opening my eyes to life

As I think about how much time has passed since Clayton, it's hard to believe he would be 15 months old.  I'd like to say he'd be running all over the house, getting into things, but he just wouldn't have. It's hard to think about really. My son wasn't like normal children. His disease would not have allowed him to run around making my house a mess. It also wouldnt have allowed him to crawl, drink from a bottle, breath on his own, say momma or dadda.....It's scary and sad to think about what our lives would have been like with Clayton as a 15 month old. Most people would have no idea, but as Mytublar Myopathy parents (MTM) I am quite aware of what we would have be up against. And thinking about that sure puts life back in perspective. I am sad for Clayton that he got the fate he did, but I know that life with MTM is hard. For the child and for the family. It would have been filled with lots of terrifying moments and hard days.  I know there would have been some really great days, but there would have been many many hard days. I know in my heart we did the right thing with letting Clayton choose heaven, but some days it's tougher than others. We knew we had to let him choose his life path, but we desperately wished his life could have been given to him with health, but it hadn't. Heaven was the life God intended for him. But that doesn't stop me from wishing it hadn't been and thinking about what life would have been like. Life is unfair, it sucks that he had to die, but to dwell in that, would be unfair to Clayton, and to Kendall for that matter. Like Marcus always says, "Clayton didn't want this to defeat us"  & with that saying, I look back at the last 15 months and am in aww of all the wonderful things that have happened and know that because we thought of our son with a smile on our face and courage in our hearts, we are where we are today. And to think of what the future can bring.

I miss you & love you so very much Clayton, thank you for opening my eyes to life & blessing us.

I have to be happy, but I dont have to stop missing my son

I have been avoiding blogging lately & I need to get back to it. I have always blogged when I needed some relief, relief from my grief without bothering others with my story.  I have been doing pretty well so I have avoided the blog, however I knew days like this would come. Where I just can't seem to find peace with Clayton's death. Where my life & it's events just pile up and get overwhelming With life's daily pieces, I always go back to loosing Clayto. It's just the little piece I'm missing, but it's the little piece that puts me in check & reminds me to be grateful.

But it doesn't take away that I just MISS CLAYTON. I am angry this happen, I am sad Kendall doesn't have a big brother that is here on earth. I am upset I didn't get the fairy tale ending with him; the one so many people get but don't realize how blessed they are.  It just hurts, and it sucks!! I still find myself being uncomfortable with pregnant ladies who get that worry free pregnancy, or hearing people talk about wanting a boy or girl, or when someone is yelling at their kids or bitching about them. I want to scream out, I LOST MY SON & HE'S NEVER COMING BACK. but I can't. I have to keep it together. I have to go on, I have to be happy. But I dont have to stop missing my son. I think I've learned how to cope quite well, however there are days when I want to go back, back to the hospital and just be with Clayton. Hold him again, and just be.

Marcus & I were talking the other night and I confessed I was lately having a hard time, we have slowly stopped talking about Clayton, and that was hurting me. We have been so absorbed in Kendall and the daily life of taking care of a newborn, that I feel like we've forgotten to remember Clayton. I think about him all the time and thank him everyday for his little sister. Along with Marcus & I not talking much about him, I feel like other's dont either. & that's hard.I dont want to forget him & the love he was about & that has me struggling.
Tomorrow is a big day for us, Kendall is to start daycare. She is going to a wonderful 2nd mommy, & I know she is in the best hands besides mine, but it's hard. Hard not only because she wont be with me 24/7, but hard because this is yet another "milestone" that we didnt get with Clayton & that hurts. Everything she gets to do, I'm just sad because he didn't get to. I know tomorrow will be fine! I just have to remember Clayton will be there beside mommy & daddy as we drop Kendall off.

