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

Bright spots

Dear sweet Tavish,
As the weeks go by, it gets easier. Not easier to know you are gone-I still wish with all my heart that you were here with me, in my arms-but easier to bear the weight that comes with that knowledge. People ask me how I am. I still respond with "ok." i can't say good, I'm not sure I'll ever be able to respond honestly that I am "good." How can a mother that has lost her child be more than ok? Life goes on, and some days are better than others. There are bright spots, however; times when the weight of your loss doesn't leave me feeling like Atlas-carrying the weight of the world on my shoulders. Today was one of those bright moments.

The sun shown outside today, and for once, it didn't seem too bright to me. I was happy to let the sunlight filter through the gloom in the house. I went to the chiropractor, and didn't have to remind myself that if I didn't, I would regret it tomorrow. I did basic stuff, but it wasn't exhausting to do so. Someone mentioned their baby in class, and it didn't make me cringe inside.

I write this to you, and I think "these don't sound like huge accomplishments. This is basic life." But then I look back on the last several weeks, and even several months, and I can see the change.  Life has not been kind, and it has been a struggle to go through it. Days like today remind me that it was not always so, nor will it always be so. This burden will become easier to bear.

I laughed for the first time in a long time last night. Your dad hit me with a pillow, and I laughed and hit him back. We were playing. I can't remember the last time he and I played. It felt good, with no guilt attached to it. It was a bright spot, in an otherwise difficult time.

I miss you more than I can say. Loving you is one of the hardest things I have ever been given, but I wouldn't change it for the world. I can't tell you how much joy I have in the midst of this; knowing that you are in heaven. Through my tears, I can thank God that you are perfect, and that your body is whole now. A friend of mine shared with me a vision she had had of her daughter being able to introduce her to all of the other Trisomy children that had passed away. I know you will do the same with me one day.

I miss you now, but I know that when we meet again, it will be so much better. I can't tell you how much I long to hold you again, but I know you're having the time of your life. When you were inside of me, I told you about your Grandpa, and how I wished you had had a chance to meet him. Now you have. You get to see him every day, and know the love he has for his grandkids. You get to hear all the stories he has about me when I was growing up. I am not happy to not have you with me, but I can say that I have joy, knowing you are in a much better place.

The more often I can look at the situation with joy, rather than the deep pain I feel over losing you, the easier it is to see the sun behind the clouds. It helps to make the bright spots a little more frequent, the dark a little more manageable.

Run and play little boy, with a brain, lungs, and a heart that will never fail you.

Love,
Mom

It's always darkest before the dawn

My darling Tavish,
It has now been a month since we said goodbye; a month since I last held you in my arms, and kissed your soft fuzzy head. The last couple of days have been hard for mommy. I don't know how to express to you what I have been feeling-I'm not sure there's really a name for it. I do know that for past three days, my anxiety has been harder to manage, and my desire to get out of bed gets less and less. I'm not sure that I would have gotten out of bed at all yesterday if it weren't for the dogs. Right now, I can't really say that I care about much of anything. This past month has gone by in a blur-at once feeling like eternity, and the blink of an eye.

People have asked me if this feels the same as when your grandpa passed away. I had to think about that one for a minute. I'm not really sure how to answer. In some ways it's the same-the grief comes and goes, I have good days, and I have bad days. Sometimes the bad days stretch in to a few bad days. Thankfully, they don't last long before a good day comes around again. Sometimes a single day can feel like a rollercoaster; the highs and lows blurring together at the edges. We never got to bring you home, so life here feels much like it always has. But that's where the difference comes in. When your grandpa died, being at home away from the constant reminders made it easier for it all to feel like a bad dream. It made it easier to not think about. But with you, I have so few memories, I don't want to not think about it. I want to cherish the memories, and the time we had together. I don't have the luxury of forgetting the bad and only thinking of the good. For me, to let go of one memory is to shorten what I had with you. I could never do that. I love you too much to separate out the good from the bad. With you, my sweet little boy, they are forever linked.

