Happy 4 month B-day Clayton

Happy Birthday little man!! You'd be 4 months old today, wow has time gone by. Some days I think it feels like just yesterday, others I feel like it's been a lifetime ago. Maybe it's because of how much I've changed. This journey sure has changed me, thanks to Clayton. This is the journey God had planned for us, it's a hard journey, but it is making me who I will be tomorrow.

So today, on Clayton's 4 month birthday. I reflect back on the other month birthdays, this one feels diffrent. Maybe it's because I'm getting used to the ache in my heart, or maybe it's because I know Clayton is in heaven having a wonderful time. It doesn't make me miss him less, it just makes it hurt a little less.
I have talked about my obsession with reading, well one of the books im deap into now is "Healing a greiving parents heart" it has 100 things to help mend your broken heart.(well attempt to) One suggested, writting a letter to your baby. So I thought it was good to do today, on his 4 month birthday.

Dear Clayton:
what i miss the most about you: I miss your sweet face & wild man hair! but really I miss your spirit, your strength & your Love.
what I wish I'd said to you: nothing really, I told you that you were such a strong boy & that Mommy & daddy loved you so much & that it was ok for you to go to Heaven, we'd see you again someday! 
what is the hardest for me now: It's the milestones, the firsts I don't get to experience, not that I never will someday, I just miss them with you, I wanted them with YOU!
What I'd like to ask you: who held you first in heaven? & will your siblings be healthy?
I'm keeping your memory alive by: talking about you daily, having your pictures all over the house, writing a blog, your memory bracelets, a just simply loving you with every breath I take.

I love you & miss you so terribly much, because of you, I have truely been given a wonderful gift. A gift of unconditional love. I have learned life isnt always easy, nor fair, but remembering the past, allows hoping for the future possible.
I Love you Clayton Michael- Happy 4 month birthday! XOXO-Mommy

Grateful

Today is a new day, the begining of a new season. So I thought I'd reflect on what im grateful for. Yes, there are still some things im grateful for!! :)
Clayton is still on my mind 24/7 but.......
I am functioning. I am sleeping okay. I am eating. I am laughing. I am crying. I am heart-broken. I am hopeful. I am changed. I am grateful, so very grateful.

I am grateful that I have Marcus, my friends and my family who have been my support through all this.
I am grateful that I have inner strength.
I am grateful that I have begun my journey on the road to inner peace.
I am grateful for the bad days because they make the good days so much better.
I am grateful for the opportunity to be a Mother.
I am grateful I am Clatyton's mommy.
I am grateful that I am healing.
I am grateful for hope.
I am grateful I suffer the agony of my heartbreak every single day so that my son didn’t have to.
I am grateful no other decision or experience during the rest of my life will be as tragic and heart-breaking as this one has been. Atleast I pray for that.

I am grateful, truely grateful.
XOXO-Emily

what is worthy of your blackboard?

I have now become obsessed with reading! Reading anything that somewhat relates to our story, or a story of baby loss. We don't know a lot of people personally that have unfortantly become a part of this "group" so anything i can relate to & not feel such like the "odd man out" I'm all about it! So recently I have been reading other blogs, about family's who have also lost the loves of their lives, their children. I came accross an article, where the Late Elizabeth Edwards spoke about the loss of her son, and and what it felt like.

I have often described the death of a child in this way: in life we have a blackboard on which we write all the things we are doing -- our jobs, coaching soccer, working at Goodwill, going to basketball games, whatever. And the board is full, so when the next thing comes along, we find a corner or the board to add a computer class or a space between other things for book club or sewing Halloween costumes. It is full and lively and seemingly all important.

And then your child dies, and all the things that were so important that you worked to squeeze them in? Well, they are all erased. And you are left with an empty blackboard. Everything you thought was important was not. And the next time you write something on the board, you are very, very careful about what it is. Your choices about what to do and how to do it are so much more deliberate. That is worth some of the space. And putting something on the board, well, it allows you -- in your words -- to function another day. And each day that you find something else worthy of the board makes it a little easier to put one foot in front of the other. And each day you functioned the day before makes it easier to function again. Are there still bad moments, even bad days nearly twelve years later? Sadly, there are. But they are not as frequent and they don't happen in that same emptiness you feel today. Now when they happen, we can turn to something that we have written, something worthy of our time, of his parents' time and we can function through that pain. As you will -- not without [your child], but with [your child]* not as a living, breathing daughter [or son] but as an inspiration and a helper to decide what is worthy of your blackboard.

Wow- I'd say she hit it on the head! thats it!
So as you go through your day, think about this. It's things like this, that give me hope.

