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.

focus on today's happiness

Clayton would now be a little over 8 months old! I can't believe it! Oh how different our lives would be with an 8 month old crawling around. & if he would have been like his dad, he would have been RUNNING around! It's very hard to think about, the things that wont be- atleast with Clayton. Yes I realize that I'll get these things with "little miss Henning" but I wont with Clayton & thats a hard thing to handle, whatever milestone it is, it's not something you get used to. It just slaps you in the face with reality- your son died. I have hard days, & sad moments, but to be honest every day is hard & all moments without him suck, they  always will.So it's not just a day or a moment, it's all the time.  I always will be sad God wanted this life for Clayton.  I just have found ways to push that nightmare aside & go on with our day to day lives. So when i talk about having a hard time, it's not just a moment, its all the time. It's not something you get used to.

Lately when people ask me how things are, with the pregnancy & just how we are. Im not sure what to say. Im not sure what they want to hear? & I find that whatever answer i give, i still dont think it's really how im feeling. That is something i'm just not sure i could put into words, & even if i did, im not sure anyone would get it. Unless, of course you've been in these shoes. So therefore I've decided to quit trying to explain it & to not get upset when i feel like someone just doesn't get it. It's not working for me. It's making me more stressed. I am traveling down a road, few will ever understand & therefore there is no road-map or directions. I am making it a point for the remainder of this pregnancy, to just go with it. Focus each day on happiness & making the best of today! I have focused this entire pregnancy on the may 28th due date, getting there with little miss henning here safe & sound, but all along forgetting the path im on & to be grateful for that. My anxiety is getting the best of my daily "in the moment" happiness. So my goal is to focus on today's happiness!
Marcus & I still talk every night about life & our journey. He reminded me about focusing on enjoying what we have now. We were given this time to be just the 2 of us, not by choice, but by what God had in our plan, so I am going to focus on that. In 15 weeks or less our life will be changed, so im going to focus on the 2 of us & the time we have.
I am thankful for today's happiness.
XOXO

I miss you, miss you so bad

This last week I've just had some days. Days where i miss Clayton so terribly much. Oh how I wish things could have been different for him & for that matter, for us.  I know grief doesn't have a specific time nor place & I can't control it.

I have been doing a lot of planning and preparation for little miss henning, so I think that is bringing up a lot of emotion & memories.  I can't help but think, I was doing the same thing for Clayton a year ago. Designing his nursery, shopping for him, & making plans with him in it. As much as I am so very excited & blessed to be caring little miss henning, I can't help but hesitate to to make plans for her life. Yes I do, but its hard and part of me feels like im jinxing myself. Most of you will never understand this, most of you probably think, im pregnant again, it's all better & she's healthy so I should have nothing to worry about. BUT I will never be ok, I will always be terrified of what could happen because I am one of the "un-lucky" ones who knows all to well what can go wrong and that anything can happen. I will never be able to relax and just enjoy. I am incredibly grateful but terrified at the same time. Sure I want to think something wont go wrong, but im realistic. I have tried my best to be grateful & know the gift i have been given of caring this incredibly healthy & special  little girl, but I know the reason for her too. Without Clayton, she wouldn't be. She will forever grow up knowing the reason she is here & about her wonderful brother. She is our Rainbow baby.

Rainbow babies: In some circles, babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm.

"Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.

Miss you Clayton Michael- you will forever be our first born & our sweet boy! XOXO

I will make the best of it

I find myself getting lost in time, forgetting that it's not quite been 7 month's since Clayton went to heaven. I just forget it's ok to hurt & have days where it just sucks. I forget to be easy on myself & expect that it's never going to be easy grieving his loss, time will lessen the pain & make it EASIER to handle., but it's never going to be EASY.  I just have to stop & think about what we have been through. To speak it out loud, "we lost our son" Hearing that it shakes me to my core, when i have to really think about it. I wish so much that things just could have been different. Never have I regretted the decisions we made for Clayton's life & the one's he made for his own, but I just wish to terribly, that he could have gotten a different fate. I always think back to when Marcus & I realized we'd loose Clayton, Marcus said, "I never thought i'd loose my first born, before I got to take him home." NEVER did we.

