Thursday, January 8, 2009

What I wish I'd known when Max was a baby

Max at ten months doing his best Buddha imitation.

Recently, I got an e-mail from Jennifer over at The Pregnancy According To Jude. She said the blog and Max were inspiring to her, which I was grateful for, and she told me all the heartbreaking stuff she'd been hearing about her baby (like Max, he had a bilateral stroke). Things like Jude might not walk, Jude might not talk. Dave and I were told the same about Max. I got another e-mail from Whitney, mom to little Suze Beth Booze who had encephalitis and resulting seizures. Whitney's also been told the worst by doctors about her little girl.

I know just how they're feeling. You hear so many horrible things from doctors that you're not left with a whole lot of hope. You feel anxious about your child's future every waking moment, and all the while you're struggling to accept that the baby you expected to be like every other baby isn't. I've said it before to other moms, those first two years are the toughest. I wish I'd known back then some of the stuff I know now. And so, Jennifer, Whitney and all the other wonderful moms I have met through this blog, this post is for you. These are the things I only realized in hindsight. I hope they help you, in some way.

• Put away the What To Expect book you may have bought, cancel the "Your Baby This Month" e-mails from Babycenter. Constantly comparing your child to typically-developing kids will only make you despair. Your child will develop at his own pace. As long as he keeps improving, that is the key thing.
• Don't attempt to diagnose your child yourself. Seizures were my biggest fear after Max got out of the hospital. I'd read up obsessively on them, and then convince myself that Max was having one kind or other. Max's neurologist finally set me straight.
• You need to have at least one doctor, ideally more, for your child who besides being wise is also a kind, rational, reasonably optimistic human being. And who also understands what you're going through. Try with all your might to find this doctor.
• If you need therapy, get it. I did. If you need to cry, do it. I did. In the car when I drove Max to therapy appointments, in the shower, as I lay in bed at night. You've been through a trauma. You have to get the grief out of your system.
• Accept help. I am a pretty independent person who likes to do things myself. But after Max was born, and I was feeling overwhelmed by all the doctor and therapy appointments while adjusting to having a baby, I let my sister do the housework. I let my friends look up information for me. I let Dave spoon-feed me dinner as I breastfed Max. They got me through that first year.
• Try hard, try so very hard, to enjoy your child. Look at how delicious Max was. I knew it, but I didn't enjoy him as thoroughly as I could have because I was so consumed with fear about what he would "be" like. All of you have beautiful children. Stop peering so hard into their future, and enjoy them in the here and now.



  1. A beautiful post Ellen! And I agree with every word.

    I'd add to that I wish I knew that my son would be so determined, resourceful and happy.

    And I love that pic of Max! He was one cute baby!

  2. Aw thanks Ellen! I loved the post, and I am learning from you.

  3. This is fabulous! Thanks for writing this out. I will keep this in my school bag, I have a feeling our new student's parents might need it. Sadly, she "started out" neurotypical and has regressed (in a nutshell, its really more complicated than that, but even I don't know all the details). Hopefully her parents are the kind of wonderful parents who accept the diagnosis and work on it rather than those who deny there's even a problem.

    Thanks again!! And thanks for the advice on my photo, I'll try to think up something that applies more, you're totally right!

  4. What a great post!

    I would also add that, even as a healthcare professional, I think the doctors give you the worst case scenario. Anything above & beyond,that is the outcome for your child is to make you feel grateful.

    Also, you do what works best for your family. Be realistic, but never stop being an advocate & a champion for your child.

  5. I couldn't have said it better myself! All your points were right on. Especially the one about "What to Expect the First Year." I threw mine out. Trying to mentally keep Avery "caught up" to her peers was horribly frustrating and stressful (and pointless!).

    I also think it's important to remember to take every bit of diagnosis with a grain of salt. I mean, for almost a year we had one doctor tell us everything was fine. Then one doctor tell us the worst. Neither of them were right. Find a good balance.

    Lastly, let them label your child if it will get them what they need. We ever want Avery labeled, but if having it in her file that she's got CP or something helps get her additional therapies, by all means do it! If the system's gonna work you, work them right back. :)

  6. "ever" should be "never" oops!

  7. very well said!! I love reading about you and Max. Look at those belly rolls? Why is it that as we get older, people frown upon those cute rolls we had as babies and I just decided to keep mine?!?!

    In answer to your question, I made Daniel's crown. I custom make and sell them on Ebay to raise money for Daniel's ABR therapy.