Make today a beautiful day.

little band of memory

I am so humbled by all the continued love and support we receive from everyone. Especially with the resent request for Clayton's memorial bracelets, with every single request, my  heart is mending back together, bit by bit. Although I will never mend completely, I find comfort in this  & I smile when I look down at my wrist and remember my  sweet boy that has given so many people a gift, a gift of LOVE. With the little black band of memory I am also reminded of the journey we have been on. It's be one hell of a ride! I continue to "keep on trucking" on down the road! It hasn't been easy, but in some way, I am thankful for it. It has opened my eyes to LIFE & LOVE, sure there was life & love inside me before, but nothing compared to this. I am not the same person, but I know I am a better person because of all this.  I know this is the life God intended for Clayton & us to have, although i dont yet know why, nor am i yet "happy" about it, but I know that this is all I have and I'm left to make the best of it. 

So on I go, "keep on trucking"  and being thankful everyday for what I do have, with the little black bracelet following me on the journey.

Clayton's memorial bracelets

Clayton's Memorial Bracelets are here!!!! 

$3 each (or whatever you want to donate. all the $ we raise will be donated to the UI children's hospital & MDA

sizes- youth- black

adult- black or gold

they say- ALWAYS WITH ME~~CLAYTON MICHAEL

please let me know if you would like one

XOXO- mommy 

hope is found in a plastic storage bin

A wonderful friend said this to me the other day, & I choose to steal it from her, because I love it!
(& I don't think she'd care)

"Until then there's hope. My hope is found in a plastic storage bin full of  newborn outfits...waiting for that day that you might need them. Not b/c another child would solve all your problems -

far from it - but b/c Clayton was a beginning to your family, 

not an end."

This is so beautiful! I am so thankful for wonderful friends, that just know the right thing to say, not because they feel they should, but because they want to.This morning while getting ready for work, I walked by the nursery, which is still a nursery. Crib is still set up with bedding, recliner in the corner with the night stand, changing table & wall decorations all intact. I stopped and went in, and looked around. There isn’t much different than before Clayton was born, besides the multiple angel statues & the cleaned out closet. It’s as if we are still waiting to have a baby, as if we never had one.  But that makes me sad. Did I clean out the room too early? should I have taken everything out of the room, and not left anything? should I close the door? I know I did the right thing by cleaning it out early. It just would be way too hard now. I put everything away in our downstairs closet, the week of the funeral. It wasn’t hard, but I think because I was in denial that that was our reality.  I knew Marcus wasn’t able to do it, and if you know me, when I want something done, I do it, NOW! So I packed it all in new Rubbermaid’s, took apart the swing and bouncy, and carried it all downstairs, packed it in the closet, not for good, but until next time, because I already knew there WAS going to be a next time.  
Back to why the nursery stayed intact. Marcus hadn’t wanted to take down the crib or any of the furniture. He said it was his little reminder that this wasn't the end, the "sorry try again" was still playing in his head.(he's pretty darn amazing!) So there it's stayed.  Stepping in the nursery, it’s the same, the same as it was before Clayton, the same as it now & will be for Clayton’s siblings.

When I think about all the stuff he never got to use, packed away, it makes me sad. The clothes I was so very excited to buy or the lion bath towel that he would look so sweet wrapped up in, or the jogging stroller with Tacoma running by our side, it just makes me sad to think of all the baby stuff that was all so ready for him, but I hold out hope & happiness for the day I get to unpack it and be excited to use it again, for Clayton's siblings.

So like my friend said, "there is hope in a plastic storage bin"

As time goes on, I survive because I have hope.

University of Iowa childrens hospital radiothon

Today & tomorrow is the annual local radiothon to raise money for the University of Iowa children's hospital. I have listened to this for years. I always was so moved by the stories of the families.  This morning it was a little different. They were talking about us, our story, our son. We were now part of the reason they were raising money, we were "that" family.  It's still is so sad and moving to listen to the multiple stories of families affected by cancer, or micro preemies, or birth defects. It's just sad that things like that have to happen to kids. While driving home tonight, I was listening to it again, and they were talking about calling in and donating, and they said, most people never think it would be them, that they would never think they would be the family who would need the University. He was so right, never did we think we would be in the NICU, let alone did we think Clayton was going to be born with his condition and loose his life.

Clayton & some of his machines, might be scary at first, but you get used to it!

 This is why I am drawn even more to donate this year. The University of Iowa was amazing, I am so incredibly grateful for the experience. Yes it was not the outcome we wanted, but I can honestly look back and say I wouldnt have changed a thing about our experience. The university was wonderful, the nurses, the doctors, and the Love & support we received is irreplaceable. Clayton was given the best possible care and was Loved by so many. The nurses and doctors simply could have just "done their job" but they choose to go beyond. I often remember back and miss the NICU, I know it sounds crazy, but that was our home, that was where we became a family.
So i ask any of you, to think about all the babies & children that the University Helps, hopefully you will be so thankful that you have never/ hopefully will never have to experience the walls of a hospital.

I will be forever grateful & looking back on this time of our lives with a smile on my face.

sometimes I just miss him

I woke up Monday morning, Labor day to the blinds knocking against the window and a crisp chill in the room & it hit me, summer was over. Where did it go?  As I sat up in bed and peered at the picture of Clayton on the dresser, reality came quickly back. I know where it went. It went to grieving. 

