Advent

Dear beloved Tavish, tonight I went to a church service that focused on honoring grief in the midst of the Christmas season. It was a very special experience for me because I got to light a candle for you, and honor you in this season. They spoke about the darkness that comes with grief, but how the light of Christ cannot be overcome by the darkness.

It made me think specifically of the purpose of Advent. In the season of Advent, the focus is meant to be on the time spent waiting in the darkness until the birth of Christ brings about the greatest light the world ever knew. I think too often we focus so much on the joy of Christ's birth that we forget the season leading up to it was dark and gloomy. When looked at from that perspective, however, treating December as "the most wonderful time of the year" is actually wrong. Christ's birth was the most wonderful event ever, but we had to wait and hope, and look towards his birth. The joy was in the waiting, and the hope that the light would come.

Looking at it from this perspective reminds me of how I feel about you. Life will never be the same again. At times it's pretty dark. But I have joy in the hope and the knowledge that I will see you again. Like Advent, I am waiting joyfully until the moment that the light comes into the world-the day that you and I are reunited. I can have this joy because of the hope that Christ gave us in coming to earth. And when I shift the perspective from "I must be happy because it's Christmas, and Christmas is a happy time of year" to "I am waiting right now, joyfully, expectantly waiting for the time that the darkness is gone," I don't have to pretend because the season is about waiting, and looking forward to the best that is yet to come.

Precious Tavish, I want to honor your memory, and I want to honor my feelings. I want to have a deeper connection to this season, beyond the surface excitement of love and presents. I want my life to truly reflect the change that God is working in me because I am your mom. I want to be able to say Christmas truly is the most wonderful time of the year. Not because of the pretty lights or traditions, but because it is the time of year that I can honestly say I understand the joy in waiting for the greatest gift of all.

I love you sweet Tavish, and I pray to God I can live my life in a way that honors you and allows your passing to have an impact on those I come into contact with. Run and play with grandpa sweet baby boy.

Until we meet again, I will be joyfully waiting.

 Love, Mom

Never Enough

My sweet baby Tavish,
had you lived, you would be almost 2 right now. I like to imagine that your dad and I would have dressed you up for halloween in the cutest little costume. I may have even convinced him to bring the dogs along. It would have been a big family affair. Instead, we had a night in with friends. We handed out candy to other kids that came to the door, and watched Hocus Pocus (it's a classic from my childhood. I'm sure you would have laughed and giggled at the silly antics in it).

I love the life I have, but I long for the life you had. I look forward excitedly for the day your dad and I will have brothers and sisters for you. I know that the path I am on now is vastly different from the one I would have been on if i had never gotten to love you. I try to keep in mind that God is guiding me and that He has a master plan in all of this, but that doesn't really make this season of life any easier.

You see, for as long as I can remember, I have struggled in the fall. The cooler weather, the darker days, and of course the non-stop storms, all make the fall a very hard time of year for me. But now, it is also the time that reminds me we are approaching another year without you. Even if my head isn't consciously thinking of it, my heart knows, and my body knows. I wake up with higher anxiety, and struggle more to make it through the day. My headaches increase, and I find it harder to find activities that I enjoy. My life is not the same without you.

I have so many things I want to do to honor you, but all of them are really big ideas, planted by a very real desire to use your story to change the world. Right now, I don't feel like I can do much of any of them. I am so busy striving for things that are good, but that I feel have no real importance to them. I don't know if I will ever feel like what I am doing has enough importance for the weight that has been placed on me to share the light that you gave me.

You are so precious, my sweet son, and I want the world to know this. I struggle because I want so badly to do you justice, and I am afraid I never will. Know this though, that I will always love you, and I will do my best to share you with everyone I can.

Love,
Mom

Heart struggles

Dear Tavish,
October has been a hard month. Lat year at this time you were snuggled safely inside of me. I could feel your kicks and flips. This year, I get to look at the beautiful pictures other people post of their babies, and hear about the kicks and flips other mommas feel. For some reason this is a harder month to acknowledge you're gone than previous months have been. My heart just hurts to have you in my arms, my sweet baby boy. You would be almost 11 months old now.

The longer I go without you, the more I want to have what other moms have. I don't care that I get to sleep in. I want to watch you sleep, snuggled in my arms. I want to hear your laugh, and see you smile. And if I can't have that with you, I want it with a brother or sister of yours. I want a sibling for you so badly right now. Badly enough to say that I want that above all else. Above getting my interpreters certification, above traveling, above all of it.

