Slow progress – but there are zebras to laugh at

Look! The third post this week! I know! “But Joe, you didn’t write like… forever, and now you are writing all the time.” Yeah, yeah, I know that too. It might not last, I won’t lie, but I told myself I wanted to make an effort to write more and you lucky(?) folks are the beneficiaries(?) of that.

And why haven’t I been writing? Well, the blog is called “All About Benjamin” and to be honest, over the last few months telling you all about Benjamin might have been a bit boring for you and a bit depressing for me. No, nothing bad has been happening with him. Outside of a couple of colds, Ben has been doing well. But his developmental progress has been so slow there is not much to tell you. I get worried about it, and a little sad and it didn’t sound like something fun to write about (though here we are).

When we first started the blog we used it to share the day-to-day and sometimes hour-to-hour updates and a bit of a pressure valve where we could write all the scary medical stuff down and give ourselves a little distance from it. But mostly it has been a place to share Ben’s successes (and cute photos). Maybe it’s ok not to feel like we always need to be cheerleaders with good news and talk about other stuff too (but of course still post cute photos of Ben).

So first things – on the development side, here are the facts… Ben is still not crawling really, or walking without holding on – but he can pull himself up onto things and cruise like a champ. Ben doesn’t have any words yet, but babbles and laughs (a lot). Ben can’t handle food any more solid than a puree (and some days that is too much for him too) but he is so much better with milk and can drink it out of sippy cups. Ben thinks zebras are very funny.


Ok I know even here, when I said I wouldn’t feel the need to always cheerlead, I am putting happy spins on everything. There is obviously progress and Ben is an amazing little guy. I’m just frustrated. I want to see Ben doing the things the other kids his age are  doing. I want to know that he can talk and walk rather than just hoping he will.

And before you say it – I know, I know I know. I know we are super lucky to even be where we are today. I know Ben has a lot of challenges to overcome and that he’s doing great. It won’t stop me from wanting more though…


17 thoughts on “Slow progress – but there are zebras to laugh at

  1. Warm. fuzzy. hugs…. and a reminder parenthood is a lesson in humility…. but mostly just really fuzzy hugs and hopes that you know there are so many of us rooting for him, and you all on a day to day basis. People you don’t even know that we have all told about Ben because we love him.

  2. I think we all pretty much know how much you and Amy know how lucky it is that Ben has gone and prove the doctors wrong in his first stages of life and pretty sure know how much he means to you, and so with that YES you have a right to feel exactly what you feel, EVERY parent wants nothing BUT the BEST for their child’s future. I don’t think any parent really wants to hear about anything that may be difficult for their child and that is what makes you and Amy great parents; loving your son for who he is and wanting more if could. I really think that Ben knows how much you guys are pulling for/with him and who knows maybe he’ll surprise ya one day and walk right into your arms w/o any help. Who knows what Ben may be doing in another year! 😉 I’m learning still that we can be BOTH happy for how our children are and sad when they haven’t reached the “expected” milestone and though for some it may be harder than most, as long as we do our part we’re helping our child and from what I have read and from what pictures and videos we see…..ALL I see a VERY Happy Ben because he has one of the best folks a kid could have!

  3. A wise woman once said (and thankfully you married her, Joe!) “Benjamin will do it in Ben’s own time”! Ben has come such a long way and your love and devotion has been the strength that has brought him this far. Ben is just giving us a lesson in patience. Love you guys!

  4. Just because you’ve been “lucky” doesn’t mean you can’t also be frustrated it’s all part of the spectrum. *hugs*

  5. I could have written this post many times about our first son. He took a long, long time to crawl and then a long, long, long time to walk. Building the strength to stand and sit is a big deal. The entire time he was so happy, agreeable and smiley, just like your Ben. So we constantly had to remind ourselves how lucky we were/are. When he was Ben’s age he wasn’t talking either. From time to time we thought he was saying words, but then he’d go for great periods saying nothing. He’s now 4 and still not up to speed, but he is starting to make progress, slow progress. And I see how hard he tries to talk and work with his therapist. It’s a wonderful and sometimes painful thing to watch. Ben will get there. As far as the crawling, I know many full term kids who never crawled. Sounds like he is not far from walking.