I find myself these days being easily side tracked from my grief, getting caught up in the daily life occurrences again. When I stray too much away from my inner self & my feelings, that's when I get hit. Hit by the emotional train that final has to derail. During Clayton's life & a few months after, I dedicated myself to healing. Reading wonderful helpful book, blogging & just really focusing on the positive of life. Now, however I find myself slipping away from that. I think it's because time has lessened the pain & I feel like it's expected of me to be ok & to "move on" but I know that's not right for me. I am much happier & healthier, healing myself, focusing on the importance, my life, my husband's life, the memory of our son & the new life we've been given. As much as I want to go through everyday not thinking about the life I have now, I am still thankful for it. God gave me this, so I WILL make the best of it!

So as I go through the next few month's & years of my life, I'll remember, I lost my son, it sucks, but I will be ok!
XOXO

MDA walk in Clayton's memory

We have decided to put together a team in Clayton's memory for the upcoming MDA muscle walk! The MDA is a organization who help raise money for research & families affected by nuromuscular disorders. Clayton was affected by Myotubular Myopathy which fell under the MDA. We thought this was a great way to ge together in memory of Clayton and raise money for a wonderful cause.

when: saturday February 25th at 7:30am-10

where: Inside Coralridge Mall- Coralville IA

http://www2.mda.org/goto/teamClayton

is the link that Clayton's team page can be found.

we would love to have whomever wants to be a member & walk or any donations too. If you wish to walk- please go to the page & click JOIN TEAM- this is where you enter your information & become part of Team Clatyon. We ask anyone wishing to walk that day to wear a hawkeye shirt and be part of Team Clayton, "once a hawkeye, always a hawkeye" We also have some bracelets left if anyone wants to use those as fundraisers for walking!

If you are not able to walk & wish to donate in Clayton's memory, a link on his team page allows you to do that- or checks made out to the MDA can be sent to us.

Thank you all for you continued love & support! We are so very thankful!

Love- Marcus & Emily

Happy 7 month Birthday Clayton

Happy 7 month birthday Clayton. Where have the months gone? I know I say this every month, but I can't believe it. We've gone from summer, to making it through Christmas. Which let me tell you, I am go glad is over! Christmas wasn't as hard as i prepared myself for it to be, but little things got me. I think it was a little bit easier because I am caring his little sister, the one he wanted us to have. 

I started going through Clayton's clothes & all the baby stuff that was intended for him. Not an easy task, but one that brings me joy & sadness all at the same time. I laugh at how many clothes that boy had, but know that his sister is going to have even more! Marcus & I have decided to pack away all of Clayton's clothes and not get rid of them, for the hopes that maybe someday, his "little brother" can use them. Oh what a day that would be! 

As I go through his things, I think of the little boy who he was supposed to be & the little boy he is now. He would be 7 months today

I thought today's birthday blog was the perfect time to show you all the prints we got framed & matted with a saying from "his" book & with a memory plaque. We plan to donated these in the next few weeks to the University of Iowa NICU, where we spent all the days of Clayton's wonderful life. I am so happy how they turned out & will miss looking at the every day in my living room, but I know all the families that will love them & know the love behind Clayton Michael Henning's life.

the the first 3 are 18 x 24 & the last 2 are 24x30

 

All of the framed prints have a memorial plate in the lower right corner that looks like this!

we rolled the dice & won

Marcus said it so perfectly, "we rolled the dice & won!" we have gotten the most wonderful Christmas blessing, we got the results from little miss Henning's mirco-array, and she is NOT a carrier & the rest of her chromosomes are perfect!!! We have gotten the 50% healthy baby! our odds were not good, but Marcus had that gut feeling that told him to go this route & with that & Clayton's help, we have a healthy baby girl! she will never have to worry about passing this onto her children & have the difficult journey to be a mother of a healthy child. I can not tell you how relieved this makes us. I feel like NOW we can begin to plan a life for her. I still am so very thankful for Clayton, because without him, none of this would have happend. I know he is going to be a wonderful big brother & watch over his little sister.

it doesn't make it all better

There are many times I still have to pinch myslef & remind me that I am pregnant again. It's been an extremely hard thing to handle. Yes we wanted to badley to be pregnant again and have the miracle so many others got, but I didnt think for minute it would be so bittersweet. Somedays im over the moon that we are having a healthy baby girl, but other days, im just sad, sad for Clayton, and wishing things could have been oh so differnt for him. It's still not fair. & it never will be. Being pregnant again, DOESNT MAKE IT ALL BETTER. I sometimes get angry when people say, oh, yay your pregnant again, Im not angry at them, im angry because it just hurts, its not the same anymore. Its not the same excitement with no worries. I am pregnant again, because i lost my son. So by being pregnant again, it doesnt make the loss of Clayton any easier. It give new hope, hope that we will someday get that healthy baby in our arms. But it doesnt take away that we lost our first born.

