a reminder - thank you!

  19. I hear you! My son has autism and while it can be hard to watch him around typical kids, my husband and I always remember how far he's come from the early days when he didn't even know who we were. One thing our kids can do well is help us to sit back and smell the roses.

  20. Ellen, this is such a beautiful, moving post. Really, lovely, lovely lovely. Thank you!

    I am sure that every parent of an SN kid reading this was, as I was, simultaneously standing with you and sharing your vision of Max while also being thrown into thoughts of their own "come so far" stories tied to familiar places.

    I suddenly remembered being in our local pet store, standing before the dog chew toy display, picking out a few items when a woman standing besides me asked what kind of dog I had and I burst into tears. For, you see, we didn't have a dog & I was buying these for my 3 year old autistic son who still put everything into his mouth and chewed HARD on all his toys. And even the most robust baby teething toys were no match for his full set of teeth and powerful jaws. Hence the dog chew toys.

    Come so far, indeed. (My husband, on the other hand, STILL chews his pencils to smithereens.)

    Wishing Max a speedy recovery!

  21. Yes, yes, yes!!! I always, morbidly, think that if anything ever happened to her, I'd have to move to Timbuktu because there are so many reminders of her in the fiber of my life and my town!!!

  22. Gratitude is a very powerful thing whenever I feel down in the dumps about the fact that I can't walk I say to myself you can hear, see and talk there are many people who can't and suddenly it's like the sun comes out from behind the clouds because I'm focused on what I can do instead of what I can't.

  23. I am very grateful that the medication has kept the seizures at bay. Maybe however I bet children with the type of CP Max has, dont have seizures. Just a thought..


Thanks for sharing!

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