I thought a lot about Oakes' donor today, and his donor's family. I can only imagine that their hearts were breaking today, being the day that they lost their baby. We are so very grateful for the absolutely selfless decision that they made to donate their child's organs. I pray that they find comfort today knowing that their decision saved our Oakes' life as well as several other blessed children. I mentioned right after transplant that I would love those new lungs, and I sure do. I have been loving those lungs, and loving that baby through Oakes. There isn't a day that passes that I don't think about Oakes' donor angel.
I know that Oakes has a long road ahead of him, but today I feel so blessed that he lived to get lungs, and that he has made it this far. That kid has had the odds stacked against him for so long. We have had some very scary days and nights, some gut wrenching conversations, amounts of stress, tension, and anxiety that I have not known how we would endure, and lots and lots of tears. But like you know, we have had some really good days too. I know that Greg and I both hang on to those good days, we continue to hope, and we pray for many, many more good days to come. Hundreds of them, thousands, tens and tens of thousands, as many as we can possibly get.
Over the weekend I ate lunch with a lady, a mom, that I met in the elevator on the way to the cafeteria. She also has a sick son, actually a sick foster son that she is in the process of adopting. He and Oakes have very different stories and she and I have different stories too, but we had a lot in common. At the end of our lunch we were both in tears, agreeing that we would not trade our amazing little men for perfectly healthy ones. I feel so blessed to have Oakes in my life. I love him like crazy. I love being his Momma. I am proud of him, impressed by him, confused and in awe of him - I don't know how he has done what he has done, or how he is enduring what he is enduring. I just adore him. I love him, love him, love him! Every inch of him, ever limb, every organ, every cell, I wish I could just breath him in. I love him and I am happy, happy for today.
Oakes has taught me a lot in his 165 days on earth, but one thing he has taught me is to just be here. To be here today, or be here in this minute. To see him and be with him. I can, and do, sometimes get completely overwhelmed thinking about the future, about what is next, and what it will take to get there, and what are the odds that we might get there, and on and on....but after a short time of running through these seemingly impossible scenarios I have learned to just let it go. I should say, I am learning. I am learning that if it is out of my control, or there is no answer, then there is no point in worrying about it. When I am in Oakes' room this is easy to do. I can just stand by him, touch him, watch his chest rise and fall, see him move a little, feel his now prickly hair, if I'm lucky I can look in his eyes, and I calm down and come right back into the moment. And I just am. I am here. I see him, I am here with him, and usually, when things are calm, those moments are great, and they get me through to the next moment. Sometimes when Oakes is upset I find myself telling him, "I see you", and "I'm right here" and I pray that that will help to get him through to the next moment too.
Lots of prayers of thanks tonight from our house. Thanks for those lungs. Thanks for 165 days of back to back miracles. Thanks that Oakes has the sweetest, most adorable, loving, little ray of sunshine sister that really is the best medicine for Greg and I. Thanks to our family and our friends. To all of Oakes' friends around the world that are praying for him and cheering him on. And his amazing team of nurses and doctors! Extra special prayers for our donor family as they grieve and prayers for our friends and their children that did not make it to transplant. Prayers, prayers, prayers and love.
Heart string tugs to all of you, Becky