    The fact is, these little guys were pushed into the world without warning and like us, they weren’t ready, so of course they’ll need more time. In the meantime, I think getting discouraged is actually a good thing, it means you’re expecting more and willing to work for it. And he feels your love, which is all that matters.

    • Thanks Mia. I think part of it is also hard because we’re (in most ways thankfully) the only people we know in our situation… it’s comforting to hear from people who have been in a similar place and come out on the other side!

  6. If you weren’t frustrated, I’d think you were lying. He’s amazing and y’all are lucky, but that doesn’t mean it’s not super frustrating and that it doesn’t hurt. Anyone that thinks that you aren’t thankful and are being whiny — they suck. Y’all are model parents for others and part of that is your honesty. We love you and Ben. No boy with those dimples is not going to leave his mark on the world.

  7. I always tell people that if I were Benjamin, I would want both of you for my parents. You are the most amazing parents – getting him all the therapy he could possible need, not overprotecting him, being so patient, always teaching and encouraging him and the most important thing – loving him unconditionally. He’s such a happy little boy . I know his slow progress is frustrating and sad for you but he will do it all eventually. I know he will. He’s a smart little guy and I love, love, love having Ben for my grandson. I love both of you so much too. Hang in there. The best is yet to come!

  8. You guys are lucky, but so is Ben to have you both as parents. It’s been a long, long two years for you. He’s such a great little guy, and we are cheering for his every victory, however small, but it would be impossible for you not to worry, and not to feel frustration and sadness. We love you all, and before we know it he’ll be walking and running (because crawling is totally overrated).

  9. You perfectly described what we are going through with our son, a 25 weeker, as well. He just turned one and as much as I want to celebrate all that he has achieved, sometimes all i want to do is rant about all that he should be doing, but isnt. I go through a range of emotions from being extremely grateful for everything (including our wonderful therapists) to wanting to yell at the same therapists for constantly pointing out all the things that are delayed with our son. But I keep one leg forward everyday and keep moving, hoping that he will eventually get there. Slowly and at his own pace, but one day.
    I wish Benjamin and your family all the best. Look forward to reading more posts.

    Best wishes from another NYC preemie mom.

    • Thanks for the note Anu. While of course we want every baby to be meeting milestones, it is comforting to know we aren’t alone. One day we will laugh at how we stressed out about the little things when they are running around and talking up storms.

  10. As parents, no matter what is going on with our kids, there are three things that I find to be universally true, #1 we will worry about pretty much every thing. #2 we never want their lives to be any harder than they need to be, #3 at the end of the day, no matter what, we will do whatever we can to make things better for them, which may just include putting a positive spin on things when they don’t feel so positive.

    My Jack, looks like your average 2 year old. He is hilarious and he charms pretty much everyone he meets! What most people don’t really realize is that he has a fairly significant speech delay, which is beginning to look like it’s more involved than we initially thought. As his SLP says, “Jack is a puzzle and is going to keep me on my toes” He’s going to make her work her tail off to help him out. And while I feel strange comparing this to the wild things that you all have been through, and how awesome Ben is, and everything he has accomplished, I just want to say that I know that feeling you have, where you just want to know that your kid is going to be ok. And not just “make it through the day” ok, but “on track to have a great life” ok, and “no one makes fun of him for not being able to talk” ok. So while I hope you know that you are inspiring and officially certified in the ranks of top level parents, I hope you also know it’s ok to not feel positive 100% of the time, and to be just straight up pissed off that your child’s life, while it will be wonderful, may not be as easy as you dreamed it would be.

    Pulling for you guys!

    • Thank you Tara – it is nice to be reminded that even if our situation isn’t normal, our feelings are. Just made a visit to your site too and your Jack seems like a charming little guy!

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