I think it's not overly melodramatic to state that I feel I've been walking through the valley of the shadow of death since we first found out Maddie was sick (March 1, 2011). That was just about 9 months ago.
I've learned that this is a very long, wide valley. There are lots of hills along the way and ever time I think I am coming out of the valley, I realize it was just another hill and I am are headed back in. The valley is hard to walk through, slow going and incredibly lonely. Sometimes I briefly, even repeatedly, meet others walking through the valley and walk beside them. Sometimes they carry me for a bit, and sometimes I carry them or we drag each other a few feet. But for the most part, I walk alone.
The amazing thing about walking through the valley is that at some point I became aware of the fact that I am walking on a well worn path. There are others ahead of me and too many behind.
What really humbles and astounds me is the goodness of our nature. For some reason, it is on our nature to leave directions to others while experiencing new paths. Road signs, helpful hints, rest areas, etc.
I am so deeply thankful to the CDH families ahead of me in the valley. For sharing their stories and educating me. For following our story and praying with us. For sobbing when Madelyn died and remembering to check in every so often. CDH Moms are the reason we have support organizations like Breath of Hope, Project Sweet Peas, and CHERUBS. And so many more.
These moms looked behind them and saw me and said, I can help her. And they did. That they had the empathy and energy to do something for me is humbling. That they somehow got far enough through the valley to look behind them and care gives me hope - one day the shadow of death won't be so dark and heavy over my life.
My friend Aubin Bryant has started to look back and see other CDH families. Her son, Liam and my daughter, Maddie we're bunk mates at UCSF. Our families became (and remain) very close. It was Aubin and another great friend who helped us pack up and head home the night Maddie died. They even cleaned our room at the Ronald McDonald house so we wouldn't have to worry about it.
Liam is very much alive today and has overcome so many complications associated with his CDH. His struggle and Maddie's short life have inspired Aubin to reach out. She has started an organization, Feathers of Hope. Her goal is to reach out to other CDH families by sending them homemade cards. Cards of encouragement, support and solidarity. I think her efforts are beautiful. I half think she's crazy because I also know how busy she already is. But for the most part, it's beautiful.
I hope you are able to find a small way to support her, even if you don't personally know a CHERUB.
Sunday, November 27, 2011
Friday, November 18, 2011
Playing with God
In the past few months I have not been shy about the fact that I am disappointed in God. So disappointed that I have often felt that He can not exist, does not love me, or is not a diety who is actually involved in our lives. And I still cycle through these feelings on my bad days. But I am having fewer bad days and continue to put a lot of effort into my "grief work". I feel as if there is a healing happening, although I am not now, nor do I ever expect to be, healed from Maddie's death.
I have read many books, articles, interviews, and blogs these past months. I have spent countless hours chatting, talking, writing and thinking about all of the hurt in this world and how it is possible that my God could allow any of it to happen. This morning is my first real breakthrough after all of this hard work and I plan to share it as best as I can.
I finally came to the conclusion (with the help of CS Lewis) that i did not know my God at all and it was time to start over in our relationship. Time to challenge some of the common and modern Christian notions (especially the ones that never sat well with me) and tear them down only to rebuild my relationship in stone. If you have been a regular reader of my blog, you have heard all of this before.
I am not going to spend too much time putting everything into context. If you feel like you need more context, I suggest you read a Grief Observed by CS Lewis and Tracks of a Fellow Struggler by John Claypool. If you are not a Christian reading this, I hope my words will help remove some of the resentments you must have against us. And if you are a believer, I do hope I don't offend but also challenge you to explore your own relationship with God on a deeper and new level. I will try to remain true to biblical principles (although I admit my understanding is still weak) and not to blaspheme (although this may be a matter of perspective).
There are several modern and common Christian "truths" that I am going to call out now. I believe they are false. Not lies, but not complete truths - a term I learned a lot about at West Point - equivocation. I don't pretend to have any complete truths either, but do hope to stumble my way closer to the "truth". I will list them now and then address them one by one.
