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Wednesday, May 8, 2013

Thoughts on Differences

For awhile I have been thinking about the differences between my children.  I thought perhaps one day I would write a book on the funny and frustrating differences between special needs and "normal" kids.  For now, I think I'll just share a few I have noticed the most.  Carter is about 3 1/2 years old and has 1p36 deletion syndrome.  Sierra is 1 years old and a typically developing child (better word than normal).  The first difference I've noticed is that Carter loves the vacuum or when I sweep- as a baby he hardly even startled at the noise.  He loves to follow me clean and touch the vacuum or broom and laughs.  On the other hand, Sierra screams and cries and is terrified of it.  That was a new one for me- now I vacuum when daddy is home or Sierra is asleep.  The second difference is their overall health- Carter can't even go swimming without getting sick and us all too.  He isn't swallowing water, but the germs and the coldness must attack his weak immune system.  He was relatively healthy as a baby, but has now had RSV, pneumonia several times, stomach bugs and it seems every possible cold there is out there.  Sierra is very healthy and most of the sicknesses seem to have passed her by or affected her very little.

The third and most obvious difference is that Carter doesn't eat by mouth and hates having his teeth brushed.  Sierra on the other hand loves to eat, everything, all the time!  And she is okay with us brushing her teeth.  Of course, Carter did eat orally until he was about 1 1/2 years old, it's hard to remember that though.  Fourth is also obvious, but Carter is still like a baby.  He isn't able to crawl, walk, run etc.  I was worried when having another child that I would have twins, and in ways it has been like that.  I still have to carry both to the car to buckle them in their car seats and get them out, I have to change both their diapers, feed them both, etc.  Sierra is walking now but still loves being held and carried. 

Fifth difference is how their personalities are.  I know this could be just the fact that they are different sexes, but also I think their genetic makeup has a lot to do with it as well.  Carter was and still is a very easygoing, sweet and affectionate boy.  He was an easy baby (other than the NICU experience) and wasn't very attached to me.  He was OK when I left the room or did my own thing, he didn't need a lot of attention or to be held a lot.  Once his seizures began and then stopped that also affected his personality.  He is more aware when I leave the room, but he doesn't cry.  He follows me or just plays with his toys.  He is more social and very affectionate with people, giving hugs often.  Carter just overall has a very patient, tender and loving spirit about him.  He wasn't always easy (no kid is) but overall a very easy child.  He plays with himself for long periods of time.  On the other hand, my Sierra...oh boy, does she tire me out.  She is very active, social, outgoing, feisty, spirited, smart, busy...the list goes on and on.  She is emotionally needy, following me everywhere and crying when I leave the room.  She needs a lot more attention and physical touch. 

A lot of Carter's doctors have told me that parents with two children like me, often say having the second child was like having their first.  The experience was so new and different- and harder in many ways.  When it comes to medical stuff, Carter is harder for sure.  But feeding-wise and overall daily stuff, Carter is so easy.  In many ways, having Sierra has been like having my 1st child.  I have a lot of questions and I feel more pressure in raising her.  She soaks everything up like a sponge so I have to be careful what I say and do, whereas I tend to be more lax around Carter.  I am sure he understands a lot more than I know, but since I'm not sure I am not guarded around him.  I am sure some parents can relate to this out there.  I tell people my "normal" child is much harder than my precious 1p36 angel.

I have been wanting to also write some kind of poem or lyric about Carter and Sierra but I am not that talented.  Everyday of motherhood brings many challenges and trials for me.  I do have moments of joy that make my heart want to burst.  I think having Sierra has given us tremendous satisfaction and more gratitude, because when she does something new, it is just incredible to us.  I have watched her roll over, crawl, sit up, clap her hands, high five us, walk, and play peek a boo with tears in my eyes and a bursting heart of joy.  At the same time, I always look over to where Carter is and feel a little twinge of sadness.  He is so sweet and I want so badly for him to do all those things as well.  I believe he will, it will just take longer.  What many parents take for granted, I have been able to have that gratitude and joy intensified because what seems so easy for Sierra and happens in just a day or days, has taken or will take Carter so much longer.  Months.  Years.  His therapists told me it would be incredible for me to see a "normal" child do all those things.  And it has been.  I hope I never take it for granted either.  Anyway, just a few ramblings from me today.  Thanks for reading and always feel free to share your thoughts.


  1. Wonderful thoughts and feelings! Bless those little children of yours!

  2. The scared of the vacuum is 100 percent a phase. It comes and goes. Maybe having two "babies" is a lot easier for you VS. two crazy walkers. But then again, the older they get--the more they can do for themselves, which does make it easier. I think Sierra's attatchment phase, is just that...a phase. She'll grow out of it. It's good you can feel that thought...b/c of Carter you haven't ever been able to. I'd embrace it rather than feeling like it could be a bad thing.

  3. @Brooke I don't think I could say Carter is easier than two walking kids. I would give anything to have Carter be able to walk. I will have him his entire life at home, as Sierra will be able to move away and get married when she is older. He is a life long commitment and will be a lot of work, even if he can walk some eventually. Until you have a special needs kids I don't think you could make such a statement. Besides, your kids are super chill and can feed themselves and are probably close to dressing themselves as well. How nice that must be.

  4. Yes, which is why I said "But then again, the older they get the more t hey can do for themselves, which does make it easier" Guess it's one of those things you'll never know what it could be like to have soon to be 2 walkers, running a mommy tired and crazy going everywhere & anywhere. the constant always keeping an eye on. But I'll never know if those responsibilities are less or more to that of a child who can't do alot of those things. No one can fully understand where you are coming from and what you say is so hard unless it's a friend that is in the same boat. Just unrelatable, i guess.

  5. I have noticed in movies like "Marley & Me" and other movies the mom's stress levels and the way the act does seem to change a lot once their kids are older. We were watching it the other day, and I said to steve- see, once her youngest was older than 5--it now seems like she's not as stressed and seemed to act a lot more happer & carefree. I think these "younger" days for us all are hard. Everyone has their own set of challenges NO Matter if a child is disabled or can be hard for everyone. I think it's easy for every mom individually to think "I've got the most on my plate" Like i for sure do now going on 3 kids. I read an article on KSL 5 that stated being a mom of 3 is the hardest transition and task then at any other time. So i will of course think that my plate is more full than others.....but every mom has unrelatable differences from one another, doesn't make them better or worser moms. But I am looking forward to the time when, like in Marley & Me my kids are all in school during the day (that would be a big relaxation break, geez!!!), where they are self-sufficient, they've hurdled over all ltheir milestones, and all on the right track with everything......where it seems a lot "easier" time in life. That'll be a cool/weird transition to go into :)

  6. Heather- thank you so much for checking in on us on our blog. Yes, Gavin was having a rough time again. Thankfully he is home now and we hope to stop the IV antibiotics soon. We really appreicate how much people keep us in their thoughts and check in from time to time. We know you all understand just how crazy life can be at times and know that we want to keep in touch but at times that is literally impossible.

    As for the Hippotherapy- so far we LOVE it! You can check out Zoe's blog for some good Hippo pictures that I finally got around to posting. We have seen some good results and she really enjoys it (unlike any other physiotherapy session she has ever had!) I hope you are able to find the funds to get Carter started soon.

    Take care,

    BTW You can easily delete unwanted comments on your blog- I somtimes have to do that :)

  7. Glad you are well Genevieve! I can't wait for him to start hippo therapy.