“The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle for the good of all humanity.” John Alessi – The Brave Little Soul
On July 8th I walked into Children’s Hospital of Pittsburgh Emergency Department fully expecting to be seen by the GI team to figure out why Evan was not tolerating his food. I never imagined that 45 days later we would be in Boston Children’s hospital recovering from a third open heart surgery and starting a journey as we battle pulmonary vein stenosis. We have been so blessed by so many people. I write this post not because the people I am about to acknowledge are looking for accolades or recognition but because I want everyone to realize how much the support means to me and to understand that my family does not take any of it for granted. I have seen first hand that not everyone has that type of support. Once Evan was diagnosed with pulmonary vein stenosis and we prepared for yet another surgery I knew it was necessary to take a leave of absence from work. Ryan and I were not necessarily prepared to go from a two income household to one (gasp!).
What started out as a conversation between a husband and wife has really turned into our saving grace. When our dear friend Charmel heard that Evan was back in the hospital and what we were facing she felt compelled to help but was not sure how. She knew that Ryan and I were the type of people to embrace our situation and do what we could without asking for help. It is not that we are above taking help we just don’t want others to be burdened. After a conversation with her husband Rick they decided to reach out and ask if it was ok to start a fundraiser in order to help us. I didn’t respond right away but immediately I knew this was God’s way of showing many things including we were making the right decision to pursue going to Boston for surgery and showing us we were not alone. He would make a way. This is were the fundraising efforts began. Charmel has sacrificed so much of her time in order to help us and is truly being guided by God in her efforts from creating the fundraising sites, spreading the word, soliciting donations, contacting media and planning physical fundraisers I can’t thank her and her family enough for all that they have done for us.
I honestly can say that this experience would have been so much different without the fund and the generosity of so many who have donated. It just so happens that Boston is a very expensive city. The hotels in the area did offer medical rates but the medical rate was equivalent to a night stay in at the regular room rate at a hotel here in Pittsburgh. The fund has allowed me to get a good nights rests at local hotels when Evan was in the ICU in what I like to call the fish bowl room which was a safe place for him but not a good sleeping environment for me. The fund provided support for daily meals. BCH (Boston Children Hospital) did provide me vouchers for $25 a week which was nice but considering that one meal cost over $7 the $25 didn’t go very far over the course of a week. The fund has been a saving grace in the purchase of medical equipment including a portable pul sox which is the size of a cell phone and the rental of a portable oxygen concentrator for the plane ride home. When we came home from Boston Evan was discharged as an outpatient which means we had to fly home commercially. The fund made a way for us to book a flight hours before being discharged to come home! The fund also helped with the purchase of medication and medical supplies. My house is like a mini hospital and pretty soon we are going to need another room for all of the extra stuff..lol! The oxygen concentrator (Martha) alone could use her own room. The fund is also being use to maintain household expenses including mortage payments, groceries, bills and other miscellaneous items to keep our household moving smoothly. Oh, and did I mention the brakes on my car needed to be replaced while we are in Boston – yes, you guessed it the fund made that possible! I can’t thank all of you donated through the Give Forward site enough! Thank you for sacrificing in helping our family. Our journey won’t end when we get home as we have many follow up appointments and possible future trips back to Boston for follow up and heart catherizations. The money raised through the fund and physical fundraiser has allowed us to focus on what is important which is making sure that Evan gets well and ensuring that Cameron’s life is not disrupted too much in the process.
In addition to the Give Forward fundraising site we have had several physical fundraisers and I would like to acknowledge all of those who helped make those possible!
The first ever physical fundraising event – Bowling for Evan at Funfest Entertainment Center! Again, I would like to thank Charmel for doing a phenomenal job organizing this event and ensuring everything ran smoothly. The events of the day included bowling, laser tag, gift basket and 50/50 raffles and exclusive Radiant Warrior Spirit keepsakes. I wasn’t able to make it but I saw lots of pictures and everyone said the room was filled with love and hope. l would like to send an enormous thank you to all of the volunteers for the day including Yaya (my mom), Kelly, Mary, Fran, Shelia, Ms. Terlene,Gramel, Raynee, Rensje and Denise. A huge thank you to our friend Pops for donating a ton of Pirates stuff including a signed McCutchen bat and signed balls which were used in a silent auction. I would like to thank Kelly for self funding Earrings for Evan; the earrings are gorgeous. I would also like to thank Kelly, Mary and Julia for making the beautiful earrings! I would like to thank Sheila for donating the Evan Fund shirts. I would like to thank Tia for making Cameron a back to school basket of supplies. Thank you to Brian Cook for taking pictures of the event and providing video. I would also like to thank Janine, Brittany, Terlene Brown, Charmel, Raynee, Kelly and Zennee for donating fun baskets which were used in a raffle. I would also like to thank Loren LeQua Carter of L&L pops who donated cake pops. Thank you for everyone who spent their Sunday bowling for Evan and for your donations! If I have missed anyone please blame my mind and not my heart.
I have so many more people to Thank so please stay tuned!! Again, Thank you from the bottom of my heart to everyone who has made a sacrifice in order to make a donation to help our family. We love you!!