Clayton was born on  Memorial Day weekend, the start of summer, A month was then spent in the hospital, day in and day out, then we spent the rest absorbed in our emotions & grief.  Wow, I can’t believe it’s gone. But with that comes all new thoughts about what is yet to come. Football season, raking leaves, Halloween, thanksgiving, snow, Christmas. and with that, I think of all the things we WONT be doing & the things Clayton will miss.  No “littlest hawk fan” shirt, no picture of him in the leaves, no Halloween costume, no “I’m thankful for mommy” bib @ thanksgiving, no little boy all bundled up in a snow suit, and no “babies first Christmas” stocking by the fireplace. Wow, this is reality; there is no firsts, at all. 

There are some days when I don’t think about what we & Clayton are missing, and I just think about how God had this all in his plan and that Clayton is in heaven, but other days, I just miss him, and think about what we had planned. This past weekend, while out and about I saw so many parents with their children, and I just thought, that COULD have been us, but its not. & that’s what makes me the saddest. I wanted that with him, with Clayton.  As time goes by, I am getting more comfortable with being in public, or talking with people, but I’m getting less comfortable with what we’re missing. I see other babies, whom are close to Clayton’s age, and I wonder if he’d be like them. If he’d be rolling -over? Or what size he’d be? We were with friends this weekend, and a neighbor of theirs was talking all about their new baby, newborn pictures, breast feeding, staying up all night, I had a moment, not in front of them, but silently I slipped away and just had my moment. It wasn’t that I wasn’t happy that they were happy, I was. It was just that it was reminding me of what I DIDN’T have.

I know this is going to happen, for petes sakes there are pregnant ladies and babies EVERYWHERE  I turn, but it’s one of those things, I just can’t prepare myself on how to react, to sum it up, IT JUST SUCKS.

I just miss him, sometimes I just have to say it, some days are great, some days are good, some days just suck! 

”A part of you has grown in me. And so you see, it’s you and me together forever
and never apart, maybe in distance, but never in heart.”
- Unknown

once a hawkeye.....always a hawkeye

As many of you know, Marcus & I are huge Hawks fans! This Saturday is the kick off of Iowa Football season! Normally I can't contain myself with excitement, but this year just feels a little different. I just can't help focusing on what "should have been" I know I talk about this a lot, but its just been so strong and overwhelming lately. I know a lot has to do with because Clayton would be 3months old, and I just am imagining the boy he would have been, and that's hard.
Clayton would have been all decked out in his black & gold. The boy had a closet FULL of hawks clothes! Christ, I had hawks outfits for when he was 2! I was obsessed with buying Hawkeye stuff for him. So I think that's why this season is just going to be different. It's not what is was "supposed to be".
but on the other hand, he's still a little hawkeye. In his short 26 days, Clayton sported his hawkeye stuff almost every day! Whether it were his hawkeye bedding, socks, onesie or blankie, the boy was supporting his team! Some of the most favorite pictures I have of him are Hawks ones! He was a hawkeye that's for sure!

I will never forget the saying, "once a hawkeye, always a hawkeye" which was from our nurse Bridgett. After Clayton had passed & Bridgett was preparing him. She brought in a clean Hawkeye blankie and said she was going to wrap him in that, she said, because"once a hawkeye, always a hawkeye." I will never forget that feeling. Everyone in the room cheered! He was our little hawkeye, always.... At Clayton's funeral service, Noelle our Chaplin talked about how much Clayton was a Hawkeye and how he coached us along the way & how fitting that he was in the U of I hospitals, right by his beloved stadium! This was So true!

This year's football season may not be the same, but I hold onto the fact that Clayton is cheering on the hawkeye's in heaven, in his Black & Gold.  GO HAWKS!  XOXO

Sometimes lifes not fair

 Happy 3 months Mr. Clayton. Wow what a ride this last 3 months has been. It's so hard to believe he'd be 3 months old today. Some days it feels like yesterday, but most of the time it feels like a lifetime ago. I have been through hell, and I feel like I'm on my way back from there. I have always said how I know we couldn't do this without all of your love & support. And I know I'll have days where, it just plain sucks. Today is kinda one of those days. I am just reminded of what should have been, and I think about how diffrent life would be. However I am always lifted back up from all or you. I was talking with a wonderful friend this morning, just about our weekend, and she gave me this wonderful quote. That is SO true, this is it! Someone gets it! 

'Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.

I am so honored that people see me this way. I know there are some days I wish I could just give up, but then I'm reminded of why I'm doing this. For the Love of Clayton and all that he was. He was a fighter, the strong one. So if he didnt give up, we surely can't. Life is not easy, nor is it fair, So I must try again tomorrow if im having a rough day today.