you can't take that away from me

Today, as I drove down the same streets I have for 14 months now on my way to the University of Iowa hospitals and clinics. I was struck-en with some unforeseen grief. I was remembering every morning Marcus & I made the journey to iowa city to be with Clayton, and now here I was 14 months later, driving Kendall to her 2 month doctor appointment. I was in shock, I have done such a good job of handling my grief and for this moment I couldn't. I missed Clayton, and part of me was angry we weren't going to the doctor for him. Yes I am so thankful I have Kendall, but for that moment I just wanted Clayton back!  Lately I have been seeing a lot of babies, pregnant ladies and hearing people talk about if they are having a boy or a girl, someone saw kendall and said to me, "oh boys,ahhh, I'd love to have a girl" all I said was, " yeah she's great, but boys are great too." I walked away thinking, what i wouldn't give to have my boy back! I just wanted to tell her, be grateful for what you have, not all of us are that fortunate. I love Kendall to pieces, with everything I have and am, but I just want Clayton back. I just miss him.  I find enormous comfort in the fact that miss Kendall looks so much like him. It's just that little reminder of him that allows me to be ok. When I want to remember his sweet look, she gives me it. Both Kendall & Clayton love/d bath time! So bathtime is enjoyable for all of us! I will never get over loosing Clayton, but I have learned how to deal with it, to go on with life, with a smile on my face and his memory in my heart. He will always be our son, and no one can take that away from us.

We love & miss you Clayton. May you have a wonderful day in heaven with Jaxson & Ben and everyone else we know. We love you.

praying for peaceful days

This week has been tough, I have been missing Clayton all the while I am struggling with daycare and the idea of sending miss Kendall away to someone. Someone who doesnt know how much I love her and the journey we've been on to get her. I don't want to bring attention to ourselves, but I am having a hard time. I know that every other parent loves their child just as much as we do, but for me it's just very tough to let her go. Especially after what we have been through. I realize that I will never find someone - who isn't me, to watch her, I just hope i can find someone who understands where we have been and will love her like we do. I am struggling with that idea that I had to let Clayton go, and this almost feels like that.  I really didn't think i would feel this way about daycare, but it's snuck up on me this week. The reality that i have to go back to work and back to some sort of normal.
I am still grieving the loss of Clayton and I think that's why this is so hard. I have a lot going on, and im just trying to find a balance. I know in my heart things will all work out for the best, but until then I will just pray for some peaceful days.
xoxo

He is the reason for the beautiful life

I have been living a lot in my memories of Clayton lately. I miss him more & more, the pain doesn't ever go away. Especially since miss Kendall has arrived. If anything it's worse, because I am aware of all that we have missed with Clayton. A lot of memories have come back as I look at his little sister Kendall, I am in awww over how much they look alike! I often wonder if he would have acted like her, the funny faces and expressions with the little bit of sassiness at times, or when she's super smiley and happy to see you come morning,   As I look at Kendall, I am reminded of her big brother so much. When I'm up at night nursing her, I think about him and how I never got to experience so much with him. It something just really hard to take. I lost our future with him. I know that it was in God's plan, but WOW is it still hard to swallow. It's hard, hard to be so very happy that you have a healthy beautiful daughter, but on the other hand, you lost your infant son, just 1 short year ago. . There are a lot of mixed emotions and feelings. & trying to find a balance is what im trying to put a handle on. I love Kendall so much and couldn't imagine our lives without her, so I am thankful for that & I am thankful for Clayton who allowed us to be his parents, showing us the meaning of life & true love. For he is the reason for the beautiful life we have today. That is something that can never be taken away.Kendall is such a beautiful gift, but I know it will never replace Clayton, or even come close. It will hopefully help mend my heart, but it will never fix it.

I miss you little buddy- XOXO 

1 year ago

Today, 1 year ago, we said our "see you laters" to Clayton. I don't like to think of it as us saying our "goodbyes" because we told him, we'd be with him always and "see him later" in heaven.  We had prepared to let him go onto heaven, where we knew his life would be beautiful.  It was the hardest, yet easiest decision of our lives. Hard to let the love of your life go, but easy because it was the wonderful life Clayton deserved.  As parents you dream of giving your child everything they need & providing a wonderful life for them, with Clayton we were giving that to him earlier, the gift of a wonderful life in heaven, free from pain and limitations.
As this year has passed, I can't believe how far we have come, in our grieving, in our love & in the blessings we've been given. Today, I am forced right back to the day 1 year ago & I can't believe we have survived. I remember his sweet face & smell and how I kissed his cheeks, just like it was yesterday.  I remember Marcus & I telling him, it was ok to go, to go onto heaven. That still shakes me to my core when i think about it, but I have a smile on my face today because I know we did the right thing for him.
We love you Clayton Michael Henning, you wil forever be our little boy & we can't wait until we can see you again. Until then, may you have a wonderful life in heaven.