Dear Tavish, as the days go by, my grief does not really get any easier to bear. It takes different shapes, and sometimes I feel like I'm not really grieving at all. I hang out with my friends, and we talk and laugh, and act as though everything is the same as its always been, because it is. Nothing has changed. That, my sweet boy, is the hardest part of all.We were supposed to bring you home, to hold you, and sleep next to you. The fact that I know it should have happened and didn't makes it all the more difficult. I have the memories of what might have been.

As I continue to move forward, father away from you, and closer to what life brings next, each step like I am saying goodbye all over again. I don't want to ever move so far forward that I have forgotten what it was like to have you with me. That is my greatest fear, and what makes it hardest to continue on in this journey of grief. I have lost those close to me before-my aunt, my dog, my dad, and now you. For each of them, the further I leave them behind, the harder it is to hold on to them. I remember events, like snapshots in a photo album, but I start to forget their faces, their voices, what it was like to hug them, or hear them laugh. With all of them I had a lifetime. With you, I had but moments. I don't know what this journey will look like at the end, but I do know that I don't ever want to lose you, the way I have lost my connection with others that have gone on before. It's easier to forget, to refuse to look back, but doing so jeopardizes what I had, and removes the blessing that you are.

My sweet little one, I promise you that as much as it hurts, I won't ever stop thinking about you, and telling your story. I want others to feel like they knew you. I want everyone to recognize just how special you are, most of all me. Say hi to your grandpa for me.

Love,
Mom

Fleeting glimpses

Darling Tavish,
It has now been a month since you were born. In a few days, it will have been a month since we said goodbye. In the past month, I have been blessed more than I can express. The friends your dad and I have, have been amazing. It has been a rough month, but with God's help, and the support of the people around us, we have survived.

We had your celebration of life service a little over a week after you passed away. It was beautiful. We sang Christmas songs, and told people al about you; how brave and strong you were, and how thankful we are that we got to spend the time with you that we had. It was good to be able to share you with everyone. There's no better way I can think of to celebrate who you are, and I feel very certain that it was exactly what you would have wanted.

A few days after Christmas, your dad and I went on a short trip. We went to Fredericksburg and walked around all the cute little shops there. We also went wine tasting at a cute little winery not far from our hotel, read books, and went to a ranch. There were so many animals, and we got a lot of good pictures of them! You would have loved seeing all the animals. There were normal safari animals like giraffes, and zebras, and wildebeests, but there were also several I had never heard of before (and sadly can't remember the names of 😞). I do wish I could have shared that with you.

Today, I finally felt like i could handle watching a show called "Call the Midwife." I'm taking a break from work for a few weeks, so I have a lot of free time right now. That show is one I had avoided until now because I didn't want the depiction of lots of pregnant women with healthy, happy babies to make me sad. It was a little hard, but God also used part of the story to make me feel a little bit better.

When your grandpa Tom passed away last summer, it was really hard for me. I loved my dad, and losing him made me really sad. I was really angry at God. Then, we found out you had Trisomy 13, and that anger got worse. I couldn't understand how a loving God could let so much bad stuff happen to me so close together. No one really has an answer for that kind of question, so I figured I would just have to get over it eventually. The best way it was described to me was that my walk with God was like a cloudy day. I still believed in him, but I couldn't see, or feel his presence in the situations that had occurred, and that was really hard for me. I wanted to, but didn't know how. That brings us to today.

In part of the story, one of the characters loses someone very close to her. She is hurting, and even says "I can't see God in this, how could I possibly?" Then one of the nuns responds "God is not in the event, but in the response to the event. He is in the people that surround you and support you through the event."

That was the most comforting response I have ever heard. When people try to tell me to look for the good in your passing, I can't. How could I? It's not a good thing that I lost you, and I don't much care about the good my response to it has done for other people. I want you back, and its not fair that I can't have you. But. I can see the good in how people have supported us, helped us to make it this far after your death. And I can definitely see God in their responses to us. It's not easy, but it does give me a slight ray of hope that things will get better. One of the other lines in the show said "You will not always hurt as you do now. You must simply keep on living until you feel alive again."

I miss you, my darling boy, and I will never stop loving you, but I also know the pain of your loss will lessen over time. As it does, the sun will begin to shine again. Until that happens, I must simply keep on living. It will get better, and today has given me a fleeting glimpse of that possibility.

Love,
Mom.