No words

On July 22, last year, I went in for an ultrasound to check on Gideon.  We knew his condition had worsened, but we didn't know how bad it was.  They told us that our son's condition was possibly lethal, and admitted me to the hospital (completely unprepared).  On July 25, he was born, and they began to work on doing what they could to help fix his little body.   This is a picture from later that day, after they stabilized him.  Today is Gideon's birthday.

On the 26th, they transferred him to Primary Children's hospital, where he could have surgery and the highly specialized doctors he needed.  Days later, our nurses and doctors told us that our son was not going to make it.  I remember looking at them, trying not to yell, scream, or cry and ruin the atmosphere of a NICU with fragile, sleeping babies, and all I could say was "I have no words."  That was the first day I was able to hold him, and I had no idea how many opportunities I'd get after that day.  They knew he was already in trouble, so they figured it was worth the risk to let me hold him, in case his condition worsened or he just simply didn't make it one night.

I typically don't suffer from a lack of things to say.  I have been an opinionated know-it-all for most of my life, and am a very social creature.  I tend to be optimistic, and sometimes more jovial or sarcastic than a situation calls for.  In that moment, though, I was so overwhelmed, so unsure of myself and my world, I had no idea how to proceed, least of all what to say.

Thankfully, Gideon's neonatologist seemed to understand.  He told me that it was OK not to know what to say.

There have been many moments since then when I have worked hard to find words to express what is going on in my heart and mind, and I have found that putting it into words does sometimes help.  Sometimes, though, there are no words.  As we approach Gideon's birthday, I have felt that way.  How do you celebrate a child that has broken your heart?  How do you reach out to someone who isn't here?  What do you say when your heart is thankful to have known someone, but hurts for all the moments you missed out on getting to know them better?

I can say Happy Birthday, but it's so heavy.  I wish I was saying it to him, watching him destroy his birthday cake with reckless abandon and make a huge mess.  I miss all the things I wish his birthday would have brought. I cut flowers from my yard today and we went to Gideon's grave and sang "Happy Birthday", leaving him the flowers.  It was very hard.

I can say "thank you" because I am a better human being after Gideon came into my life.  My heart is more tender, my mind more open, my life more focused on the things that matter most.  It's hard to feel grateful when I miss him so much.  I love him even though I barely knew him, I miss all the moments I haven't gotten to have with him this year.  I am thankful for the short week we did get to have with him, that my children got to meet their tiny brother.  And I'm thankful to so many friends and family who have been understanding, who helped when we needed it, who supported us in many ways.

Today was a day where I found myself without words quite often.  Even when my husband asked "How are you?"  I didn't know how to respond, and said "OK".  It was up and down.  I know some people have told me that they didn't know what to say to me after Gideon died.  I truly understand.  There are moments when words just can't...they just can't...

Love at first sight

I detest the story "Romeo and Juliet".  While I believe two people can connect almost instantly, whenever I read it, I am bothered by instant teenage crushes and drama and family tensions that shouldn't be, and I just dislike the whole thing.  I think there is much to be learned from the mistakes made by many of the parties within the story.  It makes me crazy when people think they are like Romeo and Juliet--they clearly have no idea what REALLY goes on in the story.  Perhaps part of my irritation with it is that I don't believe in love at first sight.

At least, I didn't believe in "love at first sight" until I became a mom to my second child.  Not that I don't love my first child, but the instant connection wasn't really there the first time around.  It was so surreal, so bizarre to be handed this child and make the transition between "my life" and "our life".  The first one blindsided me.  I had wanted to be a mother my entire life, but I still wasn't actually prepared for being a mother.  I am not sure anything can fully prepare you for the experience, besides just having it.

 It used to be so easy to go places, it used to be quiet, the messes I cleaned up used to be just my own.  I used to not have people follow me into the bathroom, answer the phone incorrectly, interrupt my conversations, and wake me up in the middle of the night with scary dreams or sick tummies.  I also used to not get to watch the magic of playing in the water, experience the excitement of discovering a new ability to roll over, laugh, crawl, walk, run, jump.  It used to be that I was missing out on hilarious moments where they say things the way they understand them.  I love watching my children learn, laugh, and live.

