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Tuesday, August 2, 2011

Older Children can be Scary

I remember our first Wolf Hirschhorn get together.  It was at Chrissy’s house and there were about 10 families there… all with kids.  None of the children talked.  None of the children walked.  All the moms smiled.  It was as if I had stepped into this strange parallel world.  Some of my most dreaded fears were TRUE and exposed.. right here in this room – and no one cared!  Alexander was only 6 weeks old and I was petrified.  I loved the smiling faces of the children and the warm embraces of the mothers… but look at all of those things their kids aren’t doing!

Since that meeting, those women have become some of my closest friends.  Two of those children have started to walk and talk, and the other children are moving through milestones at their own pace.  I speak with their moms, so I now think of them like I think of Alexander – with pride in the strength of character, not with pride for the achievements accomplished.
whs4
This picture was taken at the 2010 National Conference.  It is the youngest children… Alexander was THE youngest.
So why do those older children seem so scary?  Why is it that I have a mini panic attack when I look at pictures of children from other get-togethers?  I think I have figured it out…
When I think about Alexander and our other friends that I know – I think of all he is almost ready to do.  For example, “he is getting better at sitting unassisted.”  “He is eating better.”  “He is almost…..” 

When I see pictures of children I don’t know – with names I can’t place… I think, “Wow.  They still aren’t doing _____.”  “Wow.  They still aren’t walking.”  Will that be Alexander?  “Wow.  They still aren’t sitting.”  Will that be Alexander?

I’m writing this post because I want to be honest.  I still have fears and doubts. There are still areas of acceptance I struggle with. I realize this post may offend some of the people I want to have in my life. Please understand… I know that Alexander will age… and some time  - some new mother is going to have the same questions.  I mean no disrespect. I think there are many people in my life who find Alexander scary.  It is part of life. 

There have been a few of my blog posts that have been featured on www.wolfhirschhorn.org.  And some people have reached out and said how much some of those posts have affected them.  I guess I just feel a need to come clean.  Not everything in my world is 100% sorted out.  Sometimes I still struggle.  This is one area in particular I struggle with.  Changing my thinking from “Older children who still aren’t – to – Older children who almost are.

I think it is ok.  It is ok to still have fears.  It is ok to face those fears.  But I really need to find a way to stop attaching limitations on children I don’t know.

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5 Comments:

At August 3, 2011 at 5:03 PM , Blogger Unknown said...

See, you honesty is what I really admire about you. It is important to examine your thoughts and fear in order to figure out exactly WHAT you are afraid of. No one should fault you for that; they should applaud. Most people don't bother to take the time to examine what they think, feel, fear, believe...and it is when we fail to examine them that we allow prejudices to take hold. No one expects you to have it all figured out, or to be perfect. Be the wonderful person and mom that we are getting to know. We really do care about her! You are doing wonderfully on your journey, and YOU are progressing at just the pace you are supposed to...just like the children are. :)

 
At August 3, 2011 at 11:00 PM , Blogger Heather said...

My husband and I are in that picture with our son Frank. I remember the weekend very clearly... I was SO overwhelmed and emotional that I hardly spoke to a single person. I was constantly on the verge of tears and thought if I tried to speak, I would break down crying. Prior to that conference, I had only met one other child with WHS (Kendall), and this was my first exposure to older kids. It was a little scary. And yet, interestingly, I left the conference feeling really good about our situation. The thing that really stood out to me was how "normal" all the parents and siblings were. I left there unsure of what Frankie's future would look like, but pretty confident that we as a family, and I personally, would be just fine.

 
At August 4, 2011 at 8:39 AM , Blogger Kristen said...

Heather. I remember Frank, and you guys. You know, we had very similar experiences at the conference... It seems. I remember one of the first time I felt "real heart warming JOY" was at the dance. I was more lamenting on pictures taken lately at other gatherings. Of kids I can't quite place and don't quite know. Then the age gap gets in my head. I remember - at the conference being in AWE of what everyone COULD do, not couldn't - so I think it is an "anonomity" thing.

 
At August 8, 2011 at 9:35 AM , Blogger Kisses4Kaylee said...

This is a very interesting post, because I feel much as you do. I look at our little group of kids and am reassured by all that they are accomplishing. It gives me hope and faith that Kaylee will be among them. However, when I meet/see older children, I think what strikes me most is how young they still seem...how dependent. Kaylee is a baby, so although she is not doing what she would do as a typical 18 month old, I can still vision her as a baby and treat her as such~ it doesn't upset me as much (until, of course, I see another child who is younger walking and talking...) When she is 5...will she still be needing me to carry her everywhere? When she is 10? 18? Will she be fun and sociable? Or will she be quiet and inactive? The future is scary, so I try not to project or think too far ahead. Thanks for posting something that I can very much relate to and reassure me that I am not alone.

 
At November 23, 2011 at 9:26 PM , Anonymous Bryan said...

I understand your feelings. I watch other kids and their progress through cancer treatments, seeing their hair grow back quickly for instance, and wonder if Noah's will as well. I guess the greatest worry we face is that T-Cell is not curable. It's treatable. Thankfully God holds the future.

I am now following....

 

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