Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, June 14, 2011

Sometimes reality sneaks up on us

*disclaimer* This post is a PUI. Posting Under the Influence....of a migraine. In fact it's one of the worst I've ever had. It's possible that the emotions described in this post were slightly intensified by pain. Just say'in....

And, I think I need to also say that if you read this, then see me in real life, please don't come up and hug me and say things like, "I'm so sorry. I had no idea." 1) if you do that, I will start instantly crying and since we'll probably be in a public know. 2) You don't have to feel sorry for me. This is just junk I need to deal with. I'll get over it right.  I'm already over it.

So today (Sunday) Dean and I took Axel to my niece's championship softball game. (Angela was hanging out with her PCA at the MOA) We love watching all the cousins participate in their various sports. We really do! Angela and Axel love to go and cheer them on as well. You won't find better cheerleaders than these two!

On the way to the game, Dean and I were talking about his family reunion that we'd attended the day before. I mentioned something about how much our nieces and nephews (or their children) have changed in the last couple of years. They're just growing up so fast! This is especially noticeable with the cousins who are right around Angela's age.

Our conversation trailed off, and Dean was busy looking at something out the window. (I was driving).

And then it happened. Tears just started falling out of my eyes. I was having one of those moments we as parents of kids with special needs have sometimes. This moment is called, "Realizing there are some things my kid is never going to do." But I didn't want to be HAVING a moment just then. I quick tried to wipe the tears away before Dean noticed them.

Only the tears kept coming.

I couldn't wipe them away fast enough.

Then Dean turned to help Axel with something in the back seat and realized I was crying. Since he knew I was feeling horrid with my migraine he assumed it was that. "What's wrong? Why are you crying? I'm sorry your head hurts so bad.....Honey?....Is it your head, is that why you're crying?

Sometimes when I cry, and it's something that REALLY hurts, I can't talk. Talking would let the floodgates open and I would go from "just wiping tears off my face" to "the ugly cry".

We were almost to the game, and I didn't want to get there looking like I'd been crying, and yet that's just what I was doing. Dean thought it was all about my head and I couldn't even open my mouth to explain to him how suddenly emotionally painful it was, going to this game. That I had just realized something and it really....really....hurt.

Finally I was able to answer that I wasn't crying because of my head, which confused Dean even more because we were just sitting here having a nice conversation and now I was CRYING in the car. I'm sure he was trying to figure out what he could have possibly said that would have caused this sudden meltdown. That, and I'm sure he was feeling trapped, "OMG I have do deal with a crying wife in the car! UGH!"

All of this happening while driving and trying to find our turns.


Finally I was able to say just a little bit.

"This is really hard for me today. Angela just turned 15. She is older than these kids and yet she is so much younger than them."

(wiping more tears, catching my breath here again.)

"There will never be a championship softball game for her. There will never be drivers ed. or behind the wheel for her. There will never be some of the milestones...the BIG milestones that all her cousins are having. She is going to watch them do all these things and she is being left in the dust, and there's nothing I can do about it."

Dean didn't really know what to say to all of that.

As much as Dean loves Angela, and he is an amazing dad to her, she is not his biological daughter. He is not going to feel the same things I do about this stuff. His perspective is different. I have already watched Angela be passed by many times by her "typical" friends in school. I can't tell you the last time she was invited to a party by one of them. Surely not since we've lived here, which would have put her in 2nd grade. Her typical friends have their own busy lives. At 15 they are hanging out at the mall with their friends, and not within arms reach of their mothers. They are taking driver's training. They have boyfriends. Cousins who are years younger than her are now like her babysitters at family gatherings. This hurts MY heart, imagine how Angela must feel.

And then I thought about how different our lives are when we go somewhere compared to other parents of 15 year old girls. When we go somewhere, before getting out of the car we have to make sure she doesn't have snot all over her face, or that her pants are pulled up all the way...and zipped. We have to  help her put on a bra, and find clothes the are easy for her to get in/out of without our help, something that is very difficult to find without dressing her like she's 5.

And then I thought it. The "taboo thought".

I wanted just one day that was normal.

And then I hated myself for a few minutes. I am always the one giving the pep talk. "Down syndrome is no big deal. Your kid will do things in their own time. Yes, it is hard to watch them be bypassed by their peers, but there will be things they excel in too. Just help them be the best they can be."

I am the strong mom. The one who can meet any challenge head on, the one others call for support, and yet here I was sobbing in the car. (because now I was sobbing) and could barely put into words what hurt so bad, mostly because it caught me completely off guard. I didn't even know these feelings were THERE!

