Out and About

Whew, where has this year gone? I think we must have spent at least 80% of it in the hospital with Ella. In my mind it feels like it should still be January 2012, but people are already decorating for Halloween and putting out Christmas decorations in the stores so...

Now that we seem to have things under control with Ella's health for the moment (*knocks on wood*), I have been struggling with how to act like a "normal" family. For starters, I'm not used to having her at home. And with a change in our nursing hours, we aren't used to having long daytime stretches, on Saturdays in particular, where it's just the three of us. And since she is my first child, I really have no clue what a typical family of three would do on a Saturday afternoon.

Of course we aren't typical. There are things to consider. Getting Ella out of the house is no small feat, and she isn't used to being outside so the weather is a definite factor. But lately the temperatures have been right and the skies clear so I'm forcing myself to find things for us to do on days like today.

I go online this morning and find an event not too far from us that is also pet friendly and think to myself, this could work. It's a beautiful day and after all, Biscuits (our 6 lb. chihuahua) deserves to get out too since he spends as much time in his crate as we do at the hospital.

So we start getting things together.

Ella's feeding pump? Check.
Suction machine? Check.
Pulse ox monitor? Check.
Trach 'go' bag and extra supplies? Check.
Diaper bag? Check.

What are we forgetting? Oh right, the dog.

Biscuits? Check.

We manage to get everyone loaded into the car and we're on our way. Of course we're low on gas and have to make a stop at the station to fill up first. Fine. We get on our way again and by the noises coming from the dog crate in the front seat, I'm pretty sure Biscuits is remembering the last time we put him in the car which resulted in a loss of his manhood. Sorry, little buddy. I try to reassure him he is going to have FUN! He doesn't believe me.

Meanwhile, Ella is busy making her own sounds in the backseat. Time to suction. Biscuits is still very upset. The traffic is terrible! Why is it taking an hour to go 10 miles???

Finally, we make it to our destination and...well, this doesn't look right. They're setting up for a wedding here and I'm pretty sure they aren't expecting THIS to show up. I quickly look up the event on my phone.

Ooooops.

"It's tomorrow," I tell my husband. "I thought today was the 21st." Heavy sigh from the driver's seat. "It's okay," he says. "Let's just grab some food and head back."

Deflated in the backseat, I remember three years ago when we were at the park in our own town for the 4th of July festivities (my first blog post was a result of that night) - there was a dog park in there. I suggest it to John and he agrees it's a suitable backup plan. Phew.

An hour and a half after leaving home, we make it to the dog park that is 10 minutes from our house. Biscuits is in heaven! And Ella seems to be enjoying herself as well. People are surprisingly friendly and talkative with us. After all, you never know how you will be received when you're wheeling around your "special" child with so much stuff hanging off her chair it resembles the Clampett's move to Beverly Hills. But it was nice. Really nice.

Sitting around the house for hours on end isn't good for anyone. It may take a little more forethought, planning and effort to make a family outing happen, but it's necessary for all of us. When you have a special child, especially a medically fragile one, EVERYTHING is a little more difficult - even the fun stuff. It's simply another reality that we have to accept and move on with our lives.

Ella enjoying her day out at the dog park.

Where Did Everyone Go?

There's an amazing group for special needs families in the Atlanta area called FOCUS (Families Of Children Under Stress). They provide a myriad of resources, activities and support for families like mine.

We have attended a few events they offer for medically fragile children, but most often they visit us in the hospital. During one visit back in January, I was having a rough day. The isolation that this life can bring sometimes hits you like a ton of bricks. Sitting in a hospital room for weeks on end by yourself can bring you down, though I try and keep myself busy and not have too many pity parties. On this day I was having a party, and my friend from FOCUS suggested I write about it. So I did.

The article was published in their May-June 2012 newsletter: http://www.focus-ga.org/wp-content/uploads/2012/05/2012.may-june-newsletter.pdf

It was by no means meant to hurt anyone's feelings, or make anyone feel guilty. It is simply the truth about how I sometimes feel, and I think a lot of parents in our situation feel, and I wanted to write about it because the FOCUS newsletter is primarily meant as a resource for parents and it's encouraging to know that you are not alone.

Since the goal of this blog is to bring insight into what our lives are like, I decided to include the article here.

Thank you, Mr. Santorum

Some of you may be aware that Republican presidential candidate Rick Santorum has a three year old daughter, Bella, with special needs. She has Trisomy 18, which is a genetic condition caused by the presence of all or part of an extra 18th chromosome. He has described her health as "always quite frail and unexpected" and talked about how "one cold" can make her gravely ill.

Sounds familiar.

Recently in a web video released by his campaign, Mr. Santorum said, "I look at the simplicity and love she emits and it's clear to me we're the disabled ones."

This resonated with me. Big time.

There are a lot of things Ella can't do that she *should*. She can't talk. She can't walk. She can't even eat by mouth. She requires a tracheotomy to maintain her respiratory status, a feeding tube for her nutrition, and, most recently, had a vesicostomy placed to keep her bladder drained in an effort to reduce urinary tract infections. At nearly four years old, there isn't really anything she can do for herself.

But within her disability lies amazing abilities that typical people - the "we're" that Mr. Santorum refers to in his quote - can not achieve.

She can truly love unconditionally.

She can charm even the hardest heart with a single smile.

She is often the ONLY thing in this world that can bring a smile to my face in the darkest of times.

She has the ability to make people fall in love with her at first sight. I have seen it over and over again. They may not remember me, but no one ever seems to forget Ella. I have witnessed the amazing effect she has on seemingly everyone so many times. She continues to amaze me every day.

Getting back to what she can't do, there are things that seem to be second nature to typically-abled people that I am grateful she doesn't have the ability to do.

She could never hurt your feelings, or make you feel bad.

She could never physically harm another person, nor does she have the ability to want to.

She has been through more physically in her almost four years than most people will endure in a lifetime: surgeries, examinations, therapies, procedures, illnesses, and endless poking and prodding. Though she may feel pain in a moment, she does not have the ability to carry that with her. She doesn't have the ability to remember or to become bitter. Or to feel sorry for herself.

How amazing is that?

So yes, Mr. Santorum. I completely agree. It is certainly clear to me who the disabled ones are, and we can learn an awful lot from people with disabilities.