So after I had the experience of being a mother for a few years, and then I had a second child, I loved him immediately.  I knew some of what to expect, I knew it would be incredibly challenging, but I knew how many moments I'd get to have and treasure with him.  Each child after was the same story....love at first sight.  I held them and knew what treasures they contained, I loved the potential for getting to know them, the wondering what their eye color and hair color would be, what would make them laugh, all the adventures we'd have together.

Each successive child has come with a huge dose of love at first sight.  It has even begun to happen earlier and earlier, and I have caught myself crying at the sound of fetal heartbeats with my last few children.  I love them from that early on.  This has been a wonderful blessing, but it has also been terrible since Gideon died.  My son was pretty much a complete stranger to me, but I love him so much.  I have discovered that grief comes not just because of missing all we did get to have with those we loved, but also missing the things we DIDN'T get to have when they left.  Lost potential, lost chances, those are some of the things that break my heart the most.

Knowing that God has a plan that includes second chances has eased that aspect.  I know I'll get to see him again, and that makes it not as painful.  It is still very hard now, because he's not here with me, but I trust that I will get to know him, get to watch him laugh, crawl, walk, run, jump and say funny things, and that helps a little bit.  I still want to hold him.  I have missed him over the last several months, wondering how he'd have enjoyed snow, spring, fireworks, playing in the grass, eating new foods.  I am grateful to love him so much, grateful for that "love at first sight" that bonded me to him so early, but my heart misses all the moments that I'm not having with him.

I don't know how it feels to be God, but I do wonder if He loves us in that "love at first sight" way: he loves our potential.  He knows that each of us will come with new our own set of learning and challenges, funny things we'll say and do, odd quirks, our own unique sense of humor, and He is probably excited to watch us learn, grow, and discover.  I imagine He is so saddened when people throw away their potential, ruin the chance at wonderful moments they might have had.  I hope to not break his heart, and to help all of my family members do the same--reach that amazing potential they have somewhere inside.

Extra hugs are in order tonight, anyone who wants can join me in giving their loved ones an extra dose of "I love you" in whatever way is most meaningful to them.  I'm grateful to have so many loved ones still here with me, and I hope they know it, and I hope Gideon knows he is loved too.

Smooch powers

I have a thing with X-men and really with all super heroes.  I love the idea of people with super human abilities, and I wish I had a few, or at least one really good one (NOT mind reading, that would be horrific).  My sister and I had a funny discussion once about our sibling group and what our super hero abilities would or could be.  I was already a mommy, and (among other things) she suggested that my kisses really could have healing power, just like my kids think they do.

Last night in the middle of the night, my 4 year old stumbled into my room, and first over to my husband's side of the bed.  "Oops" he said, and then padded his way over to me.  "Smooch?" he questioned, and I gave him a little kiss and off he went back to bed.  I'm not sure why he needed a kiss in the middle of the night, but I'm glad that last night, I had super power kisses that helped my son to sleep.

I wish my super hero kisses would have been enough to fix Gideon.  I wish my little man's sincere kisses would have been enough to heal Gideon.  I wish we could do "Kiss o war" like I do with my 4 year old, where we see who can get the most kisses in first.  I'd have loved to see Gideon and his older brother try a "kiss of war" and laugh and play together.  As we approach the year mark of his birth, I miss Gideon a lot, and wish I could have seen him grow and change over the last year.  I wish I could have kissed him every day.

At very least, I hope that during the few precious moments I had with my baby, he felt truly loved, wanted, needed, important, and that his pain was made a little bit more bearable by the tender kisses and cuddles we could give him.  A week wasn't even close to enough, but a week is more than some people get, and I am really grateful that we got that much time.

I love you, and I miss you, Gideon.  I'm glad that death isn't a forever loss, but I still miss you.

I don't want to miss a thing

It is amazing to me how much it still hurts to see Gideon's name in print.  I don't have very many documents with his name on them--his death certificate, medical bills with his name on them, his social security card.  There is a finality, knowing that it's a limited experience, that sometimes makes me want to yell and scream when I get mail with his name on it, and sometimes I want to frame the documents carefully, knowing that there won't be many more of these coming.  I don't want to shut them out, because I want to see as much of him as I can, but it hurts to know he's not here.