1. We are called to worship God without ceasing.
2. Without God, we are sentenced to eternal damnation.
3. Anything that separates us from God is sin.
4. We need Jesus for our salvation.
5. We are called to mold ourselves into His likeness so that we witness and spread the light. This is what the commandments are all about.
6. The bible and prayer are the only ways to know God.
7. you have to go to church
8. Why is there evil? Why did all of that stuff happen in the Old testament?
9. What did Maddie die?
Hang with me my friends. One ancient and common truth is that we are God's children. This I wholeheartedly agree with. I also believe wholeheartedly that life is a gift from God.
Time to debunk some of the above half-truths:
1. We are called to worship God without ceasing.
I often give gifts to the children I love. And nothing makes me happier then to see them play with my gifts as if it is the most wonderful thing they have ever encountered. I recently gave Dillan a small leapfrog computer and he spends hours on it every day. He tells everyone he meets about his new computer. It makes my heart sing.
Life is our gift from God. We are to treat it with gratitude. We are to maintain it, indulge it and love it. Just as it is hard to watch a group of children laughing and playing tag without smiling, it should be impossible for us to fully live our lives without our heart singing out to God in thanks.
The idea that God would create millions of people to sit around all day and remind him of His wonderful and great and powerful character is lame. I image Luke's godson following me around all day worshiping and mimicking me. I imagine it would take about 2 hours before he was on a plane back to the east coast with a note that said "never again".
But now imagine God in heaven watching all of his children loving this wonderful gift he's given us. Laughing, sharing it with one another, working together to fix it when it breaks, finding new ways to love life. That is a God i can relate to. That is a God i can understand and love.
2. Without God, we are sentenced to eternal damnation.
Being without God is like a child who never plays. This child isn't damned. But as a parent, I know that play is an essential part of my relationship with Dillan. It is something I greatly mourn in Maddie's life. There is not necessarily damnation without God, but you do miss out on this one very important and amazing part of life. Just as Dillan may not be in a mood in which we are able to play together, I would never forsake him for it. I would just wait until he is ready again. As many times as necessary and however long it takes.
3. Anything that separates us from God is sin.
Just as I don't have the luxury of playing happily with Dillan for hours on end, neither does God have the luxury of watching me fully live life 24/7. Sometimes, I'm just not that into my gift. Sometimes I abuse it. Sometimes I purposefully break it or try to break someone else's gift. Sometimes I take it for granted, forget about it in my closet or throw a fit when my gift isn't doing more then I want. These things are sin my friends. Sin is when we stop loving life, stop appreciating our gift from God or think others have better gifts then us. These things may separate us from God as well.
4. We need Jesus for our salvation.
I love my dad. He is a great dad and a wonderful grandpa. But he is also a single man in his mid-50s. He does not regularly play with small children. But when he comes to my house, he plays non-stop with Dillan and all of our little playmates. He gets down on the floor, creates new games, laughs and has the patience of a saint. Without Dillan, this kind of play with a stranger's child would not be possible without it being really weird and probably inappropriate. Jesus is this bridge for each of us. By making friends with God's only begotten son, we can play nonstop with His father without any barriers. If we chose not to be friends with Jesus, we inhibit our ability to play with God and, again, fail to fully appreciate the gift of that is life.
5. We are called to mold ourselves into His likeness so that we witness and spread the light. This is what the commandments are all about.
I can think of nothing I want more in this world then for Dillan to grow up and remind me of Luke. I married a great man and would be proud to have Dillan emulate him. The same is true of God. We learn his character and seek his ways because he has set an example for us that will help us be kind, loving, well rounded people. That will help us learn to love our gift and play with Him with gratitude. The greatest commandant - to love God above all others and to love our neighbor as ourselves - is all about playing nicely. Most of my favorite memories of friends and family involve playing for hours and being silly, laughing like loons. Having enough in common and understanding how to best interact with one another allows for this kind of fun.