XOXO

Kendall is 1 month old!

Today Kendall is 1 month old! I am more in love with her now than the moment I saw her sweet face. It's beyond words how lucky we are and how truly blessed we are to be her parents. 

I have been dreading the 1 month birthday of Kendall, for the reason of it's the first physical milestone she gets, that Clayton didn't. I thought about it on Wednesday when Kendall was 26 days old, the same Clayton was when we flew away to heaven. It's a hard thing to swallow. Here we are so happy and celebrating miss Kendall, all the while still grieving for Clayton and the milestones he DIDN'T get. It's hard. I think of him everyday. I miss him more and more. Especially when I look at miss Kendall and know the reason for her. She is here because of the loss of her brother. Thats something!!! . I find myself getting lost in my days, busy with being a mommy. But I haven't forgotten Clayton or to be thankful, thankful for the life I have been given and the blessings. I miss Clayton so terribly much and I know that I will continue to miss milestones of his, but I know he is right there with us, celebrating Kendall's along the way.

So happy 1 month miss Kendall & thank you Clayton for allowing it.

 Kendall's newborn pictures

XOXO

May you forever rest in peace

 Today I have done a lot of "thinking" about the past year and the losses & gifts we were given. With almost a year since Clayton flew with the angels onto heaven, we have lost another member of our family. 
Some of you may not know, but Marcus' uncle Steve lost his courageous battle with esophageal cancer on June 7th 2012. Steve was 40 years old, married and the father to 5 children. Losing Steve, almost 1 year after Clayton, it's brought back a lot of emotions & memories. While I said that we would not be "celebrating" Clayton's anniversary of his passing, I do still have it on my mind. Steve's Funeral was the first for us after Clayton's. It was again, bittersweet. As I carried my sweet baby girl into the church among the family per-session, I was reminded how it felt to walk in empty armed at Clayton's. As the pastor read aloud Steve's obit, the last line was about the people whom passed on before Steve. Clayton Michael Henning, was the last of those read. I know that Clayton was waiting in heaven for Steve's arrival, but it just was hard to hear, out loud, what we went through just 1 year ago. As I watched Marcus, as a pallbearer, so proudly carry his uncle to his final resting place, I couldn't help but weep for him. He was so strong. His heart had to be hurting and thinking of Clayton too. 

We know that both Clayton & Steve are in a wonderful place & finally free from pain. They are finally getting the chance to meet each other and oh what a joyous sight that must be.

May you forever rest in peace Steve & may you enjoy all your days in heaven until we can meet again.

Happy 1st Birthday Clayton!

Boy oh Boy, where did the year go? Today is Clayton's 1st Birthday! We have survived an entire year. Today is one of those days I have been anticipating for a long time, how would i feel, how would it go, would miss henning be here or not. So many unknowns I couldn't control. Well - guess what, it's all worked out how it should. I had secretly thought it would, but had to protect my heart in case it didn't.  With that said, it hasn't been an easy year. It's been tough, missing so much, yet gaining a lot at the very same moment. To sum it up, it's been a BITTERSWEET year. We missed out on the typical baby milestone and were left with just grieving milestones. Making it through each day was the milestones we experienced.

I have thought a lot about what we were going to do for his birthday. After much thought and the early arrival of his little sister. We decided to just have friends and family come to our house and have a get together/celebration. It was perfect, no big ordeal, just love for a special boy. It was such a heartwarming day, to see new life in his little sister and to know the love behind the beautiful boy that made it all possible. It's so very comforting and humbling to see the continued love and support.

I also have been thinking of all the things I have been wanting to say to Clayton and so I thought it would be fitting for his first birthday.

