As we reflect upon the last year it is amazing all that has taken place in our lives. In March the bliss of being new parents was shattered when we found out Reesa was suffering from an incurable disease called Krabbe. The shock and sadness was unbearable and indescribable. Since then our life has been a whirlwind of hospital visits, surgeries, tests and doctor's appointments. Our home has been a revolving door with friends and loved ones showing support for us and our little girl. Many wonderful people have become a part of our world including nurses, therapists and hospice workers. From local doctors like Reesa's pediatrician, Dr. Barcellona, to Reesa's specialist in Pittsburgh, Dr. Escloar and her team. We've also become close with a network of families dealing with Krabbe and other terminal diseases. Our lives have become more enriched through the inspiring people we've met. Children's toys, high-chairs and baby bottles have been replaced with a feeding machine, suction device, pulse oximeter, oxygen and hourly medications. It is certainly not what we pictured parenthood to be but we've become accustomed to our new normal and have grown to embrace it. Through our tragedy we've gained a new perspective on how beautiful people can be. We participated in St. Louis Cardinal Manager Mike Matheny's golf tournament where complete strangers opened their hearts to us and Baby Reesa. Our dear friend Skip Schumaker organized a benefit for Reesa where most of the St. Louis professional athletes signed autographs for thousands of fans. We had a once-in-a-lifetime opportunity in July at Baby Reesa Night at Busch Stadium where we threw out the first pitch in a Major League Baseball game. Local friends and coworkers put together a charity golf tournament for Reesa's first birthday party with hundreds of attendees showing their support. Although, for the most part, we've been consumed with positivity we've also had to part ways with a few "family" members who weren't supportive of us and (believe it or not) were not accepting of Reesa. This was hurtful and disappointing but, thankfully, that chapter is behind us and we're stronger from it. As 2012 comes to a close we'd like to say thank you to all of the people who've written us, supported us and prayed for us. We're so grateful for the many people who've been touched by Reesa and who have joined us on this journey that we continue to travel. We have bad days and profoundly sad moments but overall we're happy and we truly cherish everyday we have with our little princess. Reesa is comfortable, content and showered with love every moment of her life!
Wednesday, December 26, 2012
Merry Christmas and Happy New Year!
Monday, December 17, 2012
Reesa and her Binky
Reesa recently turned 16 months old; each day is truly a blessing. When we went to see Dr. Escolar (Krabbe Specialist) in mid-September she was very happy to see that Reesa was still sucking on her pacifier. Dr. Escolar said most Krabbe babies at 14 months have lost this ability. Dr. Escolar encouraged us to keep working on this with Reesa because, although Reesa’s ability to swallow has diminished, it helps manage her secretions and Reesa absolutely loves it! It is one of the only things that Reesa can voluntarily control. It may not seem significant but in our world Reesa’s pacifier is a HUGE deal!
Here is a cute video of Reesa going to town (turn your volume up):
Friday, December 14, 2012
Sunday, November 11, 2012
Baptism and Jewish Naming Ceremony
From the standpoint of religion, our family has a diverse background of beliefs. Jamie's mom is Jewish and her dad is Lutheran while Sean is Catholic. As new parents our plan was to teach our child about all of the religions that make them who they are and as they grow they can decide which path or paths they will pursue in life. When Reesa was diagnosed with Krabbe disease we realized that plans had changed. We thought long and hard about how to handle Reesa's spiritual future while doing our best not to offend Reesa's extended family members, many of whom hold their religious beliefs very dear. Ultimately we decided to hold two ceremonies with each celebrating a different, but equally important, side of Reesa's faith. Both ceremonies were celebrated by much of our close family and we're blessed to have these special memories forever.
Baptism
Performed by Father Brian Bell at St. Bernard of Clairvaux
Jewish Naming Ceremony
Performed by Rabbi Martin Scharf Reesa received the name Rachel Reesa Mekayla in Hebrew being named after her grandmother Ruth Resa. The Mekayla is for Sean’s father. It was not easy for Rabbi Scharf to find the proper words for this occasion, knowing what’s in the future for Reesa. What he said was loving and moving for the family. The brief service ended with the Rabbi’s blessing to our beautiful baby and her family.