This past weekend we were out of town for a good friends' wedding. Marcus was part of the wedding party, So I was throwen in the middle of a new experience with all new people. Not many of which knew our story or where we had been for the last 3 months. It was hard, hard to be away from home, my "safe place", hard to be without people who knew what my heart was dealing with. but just when I thought I was all alone &(handiling it quite well I thought), a loving mother came up to me and said, "I'm so sorry. I just want you to know we've been thinking & praying for you." ok- I lost it, I was caught off guard. Here I was at a wedding and someone was kind enough to just let me know they were thinking of us. I had a few more moments like that over the weekend but overall the weekend was great! Good friends & good times. I was able to forget, maybe only for 5 minutes, but It was the start of putting our lives back together without the "what should have been".
Also while I was back, I was able to go visit a dear friends grave site. Which due to distance I had not visited since her passing. It was an increadiable peaceful feeling. I was excited to go! To talk, to cry, to laugh. With no one there. I asked her to please protect Clayton & to hold him tight & to give him kisses from all of us. I also thanked her, thanked her for being such a good friend and amazing person, that I knew Clayton was safe in her arms. I had loved her here on earth & I knew he was loving her in heaven. God wanted them both of to be in heaven,I just hope some day I'll see why.
So on today, which would have been Clayton's 3 month, I look back and say sometimes life's not fair, but nothing fair, it's what you make of it. I'm thankful for the times when I just have a moment & someone is there to say its ok, you can lean on me.
XOXO

Love Unconditionally

"The best love is the kind that awakens the soul and makes us reach for more, that plants a fire in our hearts and brings peace to our minds. And that's what you've given me. That's what I'd hoped to give you forever."......



Clayton's hand and foot mold

I can’t imagine what our lives would have been like, had we not had Clayton. He showed us what unconditional love felt like. When the day is over and I have nothing else but LOVE.
As a husband and wife, we have silently learned to support and depend on each other. I knew we were always capable of this, but it was through this time as parents that it surfaced.  I like to think I am a better wife, a better friend, and I will be a better mother.  I have my memories. Some good, some not so good. I have my faith. And I have all of you, friends, family & strangers, who have been there along side us, holding us up.

I have loved deeply. I have lost greatly, and I will grieve always. If I could take only one bit of this experience and pass it along, I'd say to
LOVE UNCONDITIONALLY 
Love those seen and those unseen. loving unconditionally, for the most part, will not stop any of the heartache. But when it does, accept that this heartache is the consequence our unconditional love. Don’t try to get rid of it. Accept that because you have loved unconditionally, you will grieve greatly. Take your own time to grieve, not someone else’s. And one day, you also will feel the broken pieces of your heart start to come together again.

My pain, my grief and my heartache are the consequence of loving deeply, loving unconditionally, and the death of  the greatest love in my life.

There is a quote that really fits this:

“Tis better to have loved and lost, than to have never loved at all.” 

- Alfred Lord Tennyson



XOXO-em

p.s- I am wanting to order rubber bracelets in honor of Clayton & as a fundraiser for the university of Iowa children's hospital & MDA walk (that we will be having a team for in February,more on that walk later)

I would like saying suggestions.

so far my ideas are:

you are loved

 - this saying is from the book wherever you are my love will find you

love you forever   

Always with me 

any suggestions would be awesome!

2 months ago- we said our goodbye

I have been anticipating today, all week long. The 24th, the day we said our goodbyes. I didn't sleep at all last night, I just laid there, thinking about how life was so different now, and thinking about how life would have been? I wouldn't have been sleeping anyways :) so that wasn't much different! I can remember his last night & morning so well, like it was just yesterday. I remember it with beauty and courage, but most of all, with LOVE.  It has been one hell of a ride the last 2 months since all of that. Many low points, but many high points too!  

I have chosen this picture for many reasons, but I wanted you all to know the wonderful LOVE story behind it. When we were married I searched for a "good" song as Marcus would call it, not the same old same old wedding dance song. I came upon the song, "this kind of love" by sister hazel, I fell in LOVE! Marcus did too! So the song was our first dance song. A few years down the road, while I was planning the decor of Clayton's nursery, I ran upon a sign that said, "can't get enough of this kind of love." which was a lyric in the song! I knew i had to have it for the nursery. During all the time we spent with Clayton when he was sick, I always listened to the song, & I used it for his memorial video and just felt it was exactly how i felt about our marriage & our son. So the picture you are seeing is the sign in the nursery, and its right, I just can't get enough of this kind of love. 

You can hear the song on my playlist on the bottom of the blog.

So today, 2 months after Clayton went to heaven. I reflect on the LOVE his life was, is and will always be.

XOXO

I'm thankful for you

I am most thankful for the people in my life, who have been there, no matter what.

Even when they don't have to



hand embossing-Marcus,Clayton & Mine-(had to do it in hawkeye colors)
this is Marcus' favorite memory/keepsake

 

We have so many wonderful memories. The ones that mean the most aren't the physical items, they are the beautiful words, LOVE & support from all of you. We couldn't have gotten through without everyone. We also couldn't continue to do ok without you still. There are still moments when I'm just having a bad day, or a moment. And someone emails me, or text me and I remember that, yes we will be ok. It doesn't have to be hard all the time. So I thank you again for continuing to support us. Clayton's life & death wont ever go away, so knowing you all remember it as much as we do, warms my heart and means more to us then you all will ever know.