 

Dear Clayton,

  Oh how we miss you & your sweet little face. I still see you sweet face in my hands as i kiss you, like it was yesterday. I am so very thankful for you & the life you lived. You were the strongest and most inspiring little man I have ever met or ever will. You taught me more about myself & who I was meant to be in those 26 days than I had in my 29 years. You have made me the mother I am today, because of the Love you brought to us. You brought so much love to everyone who met you or even heard about you. You were one LOVED boy! You showed me the meaning of unconditional love and trust. You showed me the way to letting go and letting faith in, because of you, I have a walked through life a little lighter, realizing the gifts.
 I hope you are having a wonderful birthday party in heaven, surrounded by all your little friends and everyone who's gone before you. Oh what a party it must be!  Know that daddy, mommy & little sister are right there with you! We miss you & love you so very much and we can't wait to hold you again. Until then, enjoy every little moment in heaven.
Happy 1st birthday Clayton!
Love- MOMMY, DADDY & LITTLE SISTER

MY FIRST BIRTHDAY IN HEAVEN

It's my first birthday in heaven,
what a joy to partake.
My presents are flowers and rainbows
and angel food cake.

My crib is decorated with roses
and glitter.
And the stars that shine upon me
make everything shimmer.

The other angels are dancing and
singing me songs.
Soon Jesus will be joining me,
It won't be long.

We'll all gather and pray
for my loved ones on earth,
Who love me so much,
from the day of my birth.

You see, Birthdays in Heaven
are full of happiness and cheer.
We celebrate with our loved ones,
who proceeded us here.

Yes, Birthdays in Heaven
are wonderful and gay.
One day we will celebrate together,
for that moment, Mommy and Daddy, I pray.

she's here!

Well just a few short hours after I posted last friday. Little Miss Henning entered the world!
Friday, May 18th at 11:54 pm, Kendall Marie Henning was born. 6 Ibs 5 oz, 18" long. Safe & sound! And really QUICKLY!
She is so perfect and beautiful! I can't even start to put into words how much I love her. I can't quit staring at her and thinking, wow, she's really here & she's ours!

Kendall's birth story- born at 38 weeks & 4 days.
So after having a nice relaxing evening outside by the firepit with good friends, we cooked a late super and when i sat down to eat, I just felt weird. I had my first contraction at 10:00pm, realized it was a different feeling than my previous 2 weeks of contractions. Marcus jumped in the shower, I continued to feel not so great and realized this was it and we needed to head to Iowa City. We headed to the University of Iowa Hospitals and I paged Dr. Jen, contractions were 10 minutes apart,  Marcus drove about 100 mph to get us there, I kept saying, were fine, dont worry, when we got off the interstate, i joked and said, there is NO way were having a baby today still! we arrived at the University of Iowa Hospital parking ramp, parking ticket said 11:02pm, I was still feeling ok, I walked up to labor & delivery, checked in at 11:07, my first nurse checked me at  around 11:20- I was dilated to 7 & contractions were 3 minutes apart, Dr.Jen joined us around 11:30. Contractions were intense and I had asked for my epidural, being my platelets had been low at my last apt, they needed to test them again, waiting for the lab to come back, I was starting to realize I may not get an epidural again this time! At 11:47 I was again checked, 9 1/2" centimeters dilated, I was ready to push but waiting for the 1/2 centimeter. Dr. Jen informed me, no time for epidural. I thought to myself, great! not what i wanted, but I've done this before with no drugs, I can do it again, plus I knew I had Clayton by my side, helping me along. In all the pain and chaos with the FAST labor, I continued to talk to Clayton and ask him to protect us. After 4 minutes of pushing, Kendall Marie Henning entered the world at 11:54! safe, sound & perfect. I can't tell you how blessed I felt at that moment. A calm just came over the entire room. We were blessed!
So from start of contractions to delivery, 1 hour 54 minutes. From walking into the hospital to delivery- 47 minutes!
I always knew Clayton & her had a plan of when she would come, but I sure didnt think it would be this fast! For some reason, the 18th was the day she wanted to be born and she wasn't gonna miss it!

