Great Expectations

Do any of you other parents of kids with differences struggle with reconciling having high expectations for your child with embracing your child for exactly who they are?

Sometimes I really struggle with this.  I accept my children just as they are.  I desire to make them as functional as possible.  I love their little bodies just as they but I'm willing to consider surgeries if it increases function.  I'm willing to pursue intensive therapies/taping/splinting/casting etc if it increases function.

Sometimes I feel guilty for pushing them.  Maybe Ellie is not ready to reach whatever milestone we're working on.  And why is it that so often the milestones feel like "work" for me?  At what point can I just relax and enjoy my child where they are at without recognizing every single activity as "therapy" and helping us meet our milestone goals?  And when I do decide that I am just going to relax and enjoy where we are, doubt creeps in and I begin to worry that I will regret not pushing them.

With Will, I've noticed that generally, people are amazed.  They can't believe that a child with partial hands and missing feet is accomplishing what he does.  I love watching people's reactions as they notice his differences and  this notice his normalcy.  I love watching their faces as they light up at seeing a child in prosthetic legs climbing or running.  I love watching their minds work as they see a small child with partial hands drink from a regular cup or feed himself or write his name or manipulate my phone.

With Ellie, things are a bit different.  Ellie has the body parts but they don't function completely.  So we tend to get more looks of pity - which I hate!  I want to experience the looks of amazement at what she accomplishes - despite poor muscle tone & tight tendons and limited range of motion.  Quite frankly, it is amazing she is rolling again as of yesterday!  It is amazing she is learning to sit up.  It is amazing she can reach her mouth with her right hand.  But an outsider wouldn't know all this.  They don't see the tendons and muscles and joints.

Perhaps this isn't very coherent.  I blame it on the lack of sleep (I'm going on day 2 of being awake for about 21 hours a day.)  I blame it on the gray hair too because I am a believer of blaming lots of things on the every increasing amount of gray.  Thank you, age 30.

I guess I just struggle with walking that fine line of accepting and enjoying where we are at while at the same time, pushing and expecting more.  A lot of times I tell myself that one of the blessings in parenting Ellie is that I get to, in many ways, enjoy having  a "little baby" longer - with delayed milestones like sitting and crawling and standing and walking, I get to enjoy her seeming little longer.  But sometimes it's difficult too - like when I must decide where to put her for Sunday School because while she is cognitively at level with her peers, they could crawl right over her literally.    And maybe it's not such a big deal now because she is little but what about a year from now or two years?

I have huge expectations for my kids.  I expect them to grow up and give back to society.  I pray they will choose to follow Jesus.  I pray they will always want to live next door to me and that Will will always want to marry me. ;)
I expect them to work and have families of their own (next door.)  I expect them to feed themselves (& do their own dishes!)  and clean up after themselves and drive (Will informed me he will wait to age 17 and let me sit in the backseat to navigate.)  I expect they will be mobile in some manner - perhaps with assistance, I don't know.
But I don't want to expect too much of them before they are ready.  I want to push them to accomplish but not so much that I push them away or forget to enjoy them as they are now.  I expect mobility but I somehow must learn to be okay if it doesn't look like I expect or come like I expect.

I'm rambling.  I'm just processing and its not very clear but I sometimes really struggle with balancing my expectations with reality with the here and now.  I struggle with the therapies and treatments and the hopes of pursuing some goal in the future... with the daily business of life.

Anyone else been there?  Maybe you are there too?  And advice on how you walk this line?

2 thoughts:

Mike and Christie said...

I totally get what you are saying.
I remember the first time you brought Will to camp...(2 years ago) He was at the pool running around and my thought was, "Wow! He's going to be just fine! He will not be slowed down one bit! Because his joints work, and who needs fingers and feet anyway!

But with Ellie, as with Erika, as with our son Tim, it is different.
Joints don't work. Erika is limited in many ways and we do have to push her sometimes to try harder. Sometimes I wonder if we push too hard. Sometimes, not enough.
I think the gauge is, how much we frustrate them. LOL
Erika has some tools so she can reach things, yet many times she'll ask me to get it, even though she can get her tool..... I told her the other day, "I'm not your tool!"
I don't mind getting things, but I'm concerned if I become her crutch to make things easier, what will she do when I'm dead and gone?
She MUST work harder.... strive harder, study harder, she MUST, because if she is going to have a job, make her mark, succeed, she will have to try WAY harder than most. Just like Tim did, studying 7 days a week, from a.m. to p.m to get through college and still only being able to take 3 or 4 classes at a time.
It is HARD and this is where GOD Stretches me..... he stretches me in my own personal frustrations, wanting them to do better, wanting their joints to work, wanting them to succeed.... sometimes though.... I have to rest in the Lord. What if they were never to be able to accomplish anything? What if they never knew they were born and lay in a vegatative state. Things could be MUCH worse! Praise the Lord they are not.
But oh the worry.... I have a few gray hairs on ya! :)

Cindy said...

Hi Katie,

Can relate to lots of your thoughts here. I have also watched as people are amazed and inspired by my 3-limbed child crawling (and rather quickly too!!). Watching people "light up" as you described it is something that I never thought about before she was born (I also wondered if she would ever crawl at all). At the same time, I am constantly having to answer no when doctors, neighbors, etc ask if she is walking yet. The main thing that bothers is me is that I think she could interact with her peers better if she was walking. I know that she will eventually walk when she is ready, after all she found a way to crawl!! We have accepted that she will meet milestones on her own schedule and it is actually very refreshing to be freed from comparing.

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