The Journey

On Sunday we will celebrate another big milestone in our daughter’s journey through life. These occasions always cause me to be reflective and highly emotional. As part of my therapy, I had determined to share part of that journey with you through my writing. I found that was easier said than done yesterday. I didn’t know where to start and where to stop. After many hours and countless words, I scrapped the whole thing and went to bed late last night. The truth is, I cannot condense what we’ve been through with Hillary in her 21+ years to a blog post. It deserves a book! Maybe someday….

For those unfamiliar with her story, Hillary Jayne is our miracle baby. You’ll have to wait for the book to fill in the gaps, but I’ll paint the big picture now. She was diagnosed with a congenital diaphragmatic hernia (CDH) in the womb. The hole in the left side of her diaphragm allowed her abdominal organs to come up into her chest cavity and take up the space where her left lung was to be developing. She was given a 50% chance of surviving IF she was born in the right place at the right time. By the grace of God, she was. She came out fighting and has been fighting ever since! Hillary had her hernia repair surgery when she was 6 days old and spent the first 88 days of her life in intensive care at Allegheny General Hospital. I remember the neonatologist describing Hillary’s hospital stay as a series of three steps forward and two steps backwards. That’s a net gain of one, right? We’ll take it! Even with the medical advances today, 50% of babies born with CDH do not survive.

CDH isn’t just a hernia. The 50% that do survive live with the threat of complications of it for the rest of their lives, including the very real possibility of reherniation. So, as they say at CHERUBS, the CDH Support Group, “Just because the hole is fixed, doesn’t mean the battle is over.” For instance, Hillary recently spent a whole year on three high-powered antibiotics to rid her good lung of a serious mycobacterial infection that was indirectly related to her CDH. It hasn’t been smooth sailing for Hillary. Far from it! I guess that’s what makes each milestone that much sweeter!

I believe God has lessons for us in each of our life experiences. Nothing comes to us without a purpose. Without question, Hillary’s story is the experience that has had the greatest impact on my life. I look at life differently now because I realize just how precious it is. Each day is a gift from God, not to be taken for granted. In the words of Jesus:

I have come so they can have life. I want them to have it in the fullest possible way.”  

John 10:10b NIRV

Jesus went to the greatest of lengths to give us life. It would behoove us to make the most of it. Let’s not squander today, for tomorrow isn’t guaranteed. Live life….enjoy it…celebrate it…and give God thanks for it!

On Sunday we will celebrate the college graduation of our precious daughter. This milestone, like every other one before it, will be magnified times one hundred because of the journey that brought her here. I couldn’t be more proud. She has overcome so much adversity in her 21+ years and has excelled in spite of it all. Or perhaps BECAUSE of it all. When they call Hillary Jayne Leipold on Sunday and she crosses the stage with numerous cords and medallions draped around her neck to collect her diploma, her devoted fan base will be there leading the cheering. That is, all except her mother who will be too choked up to muster a WooHoo!