The last post that was made was all about us gearing up for Oakes’ first birthday. His birthday came and went, March 10th, and what an eventful birthday it was!
To start, we did not host a big party for him or our family and friends. We did have some family in town and wanted to keep the weekend pretty low key. However some of our amazing friends at the hospital thought a party for Oakes on the floor was definitely in order, so Oakes did have quite a bash on the 7th floor of Children’s on Friday the 9th. It was an open house kind of event for the staff, there was cake and goodies and the staff popped in when they had a few free minutes. We even had nurses and staff members come in on their days off to join the celebration. We dressed Oakes, put him in our stroller and brought him to the party for a short visit. He slept through most of it, and in hindsight it was probably a little too much stimulation for him. Because of the special event we got permission to have cousins at the party and our dear friends the Moriartys came with their two children. It was a great gathering, a little chaotic, but probably like most one-year-old birthday parties in that regard. So normal in the chaos, but with some not so normal attention on Oakes’ big day. On Friday we were blessed to have a professional photographer there with us, Mrs. Heidi Drexler. She joined us and captured the event for us. What an amazing gift. We also were approached by the hospital’s PR group, who thought that Oakes’ story was so touching and unique they wanted to alert the local media about his birthday party, so Channel 2 joined the event and put together a news piece. Yvonne, one of our nurse besties also wrote a piece about Oakes and our family that was posted on the hospital’s blog. Yvonne’s post is here. The news clip is here. Just an amazing celebration! And I hope Isla never asks to see the news footage from her first birthday!
So, the party was a hit. Yvonne and Tammy, Dr. Lee and everyone that helped plan the party spoiled us. We didn’t do a thing; we just showed up and ate cake. The party was truly a gift. Oakes’ birthday felt like an extra special milestone. When we were all crowded into the conference room singing Happy Birthday I knew that everyone in the room deeply loved my son, and my family. I knew that everyone present appreciated how monumental it was for Oakes to make it to his first birthday. For many months I have know and felt comforted that the staff at Children’s absolutely loves my little Oakes. And they love Isla. There are probably 50something nurses that rotate in and out of the CICU during the week and truly I believe that Oakes has 50something aunts and uncles loving on him and taking just the best possible care of him daily. They have collectively changed more of his diapers than Greg and I. They have comforted him when we were not there, they have held him, rocked him to sleep, read him books, tickled him, giggled with him, fed him, and given him life saving support for months. They encourage him, cheer him on and they given him stern talks when he has misbehaved. The staff in the CICU is family, so it was so appropriate to celebrate Oakes’ big day with them. Like I mentioned, for some time I have know that my Oakes is loved, but it wasn’t until just recently that Connie, a chaplain that has visited Oakes and our family since he was born shared with me how inspiration Oakes is to the staff. Connie used to work with families in the CICU but has moved to the NICU now. She is plenty busy down there, and we are not her “assignment” anymore, but she still comes to visit us often. Connie recently told me that when she is having a rough day, she loves to come and visit Oakes. She shared that Oakes room is warm and cozy. She loves the photos and artwork on the walls. But even more, Connie loves to visit Oakes himself. For Connie, and she believed for others too, Oakes is just this living, breathing, smiling, sucky thumb, thriving reminder that their hard work makes a difference, that science works and miracles happen too. I had not considered Connie’s perspective, or thought that Oakes actually inspires the staff, but it was so very touching to hear.
All of that to say that we LOVE the staff that has helped to raise our Oakes over this past year. They have taken exceptional care of him. They have also pampered Isla like I never imagined that they would. We are blessed, truly blessed to have made all of the 50something friends that we have made this year. Greg and I have received so much support from the staff. They have taught us all that we know about our little heart baby, they have listened to us and respected us; they have always taken our suggestions and hunches into consideration. They have advocated for us and our family, they have counseled us, they have cried with us, hoped with us, prayed with us and for us, they have showered all of us with gifts and for some time they have been smiling and laughing with us. So, celebrating Oakes’ first year with us was just the perfect way to spend the day.
Thank you Yvonne, Tammy, and Dr. Lee for planning and hosting the party. Thank you for the amazing scrapbook! Thank you to all of the staff in the Heart Center for doing your job. You have all made an enormous difference in our lives. Not only by taking such amazing care of Oakes, but a year that could have been 100% miserable for Greg, Isla and I has been so much better beacuse of you. WE LOVE YOU.
When I got there our team was already together. Everyone had their Mighty Oakes Heart Foundation shirts on, they were sleepy but smiling. There were about 1200 people that climbed that day, but we were one of the first teams that hit the stairs. We were lined up and ready to go. Andy led our team. He is one of Oakes’ amazing nurses and he is cancer survivor. This was Andy’s first athletic event that he participated in since his recovery over a year ago. To see him standing in the doorway to the stairs jumping back and forth shanking his arms around excitedly brought tears to my eyes. Our team started cheering and clapping which echoed through the lobby of the Met. The lobby became very quiet, all eyes were on the MOHF team and when Andy got the signal he ran through the doorway. Every 10 seconds another team member was sent up. There were 16 of us, and we all finished in less than 15 minutes. Some moved faster than others, Andy finished the 40 flights in a little over 7 minutes (amazing!), but single file we were steadily moving straight up, step by step, sweating, taking deep breaths for Oakes. It was powerful. Andy started us off, my sweet Mom climbed in a Zen like state, slowly but steadily. Greg’s sister Shani climbed, her friend Katie our team organizer climbed too. Chrissy, the mother of our sweet Angel Elizabeth climbed with us. My sister in Washington DC, climbed remotely. She hit the steps of the Washington Memorial with her MOHF shirt for twenty minutes and her fiancé who is deployed in the middle east got on the treadmill and did 40 flights for Oakes, as well as many other devoted, passionate, and fit friends of Oakes. I had tears streaming down my cheeks for the first 6 flights when I talked myself out of that. I was just emotional beyond words. I finished in about 12 minutes, and met up with Greg, Isla and the team afterwards. I think everyone felt good and proud, and excited to do it again next year. When thanking everyone Katie mentioned, Oakes should be with us next year, and certainly, if we can make that happen, he will be there next year wearing his own MOHF shirt smiling, climbing a few stairs of his own, cheering as we head up! (March 21, 2013 in St. Louis - mark your calendar! (Lots of other cities have their own climbs if you want to participate in your hometown)
What Oakes is telling me now: “I am so happy you guys are finally turning these drugs off! Don’t get me wrong I LOVE my drugs, but life if good, I feel great and being awake and playing with my aunties and uncles and my Isla are AWESOME! Can’t you tell by my smile? Please tell my pretty Speech therapist that I hate peas but I love pears. Ceiling tiles are ugly. Mom, why are you welling up with tears again, I told you a long time ago that I could do this, geez you’re embarrassing me! Can we go to the garden right now? Will you read me that Thomas the Train book that makes all of the sounds? Where is Isla? I love my thumb. Is that my girlfriend in the hall that I hear? Oh, man, I love to have a good old explosive poop while the nurses are changing my diaper, it makes my day! Momma, lets get out of this place, I’m ready to come home."
And here are a gazillion pictures that I have taken since the last post:
And Tio Sante far away!