We arrived at the softball game, and I busied myself at the trunk of the car while I tried to compose myself, at the same time hoping that my eyes weren't all red and puffy. (they were.) I know there will be times in life when reality resurfaces, and it will probably catch me off guard again. But for now, I picked up reality in the palm of my hand, squished it up in a tight wad, and stuffed it back down deep inside where it belongs.

And then I was fine (see, I told ya!) and we had a great time watching my niece's game.


Karien Prinlsoo said...

Oh, Leah, what can I say. I totally "get" it..and we are 10 years behind you! But thanks for sharing you"melt down" with us...its good to know that even the strong moms get them. In a way it gives me "strength" to know you go through them as well, but that you can pick yourself up and tackle any challenge head on!

Michelle said...

Leah, you're right, sometimes it is hard to let go of that "I GOT it" and just let the emotions flow. Ciarra will be 13 next week, and there are times when the reality hits me full in the face. And, truly, I am SO lucky with her abilities, she doesnt need so much help really as emotional support constantly and supervision. But yeah, it can be exhausting. Its ok to say that. If we tell all the parents behind us that it is always easy and always minor, we would be lying. It isnt. But its ALWAYS worth it. Ciarra does extremely well, but...she gets left behind. And emotionally, she is more fragile and needs me far more than any 12 yr old should. I count my blessings on the self help skills that stuff, but sometimes it is draining being everything to someone all the time. I hear ya, gf. And I also hear ya on the "let me have this moment, but dont tag me with these emotions forever". Hugs.

Kathie Brinkman said...

Been there, done that. You already know. Love ya! We're in this together girl.

gena said...

I have a son who had a stroke at 15, when he went into heart failure ( from the flu) and crashed. He is now 3+ years post heart transplant.... and disabled. The thing is, for the first 15 years of his life, he was exactly like his twin brother - just a normal kid. He has moments like yours (so do I) too. When it hits him square in the face that his best friend, his twin brother is leaving him behind. He can't drive, walk or even take a shower with out help. He's 20 now and wants a LIFE, just like his twin. My heart breaks daily and so does his.

So, I'm going to say it: I'm sorry... but because I do have an idea of what you're going through... and it SUCKS ! And now, I'll follow your example and put reality in the palm of my hand and squish it tight and tuck it away.

I offer hugs.....


Laurie said...

alright!! thanks a lot!! I've been sittin' on the edge of this "little" emotional place for a while. Nevin is 21 (say it isn't so!!) and while you said.... "feelings you didn't even know were there"..... that's where we differ a bit..... I know they are there, because I've been seeing little bits of them ...... but, like you .... I'M FINE!!! I just don't look, sorta like when I'm on a ladder (I don't look down!!) I want to write, that one day.... I'll be brave enough to look.... but even as I think about typing that..... my heart gets tight, my eyes get wet..... and I think, nope, it's too big!! it'll be too big. And it probably will... so I'll probably only look at it a little at a time, like I always have, then go back to "strong mama" face. SOOO, thanks a lot!! ...... no, really..... softly said, thanks a lot. Tonight, I don't feel so alone...... like I usually do when I face this "reality" monster. And yes!! a migraine, does make the monster bigger... no, I take that back...... a migraine somehow makes me forget to "look away" when it starts getting too big.

from another "(usually) strong mama".

Mel said...

I'm going to email you about this very subject!! :(

Kelley & Soutchai said...

I've been a lurked here for awhile but wanted to pop up and say thanks. Thanks for sharing even when it's painful. My daughter is only very little and I get so overwhelmed about everything we have to deal with but yet I know I should be enjoying this time. Enjoying that she has friends her age, she can pass for typical, that really right now she's a pretty average 14 month old.
I realize the hard road is still to come. Thanks for showing me the good in it. And being honest it's not all roses.

AZ Chapman said...

Leah I wrote about this recently on my blog as a person with a disablity I have CP and am a collage student however i know what u mean come read the post hugs

Tracy said...

Just saw your bog for the first time today and came across this post. My seven year old daughter has Down syndrome, and I know the feelings you are talking about. I appreciate that you decided to post them. So many blogs seem to make raising a children with Down syndrome so easy, so magical. I do have joy and I love my daughter to death, but those feelings creep in from time to time. It wears me down to have to continue to live my life like I have three year old. I see my friends with seven year olds and note how independent they are and it is hard to know that I still have to brush my daughter's teeth, take her to the potty, and keep her from emptying all the contents of my fridge on the counters. I have wondered if I was the
only one who felt this way. So glad to know I am not