I'm Spending Christmas with Jesus this Year

I'm Spending Christmas with Jesus this Year"

I see the countless Christmas trees
around the world below
with tiny lights like heaven stars
reflecting on the snow

The sight is so spectacular
Please wipe away that that tear
For I'm spending Christmas
with Jesus Christ this year

I hear the many Christmas songs
That people hold so dear
O', the sounds of music can't compare
with the Christmas choir up here.

For I have no words to tell you
of the joy their voices bring
for it's beyond description
to hear the angels sing.

I know how much you miss me,
I see the pain inside your heart.
but, through our memories so dear..
We're never far apart.

I can't tell you of the splendor
or the peace here in this place
Can you just imagine Christmas
with Our Savior.......face-to-face.

I'll ask him to light your spirit
As I tell him of your Love.
Then I'll pray for 'One another'
As you lift your eyes above.

So please let your heart be joyful
and let your spirit sing
for I'm spending Christmas in heaven
and I'm walking with the king.

Update

Today it has been 9 months since saying goodbye. Lately, I find myself missing him more. I think this is in part due to the holidays. I LOVE Christmas. I am a Christmas person. I cannot wait to decorate and shop and just simply love being with family. (that doesn't sound very "true meaning", but I love that part too!) This year... it's just not right. He is missing. I should have a child to buy for. He should be here in our Christmas picture. He should be wearing the cheesy cute snowman outfit I bought for him last year when it was on clearance... He should be enjoying his first Christmas. 9 months is the perfect age! Still a baby, but old enough to enjoy it... It's simply not fair! Instead of buying gifts for my baby, I bought things to take to his grave. I am angry and bitter. I feel stupid to have thought that he would be here... I knew he was sick, yet I bought all these things for him last year... and now they sit in our house. A reminder of lost dreams.

I am also upset that I have not been able to successfully conceive again. At this point, it seems like getting pregnant is going to take some time... my horomones are still not normal and are not conducive to a pregnancy. I am going to the doctor to discuss this, but am not sure what to do. I've been taking some natural supplements, so we will see how that works this month,... but to be honest, I am not expecting anything. I keep telling myself that if I am not pregnant by Max's first birthday, I will likely be buying for David only next Christmas too.... my heart is broken and I simply don't know how to fix it...

And the winner's are...

First of all, I didn't realize just how blessed I would be by participating! I wish I could send you all paintings. If anyone decides they really want one, I would be more than happy to make you one for $10. This will cover the cost, plus mailing, and extra will be donated to a CDH organization, The Parker Reese Foundation. Just email me at Ashleynaye@aol.com.

Anyways, the first winner was randomly chosen by random.org. The first winner is Jamie W, comment number 11!

The other two winners are winners that are not so random... they are Maxton's special days.

Candice Beal- comment number 3... because Maxton's birthday is 3/3/09
and
Lost for Words- comment number 18... because Maxton lived for 18 days with me before going to heaven.


Congrats you guys!!! :-) Please email me or leave a comment here so I can get in touch with you.

Much love to all my new friends during this difficult time. I will be visiting your blogs in the coming days and praying for you families. Thank you for stopping by.

25 days of Giveaways! :-)

Tomorrow- Dec. 19th- is my turn to give away my item to those who have lost a baby (or more...). I am going to post my giveaway today and I will announce a winner tomorrow night. For those of you who are new to my blog, welcome. I am so sad that we have met under such heartbreaking circumstances, but I look forward to visiting your blogs and reading about your angels.

I reinvented myself after Maxton, and one of the things I found was that I love to be crafty. This was really something I have always known, but not something I have neccessarily always done. Anyways, after Maxton passed, I began painting...

So, I would love to paint a canvas in memory of your little one. By no means am I a great artist, but i can promise that I will put a piece of my heart into your work. I cannot show you what I will be sending because I like to read through the persons blog and create something especially in honor of their angel, but if you would like to see some samples, please go here

Some of you may already have a painting... if this is the case, I have something special in mind, so please still enter!!! :-)

AND... in honor of Christmas and my sweet son, I would like to give away 3 prizes..... so, there will be three lucky winners.

