Friday, May 4, 2012

Remembering makes it real & What I need today...

We don't speak much of it because with a rare chromosomal abnormality everything that Abby has, even if it's a little off, gets wrapped up in a pretty tight box called chromosome 18q-.  She's had some things that have't been similar to other chromosome 18 kids, but no one seems to care much.  It may be a bit of that chromosome box and a bit more of...
we don't want to believe it really happened or if we get further away from it than maybe it never did happen!

Well, here it goes...
Abby wasn't very physically strong her first year.  She was barely holding her head up when I had to request to see a special developmental doctor, but she was looking at us.  She did smile, laugh and had some signs.  She consistently did "more" and "all done," but right at 18 months it was like a light switch.  My beautiful, sweet, content angel went into a shell and seemed to hate the world... our world.  Her signs were gone along with any interaction.  She wanted to sit and play...
by herself...
all day.
The doctor said it on a side note, "Well, you know she has autism too, right?"
Sure, I did know, but hearing it aloud... from a specialist.
It broke my heart because it's when we lost our Abby.
We spent years trying to find her or... coax her back into her world, but we ended up with
aggression, yelling, crying, hitting, pinching and scratching.
she wanted to be left alone, but we refused to let her go altogether
We fought back, but by the time she resurfaced years later we were so exhausted and grateful for eye contact and crawling up onto our laps, that we forgot that little honey who left us all those years before
We had to... right?
I have a hard time just writing about it because remembering it makes it real.
Reliving a memory further seals it and all the events that surrounded it and...
those weren't good times for us
it's when we came undone...
We moved to MN and almost every part of our world started to unravel.
It took a year or two, but we had to push the re-start button as we went through the stages of mourning
we didn't mourn the existence of Abby, but the loss of a dream
the dreams we had for her... and for us.
Who were were and who we wanted to be were just... not who we were or who we could be anymore.
Sure, the alternative wasn't so bad and in fact even good and maybe sometimes better, but it still wasn't the dream we had for our family

We were just trying to survive with this new Abby
We tried to get her back, but it wasn't possible.

After a time We accepted this new one and started to rethink our goals.
Re-align our lives...
Catching up wasn't in the cards
Heck, speaking or communicating dropped out of the picture for a time... even if it now lingers in the backdrop as a vague picture of hope

Survival is where we've lived on and off for years now... making the best of a difficult situation
Smiling even though on the inside we were a mess
Trying to pretend we were normal, but knowing we were not
Trying to make new friends under false pretenses was more of a front than we could hold up
I didn't want to be everyone's project or pity party
I wanted to be okay, but I wasn't.
This is the first time we moved past being a novelty unto... abnormally normal
We're accepted as normal, but we're still not
I still have to do the same things I did when we met and were rallied around, but now we do them alone once again
Becoming old news, yet still carrying a burden I wasn't intended to shoulder alone.

 So here it is... this is what I need for you to know.
I need to be myself
to be real
and honest &
I need you...

  •  to let me cry more often than you may be comfortable with
  • give me more grace as my friend even when you feel like an afterthought... because that may be all I have to give at that moment
  • to be the friend who sees beyond the forced smile and hug me for no apparent reason, yet all the reasons you know I haven't shared because... it's often just too much
  • To stop and talk to a big girl baby who won't talk back, but desperately wants to be seen...  and her parents need for her to not only exist in our world but matter
  • to not ask how to help, but just pitch in and know me well enough to do something
  • to not tell me to call if i need anything because you know I'll be dying before I'll call (I keep this card for the real bad stuff !)
  • to realize this isn't a sprint where we need people to band together and put everything into this for a season, but to see that this is a lifetime of those "need-your-help" moments and figure out how to carry me a lap or two every now and then
  • to not get sick of me not "carrying my weight" like typical people do because you've grown accustomed to seeing my world and don't see the extra on our plates as different or a challenge anymore
  • know that when I'm not around you for a period of time that you'll probably have to come to me because I can't come to you, but probably miss you just as much
  • usually I don't even know what I need because this is new to me too
  • what i need today might not be the same thing I need tomorrow
  • If you don't know what to say, you can probably be assured that not saying anything isn't the answer, and I need you to just be visible or acknowledge the situation rather than avoid it altogether.  Besides I have low expectations and you won't be the first person to say something ridiculous!
That's a start for today...
Remember once again those like us who are in your world
Odds are it may apply to them as well :)


  1. I so wish that I were there to hold all of you, not to feel sorry for you but to show you how very much I love you.

    I have never met anyone like you sweet Allison, you are super woman. Well heck honey if you need to cry go AHEAD, cover all the bases while you are crying. I will cry for you as well. You are amazing and so if that wonderful husband of yours. You have beautiful children and your family is so totally awesome. Since I am not just feel my arms wrapping around you now, hope I am not squeezing you too tight but it's hard to let you go because I want to take your pain away.

    Know that I love you and will stop right now and lift up prayers for day to day life.

    Hang on Precious girl. LOVE YOU AND YOUR SWEET FAMILY.

    Aunt Shirley

  2. Oh cousin. I wish we were closer. I have a phone that rings in the night too:). I know you said you won't call but I am a good listener. I love when people call because God has given me big shoulders. You are wonderwoman and super girl all rolled into one. May my friend Jesus lift you up today. ((hugs))


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