In the past, I've somewhat dreaded the kids screaming and grabbing things off the shelves on our weekend shopping trips.
Today, as I walked and enjoyed my mommy time, being able to grab things from the shelf myself without my grounded husband telling me we don't need girl scout ice cream, I realized that my bubble is lonely.
Next time I'm in the grocery store and my kids are being bad and they are grabbing everything, pulling each other's hair, screaming at the top of their lungs....I'm going to smile and be happy and grateful for the blessing of having them by my side and not fearing for their lives because we're doing something normal....
Right now, we're going to stay in our bubble until Tuesday. Tuesday is our first big appointment with the specialist since finding out the most recent Complex V defect. We pray for answers. There is no cure for mitochondrial disease and very little treatments. In most cases, the disease is progressive. The treatments only help to slow the progression. Lifestyle changes, like avoiding extreme temperatures and staying well are also things that help slow the progression of the disease. If you'd like to learn more, you can visit www.umdf.com or www.mitoaction.org. It is believed that mitochondrial disease is linked to adult diseases such as Parkinson's, Alzheimer's, and some cancers. Help me raise awareness of this "invisible" disease.
God, Give me the strength and patience to deal with my many blessings. But most of all, thank you for my many blessings!
Hi Brandi,
Thank you for sharing your story and giving us a snapshot of your day. It is hard work being a mommy and there is no way to explain that to anyone...you just have to live it.
I don't know where to buy the bubble either...I did try to create that bubble with my daughter Rebecca when she was a chronically ill, germ magnet, cute as a button toddler. I tried staying home and shopping late at night or shopping by day with her strapped on my back in a carrier so she could not touch the germs on the cart and surfaces. She still got sick constantly and stayed sick longer than the other kids.
I do love the drive thru windows at the bank, pharmacy and dry cleaners. I think it is important to go out and we used to just take a walk-in a park or zoo. However, I would steer clear of the really germy places like the indoor play areas at a fast food restaurant whenever possible.
On one hand, I felt disappointed and cheated that I could not do the things that I wanted because of the chronic illness. On the other hand, I found that I spent more quality time with my kids than other people. I quit my job and spent a great deal of time at home painting, reading books and trying to put those tiny high heels on a barbie doll. I am grateful for those moments and the closeness I feel with my children from spending so much time with them.
You are doing a wonderful job with those boys and they are lucky to have you for their mom. Just take one day at a time and keep writing.
Jan Gambino
The Reflux Mom