It’s a big word. It’s a word we think we understand, we think we know. But it’s a slippery word. It’s hard to define because it isn’t concrete. It’s mobile and fluid. We can’t grasp it with our hands. We can’t touch it. But we can feel it. Somehow we know it’s there. It’s in the tiny pink and white blooms of the apple tree in spring. It’s in the smooth grainy feel of seeds just as you plant them in rich black soil. It’s in the crinkly creaky sound the hard-backed cover of a brand new journal makes when you open it for the first time. It’s in the smell of a brand new book (especially a thick 19th century novel). Once you become a parent, hope morphs. In pregnancy hope is the feel of a tiny foot kicking, tiny elbows poking (I do have to be honest though…I was never all that fond of that feeling). Hope is in their coos and goos as infants, in their laughs, in their cries. Hope is in their first steps. Hope…hope…
In the last year, HOPE has been redefined for me. Yes, I hope for my children. Yes, I hope for my family, for myself. But since I reconnected with my cousin, Penny, I hope for something more. I Hope4Harper.
Harper is the almost 2 year old daughter of a distant cousin. Her mother, Penny, was a woman I loved so much as a child. I only saw her once a year at family reunions, but she was special because she played with us “little” ones, she laughed at our jokes, she loved us. Time passed and I lost touch, but one day I found her on Facebook. As we talked, I learned about her precious family: husband Dustin and daughters Lily and baby Harper. Their story is enough to break your heart, to make you believe that hope is futile. At six weeks old Harper was rushed to the ER with what her parents realized were seizures. Doctors had no answers. Almost a year later they finally discovered the cause, an extremely rare genetic disorder called CDKL5. Children suffering from CDKL5 have vision problems, low muscle tone, GI issues, and debilitating seizures which prevent normal development. Just over 200 cases of the disease are known worldwide. From the moment Harper was diagnosed her family has pushed diligently, never giving up hope that they can find a way to help their daughter lead a productive life. I can’t begin to imagine the struggles. Not only are they parents of a special needs baby, but they are parents of a normal, healthy 5 year old girl who needs them and their attention as much as her baby sister. And somehow they do it, and they do it well. They hold their head high through all the difficulties, all the pain, through the knowledge that they don’t have the means to cure their baby girl. Yet they cling to the reality that God gave them Harper for a reason, that she is meant for a higher purpose. Last year an amazing opportunity presented itself: Harper had the chance to be a part of a research study through Boston Children’s Hospital focused on seizures! Her family succeeded in raising $100,000 in only a few months to secure Harper’s position in the study. Amazing GOD!
Today marks a special day for Hope4Harper. As of today they are officially a non-profit organization. This is a huge step which can open doors for them. This month Hope4Harper makes a huge fundraising and awareness push. Her birthday is April 12th, and we want to celebrate her life and the way it has already touched so many others. Check out her website, www.hope4harper.com to see all the amazing things that April has in store for her. My Lubbock friends, all of you can come out to a special Chick fil A Spirit Day fundraiser on April 12th to support her! Most importantly, Harper is proof that hope is more than what we could ever dream.