Hypotonia

So today is Halloween, my favourite day of the year next to Christmas!  We had a great day and took my daughter Ella, 19 mos, to a Halloween party.  When I saw her I almost cried because she looked adorable in her little bee costume!

We brought her to the Halloween party where there were several other babies and toddlers around her age.  When she was younger, I always noticed that she was behind the other children in developmental skills, but it wasn't until lately that I really noticed her ataxia compared to other kids her own age and younger.

All in all, it was a great day and will only be better when I get home from work and get to see my bee again, and all the neighbourhood kids in their costumes. 

But at the same time it was awful.  It was so hard for me to be there with her and all those other kids.  And to see her wanting to interact with them but not being able to.  And wanting to do things like they did, but not be able to. 

She has the greatest demeanour, and showed up all those other cranky kids in that department ;) but it just broke my heart.  Not for me (I love the guts of her) but for HER.  It just seemed like everything is going to be an uphill battle for her from here.  And she wants to do what other kids do so easily but it's just so hard for her. 

So basically, I needed somewhere to blow off steam that wasn't my blog, where I try to spend most of my energy focusing on the positives in our life.  And I don't need to ruin my husband's day by talking to him about it either.   

I just wanted to see if there was anyone else who feels this way in group situations--and what do you do to cope with it?  I imagine I am only going to have to encounter this time and time again, and I need to develop some sort of coping mechanism for these situations.  Especially with the holidays looming.

Thanks!

You are really dealing with some stuff when it comes to these situations...It is hard sometimes!!

I will share how I handle this, but others will hopefully have thoughts as well. I try very hard to look at the situation we are in, whatever the social situation, and notice that when I start to feel bummed about his differences, he doesn't notice! He is having a fine time doing what he wants to do. That helps, but it doesn't erase the worry and sadness that creep in sometime. This thought process helps me most of the time.

DOes this mean it is easy...NO!!! Does it mean it will just one day get all better, no. It just means we are normal, loving parents who want the most and best for our children.

We are all here for you. I pray for you to have peace and hope tonight. I bet she was a perfect little bee!!!!!

Hugs,

Clara-Leigh

Garrett, 4 years old, mild congenital myopathy,possibly MITO so hypotonia, g-tube from December 06-Fall 07, constipation, gross motor and speech delay, heart PDA repaired by hearth cath. Winter 08. OT once monthly, PT two times weekly, Speech 3 times weekly, water therapy weekly and as many horseback rides as we can fit in at home! Addie, 8 years old, mild congenital myopathy, possibly MITO. Low tone, tires easily, poor endurance. PT weekly, regular swimming and rides horses 3-4 days per week and competes in barrel racing and other timed events. Ainslee, 6, just about too normal some days, but really patient with all of her siblings' therapies!! Oh, CONSTIPATION...how can one forget that???

My little Girl (2.5yrs) was also a bee...and she also looked so cute. We also were at a party with kids her age, she had a good time, she just has her own way of having fun.  I actually had my moment of sadness later when we went out trick or treating...she just didn't get it and was just interested in getting outside and heading to the park and not interested in knocking on peoples doors or holding something to get candy in.  It can be very hard and like you we also think of what she is missing out on.  I am going to start talking about Christmas and Santa now in hopes that she will understand it a little bit.  I do have to remind ourself that this time last year she hadn't even started to walk,  lots of new stuff for her and she is certainly in the gross motor exploring stage...and there is NO listening to me when I ask her to walk in the direction I want to go in...her own agenda which included running onto the street.

Hang in there, we are only human and want our kids to enjoy the things that brought us joy as kids :(

Brenda