Through everything, the things the comfort me the most, are the moments I feel, deep down to my core, that people get it, really get it. Thank Goodness most of you, dont really get it. Sadly some of you do. As much as I wish that no one else would have to know the excruciating pain of loosing a child. I am thankful for you who have, because your thoughts and experiences have made me not feel so alone. The relationships I have with these people will be cherished for the rest of my life, and I thank God & Clayton for allowing us to meet these people. A very special person in our lives sent me this poem, she knows from experience the pain. I am in awww of her courage and grace.

‎


"I lend you for a little time, a child of mine", He said.

For you to love, the time he lives, and mourn for when he's dead.

It may be for six or seven months, or twenty-two or three,

But will you, till I call him back, take care of him for me?

He will bring his smile to gladden you, and should his stay be brief...

You'll have his lovely memories as solace for your grief.

I can not promise he will stay, since all from earth return.

But there are lessons taught there I want this child to learn.

I've looked the wide world over, in my search for teachers true,

and from the throngs that crown life's lanes, I have selected you.

Now will you give him all your love nor think the labor vain,

Nor hate Me when I come to call, to take him back again?

 I fancied that I heard them say, "Dear Lord, thy will be done."

For all the joy thy child will bring, the risk of grief will run.

We'll shelter him with tenderness, we'll love him while we may,

and for the happiness we've known, forever grateful stay.

But should the angels call him, much sooner than we've planned,

We'll brave the bitter grief that comes, and try to understand"

As I read this, tears streaming down my face and clouding my vision, I wasn't just sad for me, I was sad for her. She lost her first son too, and it wasn't fair.

Another amazing friend who knows all to well the devastating loss, not once, but twice, sent me a message with this-

there are no words ...
the pain and hurt are too intense for words to describe ...
no words to describe the love and completeness Clayton brought to your life ...
no words to describe the immense void and loneliness that now remains...
no words to make it better .. 

In the many messages she sends me, I feel likes it me talking to myself. She gets it, she really gets it. I'm sad for that too because I wish she & others didn't have to get it like we do. Someone once told me, that there's this group we all belong to. No one really wants to belong, but we can't ever get out.  It happens when you loose a child, You all "just get it"

So as I close this out, I want to express my deepest gratitude to everyone, for their continued Love & support. This isn't just something that happened, or does it ever go away, but I thank you for being there, just because you want to.

XOXO

 

the simple things

This morning as Marcus & I were driving to work in the early morning fog. On the radio, marcus' favorite radio talk guy always tells what day it is, usually its something funny or just plane worthless, such as "chocalate chip day" or "hand shake day" but today, August 22, is "Be a angel day". Just the something i needed to start my day. Through all of this, I have found a new love to reflect on things. Just the simple things. To look at the clouds, to hear the wind blow,to say I Love You More. Things that just "happened" before, but now for me, they are part of who I am.




Windart sculpture(made by my dad)

 So I feel compeled to talk about what is Myotubular Myopathy- I've never been the type to really want to be a teacher, but i feel like i should "teach" a bit about this. But trust me, there are still things that get confusing to me and at the begining i didnt know anything about this. Please feel free to ask me questions, anything, I find peace & comfort talking about it.
Knowledge is power!! (ha- that's probably on some teacher's chalk board this morning!!)
People will ask what Clayton died from, and I'll say Myotubular Myopathy, and they look at me like i just spoke in another language   / huh?
Myotubular Myopathy is a genetic disease. It was passed onto Clayton from me. I am a carrier (which i did not know until Clayton was born) Clayton's form of Myotubular Myopathy is a X-linked form, which is the inheritated form & the most severe. I am a girl, therefore i have 2 X's, 1 good x and 1 with the mutation for myotubular myopathy. Clayton unfortantly got the bad x from me, and his Y from Marcus. As as boy Clayton has an x from me & a Y from Marcus. The mutation on the x causes the muscles not to get the required protein needed for muscle developement and strength. Which resulted in poor body tone, poor core strength, poor breathing, poor swallowing and eating. our bodies requires a lot of muscle strength to just simply breath. Clayton didnt have the strength. Babies who are born with the X-linked kind, are very sick and typically dont live past the first year. They have severe breathing,eating, secreation issues, and infection is a devistating risk. We had prayed this wasnt the case for us & Clayton. But that wasn't the path God had intended.
How rare is Myotubular Myopathy? 1-n-50,000 births. 1-n-500 family trees are affected in the world. So its incrediably rare. There was never any family history of it for us, it was just something i had in my genes that I had no idea. Almost everyone has something on their genetics, that could potentially be life altering, we were just unfortante to find out about it with the birth of our first born. I remember a doctor at the U saying, we're all just Mutts, it just depends how the stars align when we are created. That's so true!! but it makes me realize all the more, how lucky people are to have 100% healthy babies. Be grateful!! Please!