With Christmas right around the corner, i have lots of anxiety. I have come to realize, it will NEVER be the same, but I am hoping I can find joy in it. Somedays Im singing along to wonderful christmas songs, enjoying shopping, wrapping presents & holiday baking, but others i realize what is missing. So this year, its a little less festive at our house & in our hearts, but I know that with the love & support of family & friends, well be ok.  Clayton would have wanted that.

day by day

Today I'd doing much better, well this week for that matter.
It's just different being pregnant this time. There are so many more emotions & memories. I am so very thankful for the gift I have been given, to carry a baby girl & hopefully be able to raise her. I think that is what scares me the most, this pregnancy is different because i am aware of what can happen & all I want is to do is raise this child. I want to be a mother, with a child in my arms. I know I'm a mother, but I want to raise a child here on earth. Sometimes I wonder if that's ever possible. It's just difficult because there are not many people, thankfully, that know what it's like to be us. It's hard, it's just so different this time. The "naive" pregnant lady that worries about what color bedding to have in the nursery, she's gone, at least for me. I am aware & at the same time I am grateful.

I miss Clayton even more now. I think I am aware of what could have been. I know that this little girl will not take the place of him, nor will she make the heartache go away, but I hope & pray, she'll bring back the feeling of joy & I am able to raise her, like a mother should.

I know that we did the right thing & Clayton is in a wonderful place, it doesn't make it hurt less, but it makes it ok! I just wish things could have been different for him.
So Im going to keep doing what i've done since he was born, Stay positive, pray for the best case scenario & put one foot in front of the other. It's day by day.
XOXO

Happy 6 month birthday little man

Happy 6 month birthday Clayton Michael Henning!

Where in the heck did 6 months go? Oh how I have missed Clayton. The last week it's really been getting to me, the fact that we're not watching him grown, keeping "everything" out of his mouth, watching him learn to crawl, kissing his sweet face & watching him gaze at the christmas decorations. I am just realizing he's not here, I mean I knew, but it's just been hard lately.  I think so much of it has to do with the wonderful blessing we've been given, expecting his little sister. We are so over the moon excited about it, but part of me just feels guilty & sad for Clayton. I wanted to raise him. I know that he wanted this for us & I am so incredibly grateful for that, It's just hard. It's the first major time since Clayton went to heaven, that i've thought about baby stuff.  Which means "his" baby stuff. Some days im ok & I'm thinking about names and such, but others I am just sad for Clayton. It's not fair.

I know I'll be ok, but for now I just want my moment to miss him & be sad for what were missing out on with him.

Tomorrow I have my 15 week maternity check with Doc. Jen, I'm really looking forward to it! There are just certain people in my life, that always have the right words to say. I am again so very thankful for the wonderful people in our lives, that just know when & what to say. When you loose a child, no one has written a book on how to deal with it, but I feel like a lot of the chapters come from your friends & family who always know the right things to say. So thanks!

I also want to apologise for the lack of thankfulness days- It's not that I'm not thankful, because I am, i've just had some trying times & I have had a tough time blogging. 

So on today, Clayton's 6month birthday, I am thankful for him- for the picture I have of him with his little foe-hawk & his sea horse, because of that picture, I smile!

  Happy 6 month Birthday Clayton- we love you so very much!

pink blessings

November 20th-- I am thankful for little pink blessings.
After many stressful & anxious weeks, we are so excited to announce, Clayton is going to be a big brother! We will be welcoming a little girl at the end of may.  We are so increadiably grateful & blessed. Clayton has been a busy little boy in heaven, helping mommy & daddy with their dreams. Our CVS testing was last tuesday, & results in on thursday & its a GIRL!!! a baby girl free from myotubular myopathy!! I can not tell you how stressful this has been, I prayed so hard for a healthy baby. Through the Love & support of Marcus & Clayton, we have gotten the healthy baby! It is very bittersweet, but I know Clayton was the reason for all of this. He will always be our first born & always the love of our lives, now he'll also be a big brother!

