Scott and Laurie’s Parent Diary: September 2014

Take a breath- that has become my mantra these last few months…

June was Busy!! Alexis graduated High School, turned 18, and got a Tattoo!!!

At the end of July, Alexis was fitted for her tilt in space (all the bells and whistles) wheelchair, we are expecting it the next few weeks. That was a hard day!!! While Alexis has days where she is (mostly) mobile on her own, it has become time to accept that will not be the case much longer. We have an organization we have teamed up with, Sheep Dogs IA, that is heading up helping to make our home accessible. Without Tim Parkhurst, Allen Page, and the countless others that are helping in numerous ways, this would be impossible for us.

In August, we did one of Alexis’ dreams! We went to Legoland & Disney World!!! It was WONDERFUL! When we returned home, Alexis began receiving home care. The nurse, Cacie, has been a godsend for us. Alexis now has someone other than just family to socialize with and help her around the house. We also brought a new addition into our home. Alexis picked a stray kitten who she named her Harley Quinn. Our other cat, Joker, likes her as well! (Bet you can’t tell the kids love Batman!!)

We have continued to do something fun every day, sometimes laying on the couch together watching movies, or dancing like fools in the living room to one of her favorite bands, playing a video or board game, or reading an interactive manga on her phone, and going to concerts is one of her biggest joys.

My husband put it into words best for me… We are doing the material things, to help her not focus on the things she is missing that we can’t replace…

I hope Alexis as well as the others in this situation know they are not a burden, but rather a blessing that we would not trade for the world. So, as you can see, we keep going, we keep smiling- even when we don’t want to!

Our family would like to express our gratitude, and compassion to all other Lafora families past and present (may there never be one in the future!), when you lose your loved one, we all feel it.

With heavy hearts,

The Howard Family
Scott, Laurie, Alexis, & Scott Jr.