I wouldn't trade what I had with you for the world, but I want more. I didn't have enough time with you, and I desperately want that with another child. My heart is struggling right now. I want it so badly, but adoption is so expensive. IVF is cheaper, but there's moral issues with our situation. I don't want to choose to discard another baby simply because they have T13, but I don't want to wait until we have the money to adopt.

I know you're happy and healthy, but your mama's heart hurts right now. I miss you my sweet little one. I can't wait until I get to see you again. Until then, run and play. Say hi to the other Trisomy kids,  and give your grandpa a hug. I love you.

Love,
Mom

Sharing your light

Dear Tavish, As I write this, your dad and I are enjoying a train ride through Norway. Your great grandma is from there, so we're taking a trip to see the land that your ancestors, on your Dad's side, are from. It really is quite beautiful. I wish I could share it with you in person, I know you would love it. Your Dad and I are both adventurers at heart, and I have a feeling you would have loved the experience as much as we do. Who doesn't love gorgeous farm land and pretty lakes (fjords) surrounded by trees?

I think God uses adventures such as these to bring light back to my heart when things seem dark and hopeless. WhenI was in college, I went to England, and while there, the beauty and excitement of the land around me provided me with a huge shift in perspective. In both of these situations (now and back then) I began to look for that shift before the trip. However, it wasn't until I was arrived, seeing and experiencing how different life can be, that I started to really open myself to what God wanted to show me. A few days ago, I was having lunch with a friend of mine who also lost a baby, her little girl Addy, to Trisomy 18. She told me about a retreat she and her husband were going on for grieving parents. She explained that on this retreat, instead of spending the weekend crying about their loss, couples would spend their time looking at how to find joy in spite of it, and how to spread that experience to others.

That really resonated with me. I am a "fixer," and a "doer." It is really hard for me to let go of something unless I feel like I have been able to use that experience in some way. That's the thing about grief. In American culture, grief is a very private thing. Especially grief over losing a child. No one wants to talk about it because very few people actually understand what it is like. It makes them uncomfortable, so they would rather not talk about it. For Me, talking about it is how I process it. It's how I make sense of what happened, and how I figure out how to move forward. Going to a retreat that helps loss parents figure out how to use their grief, instead of just feeling it, gives me hope. I know I need to feel it, and I do feel it, but there's a difference between crying about it, and productively grieving. I don't want to just sit and cry. I want to use whatI am feeling.

Tavish, I think what I am trying to say is that I can't remain silent, and I won't. I haven't been, but I also haven't felt like I have had a way to make beauty from the ashes of this pain I am living through. Several months ago, I ran across a blog another loss mom is writing. It's called Jensengrey.com. A few days ago, this mom posted about how she was participating in "random acts of kindness day." She mentioned how she did a random act of kindness, and handed off a small card with a little information about her son Jensen and why she was doing what she was doing. Reading about it, I started to feel like this was something small I could do, not only to share your story, but to share my experience of Gods love and faithfulness through it all. I don't have a specific timeline I plan on following, although once a week seems like a good plan to start with. All I know is that I want to share you with everyone I can. Through this, I feel that that is more possible.

As a Christian, sweet boy, I feel like God calls me to witness to others. Infant loss is such a taboo topic, it is difficult to know how to use that to minister to others. This is one way that I can do that.

In the beautiful land of Norway, I can feel peace and quiet. I am drawn closer to God through the glory of His creation. I can see a little more clearly how to use my pain to bring relief to others, and I can begin to make my way back towards the light. It isn't a huge leap, but it does provide me with a glimmer of daylight. Not just of being able to survive with the pain, I've been doing that for a while, but to learn how to thrive in the midst of it.

Run and play sweet boy. Say hi to Addy and Hannah, and give your grandpa a hug and a kiss from me.

