Stoll Life

July 27, 2010

Choices

Filed under: Family, Personal — Tags: , , , — Tara @ 1:40 pm

I re-visit that day often. When I’m feeling low…or wondering “why us?”… I go back to that day, and I remember that lovely couple.

We attended a “New Parent Breakfast” hosted by the Down Syndrome Guild in our community. A chance to come together, learn from veterans of this seemingly awful hand we’d been dealt, and perhaps feel sorry for ourselves.

All the parents were in a circle, sharing. I cried a lot. Then it was her turn to speak, and she lit up the room. I felt so humbled by her words. “We adopted her,” the petite woman said proudly. This tiny bundle she held…feeding tube, Down syndrome and all…was a choice for them. They chose this baby; they chose this life. How dare I feel sorry for myself?

This was a huge turning point in my thinking and perspective on things.

I recently learned that same beautiful couple just adopted another child with Down syndrome–a little boy this time. Another beautiful choice.

I sometimes still have those moments. Those “Down days”, as I call them. Very often, all I need to do is think back to this couple and their grace.

The choice to have a child with a disability wasn’t mine, and I’m thankful for that. Sometimes we wouldn’t choose what is best for us, right? Olivia is a beautiful child with much to teach, and I have learned. Boy, have I learned!

I feel this couple could teach the world a thing or two as well.

If you ever feel compelled to adopt a child in need, please visit Reece’s Rainbow.

July 9, 2010

Independence

Filed under: Family, Personal — Tags: , , , , , — Tara @ 11:23 pm

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The 4th of July has come and gone for 2010, but as I lie in bed and hear the pops and crackles of residual fireworks, I can’t help but think about Independence Day…and what it means to the Stolls these days.

From the moment the words “Down syndrome” were uttered, becoming a permanent part of our lives, my biggest worry for Olivia (after physical health) has been independence. Will she go to a typical school? Will she be able to hold down a job? Can she live on her own? CAN SHE TAKE CARE OF HERSELF?

Through time, research, and support from other mothers, I have found that the answer to all these questions is a resounding “yes”! As long as Liv is taught and we believe in her abilities, just as we do Amelia, she will be an independent and responsible adult. I firmly believe that we get out of our children what we expect from them. If we were to baby Olivia as she grows older, not expecting her to learn proper social behavior, well…she wouldn’t, would she? The same goes for responsibility. And so, this is our goal. For both our girls.

Independence.

We are born into a land where our forefathers fought for our freedom and independence. We take it for granted, don’t we? Yes, we do. And then there’s that moment that you have a child with special needs, or you encounter a disability yourself, and guess what happens? Freedom and independence mean something different. They become these things that you try so hard to reach out and grab, but they just might get away. Just out of reach. Or you have to rely on someone else to do simple life tasks. And you envy the carefree neighbor down the street; or you wonder “why is it so hard for my child to have this seemingly disposable civil liberty?”

The truth is, I write about independence tonight, because I fear Olivia will never earn it. And as a person with a disability, she must earn it, right? She’s not born with it like our typical kids. She has to prove herself. It may not be fair, but it’s the truth in her life.

And, as I’m learning about her future and finances and how we can plan ahead…my fear only grows.

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I realize she’s still a baby. And I realize we will learn. And I know everything will work out for the best.

BUT…

Here we are. Teaching her to be independent and then being told we should plan for her future as though she won’t be. I’m not sure how comfortable I am with this. But I know I want her to be safe and happy no matter what happens. And as parents, it’s our job to make sure of that. In that alone, she will know independence and freedom. And so will we.

July 5, 2010

A different perspective.

Filed under: Family, Personal — Tags: , — Tara @ 10:32 pm

I write about “perspective” a lot, because more than anything else in my life, my perspective on it changed entirely after Olivia entered our lives. And even still today…22 months later…my perspective seems to shift from time-to-time.

In a nutshell, I feel like I put on a pair of glasses, and I can see so much clearer.

I have always been a fan of John Lennon. But until recently, I didn’t truly get the meaning of his infamous quote: “Life is what happens to you when you’re busy making other plans.” This message is so profound to me now.

The truth is, I’m still getting used to this seat. And sitting here, I’ve experienced surprise and tears, heartache and fear…but so many smiles, and so much happiness.

I see the plight of others more clearly, no matter what they suffer. But perhaps more importantly, I realize that just because someone has a so-called “plight” and seems to “suffer” doesn’t mean they’re not happy; that their lives aren’t amazing. Rather, they are simply on a journey called life–just like me and my family. You see, I realize now that  events in our lives aren’t goals or end results. Instead, our events make up our lives. And how we choose to accept things we have no control over; how we choose to live our lives…THAT is what life is all about.