We didn't sleep more than a 1/2 hour saturday early am, I couldn't, I had just had my "rainbow baby girl" and everything was perfect with her, she was safe & sound, My body & mind could finally release and realize, we've gotten it! We stayed all saturday and were scheduled to go home sunday, GOING HOME!! Those were words I had dreamed about while in the NICU with Clayton, and they were true this time. Sunday morning we were headed out & going HOME!! Walking down the hallway, the same exact hallway we walked after the loss of Clayton, with Clayton we left with broken hearts and empty arms, just less than one year later, we were walking down the same hallway, with our hearts mending and arms full, of hope! It was the first time I was able to digest the life we were living. We were taking our sweet girl home & that was possible because of the loss of Clayton. BITTERSWEET.

As I look at Kendall and thank God & Clayton for her, I realize this journey we have been on. It's been the most incredibly difficult thing of my life, but I wouldn't change it. Sure I wish I could have made Clayton not sick, but that wasn't in God's plan for him. We know without Clayton & the gifts he's given us, we wouldn't have miss Kendall safe in our arms.  For that, I will forever be grateful & know how blessed we are. 

why NOT us?

what a last couple of weeks this has been. My pregnancy has gone great & the last few weeks, progress has been made. Last week (38 week) I was dilated to 5, 75% effaced & baby girl is -1 station. So you'd think she would have decided to enter the world by now!!
With the pending birth of little miss henning (any day now) I am struggling. I am so anxious to meet her, I just want her here, safe & sound.I know you hear me say that all the time, but when you've been where we have been, you realize how important that is.  Everyday I feel her move is amazing, but in the back of my head i fear something still might go wrong. I know that she does not carry the same disease Clayton did, but it's hard to block out the "what if's" I've been there before, I've thought i was going to have a healthy baby, but the rug was pulled out from under us. So I just want her here. 

I'm also dealing with the fast approaching birth date of Clayton.  Everything is just so uncerten and being the "planner" that i am, I'm not handling it well!
I feel like i'm wearing a mask. Everyday it's a different person, one who is still so devastated with the loss of Clayton & the other who is ecstatic to meet miss henning. I feel like i can't do both. It's just 2 totally seperate emotions, and they both take so much out of me. I hope I can find balance.  Marcus & I have been doing lots of talking & healing lately. He said something I never really thought about, and now choose to go by. " the past made us who we are, that will never change, but all we have is the future to live for, so we better make the future worth it, cause we can't go back and change the past." He was talking about being torn about grieving for Clatyon & celebrating miss Henning. Clayton will forever be our first born son, but we need to LIVE for miss henning.

So in 10 days - little miss henning is due to enter the world. I know that her brother will be right there with us. I am thankful for all the gifts he has given us, but most of all, I am thankful for him, thankful God choose us as his parents. Like we said while back in the NICU less than a year ago, some say why us? we say WHY NOT US?

Love you Clayton Michael Henning- XOXO

you never, EVER get over your child

As the weeks pass by & the days until Clayton's 1st birthday approach. My anxiety increases! I am trying my best to focus on today & the moment, but it's hard. I want so badly to be done being pregnant, not because im uncomfortable (ok part of it is!) but mainly because I want "little miss henning" here! Safe & sound! And the closer it gets the more i want her here. My main reason is I want Clayton & her to have their own birthdays &  I want to know that we will get the healthy baby we've been praying for. It's hard to push the thoughts away when we've been there before. I pray every night for her health & safety, but until she is here, I can't be so sure. So I will continue to try to focus on today and happiness it's brought.

I have had a lot of mixed emotions lately. Between Clayton's pending 1st birthday, the 37 week pregnacy mark- when Clayton was born,(today I'm 37 weeks with miss henning)  & the birth of our "Rainbow baby girl". It all is very bittersweet and unexplainable. I have a lot on my plate right now and Im trying really hard to hold it all together. It's hard. I feel like there are a lot of people who need an explanation or an answer & Im afraid I can't do that. There are so many un-knowns in our life right now, I'm just going to take it day by day and keep on keeping on!

I've been thinking a lot about the past year and how i could put it into words. Well I dont have to, A good friend sent me a poem she found & that sums it all up. It's perfect, it says everything I've ever once thought or said. Without me explaining anything to anyone, it's simply----- HOW I FEEL.


