Friday, November 19, 2010



Sometimes I wish that I could just walk to the car without having to worry about loading a heavy wheel chair, walker, or a stroller. Sometimes I wish that after ten years I didn’t still have to lug around a big purse/ diaper bag to carry diapers, wipes, and spare clothing. Sometimes I wish that I could just pull up to a drive thru window and order a burger and fries instead of worrying about feeding tubes, formula, and extension kits. Sometimes I wish that I could hear just once “I love you Mommy” come out of his sweet little mouth. Sometimes I wish that I didn’t have to shave his head because of the hair that is falling out. Sometimes I wish that we could go a night with out tears and pain. Sometimes I wish that we could go to the movies as a family. Sometimes I wish that we could all go on bike rides together. Sometimes I wish I didn’t have to look at medical poles and machines next to his bed at night. Sometimes I wish that is was simple.

Tonight I attempted something that would seem so simple to most people. Jason plays on a softball league every week. Every week he leaves and I tell him that I wish that we could go and watch him. Today was a good day for Bubba, he was happy and feeling good. So, I decided that I would take the kids to go and watch their Daddy play. It was a 6:30 game {the earliest game they have}. I knew that it would be a risk. You see, Bubba get’s his medications every night a 6pm, then bath time, then bed time shortly after. If we veer from the schedule than we never know how he will react. We pulled up to the field and both of the kids were so excited. I got out his chair, put his lap blanket on him, pulled out the diaper bag, and we were off. Regan spotted Jason across the field and was so excited to see him. At first I was hopeful for Bubba, he was smiling and happy to be there. With in no time it was over. The cheering was to load and sent him into tears. We got to watch Jason go up to bat one time and then I was loading the chair, my children, and that big bag back into my van.

One of the hardest parts of having a child like Bubba is that something so simple, so easy can so quickly turn into something so hard. Sometimes I wish that the simple things were just that, simple. Tonight I will pray for strength to endure my greatest blessings. :)


Mandy said...

I'm right there with you, somedays are just so overwhelming. But sometimes we need a little reminder of what we have and how quickly it can be taken away. I had just such a reminder yesterday. A local family here have two kids with SMA, a rare terminal quickly progressive disease. Their sweet 3 almost 4 year old was taken back to his Heavenly Father Thurs. night. If you would like to take a peep their blog is

Foursons said...

My heart breaks for your struggles. I know you love Bubba with every ounce of your being. I'm sorry the easy things are so difficult.

On a completed unrelated note- I LOVE your new header!

Zurmely family said...

Jeff and Lisa said...

Hi, I found your blog yesterday and spent some time reading about your family. I have different challenges with my daughter Emma, but related to many feelings and posts you have written-especially this one. If you ever need to vent to someone-shoot me an email it helps me a lot to vent. I get along with "special mommies" better than people I've known my whole life. You have an amazing family.

Anonymous said...

I read your blog through my niece's and my heart ache for you. You are such a great mom and it shows through! I will pray for you and your family.
God Bless You.

Simply Sara said...

i wish the simple things were easier for you guys too.

and i wish i was there to help you with both the easy and hard things.

you are a wonderful mommy.