About Alisha

I am a full-time Title One preschool teacher at a school for children with special needs. I do love my job, but my true passion is being a mother to one most amazing little girl. I feel that is my true purpose in life, and I would like to educate anyone and everyone I can about her. My daughter Emarie was born on the early morning hours of Christmas Eve 2007, and changed my life for good. For better. She was diagnosed 2 weeks after her birth with the rare chromosome abnormality of 18q deletion syndrome. It is so rare, that not even any of her doctors here in our state of Utah know much about it, or have ever seen it. I knew from the moment that her personality started to show around 2 or 3 months, which is always happy, that she could be someone to change the world. I'm doing everything in my power to help her along the way. She is so amazingly resilient that it just blows me away! She will have undergone 12 surgeries before she even reaches three years of age. Her dad and I love her endlessly and are doing everything in our power to give her the best life possible!

A Glimpse at a Different Family

(Guest Contributor Alisha Marie Peters – Alisha blogs at The Moments That Change Everything)

Being a parent of a special needs child, I know that people often wonder about us. I know that we are often looked at with pity, and this saddens me the most, because we are in on “the secret”…. having these special little souls we’ve been lucky enough to raise has given us an inside scoop on the meaning of  what life is really all about.

Sure it’s hard sometimes, because there are certain things that definitely set us apart from “typical” families….

We spend our money on very different things- therapy, medications, medical equipment, adaptations to our homes and vehicles, special food (formula), countless medical bills!

Taking a trip anywhere is very different…. especially vacations. And I could never dream to take a vacation somewhere with my husband and leave my girl with someone. Couldn’t expect anyone to do the stuff we do…. administering her dozen or so medications everyday, including one by injection. Making her special formula and prepping it for her g-tube because she can’t eat much by mouth and is severely allergic to a lot of foods. And heaven forbid if that tube comes out of her stomach (and unfortunately it does… a lot!), her dad and I are the only ones who have ever replaced it. And then there’s the worry that something would go wrong- when she gets sick… it’s different…. a lot of the time she needs a hospital stay… But we do take vacations…. we just take our girl and half our home with us!

We see our kids get left out a lot…. but that’s why we try harder to make up for that.

But we have learned to appreciate things a lot more. Sure all parents are excited when their kids hit certain milestones, but for us, when a lot of us have been told that there’s a chance our kids might not do these things… then it’s like moving mountains to us.

We also appreciate every moment of every day, because a lot of us don’t know how much time we’ll have with these precious kids. Every day truly is a miracle.

My daughter makes life easier with her attitude. She is honestly the happiest child I have ever known, and being in the education field, that is really saying something! It is remarkable to me that despite the fact that she goes through way more than most would in a lifetime, she still has the best attitude imaginable! Makes it that much easier for me to have a good attitude too.

So, yes we are different from most families….

But, as you can see we’ve come to the conclusion that different is not so bad!

About Guest Blogger

 

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

Just a little girl

(Guest post by Alisha Marie Peters – Alisha blogs at The Moments That Change Everything)

I know this blog’s mission is to empower difference, which I am all for… but at the same time; I’m starting to see that my girl is so much like any other 3-year-old girl in so many ways.

Don’t get me wrong, she is different in a lot of ways, but the beauty is, I don’t think she sees that yet. And just this once, I’m not going to focus on what makes her different, even though I love all of her. I’m so proud of who she is and all that she’s accomplished with so much stacked against her, and I really hope she grows up knowing that. And that she embraces who she is, all of who she is, and knows how truly amazing she really is.

But, this time I want to let the world know that in most aspects, my girl is just like yours.

But really, just in the last little while I’ve seen enormous strides in her development, and I’m seeing just a 3 year old girl… just that, a little girl doing things that all little girls do. She hates having her hair done. She loves her independence. She loves school and all her friends there. She is a daddy’s girl through and through. She loves dolls and Minnie Mouse. She laughs at things that are funny, some that I’m even surprised she gets! She loves attention, but at the same time can be really shy until she really gets to know someone. She doesn’t really care for goodbyes. She can throw some amazing diva-esc temper tantrums over not getting her way! And she has an attitude that is much bigger than she is!