When you lose a baby...
You don’t know what to expect.
People surround you. For a couple of weeks. Making sure you are not going to kill yourself, refuse to get out of bed, or start rocking a baby doll like the crazy lady they heard about from a friend.
You get lots of sympathy cards, clearly written and designed to be sent to console a daughter losing her father. Not the other way around.
You get free baby formula in the mail. For months and months and months.
And free baby magazines. And free baby coupons.
You secretly envy every pregnant woman. But not without a tinge of guilt, because you know all too well that she might be one in four- expecting her rainbow child.
It seems like the whole world is expecting a baby.
You have baby stuff around your home. Because you never imagined you wouldn’t need it.
You feel jarred. In the grocery store. At a birthday party. At the dinner table. At Christmas. Driving.
The baby you never knew, but lost changes every part of your life. Every. single. part.
Forever.
You see baby clothes and it brings tears to your eyes.
You get sick and tired of crying. You never knew it was possible to cry this much.
You find yourself angry at God. Angry at yourself. Just angry.
You sware you can feel them kick but they’re gone. They call them phantom kicks. I call them painful, all kinds of painful. But sweet too.
You know, or you have a strong feeling of knowing what your child would have looked like, and been like. You see a child in the store, or on the street. Their hair color, dimples, smile, their personality and suddenly you are reminded of your child. You miss your child even more, if that’s even possible.
Your Babies R’ Us Registry is still active. There is no delete button on their site. The babies r’ us people don’t make a dime on people like us. Why bother right? You have to call them, plead with them to remove your freaking’ registry, because there will be no baby shower. There is an awkward silence. There is sadness. There will be no baby.
You get hospital bills about 3-4 months after you buried your child. You have to pay for the baby you delivered but didn’t bring home.
You find that moment of happiness in life for the first time, but the guilt swallows it up almost immediately.
You remember the size of the casket. The size of the plot. The face of the funeral director. The expression of those that attended the funeral. The feeling of raw pain, like your chest has literally been ripped open.
Somehow you convince yourself that you deserve happiness. Because you really do. But in the happiest, purest moment, there is still that hole that only they were meant to fill.
People compare your pain to their own pain. The loss of their grandmother, husband, their failed marriage, rebellious teenagers. Somehow this comparing leaves you stranded. If they can compare their pain of a situation to the loss of your BABY, they will likely never get it. Babies are not supposed to die. End of story.
You lost a dream. And it almost feels like you imagined their entire existence up. Their name becomes a distant memory on the lips of others.
There is awkwardness when you talk about your child in a crowd. No one knows whether to cry, walk away or pretend you never brought him or her up.
You lose friends. You find new ones.
You can’t believe that women have actually survived this and you never knew about it. Not really, anyway.
You would do anything for another minute with your child.
You cry when others bring up your child, not so much because it hurts but more so because it such a precious and rare gift.
You long for the rewind button, even after many many instances of acceptance.
You want to know what went wrong, and why…
You find a new appreciation for moments in life that make you laugh… you laugh harder and love stronger.
You know that you can die bitter, or die thankful. There is no in between.
You never ever, EVER get over your child. The one you hoped for, prayed for, carried and loved for the weeks and months they were with you.
You learn to live with the pain.
You are better for having known them at all.

So in closing thoughts, today I am 37 weeks. The same point in my pregnancy with Clayton that he was born. It's somewhat weird & so insecure. I don't know at all what to expect with "little miss henning" will she come soon, or will I go over? It's the unknown that's the hardest. But I have to keep remembering. God & Clayton have a plan!

trying to "just let it be"

We are coming up on what would have been Clayton's 11 month birthday.I can't help but to think what I would have been doing,  I'd be planning and prepping for his 1st birthday! It makes me sad, yet makes me smile at the same time. I've survived almost a year without him, when at the beginning I didn't think I'd survive the day. I actually have been thinking a lot about his birthday celebration, that I want to have this year, but I'm finding it hard, because as much as I wish I could, I can't plan how things are going to go with the birth of his little sister. I have no idea when she is going to make her appearance & with her due date & Clayton's birthday only 1 day apart. It's hard to make a plan. I know in my heart, Clayton will choose the perfect time for her birthday, but it's hard to let go & just "let it be". So until then I'm going to focus on today & the gift we've been given & when the time comes, Celebrate both kids, as we intend to do. Clayton's 1st birthday celebration may be after his real birthday (this year) but we DO plan to celebrate, like we will every year. We've chosen to focus on the positive. Some people are sad and focus on the day they lost their child. I am not going to choose that road. I am going to focus on the day he was born, the day my life changed forever. 