So what does the fact that I'm a carrier of Myotubular Myopthay mean for our future children? Those of which i'm aching to have in my arms. Since I have 1 bad x & 1 good and Marcus has no marks on his chromosomes (you got it, he's"perfect") he'll even tell you that!!! :) So in the case of a boy- we could have a child just like Clayton again, getting one bad x from me, and marcus' Y. OR we could have a boy get my good X & marcus' Y=resulting in a healthy boy. In the cases of girls. We could have a girl get my good X & marcus' X, which she'd be 100% healthy too, or we could have a girl get my bad x and marcus' X, resulting in a carrier. The reason she would not have the simptoms and be sick like Clayton was, is becasue marcus' X which is healthy, would overweigh my bad x, resulting in normal protien function. She would be a carrier, but would be just like me "normal" (ha ha marcus would beg to differ about that!) So yes we have a chance to have more healthy children, but it's just not going to be easy. There is a long road ahead of us. There's PDG with IVF, theres CVS,  & there's adoption. They are all equally scary. However the end result is to be a mommy & daddy, with a baby in our arms. This entire road has not been easy. It'll just be 1 foot in front of the other, and one moment at a time. We'll get there, I'm confident of that. I just pray for a little bit of a break this time.

looking back

Making Memories- Making his foot mold

So as I scan the first posting, I still cry my eyes out. The emotions and memories are still so new & raw. I still sometimes find myself thinking that this isn't happening to us.  I remember back when Clayton was born, We were in shock, and I kept repeating, "I hope I wake up from this nightmare" I had just hoped it was a bad bad dream. But it wasn't and its now our reality, and we've decided to deal with it! There are moments I go back to that and wish this didn't have to happen to US, but then my strength comes back and I deal with it again. I've always heard people say, things like this don't happen to us, it happens to other people. Well we are those other people now. It did happen to us. sometimes we'd say why us, but really- why NOT us!

I can remember so many little details of the short 26 days Clayton was here on earth with us. There are many things I've failed to talk about in the first blog, not because I don't want to, but because a lot of the hospital procedures have all blended together. And honestly we were under a "bit of stress" so sometimes my emotions just took over. Even though we were there all day every day, I forget a lot of stuff. Through all the hospital madness there were some things that we did that were the typical "dream" of having a new baby. We were holding him, cutting his nails, giving him baths(which he also loved) he was wearing our outfits, had our blankies, we had brought some of his toys from home (the seahorse was his fav) and Marcus was a pro at changing diapers!! I was pumping so he could still have my milk.Sure it was not ideal, but it was what we had and we were loving it. I look back and say, "I would never change a thing." yes i would change that he didn't have the diagnosis. but I can't change that. That was in God's hands.but I wouldn't change the wonderful memories we had as a new family, nor the wonderful care Clayton & us received.

Clayton was the Love of our lives and I was so proud to call him our son. Even though many people never got to meet him on earth, I feel he has touched so many lives. If his breif life could have changed just one person, it was all worth it. I know Clayton taught us, that life is a gift, and no matter what you do, do it the best you can with what you have, and love will see you through. Love was all we had through those days, sure we prayed for Clayton's health, and we prayed just for God to help us. But really Love was there in the end. We Loved Clayton with everything we had, and letting him go to heaven was what Love was for us. From the moment you become parents, you want the the best for your kids, the very best! You want them to be happy & you want them to be Loved. We were able to give that to Clayton and were thrilled about that. Sure it still hurts immensely, that he's not hear with us, but he's happy, Loved & in a wonderful place.

After Clayton passed it was relief, the anxiety of waiting for Clayton to go to heaven was over. But he was gone. Gone FOREVER.  I knew my Son was in a wonderful place, but I'd never get to do all the things a first time mommy gets to do. We would not be taking the first car ride home from the hospital, no stroller rides while walking Tacoma, no up all nights, no 1 month pictures, no rolling over, no firsts. We didn't get that. Yeah it sucks, I'll be honest. I've never been the jealous type, ever. But I am now. I am jealous of the women who get their babies, and they are healthy, I'm jealous of "the dream". I know I'll get over it, but for now, I'm just sad that us & Clayton didn't get "the dream"

At Clayton's service we did a balloon release, we knew this was something we wanted to do. We went with the "once a hawkeye, always a hawkeye " theme and did black & gold balloons, 29 of them, for his birthday. Marcus let Clayton's go to heaven first, followed by everyone who loved him. It wasn't really planned this way, its just how it worked out. I know Clayton was there with us that day, just loving us. A lot of things were very special that day, looking back, I'm so happy about that day. Yes it was the day we pledged our Love for him, but it wasn't good bye, it was "see you later my son"   We had chosen to cremate Clayton, because we wanted him with us. plus we weren't sure if we'd live in CR forever, and didn't want to leave him. One day we'll bary him with us, or spread his ashes, but until then, he'll be with his mommy & daddy.

When we were at the University, Doc Jen told us about these beautiful memory glass sculptures that can be made from ashes. When we were planning Clayton's service, we saw the beauty she was talking about. We thought it was truely amazing, we would have a glass memory glass forever, made of our son. Many people who come to our house will not ever know it's Clayton, but he'll be there, "lighting" the way.  