I am thankful for my little guiding light

November 16th- i am thankful for truly getting the real meaning of life. I am so very thankful that the birth & loss of Clayton has taught me what life is all about. It has enabled me to appreciate life & the things it offers. I try my hardest everyday- not to complain,I try to be positive & I try to be kind to others. I may have days when i faulter away from that, but I try again the next moment. I hope that I am a person people appreciate & are also thankful for & with that I am thankful.

November 17th- I am thankful for Clayton, as my gardian angel or i like to say little guiding light.  I know he is with me every moment of the day, guiding me, & giving me little glimmers of hope & love.He is the reason life is wonderful & and heartbreaking all at the same moment. I am thankful for him.

November 18th- I am thankful for the simple things! life's little pleasures! The things that make a person smile & say I am thankful!  

I am thankful for the continued love & support

NOVEMBER 15TH-
I am thankful for the continued Love & support. The perodic check ins, just to see how we're doing & let us know they are thinking of us. There are days when we feel so alone in this,that we're living every day without the family we dreamed, while life goes on for everyone else. & thats alway the exact moment someone knows we need to hear from them. I am so thankful for the kind words & loving prayers. They allow us to know this LOVE will never end. I thank the people who know just the right moment to say, were thinking of you, because that makes getting through another day of the nightmare, bearable. So thank you.

life is rough by im thankful

November 10- I am thankful for Tacoma (my puppy for those of you who dont know) He always knows when i need to cuddle, he loves me unconditionally & he lets me baby him! He's always there to listen.

November 11- I am thankful for my faith. It has allowed me to see the light & to realize this is all happening for a reason. There is a purpose behind clayton's short life.

November 12- i am thankful for companionship. some people just always know the right things to say to calm me and let me know its going to be ok.

13th-i am thankful for days when i do nothing. Mindless tv watching or napping on the couch. Its days like these where i dont have a care in the world, where my mind isnt fixed on our life & its struggles. I am thankful that i can get lost in a mindless reality show.

14th- I am thankful for people reminding me to be grateful. Life is rough, it's not always fair & I am thankful for the people that have struggled and are getting through life, they remind me, I could have it worse & I am grateful for what i have.

Love & Life- Im truly thankful

NOVEMBER 8- I am thankful for my life. I have realized that yes i may have difficult times, however many, many people have it far worse than I do. I am thankful for the life I have been given & the life I am striving to have!

NOVEMBER 9- I am thanful for LOVE. I am thankful that with the loss of Clayton I learned the true meaning of unconditional LOVE. With that I will go through my life with an entirely diffrent view on life. LOVE is all that really matters. XOXO

Thankful for positivity

NOVEMBER 7TH- I am thankful for the positive thinking & attitude both Marcus & I have had throughout this journey. Without it, I think we'd be in a much darker place. With it, I feel like we've been able to enjoy the wonderful memories of Clayton & look to our future with a smile. I don't know where the positivity came from, but I know it's making us better people & preparing us to be better parents, someday. I am thankful for the positive in my life.
XOXO

Thankful november 4-6

November 4th- I am thankful for the people we have met through Clayton. These people are amazing. This is why i am thankful for our loss of Clayton, because without him. I would not know all of them. The one's who were there to not only take care of Clayton, but to take care of us. The one's who still ask us how we're doing, the ones who hurt just as much as we do for his loss. The ones who took wonderful care of Clayton, like they would their children. We are so very thankful for them. The University of Iowa hospitals & all the staff who was such a wonderful part of Clayton & our lives, they are whom im thankful for.

November 5- I am thankful for the future. Without the hope for a wonderful future, I don't know how well we'd be doing. The future has allowed me to look to the positive and know that God has a plan for us, a beautiful plan. I have hope & faith that our future will be the one that we "planned".

 

November 6th- I am thankful for the memories i do have with Clayton. Sure, i dont have a 5month old playing on the floor with his toys, or loving to sit in his swing, or playing with his puppy Tacoma. but i have memories of a beautiful loving boy. I have photos, I have his little clothes, I have his tiny little hand & lock of hair. Most of all I have the the Love he gave us. I have so many memories, ones to which i will cherish forever & never forget, because these are the only memories i get. I am thankful for my memories of Clayton.