  8. Great advice!!!

    The only thing I would add is...Pray, Pray, Pray and let God lift you up.

    Thanks for sharing this. I love your blog and need to get it added to my blogroll.

  9. Ellen, thank for comining by!
    I still have to remind myself to not freak out about the stuff that might be. Like you, I follow Schuyler and I just kept watching Piper trying to pick up something that wasn't there. Sure, it's a possibility, but I can't let these things rule the life we have. Also, I have to remember not to baby her. By that I mean doing things I know she can do, and lately remembering she needs to be treated like the other kids were at this age (i.e. punishments), but not compared to them.

  10. There is so much wisdom here, I don't have anything to add. I cannot account for all the dire predictions from physicians. I did a post on prognosis and 'prophecy' last year. I can find it easier - will if you want.

    Seems like whenever I try to get mothers of older children together with mothers of younger children - there is a reluctance to share. Concern over letting them see the realities of the future - while not quite as dire as the physicians predicted, still not in the hopes-and-dreams realm for many.

    The blogosphere has truly brought together many in a blessed way. I am so grateful to participate in this community. Barbara

  11. Wonderful post, and so wise! Having just passed the 2nd birthday, I feel like a fog has been lifted. She's also hit some milestones lately (sitting up, riding in the cart, forward facing the car seat, taking a small bottle) and somehow I just feel like we've accomplished a lot. My biggest regret remains missing the infancy. The whole first year is just a blur of tears and fears. We didn't have doom and gloom docs, we mostly had a bunch who just didn't know, but I do remember the early intervention eval at 5 months was the FIRST time anyone told me good things, what she was doing well. That still shocks me. And saddens me. I cried through that eval because someone finally said look at this, and she's doing that! I look back at her baby pictures and just cry and cry because I wish I could rewind and give myself some peace.
    My other big piece of advice would be to surround yourself with positive people. You will most likely have to eliminate some people from your life. A friend. Sometimes even a family member. Because they just can't accept your kid, or you get tired of them ignoring her, or saying something rude or ignorant. Or they just stop calling, emailing, being there for you. Because it's just too much for some people. They don't know what to say, not realizing they don't need to say anything, just listen. It sucks and it hurts like hell, but you're really better off surrounding yourself with people who will fully support you and your child.

  12. This post and all the comments are right on! Thanks for your words of wisdom.

  13. great thoughts, all, in the post and in the comments. thanks for opening up this discussion...i have a post up about it too, and a link to you here.


  14. Hiya everyone! My daughter Chloe is just about seven years old and has Ring22. I also loved your post, but for us with our daughter, I really think it was the years from when Chloe was about 2 to when she was about 5 years old that were the hardest. She stopped sleeping at night, she liked to undress - including taking off her diapers and smearing poo everywhere, she would eat everything in sight, including such things as carpet, wood, pillows, etc. In a lot of ways it was a really sad time - and on top of all of that, she was in the hospital every other week for a chest infection or an ear infection. Life was hard.

    After Chloe turned five though, things improved drastically. I didn't even realize how much until my youngest - who was about six months at the time - would go around and pick up lint off the floor and eat it! LOL and I was like, OMG, it's not Chloe doing it this time, its Alex!

    I should also say that despite having days that were so hard I would just break down and cry and not really know how I was going to go on, Chloe has always been a light in my life. She is always so happy, so cheerful and so resilient! She came back from all of her infections and such with an even stronger will to get the things done that she wanted to get done. And she still has that amazingly powerful spirit.

    So, if I were to give advice to anyone with smaller children, it would be to hold onto the spirit of your child through any rough times. I sincerely hope that nobody has to struggle as much as we did when Chloe was younger, but the reality is that many people will have similar, or even tougher, circumstances to deal with. My thought to myself when I felt like I just couldn't keep doing the things I was doing, was that Chloe was so small and yet she was so determined. How could I give her any less in return?

    *big hugs* to all and good luck with your kids in the years to come!


  15. Ellen--
    This was a fantastic post. I'm at the point where I still do worry about the future, the what if's, but I totally am hearing what you are saying. Leah is only going to be little for so long, I need to soak up everything about her as a baby. Thanks, sometimes just reading something can get you back down to reality.

  16. Thanks, everyone. Such great comments, I always feel so heartened by them. Max is still young, only 6, and I'm happy that I am able to enjoy him and not worry myself sick about his future. As your child gets older, there's progress—but also, on your part, acceptance. THAT'S been a key thing for me.

