Becky here, just wanting to sort of check in and say hi.
I thought it would have been easier to get on here and post updates, but I have pretty much had zero interest in logging into the blog or even thinking about sharing my thoughts or feelings.
I think since Oakes' death, Greg and myself, maybe Isla too have been sort of floating along. We have been sad, yes, but we have been OK. At times it has surprised me how OK I have felt.
In all of our time in the hospital, and with all of the low points I have wondered what I would do, or how I would react if and when Oakes died. In my mind I automatically thought that first I would be hospitalized myself. That would be a given. And I would be heavily medicated. And other than that, life would pretty much come to a stand still. But that has not been the case. I don't know if it has been shock, or denial, maybe grace, or simply grief, but there was no need for hospitalization or medication, and surprisingly life around me has continued. It has been a surprise but, my heart and my lungs still work. I am alive, and my life is continuing. I still smile at lot, thanks to Isla really. I get hungry, I get tired, the sun comes up and goes down and my days have continued. Greg is working daily, and traveling as usual. Isla is still three years old and needs plenty of help and attention. So in the most simple way, I and we, are OK, life is moving on.
We are OK, but even on the best days, there are tears in our house. Mostly from me, I think. I feel peace for Oakes. I know he is in a better place, and I know he is still with us in spirit. Greg and Isla and I have all dreamt about him and I believe he was visiting all of us, assuring us that he really is just fine.
In the last couple of weeks, that initial feeling of floating along has changed. I don't feel like I am floating, but now I feel like I am thawing. I am just aware everyday that there is just this handful of sadness in my being. I don't have anger or regret, I don't have questions or complaints, I am simply sad. I wish Oakes was with us still. I miss him. I miss him SO much. I miss his smile and those crazy teeth. I miss his sweaty little head. I miss everything about him, but I mostly miss holding him. I would do anything to feel the weight of his body in my arms. Anything. But, since I know that won't happen, I talk to him. I tell him how much I miss him and I ask him to take care of me now.
Saturday at 3pm will be the one year anniversary of the phone call that Oakes would get new lungs. I will never forget that afternoon, or the look on Greg's face when he told me. Then Sunday, July 22nd will be the transplant anniversary. What a huge anniversary for us, and for Oakes, and really for everyone that has cared for him, rooted for him, and has prayed for him. The nine months after the transplant were not perfect, you have read about all of the ups and downs, but they were 9 months with him here. Most of the time I could hold him, Isla could interact with him, we made so many memories in that time, and I have a million beautiful pictures of him that were taken in that time. Those extra 9 months will always be treasured.
I was recently thinking about the conversation that Greg and I had with Dr. Molter, Oakes' ENT who did the surgery to correct Oakes' deformed trachea right after he was born. In our conversation Dr. Molter told us that if Oakes had been born 10 years earlier he would have died from this deformity, but the field had changed so much in the last 10 years that with a slide tracheoplasty, Oakes should live a totally normal life. I remember feeling like we had dodged a bullet (and in hindsight, the first of so many!) and I just cried thinking of all of the babies that had died and the mothers whom had mourned in those 10 years because of a lack of knowledge to save them.
Today, there have only been something like less that 450 pediatric lung transplant in the world. Any day now we should get a call about the finding from Oakes' autopsy, and Greg and I both are literally excited to hear what his team has learned from him and his little organs, especially those miraculous lungs and all of their airways. And we pray that in much less than 10 years, there are babies that will be able to thrive and live amazingly long lives after having had a lung transplant.
So that is the quick update. We are OK, we are thawing, we are sad, but life is moving on. Please continue to pray for us, and especially for Oakes' donor baby and it's family this weekend as they will likely be remembering the death of their sweet little one.
We love you all,
Some images of our new-kind-of-boring days:
We have visited the Grant's Farm
And Isla was brave enough to have her face painted at the zoo
Isla had plenty of treats with Grandpa Dale when we went to Oklahoma
We have celebrated Great Grandma Ortyl's 90th birthday
We have played dress-up, and have taken walks,
See, we really have been smiling!
There is plenty to smile about.
We have found hearts everywhere!
We visited the CICU and saw Yvonne.
While we were there we helped to passed out frozen custard from Ted Drew's to the nurses, a treat from Mighty Oakes Heart Foundation & the Rose family. It was AMAZING to be back and see everyone!
We have befriended some super cute Sea Lions.
The ladies have lunched. We had a great lunch with Nurse Ali. Plus there have been numerous theraputic date nights, girls nights out for me, and a few fun dude outings for Greg.
Plus there has been lots of lazy, slow mornings, laying around and snuggling, just what we all have needed!
...and plenty of finger waves.