And the thing that inspired this whole post, she loves… and I can’t stress that word enough, loves Tangled!! She got it for Easter, and I’m sure has watched it entirely through over 20 times in that short week and a half. She loves the whole thing, but definitely has her favorite parts and songs. Now you may not understand why I think this is such a big thing, or why I’m happy about it. But you see this is something that I thought would never happen for my little girl. I would hear people complain about having to watch this show or that over and over, and secretly I would think how lucky they were that their child had made such an important connection. And I’ll admit that I wasn’t sure if mine ever would.

So yes, I’m “Tangled out” I guess you could say, but I’m so, so happy…. Ecstatic really. I love that she is just a girl some days. She’s a happy, always smiling, wanting her way kind of girl. Didn’t I just describe every 3-year-old diva in America??

Em laying on her butterfly pillow with her favorite doll, watching Tangled

{Like this post? Feel free to “like” it below and share with your Facebook Friends by pressing here! Thanks y’all -Camilla}

About Guest Blogger

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

The Importance of a Friend

(Guest post by Alisha Marie Peters – Alisha blogs at The Moments That Change Everything)

I am a regular mom in many aspects. The biggest being that I worry about my child constantly. Most who know my daughter would probably think I worry about her health, her well being, her never-ending surgeries, and of course I worry about those things. How could I not? But, those who know her, also know that she is probably one of the strongest, most resilient children to ever grace this planet. So those things don’t threaten my thoughts as much as the looming question of, will she have friends?

I don’t have to tell most of you that survived junior high and high school how vital good friendship really is. In fact, most of us thrived on it in those awkward and relentless years.

A good friend can make you laugh at even the most unlikely of times. They can pick you up when you are down, be a shoulder to cry on and a source of advice when you need it the most. And I worry that my daughter will not have this. Why? Because unbeknownst to her, she has been ostracized already, and not just once or twice. She has already been seen as “different” to some of her peers, and it literally shattered my heart. I worry about the day that it will affect her the same way. It baffles my mind that anyone can see her as anything other than how her parents see her- perfect, beautiful, sweet, loving and endlessly happy. I wouldn’t change anything about her, right down to her missing DNA 😉

But, wonderful friends are everywhere. And thanks to the Chromosome 18 Registry and Research Society, we have been connected with families all over the world who like us, have children as unique as ours.

That is also the beauty of the annual Chromosome 18 conferences, where you get to physically meet these families. Where our daughter can feel at home, and just like any other kid. There’s no judgment or criticism, just accepting and happy, loving friends.

Here are some of the friends we’ve met along the way.

Our family is eternally grateful for the connections we have made through the Registry!

Taught So Much By Someone So Little!

(Guest post by Alisha Marie Peters – Alisha blogs at The Moments That Change Everything)

Happy Girl!!

Just her attitude, nothing unordinary at all, other than the 15 lb body cast!

I like my fellow contributors have thought long and hard about what my first post should entail. Unfortunately, I haven’t had much time to say exactly what I want. But it’s a start, and I promise next time will be better!

I have always thought of myself as a very accepting person. Accepting of differences, of mistakes, of anything really. My background taught me as much. Mostly that what happens to you does not define you, but it does help you in who you are. All things that happen to us can be either good or bad, but we can always learn lessons, and no matter what, our attitude about things is the key.

Most would probably say that I have had a difficult time in life, and I don’t necessarily disagree with that. It has taken me over 25 years to realize that my attitude toward everything is entirely up to me. And yes I could be mad and sad about everything, but I don’t want to be. No one has taught me better about this than my daughter. She has had it harder than anyone I know. With a total of 10 surgeries by the age of 2 1/2 and most likely 2 more before her third birthday, she has endured much more than anyone should in a lifetime.

Emarie does not complain about anything ever. And I really think, how can I complain or be upset about anything when she never is? The one whom everything directly affects. And she doesn’t just take it in stride either, she takes everything with a smile and a giggle :)

Here’s just a little example. This video was taken after her 10th surgery, which was the biggest and most elaborate surgery yet. It was a hip surgery to correct a displaysia she was born with. She had to be in a 3/4 body cast otherwise known as a “Spica” for close to 6 weeks. This little girl was happy and smiling the entire duration of the cast.

Happy Feet, or Rather, Anything I Can Wiggle!

I think we can all learn something from this most amazing little girl who is still shy of her third birthday!