Thursday, December 10, 2009

A word to new moms of kids with special needs



Today is a day to celebrate because my beautiful boy is seven years old. It's a day to celebrate because seven years ago, doctors were not sure Max would survive the bilateral stroke. It's a day to celebrate because Max continues to do so much better than those gloom-and-doom doctors thought he would. It's a day to celebrate how far I've come.

I'm feeling sentimental that Max is getting to be a big boy, but I'm not at all sad about this day, or having flashbacks to the two weeks we spent in the NICU. Yes, things still trigger memories—you've read about my sobfests, you've shared your own. But in general, time has muted the pain and devastation I experienced during the first year of Max's life.

I get e-mails now and then from moms of babies who are at risk for problems, and I can feel their agony streaming through my computer screen. I know exactly how you feel, if you are reading this. I do. And so, in honor of Max's birthday, I wanted to reach out to you.

I know that you are grieving. Why did this happen to my child? Whywhywhywhywhwy? That despair will not be there forever. It dissolves as time goes on and gets replaced by acceptance.

I know that you're desperate for answers. You want to know if things won't be so bad. You want to know what limitations your child might have. You ask the doctors. You get their e-mails and send messages. You mercilessly query moms in similar situations. You stare at other kids in the therapists' and doctors' offices and compare them to your child. You. Just. Want. To. Know. So did I. But I can tell you now that I am glad I did not have answers back then. Because if a doctor would have told me when Max was very young that he wouldn't be able to talk fluently, and that he'd have cognitive impairment and trouble using his hands, I would have been absolutely despondent. And what good would that have done Max? I needed to have hope, for both our sakes. That hope pushed me to do more for Max, and it kept my spirits up even when his progress was slow.

I know that you're worried sick. More so than you let anyone know. More so than perhaps your husband, seemingly. You lie awake in bed at night and fret. You assess your child's every move and fear you're seeing something wrong. At times, your worries veer into the irrational—you spot a handicapped adult somewhere and wonder if that's what the future holds for your child. There is nothing I can say to make the worry go away, but I know that what helped me was learning to keep my eyes on what Max was doing on any given day—not what he could be doing. The next time your mind spirals off into a freakout, look at your child and think about the good stuff he did on that day, or the day before. Also, toss the development books. Also, dress him or her up in ridiculously adorable outfits and take lots of pictures. Your child is not the least bit cuteness impaired. Savor that cuteness.

I know that you're wistful. Or maybe even jealous. Of the other kids and moms in your life, the ones who seem so happy-go-lucky and carefree. Maybe you wonder why you're the one out of all your friends who ended up with a child who has problems. Then there are the kids you see at birthday parties, The Children Who Are Developing On Schedule. For a while, I quit going to birthday bashes for friends' kids, because it was a compare-a-thon for me; sometimes, I made my husband go. I'm not saying isolate yourself. I'm saying that if it's possible to control something that's making you feel lousy, control it. And know that all those feelings are normal, and you're not a bad person for feeling them. Not in the least.

I know that you feel guilty. Did you do something wrong during your pregnancy to cause what happened? You may even feel guilty about your own despair. Back then, I'd cry and mope around the house, and then I'd feel like crap because I had a sweet little baby and wasn't he worth celebrating? The passage of time is the best anti-guilt antidote, but it also helps to keep a journal or start a blog. Writing things out gives you perspective. Ahem. So does seeing a shrink. I did. There is no shame in that. You've been through a trauma.

I know that you may not be taking care of yourself. I was so consumed by helping Max, not to mention mentally and spiritually sluggish, that some days it was all I could do to shower. Hell, I couldn't even picture ever being happy again. But, of course, I am happy again. And I've realized that if you don't take care of yourself, you can't be the best possible mom for your child. So grab some private time, and make plans do the things you enjoy (at minimum, shower and find something else to wear besides sweats). Your kid will be fine without you for a few hours. You need the me-time, more so than other moms. And boy, do you deserve it.

So, yes, I know what you're going through. I feel for you, because seven years ago, I was you. And I know that you have the power in your hands and arms and heart to help your child come along. And I know that you have hope, and there is no limit on how much hoping you can do. And I know that you have a beautiful child worth celebrating.

Just like my Max.

Ellen

52 comments:

  1. Happy Birthday Max!

    Great post! I went through a lot of that too in the beginning and you are right time does help and hope is needed so that you can keep working hard to help your child.

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  2. Beautifully said, Ellen. I know this post will help many new moms (and some older ones, too).

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  3. Perfect post, Ellen! I know just the mom to send the link to!
    Happy Birthday, Max! You are amazing!

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  4. So incredible. Thank you for this beautiful post. Happy 7th, Max!

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  5. OK, girl--when are you gonna write that BOOK? You've just written the "teaser" for it in that wonderful post! What publisher could say no?