Thankfulness in November but lasting forever

So i have been giving it a lot of thought lately, about the month of November with Thanksgiving & the days of thankfulness.  Yes I too have so much to be thankful for. I know theres atleast something im thankful everyday for, maybe somedays more that others!

so I know im a bit behind- but im catching up!

NOVEMBER 1- I am thankful for how well we are healing, or should i say greiving. Im not sure that we will ever heal, the wound will just not be so raw. 5 months have passed since Clayton was born & 4 since he flew away with the angels to heaven. It hasn't been easy, but the pain has eased by looking ahead to our future with a smile & remembering the past with a bigger smile! because without the most devistating loss of our life, Clayton, I would not realize the beauty that is waiting for us! Life is beautiful, you just have to look for it.

NOVEMBER 2- I am thankful for Marcus, I didn't realize how wonderful he was ( ha ha, im not trying to be a cheese ball :), really until we spent 26 solid days together, fighting for the same cause. To save our son & to love him forever. I realized he had way more patience than i did, he changed diapers like a pro, he always new the right thing to say to calm me down & still does. But most of all, he had the strength & courage to cry with me, when we both needed it & for that I will forever be thankful.

NOVEMBER 3- I am thankful for our friends & family. I am not sure where we'd be without them. They have given us so much love & support. I am thankful for the kind words & encouraging quotes, always at the perfect moment, when i need to be reminded of how much we're loved!  I am thankful for everyone who hasnt experienced the crushing loss of a child, but i also am so thankful for the ones who have. Their words calm me & let me know, it will be ok. We will survive this. I am thankful we are not walking down this road alone.

Happy 5 month B-day Clayton Michael

Happy Birthday little man, wow you'd be 5 months old.
Time has gone so fast, I laid in bed last night, saying my usual prayers for Clayton, and I thought back to the day he was born. What a day that was! I will always cherish the moment I saw him, I will never forget the amount of Love i instantly felt. That will never go away. Clayton will always be our first born & he will always be the Love of our life.

This is my all time favorite picture of sweet Clayton, so on today, his 5 month birthday & a hawks game, I thought it was perfect.

Happy Birthday little man, we love you so very much!
XOXO

October is infant loss month-

So as October is drawing to end, I am finding myself healing wonderfully. I sometime can't believe how well were doing and its only been 4 months since Clayton went to heaven. I never thought I would have made it this far, but then i am reminded that, yes i would have, Clatyon wanted that for us. To be ok. So with that, October is infant loss month, so I thought I'd share a beautiful article sent to me by another mother, who also lost her son, to Myotubular Myopathy. It's the best way I can explain how it feels to be a mother of a baby in heaven. Some of you will never know what its like (thank God for that) but here is just a glimpse of what its like, at least on some days!

Miss you so very much Clayton Michael-

The heartbreak of infant loss

By Laura Schubert

Did you know that October is Pregnancy and Infant Loss Awareness Month? I'll bet not. Despite the infant mortality crisis that's been at the forefront of Milwaukee's public health news for months, the only people who have more than a cursory comprehension of what it means to lose a baby are those who've lived it.

Infant loss is nature's cruelest practical joke. It's investing all of the required time and effort into pregnancy, only to be robbed of the result. It's cradling a body that grew within your own and trying to reconcile the cold, lifeless form in your arms with your memory of the baby who turned double flips in your womb.
It's worrying that you'll forget what your child looked like and snapping an album's worth of photos that no one will ever ask to see. It's sobbing so hard you can't breathe and wondering if it's possible to cry yourself to death.
Infant loss is handing off a Moses basket to the nurse who's drawn the unfortunate duty of delivering your pride and joy to the morgue and walking out of a hospital with empty arms.
It's boxing up brand new baby clothes and buying a 24-inch casket. It's sifting through sympathy cards, willing your foolish body to stop lactating, clutching your baby's blanket to your chest in hopes of soothing the piercing ache in your heart.
It's resisting the urge to smack the clueless individuals who compare your situation to the death of their dog or who tell you you'll have another baby, as if children are somehow replaceable.
Infant loss is explaining to your 7-year-old that sometimes babies die and being stumped into silence when she asks you why. It's watching other families live out your happy ending and fighting a fresh round of grief with every milestone you miss.
It's being shut out of play groups for perpetuity. It's skipping social events with expectant and newly minted mothers because, as a walking worst-case scenario, you don't want to put a damper on the party.
It's listening to other women gripe about motherhood and realizing that you no longer relate to their petty parental complaints because, frankly, when you've buried a baby, a sleepless night with a vomiting toddler sounds something like a gift.
Infant loss is pruning from your life the friends and relatives who ignore or minimize your loss. It's recognizing that, while they may not mean to be hurtful, the fact that they don't know any better doesn't make their utter lack of empathy one whit easier to bear.
My baby girl would have been 5 years old this month. I don't know what she'd look like, what her favorite food would be. I've never had the privilege of tucking her into bed, taking her to the zoo or kissing her boo-boos. I will never watch her graduate or walk down the aisle.
Infant loss is more than an empty cradle. It's a life sentence.