 I was able to share our story & Clayton's story this last weekend & it felt so good. I sometimes forget where we have been & how far we have come. I know we still have a long way to go & life is never definite, however it made me proud to share our story & talk about Clayton. I realize it's not always easy for others to hear about the devastation we survived, but I hope it makes them appreciate life a bit more & maybe hug their kids a little tighter. 

Life for us has been pretty darn busy lately. For some reason I think we like it that way! :) after finishing up a remodel of the entry way/dining room/kitchen, we are officially 100% done with it, with a few weeks to spare. But with all this "stuff" to do, I forget about what is around the corner & it helps pass the time. Allowing me to focus my energy on things other than being stressed. I have felt so much better with my grief & the up and coming birth of our daughter. I am still very anxious to meet her & sure that it will be way more emotional than i am prepared for. I pray things go smoothly and Clayton helps us through it.
So as I count down the weeks & get everything ready for little miss henning's arrival, I think about the Clayton & the blessings he has given us.

Happy (almost) 11 month birthday little man!

Clayton will choose

Clayton would be a little over 10 months old, I'm a little bit in shock over how fast the last year has gone. Lately I have been thinking a lot about him & the wonderful 26 days we had with him. As the due date of his little sister gets closer and closer, I think about how things will go this time. It's hard to think about sometimes, the nightmare we survived. I pray things go smoothly this time, I have faith they will & I know that Clayton will be there by our side.

 Over the last 10 months I really haven't thought a lot about specific moments we had, but lately i have. I am so very thankful for the times we did have, yet I'm sad for the moments we didnt get. I'm sad that he never came home and got to see the beautiful room & stuff we had for him, Im sad he never got to meet his puppy. I'm sad he didn't get to grow up. But I have to remember, that just wasnt in God's plan for him. I am happy that he is at peace & free from pain & suffering. I am happy he is in heaven, I am happy he has such wonderful people to take care of him & Im happy he is my son.

During the next month & 1/2, I'm going to let the emotions and feelings come as they may. I can't predict how things will go, although the "planner" that i am, it's hard to let go, but I know Clayton & God will make sure things are taken care of. Remembering  back when Clayton was sick and I was trying to predict how he'd pass & when it would be, I remember someone saying, "Clayton will do what you want him to, he will go when he feels he should & he will have the people who love him, around him." He sure did, he passed peacefully in our arms & that was all I had dreamed of. So as I look upon the pending month, I know in my heart Clayton will be there to guide us and make everything ok. He will choose when his little sister is born & he will choose how it will go. I am thankful for that, It's just another gift Clayton has given us & I can't wait to celebrate that.

Love you little man- XOXO

I've been here before

I find myself lately asking myself, Have I been here before? have I experienced this before? With the beautiful weather we're having, I am reminded of my life a year ago. I was doing as I'm doing now, per-pairing for the arrival of our child. But oh- is it so much different this time.

So many times lately have I had that "day sha voo" feeling.  It's just a feeling that comes flooding back, that takes me right back to a year ago.

Like when I was In the shower in the morning, feeling like I'm getting ready to go to the NICU to see Clayton, or washing purple grapes to pack for my lunch, like I did while we were in the NICU. The spell & the feeling the downstairs has. I went down their to put something away, and it stopped me in my tracks. Just this time last year we were finishing up the final touched on the basement & I couldn't believe how much it felt & spelled the same. I was instantly back pregnant with Clayton, per-pairing for him. I can't believe how much I feel the same. The weather is beautiful & I'm loving it, but it brings back a lot of memories, good & bad.
On top of that, It's just a hard time of year. The first full year without Clayton, the anniversary of his birthday right around my due date with Miss Henning, & the the pending birth of miss Henning.

So I feel it's to be expected, I'm a little frazzled. I am learning to take one day at a time, do what I can & want to & just enjoy life.

can i lean on you?

