Monday, April 7, 2014

What is Normal?

It's been a heck of a few weeks...

I have about seven unfinished blogs right now, because I feel like every time I get five minutes to start one I instantly get sidetracked.  Today, however, I needed to write.  It's my therapy and sometimes I just need to do it.

If you follow our journey on Ben Through It All, you will know that Mark and I have been blessed with just about the happiest baby in the world.  That little guy came out smiling!  Every single day with him was filled with jibber jabbers and smiles, up until shortly after his 6 month appointment.

It was so odd how it happened.  My little man that smiled and talked all day long just...stopped.  He stopped talking and he stopped smiling.  I didn't notice right away.  I kind of assumed, hoped, prayed that it was just a bad day or two.  That bad/off day or two turned in to a bad/off week or two and then in to a month.  This was absolutely terrifying once it set in.  I spend way too much time on the internet googling things, so this sudden back-pedaling was inducing a stream of horrible scenarios sweeping across my subconscious daily.  I immediately started kicking myself for allowing him to get his six month vaccinations, thinking all the horror stories were true and he was now autistic as well as having Down Syndrome (Rates of Autism in boys with Down Syndrome are higher than in boys without).  I started thinking that maybe he wasn't going to be as high-functioning as I had myself believing and this regression was a sign of that.  What if his hearing was going?  What if there was something else wrong that the internet hasn't prepared me for yet?  What if...what if ...what if...

The "What If" game is exhausting!  I am exhausted.  I tried so hard to ignore it, but it didn't work.  Every single time something like this happens, I find myself immediately evaluating whether or not I am making it up in my head, or if there really is a problem.  After about a month of all this, I started realizing that everyone else was noticing too.  It wasn't just me.  Ben really had stopped talking and smiling.

Ben is also not hitting milestones in other areas.  He still does not roll, nor does he put any weight on his hands at all.  Even his head still gets a little heavy for him to hold up when he's sleepy.  This becomes most apparent to me when I get him around other babies his own age.  Yes, he is supposed to be delayed due to the Down Syndrome, but Ben is slightly behind where he is supposed to be on the Down Syndrome milestone charts.

There I was.  My happy baby had stopped smiling, stopped talking, and wasn't progressing in any other areas as well.  I have a question for you all?  How do you NOT blame yourself for things like this?!  It's insane, really, that I do blame myself.  Rationally I know it's not my fault.  Rationally I know that there could be a million explanations for this.  RATIONALLY I realize that he will get there when he gets there.  However, my emotions and my rational thoughts don't play nice together.  They fight like you would not believe, and my emotions are tough.  My emotions beat the living snot out of my rational thoughts on a regular basis leaving me a complete mess on the inside.  Emotionally, I am completely blaming myself daily for any and all milestones that Ben does not hit.  I immediate feel bad that I work and cannot be home with him all day.  I blame myself for not doing more of his exercises with him while I am home.  I kick my own ass over only getting to read to him a few nights instead of every night like I want to.  I feel guilty that sometimes I just want to hold him and talk to him instead of working on his little muscles.

Ben turned 8 months old on Saturday.  About a week or so before that, he started talking again.  Oh thank you lord!  He started talking and has been talking more and more every single day.  His smiles, although they still aren't as often as they used to be, are coming back too!  We got to see his big ear-to-ear nose-to-chin grins this weekend for the first time in months!  His smiles are coming back...

My best-friend, Ramie, had a similar situation with her daughter, Addison.  It seems that babies will revert on a skill when they are working on something else or when they are going through a growth-spurt.  Well, there was definitely a growth spurt.  Ben went from still wearing 3-6 months clothes at his 6 month appointment, and was wearing a 12 month onesie on Tiger's opening day.  My little man practically doubled in size in a month!

Motherhood is quite the journey.  I am still worried for Ben.  He is still behind on a lot of things, but I really do know he will get there.  What I wonder, being that Ben is my first child, is whether or not these feelings of inadequacy are there for every mom?  Does everyone feel the way I do, or is it because Ben has Down Syndrome?  Sometimes I am glad Ben is my first child, because I really don't know any different.  However, there are other times like this where I wish I knew whether my feelings are normal or not.  Then again, it's motherhood.  Is anything ever really normal again? Also, if I am going to be honest, this is me we are talking about.  I was never really that normal to begin with.


  1. Jamie you are a wonderful Mother. I just want that out there! That being said we all doubt our abilities as a parent now and again. Mine are 10 and 13 (YIKES) I still doubt myself sometimes, even though rationally I know I am doing the best I can. I do have some pretty great kids though and I know I can take credit for that :) I am always here for you if you want to talk or vent. I hope I get to see you guys soon! LOVE YOU

    1. Heather I love you and you are one awesome mama too!! Love u and def need some time soon! xoxo

  2. Good post and great questions. I am now parenting my second child with Ds and while I did (and still do) compare my typical child to other typical children it is so different with kids with special needs. With my typical child I never had doctors and early interventionist constantly evaluating every.single.milestone. We are constantly being reminded of our children's delays. Being introduced to parenthood with a child with Ds is much different than if you first parented a child with typical needs. It's really hard work some times, but as you know, IT'S SO WORTH IT! I encourage you to try you best not to compare, just know that He's gunna do what he's gunna do when he's gunna do it. I'm glad to know he is getting back to his smily self. He is so dang adorable. #theluckyfew

    1. Hi Heather! I started following your Macy on Instagram when I was still pregnant with Benny. Thank you for her beautiful pictures!!

      Ahhh yes it is definitely worth it!! I understand (now) what you mean by "theluckyfew". It is so rewarding, but so emotionally taxing as well. Thank You for the kind words and encouragement. XOXO

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  4. We found out about our sons diagnosis when he was one years old and I remember having very similar feelings when therapy started and I didn't have time to do all the exercises. On my blog I compiled 21 things that I have learned from being a parent to a child with down syndrome and one of those things that I listed was learning that I don't need to be his therapist and that it is okay for me just to be mom. A lot of the things that you send this post really resonate with me and it was nice to read them. Sometimes it can feel like a juggling act trying to help him progress but also wanting to find the time to just play and be silly. Thank you so much for sharing and I look forward to reading more of your blog!

  5. Hi Heather! I stumbled across your blog through instagram. My third was born with down syndrome in July of last year so our guys are pretty close in age. I can relate to the worrying and scrutinizing. Whew! It does get tiring. We have been working on the thyroid with our specialist lately and a few things in your post made me think of it. Hypothyroidism shows up different in children with down syndrome and is not always obvious by the numbers. We've seen some huge leaps after starting treatment with armour, namely rolling and sitting up. This video has a lot of great information. Anyhow, I hope something there might be helpful. Feel free and email me either way (fountain books at gmail). You've got one cute little guy! Congradulations! Tiffany (roseoffred on instagram)


Would love to hear your thought, comments, advice, or emotional outbursts!

-xoxo Jamie