So as I sit here and remember Clayton & all the Love he brought us & so many others,  I ask you to Love someone just a little more today, cause at the end, all we have is LOVE.

Clayton Michael Henning- the story behind his wonderful, but breif life

So I've been thinking I should start this blog for a while now, I just remember how comforting for us it was to read from the carepage comments, so I thought this would be a nice extension of the carepage for us, and for all of you who wish to read about our story.

On Sunday, may 29th, 2011 at 7 am, my water broke. I was 37 weeks and 1 day. But I was in denial, I thought I was  just having loss of my bladder (which i had been experiencing at the end of my pregnancy! :)) but after 5 pants changes, I figured we should head i! I was emitted at noon at 5 cm! come 5 pm they started pitocin and by 6 pm I was asking for drugs, not so much because i was in pain, just cause i knew it was around the corner and I wasnt thrilled with the sneaky nurse upping my pitocin!  but the epidural was not going to be the case for me, I had wanted an epidural the entire time I was pregnant, never did I think that my health would not allow it. It turns out my platelets were too low and the risk of bleeding too high for an epidural, but this time it was 7 pm  and I was not feeling so hot, they checked me and baby was right there!! time to push, after 40 minutes, Clayton Michael Henning was born. 8:06pm. 6 Ibs 7 oz.  21" long.

Immediately after his birth, I knew something was wrong. There was an this deadening silence, unforgettable silence in the room. It still brings chills to me just thinking about the panic look on everyone's faces. They quickly resuscitated him and whisked him upstairs to the NICU at st.Luke's. I was able to join him a short while later and there I would learn the multitude of test they were running and the possible prognosis' he was facing. I just remember looking at Marcus and praying, praying God would do what he could and help our little boy. I also remember Marcus and I praying for Clayton's "best case scenario" we'd come to rely on this, Clayton's best case scenario.

By morning St.Lukes was talking transfer, to the University of Iowa, which was terrifying. I am from the area and I know, when you're sent to the University, things aren't good. Clayton was showing signs of severe Hypotonia, he didn't have much for a suck/swallow/gag, he was requiring a ventilation to support his airways. At this time no one really knew what was wrong, but things werent looking good. Doctors weren't saying much, they just knew the U was going to be the best for him. By the am, we were on our way. Marcus & I were discharged from the maternity ward, and we went upstairs to join Clayton before his transfer. Holly was going to be his transport nurse. (a bit of history on Holly, Holly is my good friend from back in grade school, she was part of our wedding and continues to be a really great friend & we both sare the love of Boxers! ) We were so honored that Holly was going to be with him for his first "field trip" It just felt so good that he was going to be in wonderful hands, even though mommy & daddy couldn't be with him.

 Leaving the hospital that day, without the "dream" we had gone in thinking we'd have was the most devastating thing. I will NEVER forget that feeling, I think through all of this, that was the hardest, because here we were leaving without him, leaving without the dream, but more terrifying we were about to enter the unknown, what was Clayton & our future going to hold?
Everything went smoothly with his transport and he was settling in well. We were in Bay 1, which was classified for the sickest babies, It took me a while to come to grips with the fact that Clayton was one of 12 of the sickest babies, but so far he had been showing us some fantastic improvements. The U did multiple testings, everyone was just trying to figure out why Clayton was so sick. They had done a MRI of his brain, which came back normal, normal brain function!! That was such a relief! They were doing multiple chest x-rays, ultrasound of his tummy, Eco-cardiogram of his heart, multiple blood testing, genetic multi-array(this would prove to be the one that gave us diagnosis) on Friday, less than a week in bay 1, Clayton was being moved! He had been successfully taken off the vent, and was a bit more stable so we were going to be moving to bay 2. This was promising news! We began to think that Clayton was going to be ok, he was going to have a long road ahead of him, but he'd prove all of them wrong! For he was our strong boy! heck so far he'd already proven a lot of people wrong!For the next few weeks, day after day Clayton showed improvements and Marcus and I spent LOTS of time with our boy. We were with him from sun up to sun down, going home not cause we wanted to, but because we had to. Marcus said one day, " we are better off going home and getting some sleep and being 100% for Clayton than not and only being 30%." as hard as it was some nights to leave, we knew he was in wonderful hands.  Many of his caregivers loved him like he was there's and what more can you ask for! We once again were moved- to Bay 4, which was a bit more roomy, a couch, TV(this was how Marcus & Clayton bounded over Bonanza), and bathroom. Clayton was getting better, we were just waiting for a diagnosis, and the doctors said since we were spending so much time there with Clayton, they wanted us to have more room!  While in bay 4, We met one of the most courageous and beautiful people I have ever had the privilege to meet, Nurse Alyssa. She was amazing, she knew exactly how were were feeling and knew just how to comfort us. I still am in aw over all the wonderful people we met.