I’m more patient now. With people and situations. After all, in the scheme of things, how will yelling at a red stoplight get you any further? And how will holding a grudge against someone make things better?

I feel so blessed to see things in a different way. And I have often said that I wish all my friends could share this view on life. It truly is a gift.DSC_0316

The Stolls are learning and loving and laughing more than ever before, and it’s amazing how one little girl is making all that possible.

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June 28, 2010

Time

Filed under: Family, Personal — Tara @ 10:01 pm

I suspect my mother was ACTUALLY right when she said, “Enjoy every moment; they grow up so fast.”

Amelia turns 5-years-old in a matter of days. I remember rocking her when she was 5 days old, tears rolling down my face. Part of it was hormones. Part of it was the simple realization that she would leave one day; that someday she would no longer need me.

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And now she will be 5. And she is learning to swim. And she has her own motorcycle helmet to ride with her daddy. And she can spell her name (it is so beautiful to watch her write it). She amazes me daily with her intelligence and attitude, and time has taught me that although she needs me less and less each day…she will always be my precious girl.

Olivia turns 2-years-old in a couple months. At 2 days, I sat with her…tears rolling down. Part of it was hormones. Most of it was the realization that she may never leave one day; that someday she might be left alone with no one to care for her.

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And now she is nearly 2. And she is learning to walk. And she laughs and sings and dances. Olivia amazes me every day, and time has taught me that while she will need me for a long time, she will not need me forever, and she will live an amazing, independent life.

Time is strange. I consider it my friendliest enemy. Or is it my greediest friend? Either way, its passing is bittersweet.

This allotment I’m allowed…this stretch of existence…it allows me a welcomed peace, but it will eventually strip me of my most precious moments.

No matter my thoughts on time, I can’t change it and probably wouldn’t want to. Stopping time would only stop progress. Speeding it up would just deprive me.

It is what it is, and, like my mother says, I will do my best to “enjoy it while it lasts.”

June 22, 2010

Fractures and sunburns and new braces…oh my!

Filed under: Family — Tara @ 9:36 pm

I haven’t felt inspired to blog in a while. Actually, I think the summer drains me of most writing ability. Something about yearning to be outside and enjoying the activities that go along with it…I don’t know.

Summertime activities have brought the Stolls many blessings…but a few “boo-boos” too, as Amelia would say. And that brings me to tonight’s entry.

I recently had the bright idea to become a runner. Ha! Reading that back makes me laugh. Nonetheless, I was doing really well. Turns out, my body wasn’t. I stress-fractured my leg while running. No cool story. Just running. So now I have to rest it for 6-8 weeks. Ha! (again, let’s share a laugh.) How does a mother of two little ones stay off her leg? So I plan to limp around for a few weeks, then get back to running. (Please don’t laugh here.)

I’m not the only one with a “boo-boo”. We’ve all had sunburns lately. Common, right? Poor Eric has a peeling forehead, and Livie looks like Spot the dog with one sun-burned eye.

Amelia seems to be the only one who hasn’t suffered a physical ailment this summer, although she is having a hard time adjusting to life without pre-school. Many a morning has been spent reassuring her that I will be back to pick her up from daycare and that I will miss her, too. This too shall pass.

We found out at Liv’s latest therapy session that after only four months of wear, she has already grown out of her SMOs (ankle braces)! So we have to get a new pair. It’s strange to feel so happy that she’s growing so well…yet so sad that she’s growing up.

Yep, summer is always eventful for the Stolls. All of our birthdays are in the summer, except Liv who is a September baby. Then there’s Father’s Day and other family birthdays. Not to mention mini-vacations and typical summertime activities. But this summer seems to have brought a little something extra…and…didn’t it just start??

June 14, 2010

That’s typical

Filed under: Uncategorized — Tags: , — Tara @ 10:11 pm

I haven’t felt like the Stolls are a typical family since September 6, 2008. I haven’t cared, really. I mean…Eric and I have never been what you would call “normal”.  :)  In fact, the day Liv was born, Eric said to me, “When have we ever done anything ‘normally’ or the easy way?” Well, okay, but this wasn’t exactly what I had in mind…

Typical or not, we are REAL. We love, laugh, and cry. We go on weekend excursions, trips to Chuck-E-Cheese’s, and have backyard cookouts. We have playdates, work full-time, and go to daycare. Wait…that sounds pretty typical, doesn’t it?