6. The bible and prayer are the only ways to know God.
Imagine if I called you every morning and we talked about the exact same thing at the exact same time. And we finished each call with me telling you everything that needed to change in the world and expecting you to spend the day fixing it. then i said a quick "i love you bye" and hung up. That would not be fun, would not be a friendship and would quickly turn into a toxic relationship filled with disappointment on both sides. This is how most Christians spend their quiet time with God, at least as far as I know.
Every night, my son crawls into my arms and we read stories together. He asks me a million questions and I do my best to answer them. This is why we read the bible and pray. To crawl into his lap and rest for a while. to learn what it feels like to have his arms around us, smell his smell, learn his breathing and read his stories. We learn more about him this way and him about us. We can ask him a million question and he will do his best to answer them. We can squirm and drift off and turn the pages too soon. We can whisper silly things to Him or tell him about our day once the books are done and we are cuddling in the dark. We can just feel his arms around us and feel safe. In addition to play, this is how children bond with their parents. He gives us His word and the power of prayer to be close to him, to be vulnerable with him. But these are not the exclusive ways to spend time with him.
7. You have to go to church
You don't. But church (and it maybe a church you have yet to find) is a weekly family reunion. It is where we can all come together and play with God and our siblings, including Jesus. It is where we find experts to help us fix our gift of life when we break it. It is where we become experts to help others (not just within the church family) that need help fixing their broken lives.
8. Why is there evil? Why did all of that stuff happen in the Old testament?
I don't know. "There is a more honest faith in an act of questioning than in the act of silent submission, for implicit in the very asking is the faith that some light can be given" (Tracks of a Fellow Struggler by John Claypool).
So many things in our history are nonsensical, both small and large. The crusades, the holocaust, disease, murder, hang nails, and stubbed toes. Without God, not only are we not able to play with him and fully enjoy this gift of life, but horrific things exist along side miraculous things for no purpose. All is just random and luck and chance. No silver lining, no cause, no light.
But with God, I can ask why. I can ask why all day every day and know that I honor Him by asking and that one day there will be an accounting for these things.
"I am really honoring God when I come clean and say, "You owe me an explanation." For, you see, I believe God will be able to give such an accounting when all of the facts are in, and until then, it is valid to ask" (Claypool again, I love this guy).
9. What did Maddie die?
I don't know. But I do know that babies with Congenital Diaphragmatic Hernia were not meant for this life and that any of them survive past delivery is a miracle of modern medicine (a fact I firmly believe has God's handy work all over it). So each minute of the 34 days with her was a miracle. Each moment of our pregnancy with her is a miracle. She is a gift from God. Dillan is a gift from God. And not necessarily gifts from Him to me and Luke. That is part of the truth and I don't know the rest of it yet. But their lives are Gifts directly from God to them. Much different gifts, enjoyed by them in much different ways. I will spend the rest of my life learning about their gifts as well as my own.
I take great comfort in the fact that every moment of Maddie's gift was full of unconditional love and devotion. I can't say that is true of Dillan's life, even though he is so young. But Maddie never knew a moment separated from the watchful eyes and loving care of her family and her medical team. That fills my heart with such joy and gratitude.
I will close with this final idea. For the most part, I am relearning God primarily through analogies. I have always thought, learned and understood most things through either direct experience or through analogies. You have to live life to understand analogies. The more fully you live life, the more analogies you understand. I believe God does this on purpose.
"What God was trying to teach...throughout his whole existence was the basic understanding that life is a gift - pure, simple, sheer gift - and that we here on earth are to relate to it accordingly." (you guessed it, Claypool again.)
I have read many books, articles, interviews, and blogs these past months. I have spent countless hours chatting, talking, writing and thinking about all of the hurt in this world and how it is possible that my God could allow any of it to happen. This morning is my first real breakthrough after all of this hard work and I plan to share it as best as I can.
I finally came to the conclusion (with the help of CS Lewis) that i did not know my God at all and it was time to start over in our relationship. Time to challenge some of the common and modern Christian notions (especially the ones that never sat well with me) and tear them down only to rebuild my relationship in stone. If you have been a regular reader of my blog, you have heard all of this before.