The day the diagnosis came, I will never forget. Marcus and Clayton were enjoying a lazy Friday watching Bonanza, I had even commented on the page that it was going to be a good day, that Fridays were always good days. But was I wrong, Wow what a day it was.  Clayton's Genetic Multi array was back, it showed that he had a mark on his chromosomes, the findings of this and all his symptoms lead them to the diagnosis of X-Linked Myotubular Myopathy. We were speechless. They were telling us, that our boy was not going to "just grow out of it" this was a life altering diagnosis. The prognosis wasn't good either, babies born with X-linked MTM do not typically live past 1 year. They have incredible difficulty with breathing, eating, & swallowing. On top of that he would possibly not walk, or talk. Clayton was sick and for the first time since leaving St. Lukes, I thought we might loose him. We as a family had a lot of decisions to make, it now wasn't what we wanted, it was what was best for Clayton. During this entire time Marcus and I had held onto hope that Clayton would simply "grow out of it" but we always kept in the back of our minds about what his "best case scenario" was. It was now, that we let heaven enter our minds. I remembering asking God, if he thought heaven was Clayton's "best case scenario" but I got no answer, well until Monday that is.

So we had a wonderful weekend, Father's day was wonderful! Not the father's day most dream about, but it was the best we could have! Clayton was doing really well, by this point his oxygen was down to a regular nasal cannula and on 1/4 liter. which i was thrilled about, that meant one more step closer to going home!! The doctors had been talking about some surgical procedures to insert his feeding tube in his belly and do a stomach wrap to prevent his reflux, and do the muscle biopsy, which was going to confirm the diagnosis. These were all supposed to be scheduled for Monday.

 
On Monday, Clayton had a different plan. We received an early morning phone call from our nurse Stephanie, whom we loved! She told us to come in, Clayton was having some breathing difficulties and just wasn't happy. Upon arrival, there were a few nurses in the room, I knew something wasn't good. After a bit, they decided Clayton would need to go back to Bay 2 to get some extra oxygen support and find out why he was so upset and why his stats all over. I can still remember the walk back to bay 2, it was excruciating, here Clayton & us, had tried so hard to get better and get home and here we were moving backwards. I felt defeated. It was very scary, Clayton had so many doctors working on him, checking his blood gas, chest x-rays. It turns out his lung had collapsed, the little man just didn't have enough strength to keep them open. Through all this, we were now faced with the heaven question again. Both Marcus and I stepped back and looked at what we were facing and what Clayton was telling us. I knew it was what we had to do, but thinking about it was terrifying. This was the day we also met another truly amazing person, Doctor Jen.  (she is now my doctor, you will hear much more about her in other blogs!) She was there to help Clayton, but really she was there helping us, even though she didn't have to. I never realized it until leaving the hospital after Clayton's death, but Clayton allowed us meet some really amazing people. I thank God every day for those amazing people, they have touched our lives forever. 

So after making the decision that Clayton was going to lead the way, time was now all up to Clayton & God. We were going to support him and pray for him to get better! Tuesday we called all the family in and just had a "family" day! It was wonderful, we had a baptism for Clayton and just let everyone hold and love on him. So he was quit the happy camper! who wouldn't be?! Tuesday night we did pictures, which I am so grateful for, we were able to get some fantastic professional pictures of us n Clayton, even without tubes! Wednesday we did Crafts! Clayton made hand molds, a foot mold and did some hand embossing with our hands, moments I'll cherish forever.

Thursday night we had some wonderful friends come visit us and Clayton, it was so great to have them see him, they too were like family, and we wanted them to have a wonderful memory of Clayton too. Clatyon was having a tough day that day, and through the evening. I remember after walking our friends out to the car,  I said to Marcus" I'm at peace with this" I knew what was waiting in the wings. Clayton was telling us, "mommy n daddy, I'm tired, I can't be strong anymore." It still brings tears to my eyes, but I knew our son was leading the way. We spent the night at the hospital in Clayton's room that night, knowing Heaven was soon to be. Alyssa was there by our side, comforting us and most important getting Clayton comfortable. When I think back to the amount of courage in that room that night, it brings chills. Here we were Clayton's mommy & daddy telling him it was OK to go to Heaven, not for our own reasons but for his. As scared as we were, I knew life in heaven would be so much better for him.

At 8 am Friday,  we took off all the tubes, removed all the monitors. It was just mommy, daddy & Clayton. It was beautiful and peaceful, exactly how we wanted. I tell people, its not something you look forward to, watching your child die, but if I could have planned anything for Clayton, this was exactly how I would have planned it. Simply beautiful.

So exactly 1 week from the diagnosis, on June 24th, 2011 @11 am Clayton Michael Henning flew away with the angels to heaven.  I'll never forget how peaceful and LOVED he looked, when Bridgett (another nurse favorite!) brought in an Iowa Hawkeye Blankie to wrap him in,  she said, "once a hawkeye, always a hawkeye." this is a saying I will NEVER forget, it's kinda Clayton's "theme song"

Clayton with his favorite- seahorse

Clayton's balloon went onto heaven first- followed by everyone who loves him