Friday, October 4, 2013

Friday, October 4, 2013

Tonight's picture was taken in November of 2008. Mattie was between Linda (on the left), who was his child life specialist, and Lesley (on the right), one of Mattie's fabulous child life interns. As you can see Mattie came back to his PICU room bearing a gift. He painted a lamp for me. A lamp I still have!!! All the pieces of art Mattie made that year in the hospital are all very precious to us. Peter and I will always be indebted to Linda for the amazing work she did with Mattie. Mattie truly loved her, considered her a friend, and knew she had his best interest at heart. Today, while visiting the Hospital, I swear I could hear Mattie in my head screaming out.... LINDA!!!!!!!!!!!!! Or as Mattie would do it, it sounded more like LIN---DAAAAAAAAAAAAAAAAAAA!!!!


Quote of the day: When you tend to another's dying embers, you find both warmth and an increase in the glow of your own fire. ~ Richelle E. Goodrich

This was a very BUSY week for Mattie Miracle. Monday was the Smoothie Fest, Wednesday was the Chocolate Therapy workshop and today, we presented the Hospital with our THIRD Mattie Miracle Check since 2011! As our donors know, all funds generated from our May walk go directly to helping children battle cancer as well as to promote our national agenda to create a psychosocial standard of care. We couldn't accomplish any of this without our faithful contributors!!!! For three years in a row, Mattie Miracle has funded a child life position at Georgetown University Hospital.

The position is filled by a wonderful young lady named Jess Abrams. Jess is no stranger to cancer, when she was a child her sister battled cancer and then died. Jess remembers how important a child life specialist was in her life and that of her sister's, which is most likely what inspired Jess to enter this profession. When Mattie battled cancer, scan and procedure days were very scary and traumatic for him (scans are done every couple of months to determine the effectiveness of cancer treatment). Thankfully early on Linda came along with us on EVERY single scan. Linda helped to distract Mattie, played with him, and together we would explain what was going to happen next during these long days. Keep in mind that some of Mattie's MRIs were TWO HOURS long!!! After Mattie died, Peter and I felt inspired to help support Linda's program and help pay for the salary of a specialist who could do exactly what Linda did for us..... assist children and their families on scan and procedure days. Jess now works closely with the sedation team and assists on over 300 procedures per year and also works directly in the pediatric units with about 3500 families per year!!! It is truly an amazing achievement what our Mattie Miracle community has accomplished.

It is a tradition, that when we have a check presentation day, I bake Mattie cupcakes. Mattie LOVED vanilla frosted cupcakes! As many of you know, Mattie HATED chocolate!!! When Mattie was between treatments and not sick (which was rare), we would be home for a couple of days before returning right back to the Hospital. During those days, I would bake cupcakes and pack them up to take them to the Hospital for our next admission. I used cupcakes as an incentive for Mattie to do his physical therapy. If he accomplished an exercise, he earned a cupcake. It was rather effective. Though in all reality, Mattie was skin and bones and giving him any sort of fat and sugar was a great thing! As you can see, I decorated the table in Mattie Miracle colors today and brought along 30 cupcakes and some Mattie plastic bugs. Mattie was notorious for having rubber bugs and other creepy things to scare his nurses with!!! 

In a way, we had a mini-reunion today. From left to right are Linda (Mattie's Child Life Specialist), Katie (a Child Life Specialist), Peter, Vicki, Jess (the Child Life Specialist position we fund), Debbi (Mattie's sedation nurse angel), Ann (our Team Mattie Coordinator and Foundation Board Member), and Tricia (Mattie's favorite Hem/Onc nurse).

During our gathering today, Linda said a few words about the generosity of our contribution. Linda admitted that Mattie pushed her to be a great Child Life Specialist. They were quite good for each other! After Linda spoke, Tricia and Debbi also said a few words. Tricia is a LOYAL Mattie Miracle supporter. Her whole family supports us and has attended every Walk we have ever hosted. Tricia told us today that as soon as she met us and began caring for Mattie, she realized we were a special family. Tricia is our BEST PR. She tells families about Mattie Miracle and when the snack cart comes by, she tells them just where these items came from. Needless to say, Peter and I will always be indebted to Tricia, Debbi, and Linda.

Vicki with Debbi and Tricia! Sandwiched between two extraordinary nurses! They may look cute, but both of these women are formidable, they can hold their own with medical doctors, and truly cared for our entire family, not just Mattie. 

Peter and I with the amazing Georgetown Child Life staff! Each of these women work diligently to make the life of a hospitalized child just a little more bearable! As we left the Hospital today, Linda walked Peter and I to the new memorial garden. We are looking into creating a 12x12 paver for this garden to acknowledge the life of Mattie. That way Mattie will always be visually remembered at Georgetown.