I am not going to spend too much time putting everything into context. If you feel like you need more context, I suggest you read a Grief Observed by CS Lewis and Tracks of a Fellow Struggler by John Claypool. If you are not a Christian reading this, I hope my words will help remove some of the resentments you must have against us. And if you are a believer, I do hope I don't offend but also challenge you to explore your own relationship with God on a deeper and new level. I will try to remain true to biblical principles (although I admit my understanding is still weak) and not to blaspheme (although this may be a matter of perspective).
There are several modern and common Christian "truths" that I am going to call out now. I believe they are false. Not lies, but not complete truths - a term I learned a lot about at West Point - equivocation. I don't pretend to have any complete truths either, but do hope to stumble my way closer to the "truth". I will list them now and then address them one by one.
1. We are called to worship God without ceasing.
2. Without God, we are sentenced to eternal damnation.
3. Anything that separates us from God is sin.
4. We need Jesus for our salvation.
5. We are called to mold ourselves into His likeness so that we witness and spread the light. This is what the commandments are all about.
6. The bible and prayer are the only ways to know God.
7. you have to go to church
8. Why is there evil? Why did all of that stuff happen in the Old testament?
9. What did Maddie die?
Hang with me my friends. One ancient and common truth is that we are God's children. This I wholeheartedly agree with. I also believe wholeheartedly that life is a gift from God.
Time to debunk some of the above half-truths:
1. We are called to worship God without ceasing.
I often give gifts to the children I love. And nothing makes me happier then to see them play with my gifts as if it is the most wonderful thing they have ever encountered. I recently gave Dillan a small leapfrog computer and he spends hours on it every day. He tells everyone he meets about his new computer. It makes my heart sing.
Life is our gift from God. We are to treat it with gratitude. We are to maintain it, indulge it and love it. Just as it is hard to watch a group of children laughing and playing tag without smiling, it should be impossible for us to fully live our lives without our heart singing out to God in thanks.
The idea that God would create millions of people to sit around all day and remind him of His wonderful and great and powerful character is lame. I image Luke's godson following me around all day worshiping and mimicking me. I imagine it would take about 2 hours before he was on a plane back to the east coast with a note that said "never again".
But now imagine God in heaven watching all of his children loving this wonderful gift he's given us. Laughing, sharing it with one another, working together to fix it when it breaks, finding new ways to love life. That is a God i can relate to. That is a God i can understand and love.
2. Without God, we are sentenced to eternal damnation.
Being without God is like a child who never plays. This child isn't damned. But as a parent, I know that play is an essential part of my relationship with Dillan. It is something I greatly mourn in Maddie's life. There is not necessarily damnation without God, but you do miss out on this one very important and amazing part of life. Just as Dillan may not be in a mood in which we are able to play together, I would never forsake him for it. I would just wait until he is ready again. As many times as necessary and however long it takes.
3. Anything that separates us from God is sin.
Just as I don't have the luxury of playing happily with Dillan for hours on end, neither does God have the luxury of watching me fully live life 24/7. Sometimes, I'm just not that into my gift. Sometimes I abuse it. Sometimes I purposefully break it or try to break someone else's gift. Sometimes I take it for granted, forget about it in my closet or throw a fit when my gift isn't doing more then I want. These things are sin my friends. Sin is when we stop loving life, stop appreciating our gift from God or think others have better gifts then us. These things may separate us from God as well.
4. We need Jesus for our salvation.
I love my dad. He is a great dad and a wonderful grandpa. But he is also a single man in his mid-50s. He does not regularly play with small children. But when he comes to my house, he plays non-stop with Dillan and all of our little playmates. He gets down on the floor, creates new games, laughs and has the patience of a saint. Without Dillan, this kind of play with a stranger's child would not be possible without it being really weird and probably inappropriate. Jesus is this bridge for each of us. By making friends with God's only begotten son, we can play nonstop with His father without any barriers. If we chose not to be friends with Jesus, we inhibit our ability to play with God and, again, fail to fully appreciate the gift of that is life.
