What can I say?. . .

There have been so many times I have tried to sit down and write about this last month or so of our lives, and every time I do a little someone ends up demanding my attention. Imagine that. He is sleeping right now and instead of trying to sleep too, I am going to attempt to sum up a bit of what we have gone through this month.

Even as I type that I know it is going to be impossible. How do you start to explain a total transformation of self that isn't visible or tangible to anyone else? When the doctor came in and told us that Zane might have Down syndrome, I honestly just sort of said, "Okay" at the time. I won't take the liberty of trying to tell Rob's side of the story, or attempt to explain what his soul has been through. I hope he will do that. Not on this blog necessarily but somewhere, so we can have it to share with our families in the future. That said, our stories overlap and intertwine and some of what I have felt has been part of what Rob has felt. There are kind of three experiences in this: mine, Rob's and then ours together. I know I can't get it all down, but I have to write this. I will never forgive myself if I don't at least try to capture some of what this journey has been for me.

The test to check for Down syndrome takes a week. What kind of torture is that? Zane was still in the hospital recovering from the infection in his lungs (we got to stay there with him, thank goodness) all hooked up to monitors and machines and that suddenly became the least of our worries. Our parents supported us so much. When I called my mom right after the doctor left our room, I could barely tell her what the doctor had said. My parents dropped everything and came up to the hospital immediately, something they continued to do all week for us, and which without, I don't think we could have survived. Rob's parents flew up from California for a day and for that we are so grateful. That love and support was much needed. Basically, there was a 50/50 chance of Zane having Downs and we had to just wait all week not knowing.

I was so hopeful. I know God is Almighty and I knew that He could make this go either way. We prayed SO HARD that he would not have it. Together as a couple and individually we poured our hearts out like I have NEVER done before in my life. The idea of always having a prayer in your heart took on knew meaning for me and I also never have fallen to my knees more in one week, ever. Priesthood blessings were a huge part of that week as well. Rob gave Zane a blessing through which Rob's own personal struggle could be felt. Rob and I received blessings from our fathers. But something happened to me and Rob as a couple that is indescribable, something that only Rob and I will ever truly understand. I can only simply say we were drawn closer together. But it was incredible. We were always in contact with each other, always touching, always sitting close, always looking at each other. I needed him so badly, but what I needed was him and all he was going through. I didn't need him to tell me everything was going to be fine. I needed to know his thoughts and his fears, I needed him to know how I felt. I needed to cry with him and I needed him to hold me as we lay in the hospital bed in the middle of the night. I needed him to come to me, and he did, just as much as I ran to him.

But as I said, I was hopeful. I understand the gospel well enough to know that just because you have tried to do everything right in your life and then you pray hard for something it doesn't mean it will happen. Faith is one thing, there are all the "Come What May" and "But If Not" conference talks that kept coming to mind. And I understand that and hoped I would be able to fully accept whatever it was that was God's will....But hope is something entirely different than faith and it is a gospel principle as well. One that, while you have faith and understand that what you want might not be what happens, you can and should still have hope. At least that is how I see it. There were times when I could see what the doctors were talking about when I looked at Zane. There were times when it took my breath away to think that he really was Downs. I cried about. I thought about it a lot. But there were also positives to hold onto and I didn't want to let them go. Zane really didn't have many of the markers, and his heart looked great, and he was getting stronger everyday, his muscle tone was good, and he passed his hearing tests, and he was nursing and doing well, and his eyes were amazing and would focus on Rob so well. I refused to sink into some kind of despair before the results were even in. So I kept my hope.

But it must be said that the despair I mention isn't, and never was, anything about Zane. It was personal despair, getting over whatever our expectations were of what Zane's life was going to be like. Which now, as I look at it, is kind of funny. Of course parents have expectations of what their children's lives will be like. We have expectations of what our own lives will be like. But does anybody's life go just as planned? Accidents happen, people make bad choices, people get sick. No one knows what may lie ahead, we just like to think that we do. The simple prospect of Zane having Downs just seemed to change everything all at once, and I think that was what was hard. There was nothing gradual about it. It was all of a sudden and in our face and the shock and adjustment that it took is the "experience" I am trying to articulate here.

That week was crazy. Rob had to start back at work so I spent the days at the hospital, trying to learn with Zane how to breastfeed as he was weaned off the IV and pumping to get my milk supply going. My mother kept me fed. She brought lunches and dinners almost everyday. My brother and his wife came and visited, as well as a few other close friends. The support and love we received in the form of emails and messages and gifts and word-of-mouth was incredible and overwhelming. We can never begin to express our gratitude for all of the amazing people we have around us. Just know that every single out reach, large or small, from someone close or just an aquaintance, was felt and appreciated.

The implications of what it meant to have a Downs baby, and have it be our first, all the unknowns and everything that seemed different, I don't know how we wrapped our heads around it. We went home with Zane still on oxygen and then got the call a couple days later with the results. Our Zane had Down syndrome. Now began a whole new crazy week of actually accepting the news. We had been through a roller coaster, trying to be prepared for anything. And now we knew and it seemed to start all over again. Rob took it really hard, I hope he doesn't mind me saying that, but his disappointment sent me into a downward spiral of wanting to just take Zane and go away so that Rob could have his perfect life that he had always pictured. I didn't want him to have to "deal" with this since it was something that was so unexpected for him. I felt sad that our life together no longer resembled the life he wanted. There were a few really hard days of Rob dealing with the diagnosis and me dealing with Rob dealing with the diagnosis, if that makes sense. Not that I wasn't have a hard time with the diagnosis as well, I was. I didn't know if I could the mother that Zane needed. But it was harder for me to watch Rob struggle.

But we came through it. The thing that healed us is spending time with Zane and being together. Rob reassured me of his love for me and for Zane. When you are with Zane, you know everything is going to be okay. He is so incredible and we can't believe he is ours. When you go through something that is difficult, you end up hearing a lot about other people's difficulties, people are more willing to share. And from that I have learned that everybody has their difficulties and their trials (although I no longer think of Zane as a trial) and many people I know and admire have gone through things that are much more difficult than what we are going through. Everybody has to learn things that they never thought they were going to have to learn. That is a big part of what life is all about. I now know that I am just beginning to be taught the lessons of life. Life is in no way about having things go perfectly. And while I don't know everything that life is about, I now know part of it is about how you deal with things that come your way that you didn't want to have to go through or that you thought you couldn't do. My brother told me when we were in the hospital, and I don't remember where he got this from, but "trials are God's way of making sure we are worthy of exaltation", or something to that affect. There are a lot of things I feel when I hear that quote but one of them is the fact that Zane already has exaltation. We have to work to be there with him. Rob and I were reading in Alma about the resurrection while we were still in the hospital and we both strongly feel and know that that day will be a glorious day for our family. To see Zane in all his glory. I hope we can live worthy of that.

Zane is awesome. He is doing well, gaining weight now and starting to smile. Life has been just like it would be with any newborn, and life will continue to be just as it should. Everyone has their story and this is ours. And we are blessed.