Thursday, January 27, 2011

The low end of low

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Elijah 9 months

I'm, once again, having a re-shifting and re-focusing of my expectations.  I've learned something about me: If I have a general idea or goal in my head, I can tolerate and stick with just about anything to get there, but if that suddenly changes, I'm all in a scramble.  For instance, when I was dancing, we would often be given a rehearsal time- let's say that our rehearsal was from 10am-5pm.  I could be danced to the limit, pushed to my max, but at 5pm, my body would shut down.  If suddenly the choreographer would say, "Can you guys hang for another 15 minutes to just run it a few more times?"  I would freak out (not openly, but inside.)  It would take all of the inner strength I had to try to muster up the energy and desire to power through 15 more minutes. And it was hard.  I was really resistant when it came to things like that.  I'm having one of those moments today.  Elijah's physical therapist was here this morning and while we were working with her, she was talking about how much flexion there is in Elijah's shoulders.  I agreed that I could feel that.  Then she said, Yes, well, unfortunately I think he is on the low end of low for muscle tone.  He may not walk until closer to 3 years old.  He might walk before then. But he might not.  It was like a shot to the heart.

When I was still pregnant with Elijah and I was researching what the side effects of Down syndrome were, I saw some charts for developmental milestones.  The average for walking was around 24 months old.  It was a bit of a shock to realize that it could take Elijah close to a year longer than it did for Christian to walk.  I rolled that around in my head for quite awhile and eventually came to terms with it: Okay. Two years. I can deal with two years.  But now it could take three years?? Three years makes me cry.  When I think of all Christian has mastered by three years, Elijah will be so far from that, that he may not even be walking yet. My heart hurts.  I'm trying to stay focused on the fact that "He'll get there". I'm reminding myself that muscle tone has nothing to do with cognitive ability and he may be doing a ton of other things even if he isn't walking, but my heart still hurts.  So, it's another adjustment of my expectations...to some degree...the fighter in me says, No.  We will work.  We will work hard.  We will help him to get stronger.  After all, he lives in a house with a dancer and a stunt man, right? Plus, even though we have a very experienced PT, she's not God.  She can't actually predict the future.  She might be right, but she also might be very, very wrong.  And yet, I know I have to adjust my expectations while we do all of that, so that it's not unreasonable or destructive to expect something he just doesn't have any control over.

Once again the word ODDS comes up for me.  This word was, and to some degree still is, a huge source of anxiety for me.  The odds of having a child with Down syndrome. The odds of said child having a heart defect. An organ defect. Lower than normal muscle tone. Eye problems. Autism. Cancer. ...And that is just a very small portion of the list.  So, we beat the odds for a heart defect. Beat the odds for an organ defect. We landed on lower than average tone. Landed on a few eye problems.  What more is still unknown...  There are odds for everything, but chances are (odds are?) most people don't spend a lot of time thinking about it.  It wouldn't necessarily be healthy to be thinking about it.  The odds are kind of a crap shoot. However, I think about odds now.  A lot. The odds of having a child with Down syndrome is about 1 in 700.  It is kind of funny, because every time I have a friend get pregnant and worry about Down syndrome, because of knowing me, I kinda want to say, "You don't have to worry.  I only have 503 friends on Face Book, so you're covered."  Once I get to 700 friends...then you're on your own.

I'm feeling a little low today.  A little discouraged.  Although, when I actually look at Elijah's smiling face and see him continually moving forward in progress and milestones, it's hard to get and stay depressed.  So, I'm just feeling low.
Maybe I could even say that I'm just feeling on the low end of low right now...

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11 comments:

Tricia said...

Elijah may be on a different time line than most, but he has strengths that others will never acquire. Focus on that. He can make even the most sad person forget about any sadness they have, that is the best gift anyone can give, way better than watching someone walk. So... he may walk later, but he smiles brighter. Of course you and Charles will work with him. He will probably beat what the physical therapist predicts because that is what we do in our family. Remember we ALL have our strengths and weaknesses. Wise people say to focus on your strengths. Elijah has many strengths, he has so much to contribute. I know I am BLESSED to have him as my nephew and I will help him with his weak areas whenever I can, but I will focus on his BEAUTIFUL strengths.

skiingthroughlife said...

hello there friend. I can tell you that this week you are not alone, and I have not mustered up the strength to post on Grady's progress. I am taking in all his annual report findings, take a breather and praying about it all. Grady's speech at a year is that of a 1-3 month old, the rest of his development that of a 4-6 month old. My dreams of the Gold Medal at the Special Olympics seem a little farther away. I am discouraged and searching for the strength through my expectations and fears. We have not lowered his crib beyond the highest stage, the same we brought him home to... As his one year approaches, I can tell you this, He is Love, he is happy and content, he works so hard through his low muscle tone and Today is all that I have. So Today I will love him like nothing else. Today I will celebrate all that he created despite my own expectations and faults.

I hear you, I totally hear you. Hugs to you my friend.

Becca said...