XOXO- 

if we were in vegas- we'd put our money on it!!

So the topic of other children often comes up, & I sometime think people are afraid to ask me, they might think its too soon or that im not ready to talk about. Well i am, its the main thing on my mind, how to grow my family. This is not the way we hoped or dreamed it to be, but God, Clayton & us did not want our family to start & end this way. Since the beginning i have been researching my tail off about Myotubular Myopathy and our future children options. As a carrier of Myotubular Myopathy (MTM) I have a 50% chance of each sex having the disease,  but 75 % of a healthy, living, breathing, striving child.(granted nothing else goes wrong, but thats a whole other blog)   During my early stages of research I was told that 50/50 was our chances, but after doing a little soul searching we realized that yes a girl could be a carrier, but the disease would not affect her quality of life. yes she would be a carrier, but she would be like me, & whats wrong with me ( ha ha I bet marcus could beg to differ) so realistically we have 75% chance, & like my doctor said, if this was Vegas, we'd put our money on that! So the route of getting pregnant naturally, just like most of you & then waiting for CVS testing to tell us if the baby is affected. That has been the route we think is right for us. Not to say that we dont think its going to be the most mentally draining and trying time in our lives.  I read a wonderful quote one time and it said,

and thats what I have to remember. This life hasn't been easy, although there are definitely days I just pray for it to be easy! while talking with Marcus the other night, I asked why this has to be so hard, he said, "cause we can handle it! plus what fun is life if its easy!?" I thought about that, he's right, but you know, sometime i just wish it were a little easier! just for a moment!
 This isn't the life I dreamed of having, but its the life I have been given, so I better make the best of what I have. Because really somewhere, somehow, someone has it worse than me.  So I am grateful for what I have. I am grateful for the ability to grow my family, as difficult as it might be, I still have that gift!
Yes the days of, I wish this wasn't me, or why can't i just get what they have; play through my mind & for a moment I believe them & let them take over, but then Marcus reminds me, it will work out for us, we will get what we want, this will NOT defeat us. This is not the way the story will end.
When I hear an announcement of pregnancy, or see a newborn baby, I know in my heart, that will be us someday & we will have what we deserve, maybe not when we want to, but when GOD wants us to.

so until then, I hold out hope, remember the wonderful son I DO have & trust that God wants us to have a happy ending!

make today a beautiful day, if not for you, for someone else! XOXO

what are the whispers in your life?

I'm learning to appreciate the life I've been given. Some days better than others I can admit. But the days that are tough, I just take a deep breath, look around me, remember Clayton & then I realize, I'm ok. This is the life we've been given.

 I appreciate so much more these days, just the little things. Do you ever look to the clouds? What are they telling you? Trust me, take some time & just look up, let your mind wander. They are telling you something its just a matter of listening!

Everything in our life is telling us something, things happen for reasons. Life has an "ah ha" moment, as Oprah would say. Its just if were in tune with ourselves to hear that moment.
I think about the wishers in my life a lot, what is it telling me. Its telling me "we will be ok, this is what was planned." Even though I didnt hear  it before, or really like it, its it.  When it all boils down. I am who I am now because of this, we CAN have a family, it may not look like the one i had in mine, it may not arrive the way i thought it would, it may not even look the way i thought it should, but I will have a family, of my own, someday.

So with that, I am noticing to appreciate the little things, because they are what is making up of my life! the little whispers in life.
think about what are the whispers in your life?
your life is speaking to you, what is it saying?

XOXO-