5. We are called to mold ourselves into His likeness so that we witness and spread the light. This is what the commandments are all about.
I can think of nothing I want more in this world then for Dillan to grow up and remind me of Luke. I married a great man and would be proud to have Dillan emulate him. The same is true of God. We learn his character and seek his ways because he has set an example for us that will help us be kind, loving, well rounded people. That will help us learn to love our gift and play with Him with gratitude. The greatest commandant - to love God above all others and to love our neighbor as ourselves - is all about playing nicely. Most of my favorite memories of friends and family involve playing for hours and being silly, laughing like loons. Having enough in common and understanding how to best interact with one another allows for this kind of fun.
6. The bible and prayer are the only ways to know God.
Imagine if I called you every morning and we talked about the exact same thing at the exact same time. And we finished each call with me telling you everything that needed to change in the world and expecting you to spend the day fixing it. then i said a quick "i love you bye" and hung up. That would not be fun, would not be a friendship and would quickly turn into a toxic relationship filled with disappointment on both sides. This is how most Christians spend their quiet time with God, at least as far as I know.
Every night, my son crawls into my arms and we read stories together. He asks me a million questions and I do my best to answer them. This is why we read the bible and pray. To crawl into his lap and rest for a while. to learn what it feels like to have his arms around us, smell his smell, learn his breathing and read his stories. We learn more about him this way and him about us. We can ask him a million question and he will do his best to answer them. We can squirm and drift off and turn the pages too soon. We can whisper silly things to Him or tell him about our day once the books are done and we are cuddling in the dark. We can just feel his arms around us and feel safe. In addition to play, this is how children bond with their parents. He gives us His word and the power of prayer to be close to him, to be vulnerable with him. But these are not the exclusive ways to spend time with him.
7. You have to go to church
You don't. But church (and it maybe a church you have yet to find) is a weekly family reunion. It is where we can all come together and play with God and our siblings, including Jesus. It is where we find experts to help us fix our gift of life when we break it. It is where we become experts to help others (not just within the church family) that need help fixing their broken lives.
8. Why is there evil? Why did all of that stuff happen in the Old testament?
I don't know. "There is a more honest faith in an act of questioning than in the act of silent submission, for implicit in the very asking is the faith that some light can be given" (Tracks of a Fellow Struggler by John Claypool).
So many things in our history are nonsensical, both small and large. The crusades, the holocaust, disease, murder, hang nails, and stubbed toes. Without God, not only are we not able to play with him and fully enjoy this gift of life, but horrific things exist along side miraculous things for no purpose. All is just random and luck and chance. No silver lining, no cause, no light.
But with God, I can ask why. I can ask why all day every day and know that I honor Him by asking and that one day there will be an accounting for these things.
"I am really honoring God when I come clean and say, "You owe me an explanation." For, you see, I believe God will be able to give such an accounting when all of the facts are in, and until then, it is valid to ask" (Claypool again, I love this guy).
9. What did Maddie die?
I don't know. But I do know that babies with Congenital Diaphragmatic Hernia were not meant for this life and that any of them survive past delivery is a miracle of modern medicine (a fact I firmly believe has God's handy work all over it). So each minute of the 34 days with her was a miracle. Each moment of our pregnancy with her is a miracle. She is a gift from God. Dillan is a gift from God. And not necessarily gifts from Him to me and Luke. That is part of the truth and I don't know the rest of it yet. But their lives are Gifts directly from God to them. Much different gifts, enjoyed by them in much different ways. I will spend the rest of my life learning about their gifts as well as my own.
I take great comfort in the fact that every moment of Maddie's gift was full of unconditional love and devotion. I can't say that is true of Dillan's life, even though he is so young. But Maddie never knew a moment separated from the watchful eyes and loving care of her family and her medical team. That fills my heart with such joy and gratitude.
I will close with this final idea. For the most part, I am relearning God primarily through analogies. I have always thought, learned and understood most things through either direct experience or through analogies. You have to live life to understand analogies. The more fully you live life, the more analogies you understand. I believe God does this on purpose.
