I want to walk mommy

"I want to walk mommy."  5 little words.  They seem so simple, but when you put them together they are so powerful.  When your child is 27 months old and is paralyzed, these words are very powerful and heartbreaking.

I knew that one day, Isaac would notice something about walking.  I wasn't sure how he would interpret it, but I knew he would.  As a mother with a child with a disability, I don't think there is really any way to prepare or rehearse for these questions.  I do not sit and ponder what I will say to him, I just let my heart answer, and that is what happened the other day; the first time Isaac asked me one of the "tough" questions.

We were getting ready to drop Gabe off at school and I asked Isaac if he wanted the stroller or wheels.  He didn't respond with his usual, "I wants my wheels."  His respond was plain as day."I want to walk mommy."

I want to walk.  

It hit me like a ton of bricks and in an instant my mind flooded with responses.  For a brief moment I thought I might break down into a flood of tears, but something stopped me.  An answer quickly came to me and I strongly replied, "You will someday baby.  One day, you will."  I am certain the Holy Spirit took over my words at that moment and helped guide me to say what I needed to believe and what he needed to hear because when I really think about what Isaac said, it breaks my heart knowing that right now, it's not possible.

You see, ever since Isaac was a baby and I knew in my heart and mind, that he would need a wheelchair, but I also had this fire in me.  It was a strong belief that I knew that Isaac would walk someday.  I knew it might not be for awhile, but it would happen.  I believe in God's healing miracles.  He could heal Isaac at any moment if that is His will.  I do also believe that He will guide modern medicine to find ways to help those with paralysis.  But somehow over the past year, I have somehow suppressed these strong feelings and allowed acceptance into my heart.  I don't think it has been a bad thing at all to allow acceptance.   In fact it has been a gift. This was a true acceptance of his abilities to wheel to crawl, and it was also an acceptance that he may never walk.  It gave me peace that I now know his life will be fulfilling whether he walks or not.  He had already proven that he has a lot more going on that will get him far in life whether he walks or not.  For example, this kid has a killer personality and amazes me with the words that come out of his mouth.  He charms people but he also knows exactly what he wants and is not afraid to tell anyone.  He is compassionate and loving and so cuddly.  His confidence and love for life is what will bring him success.  His trust in God and love of people will move mountains.  So this acceptance of a wheelchair was very important for me.  Allowing acceptance has been an integral part of my journey.

But now, I am reminded, of the fire inside me.  The prayerful days for miracles and the true belief that anything is possible with God, must return to my heart.  Isaac did not say, Why can't I walk.  He said, I want to walk.  Isaac does not see that he can't do it.  He just knows that he wants to.  And I will add, this child is determine to have exactly what he wants.

So today, I step forward in trusting God's plan.  I do believe that each one of us has a special plan to help the world become a better, more loving place.  I have witnessed God's love so much through others because of Isaac.  Now I know it is time, to listen to the Holy Spirit and help make a difference, so that when God is ready to help Isaac walk, we will be ready.

I now have the go ahead from Isaac.... He is ready.  He wants to walk and I know, someday he will!

That was fast

Earlier today, I posted about the new Guinness commercial, showing a group of grown men playing wheelchair basketball.  After an intense game, all the men, except one get up from their wheelchairs and they all proceed to hang out at a bar.  It shows the compassion of a group of friends to be there for their buddy, who just so happens to be in a wheelchair.  Instead of excluding him, they join him.

I love it.  I love the message and earlier today, I wrote that I can only hope that my boys learn a lesson from this commercial.  It is incredible how quickly our hopes turn to reality sometimes.

Tonight, Dan was working late, so the boys and I had a date night at Skyline for dinner.  They love Skyline.  It's super kid friendly, Isaac loves the hot dogs and Gabe enjoys watching ESPN while he eats.  Each dish comes with heaping piles of cheese.  I mean who doesn't love cheese.  All in all, it's a win win for everyone.

While we were waiting for our food, Gabe exclaims, "Look!  They are playing wheelchair basketball!" I looked over at the TV and saw that the TV across the room was playing that commercial.  It was the first time that Gabe had seen the commercial.

