Sunday, June 16, 2013

Father's Day

Fathers are special guys - especially Jason. From the moment Abby came into this world he was by her side. As soon as the helicopter carrying our little angel took flight, he followed behind, braving the snow and ice to meet her at the bigger hospital that could help her. I was a bit out of it for a few days, but when I finally was able to see Abby, I saw right away that she already had Jason firmly wrapped around her tiny fingers.

That month in the hospital not only helped me get to know my new daughter, it also showed me a side of Jason that I had never seen. Oh, he remained the rock-solid man I'd married, but there was also a calm that settled upon him that I'd never known. See, Jason was famous for his inability to relax. Frankly, the guy never sat still - at least for long. So, you can imagine my surprise when I saw that he was able to sit for hours beside Abby's isolette. All day, each day, he would sit beside her and watch over her.

Whenever I think of that time, etched in my mind was one of those first days. I remember it being evening, and I was exhausted. Thankfully, the hospital had a hotel, of sorts, where families could stay if there children were there. We'd spent the day with Abby, and I decided it was time to get some rest so we could do it all again in the morning. As I prepared to go Jason turned to me and said, "I'm just going to stay a bit longer." When I reached the door to the ward, I turned to look back at my little family. There sat Jason, with his head slightly tilted, watching Abby sleep - just as he'd done all day. He kept watch over his little girl. I know he wanted her to know that he was there - that he would always be there for her.

A bond was struck in those early days, a bond that I have been blessed to watch grow into a great love.  Yes, fathers are special guys, but one stands out in my mind for the love and devotion he has for his very special little girl.

Happy Father's Day to the very best dad I know.


Wednesday, June 5, 2013

What We Dread

I realize that it has been quite a while since my last post - life around here has a way of stealing time like that. While we have been quite busy, and Abby has had lots of hijinks, there is a more pressing issue that is on my heart, and so the "let's catch up" post will have to wait until next time.

After today's afternoon errand, and chatting with a friend on Facebook, I got to thinking about what the parents of special needs children dread. I am, in no way, shape, or form, a spokesperson for every parent of a special needs child, but I do have some experience with this, and thought it might be worth sharing some of the fears I think we have in common.

What We Dread

Doctor's Appointments

You would think with all of the extra doctor's visits we sometimes have, that we would be used to sitting in that office - we aren't. We, like our children, have learned many times that a visit to the doctor can be painful. It may be because we are waiting to hear some news, or test results, that have the potential to shake our world. It may be because the doctor will need to examine our child's ears, and we know that will require an intense wrestling hold, while our frightened little one screams until blood vessels break out on her face. It may be because our child is not great about understanding boundaries, and doesn't understand that running into the doctor's back office, or trying on the nurses shoes in the staff closet, isn't really the thing to do. Whatever it is, a trip to the doctor's office is rarely "routine".

Negative Comments

There are some people that "mean well" when they say things like, "Oh, it must be so hard..." or "God picks special people like you to have a special needs child - I know I could never do it," but negativity is negativity, even if it is proceeded by a complement, or couched in "understanding".

There are some, though who don't seem to care what they say - those small-minded, fearful people who imagine you can't hear them - or don't care all together that you can. These are the people we "practice" for. The ones that we create in our heads, so we aren't surprised into silence because of their rudeness. The injustice of the fact that our children have done nothing to deserve anyone's pity or scorn is not lost on us. We know that, to some, it is okay to think less of our precious children - and not a problem to take the extra step to vocalize that to their friends, the public, or even directly to us.

Other Children

Children are wonderful, but they also can be extremely blunt. Questions like, "Why does she talk like that?" or "Why does she look funny?" immediately sends us into protection mode. We, like all parents want our children to be liked and accepted by their peers, but their delays and differences sometimes make that a challenge. There is a fear that crawls into my throat each time Abby approaches a child she doesn't know and declares that they are her friend, and proceeds to chatter on about her day. Will the child accept her sincere overture, or will they run away without a word? Abby may not realized she's been rejected, but I do, and that is a horrible feeling.

When children are young this fear is less. I dread the teen years, not because of any teenage defiance or angst, but because I am so afraid Abby will not be accepted by her peers.

Triggers

There are certain things I am "on guard" for with Abby. For a while it was loud noises and big open spaces. These would send her screaming for this hills - or into my arms, where she would shake like a leaf. Now it seems that leaving is a problem. She loves going places, but doesn't always want to leave them - and she is not above creating a scene when necessary.

Some special needs children have "triggers", things that will disrupt an otherwise smooth errand or event. Parents know their children well and keep a keen eye out for any such triggers, in the hopes of avoiding them. I am sad to say that there have been times when I've avoided an event all together, because I just didn't have the fight in me that day. I dread Abby's triggers.



I know there are other "dreads", but these were the most immediate today. I share these with you, not for you to "feel bad" for me/us, but in the hopes of creating a bit more understanding. I've been trying really hard lately to remember that no one has a perfect life - it isn't possible down here on earth. Who knows what has happened in someone's day by the time you come across them. If I keep that in my head I am able to be more careful (full of care) with the people I encounter, it's when I forget that, that my selfish side rules. 

In the end I take a leaf from Abby's book. She is an expert at brightening the days of those she encounters. Thankfully, she is there to remind me to do the same.


Pure Joy