I have been trying to sort and organize the desk in my room, something I haven't done in months, and I found several papers with his name on them this week.  It's an odd anomaly that when one starts deep cleaning, the mess gets worse before it gets better.  I feel like emotionally it's been a deep cleaning week too.  It's been a week where his picture has made my heart hurt, seeing his name makes my heart hurt, watching my children have a good time makes me long to have him with us.  Family gatherings for Father's Day were bittersweet, as all the babies are now crawling or walking, but mine is not here.  I have missed him so much this week.

I feel a heavy pull to make all my time really matter now.  I don't know how much time I will have here on earth, I don't know how much time I will get with any of my children.  Along with the feelings of heart ache and pain are feelings of gratitude for each day I have with people I love, and a very motivated desire to make my time here on earth count.  I want to be sure that my children have many moments of learning, laughing, and enjoying their lives, and I don't want to miss things.  For a long time, I have considered home schooling my kids, but Gideon's death has made that pull even stronger.  I don't want to miss a thing--I want to be more a part of their learning journey, to witness their discoveries, to learn with them and share new things with them each day.

I have some funny memories associated with the song "I don't want to miss a thing" by Aerosmith.  Video "I Don't Want to Miss a Thing" with lyrics  It was popular when I was in high school, and I enjoyed it a lot.  I also enjoyed singing and being dramatic (shocking--I know) and my sisters and I were known to bust into full lip syncing mode to this song.  It's so applicable to how I feel right now.  I miss feeling my baby's heart beat.  I wondered what he was thinking about when he was asleep.  I thanked God for the time we had, knowing that our moments were so brief, and wishing they would last longer than they did.  In hindsight, I wish I would have stayed awake just to hear him breathing...

I still wish I'd have spent more time with Gideon.  Hindsight lends me the perspective that my time was so limited with him, I was so overwhelmed at the time that I sometimes sat there with no words, just staring at my baby and wondering what would happen.  With the ability to look back, I wish I'd have brought books to read to him, so he could hear my voice more.  I'd have sung more, held him longer, taken even more pictures with him, kissed his hands and tiny feet more, and told him all about things I loved about living on earth.  I'd have talked to him, just to sieze that chance.

I can't go back.  I have no ability to redo that week, and I'm trying not to beat myself up about what happened.  We were doing the best we could with the knowledge we had at the time.  More than ever, I want to live so I can look back and not wish I'd have done it differently.  I want to sieze the opportunities I'm blessed with and make the most of them.  I don't want to miss a thing.

Treasures

"Lay NOT up for yourselves treasures on earth where moth and rust doth corrupt, and where thieves break through and steal.  But lay up for yourselves treasure in heaven, where neither moth nor rust doth corrupt, and where thieves do not break through nor steal."  Matthew 6: 19-20

That's a religious inspiration for this blog post, but it is not the only one, and the second is perhaps less religious, but follows the same idea.  Both inspirations have helped me to realize that I am quite wealthy, and growing wealthier every day.

After Gideon's death, a friend of mine referred me to a beautiful blog.  It's on facebook, called Mitchell's Journey  (Link here:Mitchell's Journey)  It has touched my soul: a father who lost his son to DMD blogs about his thoughts, feelings, experiences through grief and family time, and the memories he has.  I love it, he writes beautifully and expresses so well his faith and emotions.  On June 19th, he wrote a post called "A Measure of Wealth", which really resonated in my mind.  Like an echo, it keeps sounding in my thoughts and emotions.  My favorite quote from that post is "the measure of your wealth is how much you'd be worth if you lost all your money."

Since I read it, I have spent a lot of time thinking about my actions, words, and thoughts, and what I'd be worth if all of a sudden I lost all my possessions and money.  What am I worth?  What are my REAL treasures?  Our family read the scripture verses that I quoted earlier, and talked about worldly treasures and heavenly treasures.  The kids and I came up with a short list of what we considered heavenly treasures: memories, knowledge, family, and relationships.  I think good habits and tendencies are also possibly something that could be added to that "heavenly treasures" list.  I have thought about the parts of my life I can "claim" as measures of my true worth. 

I am loved, and grateful to be loved and supported by so many friends.  Gideon's loss made me feel so very aware of how many people cared about our family.  Just like the rain that kept coming down (out of season for late July and August last year), I felt like I was being showered with strength, support, love, and prayers.  I know that my family is loved, and that I love many people in return.  As undeserving as I am, I am truly loved, and I know I'd be loved even if I had no money. 

