I’d like to tell a little story if I could so please bear with me. A month or so before Xavier went into the hospital Andrew and I had come to the conclusion that we were going to go back to China. It had been 2 years since the boys came home and everyone was healthy and calm. We had our schedules down, we weren’t scheduled for any surgeries, the kids were rocking in school. We were a family of 8.
It was time. And so we started the paperwork for a special someone who has been in my heart since I started advocating 4 years ago. And then Xavier went into the hospital.
And the world stopped turning. It never crossed my mind in that first week and even into the second week that we wouldn’t be leaving the hospital with him. He had pneumonia. RSV. That was it. Lots of kids get it. We would just get through this, go home, obsess over the medical bills and quietly panic every winter when the other kids got sick. And then it started getting weird. They started pulling in specialists from every department to try and figure out what was going on. Heart, kidneys, genetics, autoimmunity, GI, and on and on. And even when his kidneys failed and they put him on the ECMO machine, I lived in denial. He was coming home and worst case scenario was that we would have to do dialysis short term. My husband allowed me to live there because it kept me sane. And best case was that we now had every department on board and we would finally be able to figure out why he wasn’t growing, why he wasn’t thriving… Something I had been working to get since he came home! And frankly denial is a good place to live in when your head is telling you one thing but your heart won’t listen. Life without my guy just wasn’t an option. We had always known he wouldn’t have a long life like the other kids, but two years?? TWO YEARS?? No. Not happening! And so we fought. And fought. And God let us fight. We had hope. It was a daily roller coaster. Sometime hourly. And just when we had climbed the mountain and could see the other side (the lungs were clearing and they were going to slow down dialysis), we found the spot on his cheek. And then they realized that the spot on his hand had grown 10x larger within a day. And we fell back down the mountain never to find our footing again. We prayed, we cried. I made deals with God. So many deals. Anything to not lose my son. Anything to take him home with me. Please just don’t take him. Give me another 2 years with him. Another 6 months. Anything but now.
And everything was quiet. He was still.
We came to a point where we knew we had done everything we could. We had a meeting with all the doctors and they said the same. And so we made the decision to end life support. It was the hardest thing I will ever do. Ever. Even once the decision was made in my mind, it was getting the words out. Because once it’s said…
I kept wondering how I got here. We just came in for pneumonia. A cold. And now we were having to say goodbye? How could that be? But as painful as it was, I was at peace. I don’t know how that could be, but I was. I knew we weren’t alone. We felt the prayers, I felt my Grandma close by, my best friend, Kim, my MIL. I go through so many emotions every day. I cry, I laugh, I hide. I keep expecting to see him when I enter the kitchen, when I go into his room in the morning to wake up Ethan. And I miss him so much. Sometimes my heart aches because I miss him so much.
In those moments I have to remind myself that our lives aren’t over and his has just begun. And that is my one comfort. I WILL see him again. I know I will. And I know he is whole now. He is running and jumping and laughing and singing. And as someone pointed out to me, he is pointing down at me from heaven and telling people “That’s my mommy and she loves me so much!”
It’s crazy to think that all roads lead back to adoption. We took a beautiful risk when we adopted him and we have been forever blessed because of it. In fact, so many people have been blessed because of Xavier. The messages and letters I have received from people saying that they are going into nursing, physical therapy, missionary work, advocating, special needs teaching and so on because of Xavier has been incredible! We’ve seen it in our own children. My Maeve is set on becoming a special needs teacher because of her love for him. To think that our son was on this earth for 5 short years and he accomplished more than some do in their entire lives. He has changed lives for the better and all because of his smile, his innocence, his love of life, his will to live. And so I will continue to advocate for orphans in his name. And we will continue to adopt as God sees fit. We will continue to bring children home, whether into our family or by helping others, because that is what life is all about. Moving forward. Bringing families to children. James 1:27 “To look after orphans and widows in their distress.”
And so with that being said, yes, we do have an announcement. We are continuing our paperwork and bringing home two children. Yes, two. We had started the paperwork for one but when Xavier passed away we felt like we could now give this second one the attention and medical that was needed. A child that I wouldn’t have dared to bring home in my past life. And so we are bringing home two. We need prayers. We need prayers for calm, for peace, for certainty. The children are excited for their new siblings and I think this will really help with the healing process. Because of Xavier’s special needs, no child is now a “special need”. They are a child. And so whatever the future brings, it brings hope. It brings family. They will both have family and we are so excited!
http://reecesrainbow.org/wp-content/uploads/officialrrlogo350web.png00Michellehttp://reecesrainbow.org/wp-content/uploads/officialrrlogo350web.pngMichelle2015-10-22 13:40:132017-01-06 14:45:03MAX & SAWYER for the Jones family -- TX