(Un) Parallel World

Do you ever feel like you're living in the same world as everyone else, yet it seems like you're on a different path?  That's how I feel sometimes.

Don't get me wrong. I'm happy with who we are and the path that we're on. But there are some days that I just want someone to say "I get it."  And actually get it.

I have great friends and great family. But sometimes I feel like I'm in this dream world while they're out there living in reality. I watch as they are out and about with their families enjoying the fall season (or whatever season we're in) and I am sometimes wishing that I can be in that reality too. Without having to worry about wheelchair accessibility. Or tube feedings. Or spitting/throwing up. Or where to change a 13 year old's diaper.

I guess I'm a little bit envious. Jealous. Whatever you want to call it. I am. I think it's perfectly natural to feel that way.

BUT......

I am also thankful.  In actuality, my dream world is OUR reality. And I love our life. The wheelchair. The tube feeds. The throwing up-not so much. The diapers.....sometimes. I have a glimpse of a different world that not too many get to see. I have met many families with many more obstacles to overcome. They are the ones who have walked in my shoes and truly "get it".  Social media can sometimes be my enemy, but through it I have been introduced to so many families with similar struggles and have come to care for so many kids (and their moms)  that I don't even personally know.  I WILL overcome the obstacles we have in order to provide my family a wonderful life. Because in the end that's what really matters. Them.

Where Did Summer Go?

I can't believe it's the end of the summer. Didn't school just let out?  We've already gotten our school supplies bought & kids are registered. I can't possibly have a second grader & an eighth grader (sort of).

I just figured out that I am THAT mom. The kind who has laid out plans in May for the absolute PERFECT summer. Play dates, pool time, vacation, zoo trips, day trips, & summer camp outs. Yea. Only about 25% of that actually became reality. Because life gets in the way. Work gets in the way. Weather gets in the way. We are all just people who do the best with what we've been given. Our kids don't think we're bad parents. If fact, if you can accomplish even 10% of your perfect world, they think we're pretty wonderful.

Try to remember it's not always the 'big' things that they look forward to. It's the small ones too. I'm sure Kyle & Michael formed some pretty awesome memories on their 6 mile bike rides together this year. And David will be happy with a big kiss and some tickle time.

I still have one last big hurrah planned for Kyle before school starts. Just an overnight trip with a good friend & her son. But to the boys going on the trip, they will think it's like a trip to Disney World.

I have to start remembering to live life knowing that sometimes all the big things in this world aren't so different from the little ones. Especially in the mind of children. To them, a memory is a memory. Big or small.

Brothers

"You know when you and daddy die, I will take really good care of David for you"~Kyle Matthew. July 23rd, 2013. Out of the clear blue while at work with me.

A moment in time that I won't quickly forget. Those words made my heart sink. They made my heart swell. They made my heart race.

No one ever wants to think of leaving their children alone in this world. Unfortunately, that's most often the case. It is nature. It sadly may not always be the case though.

We have no official diagnosis for David. Which means we really don't know what his future holds. He does have a weaker immune system & gets hit harder with most illnesses than a person with a normal immune system. While he could be taken from us before we leave this earth because of this, he could also live a very long life long after we're gone. I've seen him when he's sick. He's a fighter.

Either situation makes me sad. I will always keep David in my care for as long as I possibly can handle him. I know that Michael & I know him so well & can give him the best care as long as he is with us. It's because we love him so much. But what happens when we're gone?? It's crossed my mind. We discuss it occasionally behind closed doors at night because we would never want to worry Kyle at age 7 with such things. We both agree that it would never be fair for Kyle (or his wife & children) to take David into their home one day. Which means that David will have to be somewhere where he can be taken care of.

Obviously, Kyle has thought of things of this nature. I am so proud of him. I hope he knows that I want him to be able to make a life for himself and eventually his family. Eventually, we will have to have this discussion with a Kyle who is mature enough to realize that we want him to be able to have a life that is his own, but the knowledge to be able to make loving and caring decisions regarding his brother. I want him to teach his own children about his brother & not to be afraid of people who are different in the world. I have so much love for Kyle when, at age 7, he can utter the words that he did to me today. I know he sees David as part of his future. I love these two brothers.

Life begins and ends with family :)

*Pictures done by TeriLyn Lifestyle Photography

https://www.facebook.com/TeriLynLifestylePhotography

Growing Up

Tomorrow my baby turns 7.

How? I don't even know how it happened. One second he was an infant. Then a toddler. Then he went to school. It went so fast. Second grade is right around the corner for him. And us.

Even though he's my youngest, he has given me many many firsts as a Mommy. Seeing one of my kids walk for the first time. Feeding himself was huge. Riding a bike. Those little things I have never experienced before.

And most recently-as of tonight-waiting for an X-Ray to show if he had any broken bones in his foot. Because he "fell" off the high bar on the playground at school. Yup. God gave me your All-American typical little boy. Always busy and not afraid of much.

I can't imagine my world without him in it.

Happy 7th birthday tomorrow, Kyle Matthew.  You filled a huge hole in my heart and I hope you know how much you mean to us!

PS-X-Rays came back ok. Just bruised it pretty good!

Perfection?

I was feeling rather brave today. I went to work with both kids. Then, since I must've been feeling lucky, I took them both to the grocery store with me. Now, this is something that rarely happens. I usually wait and go on a day Michael's off. Just the thought of dragging the wheelchair in and relying on a 6 year old to guide it smoothly through the store is terrifying on some days.

But today we did it. And it went pretty well. Kyle's little head can barely see over the David, but he got the job done without injuring another human being or knocking over displays of baked goods.