"What God was trying to teach...throughout his whole existence was the basic understanding that life is a gift - pure, simple, sheer gift - and that we here on earth are to relate to it accordingly." (you guessed it, Claypool again.)
Sunday, November 6, 2011
Make me eat cat food?
so in a moment of pure spontaneity, I promised my college friend Erika, that I would eat 9 cans of 9 lives cat food if she and her blog fans could collect 500 signatures for the petition to pass the CDH research bill. Not my finest moment and one of those bets I really hope I win, but at the same time, really hope I don't too.
Check out Erika's page here: https://www.facebook.com/BloomingWellness
Sign the petition here: http://www.change.org/petitions/to-increase-research-to-save-1600-babies-born-each-year-with-congenital-diaphragmatic-hernia
I'll keep you updated and if it happens, I will post the video here before making public on You Tube.
(Erika isn't completely nuts or exploiting me. Her original question is what amount of $$$ would it take you to eat 9 cans of 9 lives. The rest is my idea to help our Babies.)
Stay Tuned.
Check out Erika's page here: https://www.facebook.com/BloomingWellness
Sign the petition here: http://www.change.org/petitions/to-increase-research-to-save-1600-babies-born-each-year-with-congenital-diaphragmatic-hernia
I'll keep you updated and if it happens, I will post the video here before making public on You Tube.
(Erika isn't completely nuts or exploiting me. Her original question is what amount of $$$ would it take you to eat 9 cans of 9 lives. The rest is my idea to help our Babies.)
Stay Tuned.
Wednesday, November 2, 2011
I wish I was a Baller
There is a catchy song in which the rapper laments how short he is saying he wishes he was a baller. wishes he was taller. wishes he had a girl who looked good so he could call her. i'm not really sure what the rest of the song says (don't google it grandma!). Doesn't really matter. Just trying to set the tone of this blog so you get interested enough to read.
i've begun to accept Maddie's death as a reality. I spend fewer and fewer moments of my life praying and begging for God to reverse time or completely replicate her DNA and put her back in my womb. I haven't heard her phantom cries or expected a call from UCSF admitting it was an elaborate hoax for a while now. I miss her daily and am still mourning all of the details of the life she has not been living. But somehow, I'm beginning to make peace with her death. Emerging (maybe only for a minute) from the great darkness that has enveloped me for months.
But I wish I was a Baller. Ok, not really. But i do wish I was an artist. It makes me sad that there will be no more pictures of Maddie. And that there are details of her face that my untrained eye doesn't recognize as uniquely hers. I wish I had the talent to learn the exact bow of her lips and arch of her bow so that I could draw or paint or sculpt it. So there would be more of Maddie. More angels. More shading. More expressions. More everything. Explore her face without the tubes. Draw her with and without dimples (don't know if she had them). Put to paper what my mind's eye sees when I imagine her with hair and smiles. Pigtails. Scraped knees. Sheet wrinkles on her cheek just after she wakes up. Things that never were, but could be if i had the time and the talent.
I also wish I could write. Not my blog. I love writing my blog and based on some of your feedback, you love reading what I have to say (probably because you are crazy). But i wish I could do with Madelyn's life what Gregory Maguire did with Oz. What Christopher Moore did with Jesus's life. I wish i could take a story so familiar, but view it from a new angel. Create a world in which Madelyn still lives and grows. Fight all of the fights we would have had. Meet the man she would have married and imagine the grandchildren she would have given me. Add depth to her "character" and meaning to the life she would have lived. I wish i could write fiction in a way that would allow me to bring her to life for a few moments at a time, even if it is all fantasy.
I wish i had some kind of musical talent so i could create something incredibly simplistic yet beautiful in her memory. Something that would move the masses to cry and long and love all at the same time. Something that would inspire you to reach out and hold the hand of who ever is near.
