Tuesday, August 3, 2010


I’m having a collision between reality and hope. So that you know from where I’m coming, I’ll start at the beginning.

Gracie was born just six weeks early. I remember the NICU staff telling me that she was a “feeder, grower” on their unit, and that they’d have her out of there and home quickly. However, she was only 3 pounds, 14.5 ounces at birth, and quickly dropped to 3 pounds even. Her Alpha-1 Antitrypsin Deficiency gave her severe liver disease and jaundice. She did not eat well. She did not grow well. She was incredibly fussy and hard to soothe. She was miserable.

And so was I.

She was only supposed to stay 1 week until she mastered suck, swallow, breathe. She didn’t. Instead she stayed 23 days and went home on an apnea and brady monitor. The alarms kept going for 4 months. She would forget to breathe while sleeping. Her heart would subsequently drop its rate, and scare the heck out of anyone near her. This wasn’t supposed to happen. She was supposed to learn how to eat and breathe at the same time. Simple as that.

Well, not so simple…

So here I am 8 years later. Grace is growing amazingly well. She is thriving in so many ways. She appears totally normal.


She runs head long into anyone who comes into her way. She talks in the loudest voice. She still explores the world using her mouth. She still touches and moves things she shouldn’t. She does everything in a full steam ahead kind of way. Until recently, most people chalked that up to her being a little girl, but now, she isn’t fooling anyone. She is 75 pounds, and approaching 4 and ½ feet tall.

She hurts others around her in the same way Dino used to knock Fred Flintstone over on The Flitstones. In fact, we say she “dinos” us.

She is not gentle. She is not graceful, which makes her name ironic.

She suffers from sensory processing disorder. She is a seeker in the truest sense. She can’t get enough of sensory input.

She also worries about things she can’t control.

All-in-all, she worries me today. I see her exploring her world and not realizing the impact she is having on others. We give her a large sensory diet in an attempt to tame her natural tendencies, but…

Perhaps, I just need to accept her for who she is.
Perhaps, I’m the one that needs an attitude adjustment.
Perhaps, I need to let go of the guilt of what happened to her 8 years ago.
Perhaps, I need to embrace reality and quit hoping she’ll suddenly understand social skills when it comes to personal space.

Perhaps, this is another one of her mom’s famous spirally days full of worry and concern.

Good grief. Anyone have any miraculous advice to share with me?

But please know I never take her for granted. She is a miraculous gift in my life.

Jenabur blogs about life with the Alpha Girls at Unique But Not Alone.

1 comment:

  1. I don't think I have any miraculous advice. I have a 6.5 year old who can still pass off as being a little girl, but she sounds a lot like your Grace. Her middle name is Hope, and I think God gave me that name for her because sometimes that's all I have to hold on to. There are things you can do - you probably already know many of them - and I guess I just want to encourage you to press on. My daughter use to pull hair (HARD) to get people's attention. No one (least of all me, her favorite target) understood what was going on or how to best react to it, so it continued for a long time and still shows up every once in a while, but once we started to understand more and develop good strategies if has mostly vanished into the, "Thank goodness that's over" box. To be replace by new stuff...but each struggle teaches us new tools, new techniques, new strategies and each battle seems a little easier. I'm not looking forward to the days when she can't just pass off as a little kid, but I'm HOPING by then we've learned a lot more.