 Love,
Mom

Love God, and do what you want

Dear Tavish, when you were inside me, growing, and strong, you were loved. You still are. There are times that I look back and remember how I felt. You didn't seem real to me. I could feel you, and I could see how big you got by the size of my belly, but most of the time it still felt like a dream, completely surreal. There are times I think about the three days I held you in my arms, and it still feels like a dream, almost like it never happened. I know it did, because of the hole in my heart, but sometimes its hard to get my head to realize that. Because my head and my heart don't always coincide, I have a hard time accepting that I always did everything I could for you, that I loved you the best I could. But I'm trying to realize that. I'm trying to let go of the part of me that says I made the wrong decisions, that if I had loved you more, better, you would still be here. That its my fault you died. Growing up, I was taught to believe that if you believed something you had to live a certain way to show it. The problem was, I wound up believing that if I didn't live exactly the way I was told I should then that made me a bad believer. A fake. In the same way, I was told that in order to be a good adult, I needed to act a certain way, I had to fulfill my responsibilities. This is true, but those responsibilities did not just mean basic life requirements (going to work, cooking food, paying my bills). They meant belief requirements as well. As an adult, I do hold certain beliefs-about the way God wants me to live my life. But those beliefs are not the same for everyone. There are some things that i think are ok to do, that others do not (for example, I wear jeans and shorts, and cut my hair, but a good friend of mine wears skirts, and long sleeved shirts, and has never once cut her hair). Neither of us is wrong, it's just different. But when you are told that you must act one way in order to be a "good believer" or a "good adult," it makes decision making harder, especially when there isn't a clear cut "right way" to do things. When I found out that you had Trisomy 13, I was devastated. I had never met anyone before with this condition. I had never even heard of it. It was completely alien to me, this new territory I found myself in. When you're raised with a prescription for how to act, life is easy. When that prescription gets taken away, it's like stumbling down a mountain path in the dark. There is no light, there is no clear direction. You hit a fork, and both ways travel south, but you can't see which way is the better way to go. So you make your best choice based on what the path behind you looked like, and you keep going. I felt like I knew I had made the right decisions while you were inside of me. I researched, and I fought for you. There wasn't much to do for you physically, because my body was taking care of all of that for me. You were safe, and warm, and cared for. Your body was relying on mine, so I made sure to eat what I was supposed to eat, and to sleep as much as I needed to, and drink more water than I ever thought I could (half your body weight is a lot!). I knew at that point that I was doing all the right things, that there was nothing else I could do for you. It was in God's hands. But once you were born, all of that changed. I now had to follow through with the decisions you dad and I had made ahead of time. And in the moment, I felt like I was making the right ones. But in reality, there was no way for me to know what the outcome would be from any given decision, and looking back, I constantly wonder if I made the right ones. And here is the problem with that. I was raised believing that if you want to be a "good person," a "good believer," and for your life to "go right," you need to follow specific steps. If life doesn't work out the way you wanted it to, then its your fault. You have to go back and fix what you can, and do better in the future. But when you died, there was nothing else I could have done, at least not to my knowledge. I did all of the right things, and your life was still cut so terribly short. So what does that leave me with? That I must have screwed up somewhere. If life is supposed to work out by doing the right things, then I must have done something wrong. It must be my fault in some way. I must not have loved you enough, or cared for you enough, because that is the only explanation I have for why you did not live. It's awfully hard to reconcile what you were raised to believe about life, with how it actually turns out. When I was in college, I had a conversation with a professor of mine. We were talking about a boy I was dating, and he asked me how it was going, and somewhere along the line, the topic of kissing came up. I mentioned that I did kiss my boyfriend, but that my family didn't like it because it was "dangerous." His response was "so is hand holding." Then he told me the most profound thing I had ever heard before, "love God, and do what you want." This advice has popped up in my head a few times since then. It is certainly something I have struggled to remember over the years. The things is, God doesn't ever promise me that life will go well if I do action ABC. In fact, he specifically promises that following my beliefs will result in greater hardship. He does, however, promise eternal life in heaven after the fact. Looking at it from this perspective shows me something. There was only one right choice I could have made in all of this, and that was to give you a chance. To carry you for as long as I could, and to provide you with the best chance at the best quality of life. I did that. The rest falls under "love God, and do what you want." There is no right or wrong decision in this situation. And regardless of what I chose, I had absolutely no control over the outcome. That is scary, but it is also liberating. It tells me that I was not just a "responsible mother" who took care of you because I had to. I did not make bad decisions, and it is not my fault that you died. I love you very much, Tavish, and I can't wait until I can once again hold you in my arms. Run and play little boy, and give your grandpa a kiss for me. Love, Mom