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  6. Beautiful post. You should print it out and hand it to the NICU to post or give out.

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  7. Happy Happy Birthday to Max!

    beautifully written and so very true, wish I had read all that back in 2007 and such a gift for new moms that find themselves in a less than ideal situation

    Enjoy the day!

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  8. Holy Chunk-a-licious! What a pic! Happy Birthday Max!

    I remember your heartache Ellen...all too well. You actually helped me get through mine because I so desperately wanted to help you through yours. I can't believe our boys are 7...

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  9. Yet another amazing post, Ellen. This is one that should be copied and handed out to every parent in every NICU.
    Have a very happy birthday, Max! I'm wearing purple today, just for you.

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  10. Beautiful!

    It's unfortunate that this kind of firsthand advice isn't more readily available for new parents.

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  11. Incredible post! exactly what i have felt and still feel sometimes. Happy birthday to your gorgeous Max! he is a lucky kid!

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  12. Wow! Well said. You definitely hit the nail on the head with the many emotions new parents of children with special needs experience...I am one of them! My little guy is almost 2. I would like to say that I've come a long way in these past 2 years. But I know I have more growing and learning to do. Love reading your blog. Happy 7th bday to Max!

    Taryn Skees
    www.theskeesfamily.com

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  13. Happy birthday Max!!
    This is a great post...very beautifully said! :)

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  14. Happy Happy Happy Birthday to a super duper 7-year old!!!

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  15. Excellent post, excellent advice. No truer words were ever written. Happy Birthday Max!!

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  16. Happy, happy birthday, Max!

    Ellen -- thank you so much for this beautiful post. It made me have a sobfest of my own. I've bookmarked it for times when I'm down.

    None of my friends or family members have a child with special needs, and it so helps to hear from other moms who gets it.

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  17. HAPPY BIRTHDAY, MAX! Ellen, I couldn't have said it better, myself. These things are all true. Time does heal...to an extent. I love this post. Ellen, you have inpsired me, daily in your blog. Thnks

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  18. This truly is so special, Ellen. Happy Birthday to Max. I am so grateful for both of your influences in my life. You truly inspire and touch me more than you know! I will LOVE to share this on kidz. I will share it tomorrow.

    Thank you again. Love ya!

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  19. Happy Birthday Max.

    Every one of your points rang so true with me. I wish you'd written this 2 years ago right after I got Maddy's diagnosis. Hopefully you've made some new mom's life a little easier. Thanks for this.

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  20. Great post! Very well written. I think I cried through the whole thing. Just got back from a 23 hour EEG with my daughter - I am sleep-deprived and a little shell-shocked! So I needed to read this again. My daughter is two and I have come a ways in those 2 years, but I know I have some things to work through still. It is a work in progress. I so appreciate your willingness to speak these words to new moms. It is needed!

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  21. HAPPY BIRTHDAY, MAX! And may blessings continue to abound for you, Ellen.

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  22. Happy birthday Max! What a beautiful post this is.

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  23. Happy Birthday Max! My boy's birthday is tomorrow.

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  24. Happy Birthday Max. Great posting, I remember it so well though I still haven't figured out the looking after myself bit (early days though). I know someone who badly needs to see thing right now so will send it along. Thanks:) Jen

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  25. Happy Birthday Max!!! I wish I could have read your post when Gabriella was born, very reassuring. I agree with the poster who mentioned providing your insights to NICU's. It would have kept me grounded in the beginning.

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  26. Happy Birthday Max!!!!

    Thank you for writing this. I have been feeling blue this week and it's good to hear there are people who "get it."

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  27. Happy birthday to your adorable Max. Beautiful post it will reach the heart of many. Thank you for stopping by today it was nice to meet you :)

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  28. Happy Birthday to your beautiful Max!
    Thank you Ellen, for your heartfelt post. I read it this morning and cried on and off all day. Then I tried to read it to my husband but couldn't get past the intro paragraph. He read it himself, and he also felt very emotional (he doesn't really cry, ever- haha). You are an amazingly strong woman. I really admire you. Thank you for sharing your deepest thoughts.

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  29. Happy Birthday to your inspiring, amazing Max!

    And thanks for sharing your insightful thoughts, Ellen. I'm not so much a "new" mom anymore, but your words ring so true for me even now, two plus years since Elijah was born. I've come a long way, yes, and your words help more than you probably know.

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  30. happy b day max I saw u b day video and it looked like u had fun

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  31. Thanks so much, everyone. I'm touched. I started this blog to help myself and to help other moms, too. It's wonderful to hear that Max and I are inspiring you. That's my boy! And kudos to YOU, because you inspire me in return.

