Fourteen years ago we nearly lost our daughter... again.
Today is living donor day and we had the good fortune of our Emily's daddy being her kidney match. LIttle did we know at the time that this would not be the only life battle she would face.
It's believed there may be many more children with SIOD, yet most die from end stage renal failure, infection or stroke before diagnosis. The journey to diagnosis can take years, and as in our case, families are battling life threatening situations and trying to "fix" that not knowing there could be some underlying disease.
Emily has been a warrior princess her entire life. She came into this world fighting born eight weeks premature and on a ventilator. At the age of four she had a kidney transplant from her dad and then as we thought we had that under control she got stage 3 lymphoma cancer- twice. Her story doesn't stop there and has fought her way through life. Her school experience is not like most wavering between hospital school, home school, and modified curriculum. And we are at another milestone. Some big ones.
Emily attended her Senior Prom last weekend! She will be graduating May 15th. Milestones for any child indeed. Yet knowing her story- even the brief snapshot I give here- it all is miraculous.
Last Saturday I went to pick up her wrist corsage from our favorite local florist- Linda at Town & Country Floral Gretna. Emily has been coming to her shop for years delivering May Day baskets and they have grown quite fond of one another. As Linda and I talked of Emily and her opportunity to attend prom and what a big deal it is for her to graduate, I told her to stop as she was going to make me cry. She proclaimed, go ahead- cry away. I did not. At least not at that moment. I got in the van and was driving to our dear friend's home to help her decorate for pictures later that day and I began weeping uncontrollably. They weren't tears of joy or pain, just a waterfall of that moment.
I wrestled with myself as how to stop before I reached my destination. I wondered what kind of mess I would be later in the day.
Decorating for the prom pictures was the distraction I needed. I also relished in being the little birdie watching Taylor-Jo do Emily's make up and their interactions. Everyone at the pre prom picture gathering was kind and inclusive. The cheerfulness on Emily's face the entire time brought such satisfaction to this mama's heart.
Joe and I drove Emily to and from each place- Hiro 88 to meet the same picture group for supper ( Joe and I ate next door and gave her meds in between stops) the Beardmore Event Center in Bellevue, for the dance, and last stop- Gretna High School for post prom.
We had back up plans in place. I had adult contacts at all of the places. Some point person to watch over her. Emily had her phone. Everything went well. I was on high alert all night long, yet she had a blast and made new friends along the way. I knew when I took her into the dance and kissed her forehead and turned to talk to a staff member for a moment and to my surprise watched her saunter away to friends in the dance room that all would be okay. I stood there unsure of what to do for a moment. I have always been with her. Helping her. Guiding her. What do I do? I told myself- turn around and walk out. She is happy.
Our entire family learned some things last Saturday night. We are thankful for the experience that turned out drama free. We know that despite all of the trauma we have all gone through we always prevail and make it through. We also know that we can have fun in this journey and begin to let her grow.