6 months

Sweet baby boy, a few days ago, it was 6 months since I met you for the first time, first you held you in my arms, first heard you cry. My what a cry you had! You proved to us then that not only were you a fighter while you were inside of me, you were going to continue fighting as long as you could in the bright, scary world. We thought we might only have minutes with you. The doctors said you were having a hard time keeping your heartbeat up. Then they handed you to me, and with the steady beating of my heart, you were able to regulate yours. I felt your warm little body against my skin, felt your chest rise and fall. It was the most beautiful moment of my life. You felt like a dream. I couldn't believe that God had entrusted such a beautiful baby as you to me. To love and care for as long as you lived. Today, it has been six months since I said goodbye. 6 months since I last held you in my arms, last felt your strong little heart beat, least felt the rise and fall of your chest, or heard the little whimpers you made when we moved you fro67m my arms to your daddy's. That day was the hardest day of my life. I love you so much, and I never wanted to let you go. Never wanted to have to say goodbye. No matter how much time I got with you, it would have never been enough. I was never going to willingly let you go. But I knew you were ready. I knew that you had fought for as long as you could. I could tell you were tired and wanted to rest. So your dad and I agreed to let you. We held you, and loved on you, and made you as comfortable as we could. We watched as you took your last breath, and said goodbye. We knew you were going to a better place where there would be no more struggles, no more limitations on what your body was capable of. 6 months ago, we made the decision to allow you to be better off, regardless of how much it hurt us. Now, 6 months later, the pain is slightly more bearable. I don't spend as much time crying or feeling depressed. But on special days, or anniversaries, it is harder than on normal days. Last night I had a dream about you. You were surrounded by lots of people. All of my family members, including my dad, and all of Marc's family members. You were sitting up, laughing and babbling. You were perfect. There was no cleft that made it hard for you to eat, and your hair was blonde. You had blue eyes, like your daddy's, and you were so chubby. It was obvious to me how happy you were. You waved your hand at me and smiled. That is the first time I have dreamed of what you might be like instead of what you were. It is the first time that waking up made me sad that it couldn't continue, instead of being terrified of the nightmare and wishing it would end. I am sad that I don't get to have you with me, sweet boy, I am so very glad that you get to run and play in heaven with all the other Trisomy babies, and people that have passed on before me. I know you never met them here, but I really hope that you're hanging out with Addy and Hannah. Their moms are both very special people, and I think you'd be great friends. Make lots of friends, darling Tavish, and tell me all about them. I will see you again before you know it. Love, Momma

Questions

My brave little boy,
the last couple of days have been hard for Momma. I had four good days in a row, which I think is a record so far, but yesterday and today, not so much. I saw a video another mom posted about her little girl. This girl has full T13, just like you, but she is now 5. I know moms post things like this to give others hope. I love that they share their stories, and encourage others that T13 is not always a death sentence. But, right now, it makes me angry. It makes me want to scream and cry and throw things. Why not you? I know you beat the odds in many ways. I got to hold you for 4 beautiful days. The doctors didn't think you would even make it that far. You are my little rockstar, you fought so hard. But why? Why did you have to have apnea? Why couldn't the caffeine therapy have worked for you like it has for other kids? Why did I have to let you go? It's not fair.

My heart is broken. It feels like there is a hole in my chest that will never close. I know your dad and I will have another child someday. Well meaning people have reminded me of this on a few occasions. I smile, and nod. I know where their hearts are when they say this. That doesn't change the fact that I lost YOU. Right now, all I want is YOU. We won't get YOU back, and right now, that is the only thing that would heal this wound in my heart.

On bad days, like yesterday and today, I can't stop my mind from asking questions. Did we really do all we could to save you? Should we have looked in to the ventilator? We didn't want it because we thought you would need it if you had respiratory issues, and it wouldn't help. But you didn't have respiratory issues. You had apnea. It was a brain issue. I ask myself fi we had put you on the ventilator, would that have given the caffeine therapy more time to work? I have since heard stories of Trisomy kids that that helped, it just took a little longer. I know asking these questions doesn't change the fact that you are gone. But I can't help myself. I want to go back, I want to make things different, but I don't know that that would have done any good. I don't know that that would have changed the outcome.

I was told from the beginning that daddy and I should do our research, and make decisions that we would not regret. We thought we were doing that. But how can I not have any regrets when I lost you? I will always wonder if there was more that could have been done to save you, especially on bad days. My biggest regret is that I couldn't save you. There is no way to change that; I don't want to change that. I am happy that you are whole and healed now, but I wish more than anything that you were still in my arms.

I will always love you, sweet Tavish.

Love,
Mom