Today was a day, where I woke up thinking it was just an ordinary day. But I was caught off guard by UN-expected emotion. I'm just having a hard time. I know it's normal but I just am struggling with so many mixed emotions. Excited with my growing belly & feeling little miss Henning move around, which means it's getting closer to meeting her. Yet at the same time, still devastated with the loss of Clayton.  It's just a slap in the face that I lost Clayton.
I miss him so terribly much. I remember the feeling I had very soon after Clayton passed, that I couldn't wait to have a baby in my arms again. My arms just hurt, along with my heart. It was Marcus & I that decided, we would like to be parents again, sooner rather than later. But I was not at all aware of how hard it would be &  for what that would be emotionally. I never ever thought it would be this hard. I know we can make it & we will be ok, because I have already survived the worst thing in the world. Yet I still pray for strength and understanding from others, daily. It's very hard. I want little miss Henning here so badly, but I also want Clayton back. I know that can't be. It's just hard to look to the future, when i'm still grieving the past. I'm just reminded of what I missed with him as I plan for her future. I know that Clayton will always be a part of our future, because I know in my heart, he's a reason for his sister.
I am realizing I need to lean on my friends and family, they are the ones who've gotten me through so far & I hoping they can help get me over this bump. I just hope they understand. This isn't easy, it's not written in a book on how to handle. It's day to day. I pray for strength & understanding.

Happy 9 month birthday little "rookie of the year"

Happy 9 month birthday Clayton!!! Happy Birthday! I feel like this is such a milestone to celebrate! As time passes, Clayton's birth months have different feelings behind them. This month I reflect on the fact that he'd be 9 months, holy crap! I have survived life without him for 8 months! I also think about this months birthday in a different way these days,  I am that much closer to meeting Clayton's little sister.  It's such an odd feeling, counting up the months that i've been without Clayton, yet counting down until I get to meet little miss henning. Talk about mixed emotions! I think i've done pretty well at maintaining my sanity, yet some days I just pray for the month of May to hurry up and get here. One minute I am still so devastated with Clayton being gone & the next I'm folding little pink clothes. It's just so very hard to explain. I can not wait until the day she is here, safe & sound. So I can begin telling her all about her brother and his wonderful life. I know in my heart that the reason Marcus & I are going to be parents again, with her due date so close to Clayton's birthday, is because of Clayton. I know he wanted this life for us. So today, which would have been his 9 month birthday. I remember him & thank him for bringing me comfort in my days of weakness. For if it weren't for him, I wouldn't be the person i am today.

This last weekend was the local MDA muscle walk. We had put together team Clayton, in memory of Clayton. The walk went wonderfully! It was a wonderful way to help others affected by muscle disorders all the while walking in the loving memory of Clayton. Team Clayton raised just under $4,000.00 for the MDA and was honored with "rookie of the year" most money raised by a new team!!! It was such a huge honor! I was caught off guard by the emotion I would feel about it, but knew it was all for the LOVE of my son, Clayton! We hope to continue to walk every year for team Clatyon, & for his memory. I thank everyone who donated to the MDA and also all who walked and supported us. We continue to be humbled by everyone's love & support.

My heart is hurting

So I recently heard about another mother whom had to make the same excruciating decision to let her little boy Benjamin go to heaven from Myotubular Myopathy. It breaks my heart all over again. My heart just hurts for her. It is the worst thing in the world, to know that you are doing the best thing for your sick boy, but knowing you will never see him on earth again. All week i've just been heartbroken all over again. it takes me back to the moments we had with Clayton and when we made the decision not to increase his care, but rather to keep him comfortable and let him decide. Thinking about this again shakes me to my core. I am amazed how long ago that feels, but then hearing about the loss of sweet Benjamin I go right back to that very moment. I wish I could be there with her, holding her up, telling her, it WILL be ok. Your heart will stop hurting so badely, but I can't. I want her to know it will be ok. You did this for the LOVE of your son and for that you must hurt. but it will get better.
I still have many many moments where im not sure ill be ok, but through it all, I know Clayton is in a wonderful place, pain free, and for that, it's all worth it.
So as my days go on, I hold that mommy, her husband & her sweet Benjamin in my heart and pray for their peace & comfort. And with a smile on my face I'm happy to know Clayton has another wonderful angel to play with.