Along the way, I noticed that we had seen the same older woman in several of the aisles. She approached me as I was getting ready to head to the check out lane. She thought she had never seen such a perfect family. And well behaved children. As I looked over my shoulder to see who she was speaking to, I realized it was me! Such a nice compliment. But she only got to see a 5 minute glimpse (and must've missed us in the toy section as Kyle was racing down the lego aisle at top speed with me yelling at him to slow down) in what can only be a life called anything but "perfect".

Oh, I had great intentions of being just that when I had kids. All sunshine and roses. Then the children actually came into my life. Perfection went right out the window.

Now, I obviously have 2 kids. They're both boys. But their similarities really end there. David has exceptional needs. And Kyle's are more typical. Hence two completely different ways that I can go perfectly WRONG!

In the last two days I can think of several things that would have gone right if I had been perfect.

Some of my special needs imperfections:
David wears braces on his perfectly imperfect feet to keep them from turning out. He SHOULD wear them all the time. Yesterday we weren't feeling it.

Schedule is very important to a kid like David. He thrives on it. It's spring break. Schedule Smhedule.

I thought things were going well when we left the house this morning. His braces were on. He was looking cute. Diaper bag was packed. Or maybe not. I learned the very hard way that there were no baby wipes in that bag. Oops.

Or forgetting the extension in the drainer of the sink at home. Now this extension is David's lifeline to food. Luckily, we keep extras in a small backpack that is always on the wheelchair. (Because guess what? We've done this before!)

A few of my typical imperfections:
Last night Kyle went to a movie with a friend. Came home. Michael and I had tacos for dinner. Kyle had a tortilla. I figured he was full from his popcorn appetizer.

This morning his attitude was a little too much for me. He was grounded from video games. I forgot. He's playing Star Wars as I type this.

Yes. We watch Spongebob in this house. He taught Kyle what condemned means. LOL. Sometimes I just need 30-60 minutes of time in this house where he's not asking me questions.

And one last "typical" imperfection as parent. Bribery. If you've never used it to try to get your child to do something necessary, you really may be perfect.

With all of my imperfections though, one thing I know for sure is that they are both loved to an extreme. They give me reason to smile. They are our world.

Tomorrow

Tomorrow you turn 13.

It boggles my mind that 13 years have gone by with you. We have honestly had the best of times and the worst of times in these years. You made me a mom. Then you made me a mom of a special needs child. Most people probably don't use the word "lucky" to describe us. I would. We are lucky to have had the opportunity to love you. You don't know you're turning 13. You don't know that you can't have cake or ice cream to celebrate. But we celebrate you. You are so special to us.

To me, you equal home. I know wherever you are, I will be also. You have filled my heart with the power to love someone so wholly without having you return the words I would love to hear from you. But you have shown me with your beautiful smile. Almost every day of your life. Your innocence is splendid. Your heart knows no hurt. I wish that for so many people and such a select few get that chance.

I think one of the best quotes that could be associated with us and our love for you would be this:

"One of the happiest moments ever is when you find the courage to let go of what you can't change."

We have 100% done this and accepted you for you and what God wanted you to be. A light to touch so may peoples' hearts.

Happy Birthday, David Webb. We love you to the moon and back.

A Village

We've all heard the saying "It takes a village".  This week I have found the true meaning in that for our family.

My sister sells Gold Canyon Candles. She has for a long time now. Gold Canyon supports The Prayer Child Foundation, which help children with medical costs and/or necessities. David was a recipient of theirs back in 2008 when we got his sleep safe bed. Mandy and I had recently been discussing my hopes to one day get David a push chair (a lightweight stroller designed for handicapped children). His wheelchair is very difficult to lift in and out of the van. We do not have a lift van or a ramp to get David's wheelchair into the car. David still rides in an adolescent car seat, which I believe is the safest way to transport him at this point. Which means we lift David into the van and then the wheelchair gets hefted into the back. Anyway, Christmas morning, David had a special gift under the tree from The Prayer Child Foundation. Mandy had nominated him for assistance towards a push chair and they blessed us with a $750 check. The chairs that I've looked at cost anywhere between $2500-$4000, so this was a wonderful start to a push chair fund for him!

After Christmas, Mandy still wanted to help us raise more funds. She decided to host a candle party and give David 100% of her commission to put into his fund. Her goal was to have enough sales to get us another $250. We both posted the event on Facebook and had several people order online. My friends, who don't always have a lot of extra to give, rallied behind us by sharing the link time after time or getting their family members to place orders. I had someone from high school send me a check for $100 (which had me in absolute tears of appreciation and joy). Another friend ordered candles and wrote her check over and told me to keep the difference. I was overwhelmed.

I posted yesterday that it was the last day to place an order, and then had another surplus of orders and sharing the link again. I learned a lot about the people that I have met in our small community. They really supported us in this. My heart was warmed and it made me joyful.

My friend has an organization set up in her daughter's honor (who suffers from a rare, terminal brain disease called Batten's Disease) called Mabel's Able. She texted me yesterday to let me know that Mabel's Able would like to match the commission earned by my sister's candle sales. I cried. It's been an emotional whirlwind of a week. Please go on Facebook and learn more about Mabel and children with other rare or unknown disease.  You can look them up under Mabel's Able. Please like their page to support all of these kids.

I hate asking for help. I don't like feeling helpless. But from the bottom of my heart, I want to say thank you to all that ordered, or shared, or got other orders from family, or just donated. It is purely overwhelming to know that we have our very own "village".

PS-We surpassed our goal by over $200. And that does not include the donations that came in :)