  17. I'll add my thanks for a wonderful post - I am going to bookmark this to share with "new" parents I meet.

    Although my son wasn't diagnosed with autism until he was almost three, everything you said still applies to that first year after the diagnosis, and even beyond.

  18. Great post, Ellen. As I've mentioned before, my prediciton was death, so Charlie is living breathing proof that doctors aren't clairvoyant.

    I do wish that I'd enjoyed baby Charlie a bit more--I felt like we were either putting out medical fires or sitting there staring at him trying to figure out how messed up he'd be. Things are so much easier now.

    I think if I were to add anything I'd say. . . the worst you can imagine won't be that bad. I used to think seizures or not walking or blindness would be the worst thing ever. Now I know that I will love Charlie regardless. I didn't think that was possible in the beginning--my fear was so great. You will love your child, though.

  19. That is such good advice to give to her.

  20. Ellen~

    Thank you so very much for such wonderful and beautifully articulated insight!

    Your blog is wonderul!

    Jessica Spear

  21. Such great advice, for me grief was the hardest I just never allowed myself to go through it, thought it would be selfish of me, I now know differently but wish I had know that then. Great post!

  22. Thank you Ellen..that was an excellent post. I am so glad we have met via blog and that you share your feelings about what you went/are going through. It is encouraging to hear what others went through and to know your not the only one. Max and Sabrina are adorable and I love following your blog. What a cutie Max is in that picture :)

  23. Beautifully said! I agree! Enjoy each and every moment regardless of where they are at.

    We didn't know about our baby having CP until he was 9 mos (now 22 mos). We have been fortunate to have good doctors (we feel like) and lots of support. Don't get me wrong, I've had plenty of tearful nights while trying to survive on 3-4 hrs of sleep, but have always felt blessed with each step along the way (ie. him being brought back to life, coming home from hospital, etc).

  24. Thanks for sharing. I just now got to read your post. Max's rollies are just adorable!

    I've been a worry wart since the moment I found out Caleigh had gastroschisis at 18 weeks of pregnancy.

    I have to tell myself to chill and savor the moment quite frequently.

  25. This is a beautiful post. And full of so much wisdom. You have such a wonderful way of looking at things.


  26. WOW! I so wish that I had read this post 5 years ago. I look back now at my daughters photos and it's like I'm peering in on someone elses life....I don't remember being there, and that makes me so so sad. However, I try to enjoy today and live each day the best way that I can.

    Max is so handsome!

  27. What a great post! Sorry I didn't get a chance to reply last week! Great advice here. What I wish I would have known: that things really will be ok, that life goes on, that you can still be a family and do all the same things "typical" families do, that its ok to have good and bad days and to realize that yes, some days you will cry - but it's ok to feel whatever you're feeling - allow yourself to just be.

  28. FAB post! I would add to know that you WILL go through the 7 stages of grief and that it's okay. Each one of us stays at the different stages for her own time until she can make it through - and again, it's okay! I cried in my closet a lot, and still do, but you find out really quick who you can count on and who is fluff in your life. Count that as a blessing too. I say NO to adults all the time now and it's refreshing! Outsiders don't understand and say stupid things, so just nod your head and walk away knowing you have a support network here.

  29. Ellen, Again I find our stories so similar even if the diagnoses are different for our kids. I laughed, as all us PICU/NICU moms are wont to do, when I read the docs describe Max's stroke as a "significant event." Henry once had a heart attack in the OR which the docs tried to spin for me as a "cardiac event." It wasn't an "event" like a regatta or gala -- it was a heart attack. I was annoyed with the docs.

    At my blog I also wrote a long section on what I wished I had known about congenital heart defects when Henry was just a baby. I wonder at the current state of peds if we use heroic means to keep these children alive but don't directly and immediately provide families with the resources and info they need to actually care for the child.

    And yes...what to say to all those family and friends who have no idea what to say to you? Henry was in the PICU so long that we had a lot of visitors and they'd see my kid in such dire straits, hooked up to everything, and I knew the unvoiced questions between us were 1) Is Henry going to survive? and 2) What are you going to do?

    For such a long time, I didn't have answers for either.

    Thank you for sharing the deeply personal and wrenching.

    Erin @

  30. I just wanted to say thank you for this post. While I wish I had read it last year I also know that I was not in a place to hear it yet.

  31. I compare my son to my daughter. My non SB child was my first- I had a girl the first time round. I heard the same sort of things that my son would not walk, talk etc.


Thanks for sharing!

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