I'm gonna get a little mushy here, but you've been warned, so just skip this paragraph if you'd prefer.  My husband and I don't have a perfect marriage (surprise!!), we argue and miscommunicate sometimes, and we frustrate each other with our odd quirks and obsessions, but we love each other.   I know I drive him crazy sometimes, but he loves me to pieces, and I'm so grateful for the strength of our friendship, and that I not only chose him, but continue to choose him each day of my life.  And he chooses me.  I really believe that a marriage decision is not made just on the day that you're married, but every day afterward.  I choose to love him, and I am so happy that he continues to choose to love me too.  I still feel so blessed by his love, and so secure in our marriage, even despite our lack of perfection.  There isn't a place in the world that feels safer to me than when I am with him.  When Gideon was born, I struggled to regain control of myself.  I haven't ever trembled like I did as I worried over him, and wondered how we would deal with all that we were asked to deal with.  It took Scott's arms around me to calm me down, after about an hour of shaking.  I love him so much, and I still often look at him and wonder how or why it is that he loves me so much, and what I ever did to deserve a love like the one I have.  Not that I'm a bad person, or that anyone and everyone doesn't deserve to find love, but true love is an amazing treasure, and I don't take it lightly.

I have a love and a passion for music and learning, and if every tangible possession I owned suddenly was gone, I still have all my knowledge and musical talents, and I'm glad that I've taken time and put effort into learning and growing the gifts I was blessed with, and then helping others to grow theirs too.  What a treasure!!

My children....all my children.  I have known I loved my kids from day one of motherhood, (although I did wonder what I was doing, and how I'd survive the tiny bundle that somehow simultaneously slept a lot and didn't let me sleep at all) but since Gideon, my time and relationships with each of them have become far more precious to me.  I still don't hug as often as I should, I still lose my temper over things I shouldn't, but I am trying harder and doing better to make sure that they know they are my treasures, that I love them deeply.  I have always been a mom who pushes my kids to grow and work hard, but now when they ask why I set high standards for them (and make them do spelling and math during the summer), I sincerely and happily explain that I love them so much and want to see them become the best people they can.  I am so excited for the chance I have to make memories with them, because those are treasures I can take with me, no matter whether I have money or not.  I have only 1 week of memories with my Gideon, but I hold those memories so dearly, and so do all my other kids. 

They remember him, what he felt like in their arms, the emotions they had as they knew he was probably going to die, and we love that we had that precious time with him.  We also love that he's in our family forever.

I can't even begin to express how awesome my family is.  I have so many wonderful feelings for my parents and siblings.  I like all their spouses, and love to spend time with them.  AND on top of all that, I love my in-laws.  (Yes, they read my blog.  No, that's not why I expressed my love for them.)  My husband's family feels like a family I was always supposed to be a part of.  His parents and siblings have always been immensely kind to me, and I know they really love me, not just because my husband chose me, but because they actually love me.  And I love them too.  That's a pretty special deal; I know lots of people who tolerate their in laws, and who are tolerated by their in-laws.  I have a very special treasure in both my biological family, and all the extras that are attached to me through my siblings or my spouse.

I have so many beautiful memories: memories of camp outs as a child, experiencing new lands and languages, as well as different parts of the U.S.  I caught fireflies with my siblings, I visited the Sea of Galilee with my family growing up, I have ice skated on frozen lakes in Alaska with friends.  I fell in love young, married in a temple that looks like a castle, and we just celebrated 14 years of marriage.  We have 5 children, with our 6th on the way, and each one has been an adventure.  I love that I have memories of my kids at the zoo, in Bryce, 

Arches, Canyonlands,

Yellowstone, Disneyland, as well as many other fun adventures camping, learning, and even just the funny every day things that young children do and say.  My memories and the emotions they stir in me are of immense worth.

I always wish that I had more time with Gideon.  I don't think that will ever change; I don't imagine that one day, I'll feel content with just knowing him for a few days.  My attitude, though, as I've thought about "REAL treasure", has caused me to look forward, trying to build up treasures, and has helped me shift to being more grateful that I and my family had the chance to add memories with him to our treasure box.  I can't go back and make memories out of mundane moments in my past, I can't go and make different choices that would add to my talents or my knowledge, but I can go forward and make sure I am adding treasure each day.  And that's what I'm trying to do now, build up treasure that lasts.