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  32. I am only 8 months out since discovering the cerebral palsy and sixteen months out since my daughte was born witha freaky metabolic disorder that puts her at risk of death, coma, or brain injury just for lack of eating. I am still that new mom. I am happy, but I am still that new mom. I come to this blog for a lift just like this. Ellen, you are one awesome lady. Thank you!

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  33. Wow! That was an amazing post! Happy (belated) birthday to Max!

    That post should be required reading! In fact I will link to it in our resources section of our site!

    Thanks!

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  34. Happy Belated Birthday Max!
    Very beautifully written Ellen!

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  35. Happy happy birthday to Max!
    Such a great post Ellen! For some reason your post made me think of a board book we have -- an adaptation of "Going on a Bear Hunt".

    You can't go over it, you can't go under it, you gotta go through it.

    Grief is like that I suppose.

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  36. Happy Belated Birthday, Max. And, yes, I loved the post, too.

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  37. Hi Ellen! Thank you so much for sharing these tips for new moms. I'm a college student with CP and I have a blog in which I chronicle my life's journey along with providing resources for individuals with special needs and those who love and care for them. I've been following Max's journey for awhile, and it has been a pleasure. I hope you'll come by and see what's up and see if you can find anything that may help you and let me know what you think! Look forward to following more of your exciting adventure with Max!

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  38. Happy birthday Max!

    Thanks Ellen! I agree with you on all of this.

    My husband and I were recently talking about the fact that we came very close to realizing the stroke while I was still pregnant. Through a couple of missed items, it was not detected for 3 months. I am forever grateful for that delay & early diagnosis. If someone had told me during pregnancy that he would have CP or that we would be taking him to up to 7 therapy appointments a week, I would have cried. Instead I was able to hold my precious little boy and see all the things he could do instead of focusing on what we would need to do.

    Thanks for the thought provoking post!

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  39. This is especially poignant for me as my son Brandon, just celebrated his 8th birthday. While he's not the son who had a stroke prenatally, he does have special needs (moderate autism).

    More beautiful words never written! Thanks for sharing.

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  40. happy belated birthday to Max! wonderful post too.

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  41. So well said...Thank you. My son is a little over two and I totally relate to this. The complexity of it all!

    Thank you.

    Happy Belated Birthday Max!

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  42. So well said...Thank you. My son is a little over two and I totally relate to this. The complexity of it all!

    Happy Belated Birthday Max!

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  43. I read this and could relate to it immediately, even though I never got the chance to touch, hold and love my little special daughter who died shortly before the birth of her twin brother due to her Triploidie. The grief, the comparing, the sweat pants have all been part of my life with my son, so torn between grief and joy....

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  44. ok that made me cry!! i too have had the sobfest, mine lasted over 2 years and i can say i have only just exited taht aprt of my life! today i have been trying to decide wether to delete a blogpost i posted a while ago, written only days after tillys diagnosis! i read it back and cant believe how far from that place i have come and it reads so harsh and sad! i think i have decided to leave it after reading this. i am loving your blog and know that you have struck a chord with another mummy in the uk xxxxx

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  45. Love this! Also, love the advice on taking pictures and that our kids aren't "cuteness impaired." I don't know why, but for some reason I wondered if I should even bother taking pictures in the beginning — would he even be mentally capable of appreciating them, I wondered? Now, I don't know what I was thinking. Of course he deserves to be celebrated. Of course he does. Every child does.

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  46. I thank God that I came across your post! I'm officially hooked to your blog and your precious boy Max. Right now I'm 7 months pregnant with Zachary. His hands and feet are in an unusual position, and the doctors will not have a diagnosis until our baby is born (it may be a muscular problem but they don't know yet). I just pray, sob (love the sobfest term) and Google day and night trying to find some hope, and this post explains exactly how new moms feel, thank you for finding the right words when we feel that none understands what we're going trough. I still pray for a miracle, but it gives me strenght knowing that no matter what my boy will be cute and celebrated because he is worth it. I just can't thank you enough. God bless you and beautiful family!

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  47. I'm the grandmother of a young child with special needs and your blog has been a tremendous inspiration for me. As a subscriber, I look forward to every post with anticipation. Your love for Max comes through in every words you write and it reminds me of our love for our precious grandchild. I can't even begin to tell you what a wonderful gift your blog is. This birthday post was perfect--just perfect. Thank you!

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  48. Thank you so very much. I am at a point where I really needed some inspiration and your blog is exactly what I needed...its like you are living at my home..you nailed it. I will be forever grateful that you were willing to share.

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  49. Thank you for your blog. I've just discovered it after trying to research how to help my little boy with special needs. You have explained my feelings perfectly, especially the comparing and the feelings of guilt. I know I have a long journey ahead of me and blogs like yours a huge help. You provide hope and sanity during these stressful moments. I wish you and your son all the happiness in the world. Thank you

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  50. Thank you. Every point you made expressed how I feel.

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Thanks for sharing!



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