But there are things we cannot change. I am an extrovert with just enough literary talent to share my heart on this blog without fear or apology. I am incredibly pragmatic and unable to imagine too much of a fantasy world. I cannot form a complete image of a world in which Madelyn still lives and breaths and grows, despite me wanting that more then anything in the world. I am a wife struggling to remember how to love her husband the way he deserves. I am a mother trying to balance my grief and duties. Trying to parent in a way that will not pressure my child to feel as if he has to make up for what we lost with Maddie.
I have also accepted that my relationship with God is a life long journey and have found some peace by calling a temporary truce with him. I have not denounced my faith, nor has it been renewed. But i recognize that much of my understanding of God and his character were like a house made of sticks, and then came a storm. So now I am determined to very carefully rebuild my understanding of God brick by painful brick. But i will not rush it or cut corners. And if that means I have to walk blindly for a while, I am ok with that. (and i'm really mixing metaphors here, hopefully i make a little bit of sense to someone out there).
It hurts. and i'm still sad. tears are so commonplace now that i rarely bother to wipe them away. but we (my family) are starting to emerge.
i've begun to accept Maddie's death as a reality. I spend fewer and fewer moments of my life praying and begging for God to reverse time or completely replicate her DNA and put her back in my womb. I haven't heard her phantom cries or expected a call from UCSF admitting it was an elaborate hoax for a while now. I miss her daily and am still mourning all of the details of the life she has not been living. But somehow, I'm beginning to make peace with her death. Emerging (maybe only for a minute) from the great darkness that has enveloped me for months.
But I wish I was a Baller. Ok, not really. But i do wish I was an artist. It makes me sad that there will be no more pictures of Maddie. And that there are details of her face that my untrained eye doesn't recognize as uniquely hers. I wish I had the talent to learn the exact bow of her lips and arch of her bow so that I could draw or paint or sculpt it. So there would be more of Maddie. More angels. More shading. More expressions. More everything. Explore her face without the tubes. Draw her with and without dimples (don't know if she had them). Put to paper what my mind's eye sees when I imagine her with hair and smiles. Pigtails. Scraped knees. Sheet wrinkles on her cheek just after she wakes up. Things that never were, but could be if i had the time and the talent.
I also wish I could write. Not my blog. I love writing my blog and based on some of your feedback, you love reading what I have to say (probably because you are crazy). But i wish I could do with Madelyn's life what Gregory Maguire did with Oz. What Christopher Moore did with Jesus's life. I wish i could take a story so familiar, but view it from a new angel. Create a world in which Madelyn still lives and grows. Fight all of the fights we would have had. Meet the man she would have married and imagine the grandchildren she would have given me. Add depth to her "character" and meaning to the life she would have lived. I wish i could write fiction in a way that would allow me to bring her to life for a few moments at a time, even if it is all fantasy.
I wish i had some kind of musical talent so i could create something incredibly simplistic yet beautiful in her memory. Something that would move the masses to cry and long and love all at the same time. Something that would inspire you to reach out and hold the hand of who ever is near.
But there are things we cannot change. I am an extrovert with just enough literary talent to share my heart on this blog without fear or apology. I am incredibly pragmatic and unable to imagine too much of a fantasy world. I cannot form a complete image of a world in which Madelyn still lives and breaths and grows, despite me wanting that more then anything in the world. I am a wife struggling to remember how to love her husband the way he deserves. I am a mother trying to balance my grief and duties. Trying to parent in a way that will not pressure my child to feel as if he has to make up for what we lost with Maddie.
I have also accepted that my relationship with God is a life long journey and have found some peace by calling a temporary truce with him. I have not denounced my faith, nor has it been renewed. But i recognize that much of my understanding of God and his character were like a house made of sticks, and then came a storm. So now I am determined to very carefully rebuild my understanding of God brick by painful brick. But i will not rush it or cut corners. And if that means I have to walk blindly for a while, I am ok with that. (and i'm really mixing metaphors here, hopefully i make a little bit of sense to someone out there).
It hurts. and i'm still sad. tears are so commonplace now that i rarely bother to wipe them away. but we (my family) are starting to emerge.
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