I worry a bit about perceptions of the Stolls. When we’re out and about, I fear stares or comments. Around Easter, I took the girls to the mall to see the Easter Bunny and to let them play in the kids area. A little girl, probably 6 or 7, was staring at Liv as she played. She followed her around some and studied her with a furrowed brow. Before long, she bounced over to her father, and I did my best to eavesdrop. I just knew she was going to make a comment about Olivia’s differences. I feared I would hear, “Dad, she looks funny.” Instead I heard, “Daddy, babies don’t wear glasses!” I’m sure relief was written all over my face, and I smiled as her dad replied, “Sure they do. I wore glasses as a baby.” DSC_0046

So are we typical? I don’t know… It seems like most people think so when they see us, despite my paranoia. Are we different? I hope so… I think differences are what make the human race wonderful. Are we blessed? Absolutely. And that’s all that matters…Really.

June 7, 2010

Love/hate

Filed under: Personal — Tags: , , , — Tara @ 8:02 pm

I used to hate it. I hated what it did to our family. I hated the way it made me feel…the way it made everyone around us uncomfortable. I imagined them thinking, “Poor family” or “What do I say?”

I hated how everything that seemed “wrong” with our lives was blamed on it. Somehow having a cold or a bad day at work would always circle back around. And the scapegoat was always Down syndrome.

Even these days, if Liv gets sick, my first thought is often, “It’s because she has Ds.” I can’t tell you how many hours I’ve spent on WebMD searching for something wrong with her. Is it Celiac Disease? Reflux? No, no…it’s just the flu. Kids get the flu, remember?

It’s getting better every day. I don’t necessarily blame Down syndrome anymore when I hit too many stoplights on my way to work, or when I have to clean up Cosmo’s doggy mess from the carpet.

In fact, I love what Down syndrome has done for me and our family. Where there was love, there is more. It has created compassion and conversation; understanding and uniqueness. And I don’t hate that. ;) Liv in glasses big smile

May 28, 2010

P is for “purple”!

Filed under: Family, Personal — Tags: , — Tara @ 7:19 pm

Repetition, repetition, repetition…

Children with Down syndrome learn at a slower pace, so it’s important to repeat. A lot. Got it.

Children with Ds learn at a slower pace, so it’s important to speak more slowly for them. Ok. Got it.

In Olivia’s bath last night, I took the letter P…you know…those bathtime spongy letters? I took that purple P and stuck it to the tile wall to show her that those spongy little suckers are more than just for chewing on. She was enamored, and it became a game: take it down, stick it back up, down, up. Fun, right? And since she likes it so well, let’s use this to learn! Got it.

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Fast forward to tonight’s bath. I hadn’t gotten to our new learning game yet, and without warning, Liv picks up the purple P and sweetly presses it to the tile…the same exact spot as I did only 24 hours before.

Yay! “P is for purple!”, I say, through my happy tears.

Obviously, Livie needs to remind ME of her greatness. Repetition, repetition, repetition…

Keep going, Liv. I’m getting it.

May 26, 2010

Somewhere…

Filed under: Personal — Tara @ 7:36 pm

Somewhere in a room, a new mother cries. Just down the hall, another does the same…Both for different reasons.

Somewhere in a doctor’s office, a new baby gets measured. Just down the hall, a new mother learns her baby doesn’t measure up.

Somewhere on a playground, a child learns to climb up the slide. Just across the yard, a child struggles.

Somewhere in a house, a child gets invited to a birthday party. Just down the block, a mother discovers her child wasn’t.

Somewhere on a road, a teenager takes his driver’s test. Just across town, a mother wonders if her teen will ever drive.

Somewhere in a house, a young man gets an acceptance letter to the college of his dreams. In another house, his classmate wonders if any college would welcome him.

Somewhere in a church, a woman marries her true love. Sitting in the congregation, a young woman prays she will find hers someday.

Somewhere…

May 24, 2010

A rare flower indeed.

Filed under: Personal — Tags: — Tara @ 8:14 pm

There I was, listening to some Coldplay, when it fell directly into my lap. I think the Universe knew I was having a difficult time coming up with an idea for my blog. Especially today. Writer’s block? Maybe. Meant to be? For sure.

A lovely email filled my inbox with sunshine today, and if that sounds cheesy, so be it, because a more lovely friend hit “send”, virtually making my day.

Here’s an excerpt:

I was working in my flowers, and that always makes me happy, but while I was pulling some pesky little bunches of clover it made me remember how my sister, Amber, and I used to search, painstakingly, in hopes of finding a 4 leaf clover. We knew that if we could find a clover with one extra leaf that it would bring us good luck:-) I’m not sure how much time we spent in the summer, down on the ground, searching. LOL! That made me think of how you were blessed, or by 4 leaf clover standards -lucky to have Olivia with her extra chromosome.

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I don’t think any further explanation is in order. Just a ‘thank you’. So, thank you, Tammy, for your beautiful story and analogy.


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