When Samantha was born and we had our PT eval., they asked me what my goals for her first year would be. I said, well, I expect her to walk by 12 months. That was met with a stunned silence on their part. I soon learned why. It did take far more than her first year for me to adjust my expectations...I still expect things when I know I should let her take her time, do things her way. For what it's worth, I have known many children who did not walk before their 3rd birthday. They're doing pretty amazing things now. :-) Hang in there!! ((hugs)) from me and Sammi...

Anonymous said...

I hate when reality comes and gives you a slap in the face. You are right however, you PT does not have to be right, and beating the odds is something you know all about. In the meantime, go ahead and let yourself be low today. Today you don't have to fight. You will tomorrow . . .because you are incapable of anything else. Julia and I have often talked about how your strength and great attitude continually amazes us. Today you don't have to be Ms. Positivity. You are allowed to be sad . . and tomorrow Elijah and Christain will astound and delight you once again.

Marisa

Anonymous said...

I hate when reality comes and gives you a slap in the face. You are right however, you PT does not have to be right, and beating the odds is something you know all about. In the meantime, go ahead and let yourself be low today. Today you don't have to fight. You will tomorrow . . .because you are incapable of anything else. Julia and I have often talked about how your strength and great attitude continually amazes us. Today you don't have to be Ms. Positivity. You are allowed to be sad . . and tomorrow Elijah and Christain will astound and delight you once again.

Marisa

Elizabeth Goldberg said...

Dear Jennifer,

You know I don't have children, well my own at least But I remember very distinctly having this conversation with my father. He said that one of the hardest things that he had to do as a parent was give up his dreams for his children and let us live out or own dreams. Just as Christian has his own path to take so does Eli. You will guide, teach, cajole and push all you can as a parent, but in the end it is up to each child follow is own path or truth. Eli has a grand truth just as Christian does, you do, Charles does, or even I do. It may not be what we planned or even wanted at one time but it is where we are and where we are supposed to be. To have that much joy and love in life is truly a blessing. As for feeling low, I have a rule...treat yourself as you would your best friend. You have a right to feel bad, low, disappointed (whatever the feeling is) for now. But just as you wouldn't let your best friend sit in there lowness forever don't let yourself. There is too much life out there to be lived and too much joy waiting for you to experience. Remember there are quite a few people cheering you and your family on.

With much love,

Liz

Laura said...

Even troopers feel sad sometimes. I say go with it till it goes. Being sad is as part of life as being happy. You get to feel the whole range of emotions on this journey thanks to your boys.

xo

L

heather@actingbalanced.com said...

Hugs!!!

I am always amazed when therapists pull out their 'educated crystal ball'... Liam's first speech therapist actually completely missed autism as a diagnosis for him and thought he was just stubborn... another told me that she didn't think Liam would progress past sign language... (which he's virtually abandoned because he's found his voice)... so keep up what you are doing and let him grow and develop at his own pace :)
The pics are fabulous - his smile must light up the room!

Bethany said...

Oh woman, I can't wait to get to LA and give you a big ol hug ... because I think you need it!! And we are gonna share drinks (I think - LOL) and laughs and smiles and stories and so much more ... and you so need another parent of a child with DS to connect with more -- because that is how we cope. We get it, we can cry on each other's shoulder ... and all is well that ends well. He will get there ... and you will have that many more tears of joy when he does.

BTW, your hubs is a stunt man? That is awesome!! LOL!

MommyToTwoBoys said...

Seriously though, look at that face!!! That has to be enough to at least force you to get back up to high for a little bit. Even on our very worst Autism day, my son's beautiful face or laugh will melt any fears, stress, anger, or frustration, if only just for a few minutes. But sometimes, it helps me completely refocus and put things into perspectives.

You are not alone, there are days I feel the same way and I tell myself what many others have told me. There is a reason. We may not know it, but there is. My sister would not be able to deal with what I do, at all. She would be in a mental home. But I was given my son because I can do it. He has brought joy and understanding to my life. He has changed so much about me for the better.

Oh, and just forget the odds. I know too many moms with 3 or 4 kids with special needs that throw the odds on their butts. I stopped paying attention to those a while back.

You can do this. You WILL get him to walk. You are a strong mama with an amazing family. Hugs.

Chris P-M said...

Jen, Kai did not walk until 30 months of age. I'm a lot like you are...I'll work my tail off to reach a goal, and when it's reached I'll feel I've been successful. Sometimes I think that having Kai in my life has taught me that I'm NOT as in control as I think I am.

Don't get me wrong, we still work darn hard with him. My hubby told me once that he thought I was going to lose my mind because of the intensity with which I worked with Kai. Luckily we now have a team coming into the home that has taken on some of this hard work, but I'm still MOM, and I'm still the one that worries.

It's hard not to look at those "odds" and not think "I'm gonna beat them!" Somehow I feel that if I stop trying so hard, I'll regret it if he does not make gains. I've finally come to the middle-of-the-road on this: Do what I can, then let it go!

Sending [[hugs]] your way! These things are so hard, and they ARE such an encompassing part our lives. Hang in there!

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