It amazed me how quickly Gabe noticed and also how excited he was about it.  I could tell he was genuinely excited about seeing guys play wheelchair basketball.  He proceeded to comment how he thought Braxton Miller (one of his favorite OSU football players) used to play wheelchair basketball.  (Which I am pretty sure he didn't).  But I guess my point is that I felt so good knowing that Gabe has already learned a great lesson in life that takes adults years sometimes to figure out.   We are all here as ourselves.  We do things how we do things and that's that.  Some of us walk, some use wheelchairs, but we can all play.  

We had to immediately rewatch the commercial on youtube on my phone.  Isaac was very interested and replied with " they play basketball.  I want my wheels."  To him, he just wanted to join.  To that I say, "Yes son.  Please join them.  Let your brother join and everyone else join you too.  Let everyone play and be friends."

Watch this kids

After seeing some posts on facebook about a new Guinness Beer commercial, I became curious and decided to check it out for myself....

http://www.huffingtonpost.com/2013/09/05/guinness-wheelchair-basketball-commercial_n_3874732.html


I didn't expect to be in tears at watching a beer commercial, but I was wrong.  It has such a great message and one that I can only hope that my children will one day learn a great lesson from.

Lots of appintments and prepping for school

I have had this post sitting in my blogger account, waiting to be published because I wanted to add photos to it; however I have a new computer so I am learning how to work the photo system with it and really need to take a class on it...So here is a post that is a bit late and still photoless.


We have been enjoying this summer and it is hard to believe that September is truly just around the corner.  More than half of the weekends this summer were visiting family or some kind of family event, which I do love.  It has been busy, but so fun.  We are winding down the summer, and prepping for school.

Isaac has received physical therapy in our home twice a month since he was a baby.  Our help me grow therapist has been wonderful and we are so grateful for the progress she has helped him with.  Last spring we could choose to continue to have the PT come to our house twice a month or we could choose for Isaac to go to "toddler school" two mornings a week during the school year.  Next year when Isaac is three he will go to preschool 4 mornings a week so we felt like going two mornings this year would be a good transition for him.  He will receive PT weekly in school and he will also benefit from peer interaction and other fun school activities which will aid in his development.  His first day is two weeks from today.

I am honestly not nervous about Isaac going to school.  I think it will be really good for him.  He will be in a classroom with typical children and other children with special needs.  The needs vary, and that's good.  I hope that this helps foster our goal as a parents that our children know that each one of us is unique and special.  Our abilities and strengths are different and that's whats so cool about getting to know others.

I am nervous about driving him to this center.  It is downtown from our house and about 30 minutes away.  I am just praying that the downtown crazy drivers are easy on me as I cautiously work on getting my little boy to school during rush hour!

Gabriel starts his second year of preschool in one week!  It is his last year of preschool before kindergarten.  He is ready to go back.  He really enjoyed school last year and loves being around peers.  He and I will have special time on Mondays when Isaac is at school and I am really looking forward to this.  I have lots of ideas for special things we can do like visit the library, Franklin Park Conservatory, COSI and other things that I usually don't do with the kids because they are downtown (can you tell I don't really love to drive downtown!)

This week is a bit crazy.  Isaac has a doctors appointment 4 out of 5 days this week.  Nothing too major; eyes, teeth, GI, ortho and his last 2 year vaccine.  On Wednesday we do visit GI and this is the specialty that focuses on his gastrointestinal health.  He has been seeing this doctor for about 6 months because he has had slow weight gain in the past year.  I do get a bit nervous going because I know if he doesn't grow, a feeding tube could be in his future.  It is not that Isaac doesn't eat anything, but I believe it is a case where he is a picky toddler AND children with his condition have difficultly gaining because of their unique intestinal anatomy.  He does not have as much colon as we do and therefore he doesn't absorb as many nutrients.  His intestinal tract may also not move food as quickly either which means he does not get as hungry.  I am praying that he has at least gained some weight!