To enter, please leave me a comment and tell me what makes you think of your angel... I will go first!

turquoise makes me think of Maxton. Turquoise is the color of the CDH awareness ribbon. Maxton was born with CDH- congenital diaphragmatic hernia. I LOVE all things turquoise now... Also, butterflies make me think of Maxton... specifically, turquoise butterflies.

Now it's your turn! :-)

25 days of giveaways... day 2!

Visit Jeanette to win today's prize- a beautiful handsown doll! Check it out.

25 days of giveaways.... day 1

Visit Tina's blog to win a beautiful hand stamped necklace with your little angel's name on it. Tina makes awesome jewelry that you can also buy if you aren't the lucky winner. :-)

Hope everyone had a good holiday!!

25 days of Christmas!

This is for all you mommies with babies in heaven. Tina had a great idea of hosting blog giveaways for all those who have lost babies to help cheer them up this holiday season. I can atest that this holiday season will definately be difficult. I have moments where I am REALLY missing my Max and when I look for christmas gifts I see all kinds of awesome things I should be getting for me sweet baby. Instead, I am making him a wreath for his grave.

Anyways, ths giveaways will start the day after Thanksgiving. I will be hosting a day, but I am not going to disclose which one! :-) You will just have to check back!
Thinking of everyone during this holiday season! Check back on Friday for more information!!

Pregnancy and Infant Loss

PLease light a candle tonight in memory of Maxton and his many angel friends as today is pregnancy and infant loss day! Time is 7pm. Leave your candle burning for an hour. This will creat a wave of candles as one time zone blows theirs out, another will light thiers.

Thanks for participating!

Just an update..

I just wanted to update you all- I have been trying to get pregnant for several months... since probably May. I have also not had a cycle since Maxton was born, so I have taken COUNTLESS pregnancy tests.. all negative. I had a dream/feeling... something.. in June that told me I would get pregnant in September... well, I thought I would get pregnant in September. I was wrong... I did,however, FINALLY start my cycle again!!! :-) Sept. 30th, no less. Thanks God.

Just wanted to update you all since I know many of you know we are "trying" and now hopefully, my cycle will regulate ( I had NEVER missed except one month before I was pregnant) and we can really start trying..

Stay tuned!

Also- happy 7 month birthday to my beautiful son and to his best friend in heaven Kaden- happy 6 month birthday! I know our sons are best friends Kristi! I won't be able to post... nor do I really want to... tomorrow because I am moving out of my parents house and in to our new house- which is conveniently in their back yard! ha! :-)

Happy 6 month birthday Max!

My dear sweet Maxton,
Six months ago Mommy was anxiously awaiting your arrival. I was laying in the hospital bed completely terrified and excited at the same time. I knew that your battle against CDH would be very difficult, but you were my rockstar and I knew that you would be able to do it. I remember getting an epidural and being completely terrified that childbirth would hurt.( Mommy got lucky because she didn’t feel a thing. Grandma had to tell me that you had been born!) I remember being upset because my labor wasn’t progressing and being afraid of a c section.I remember being upset that you might be born on 3/4/09 instead of 3/3/09. (silly, I know!) I remember that when the nurse came to check so that they could put in an internal monitor, I was already 10cm dialted! I remember having to wear oxygen and hating it because it was in my way! I remember laying there still waiting to push because we were waiting for the doctors from the children’s hospital. Annie later told me that she heard my doctors announce “delivery in 2” and then a large swarm of doctors came running in. I was terrified at the last moments before you were born because the swoosh, swoosh of your heart monitor wasn’t swooshing near as loud. I remember Grandma telling me you were born and looking up to see you. You were so purple! I had to ask if you were alive because I honestly thought we had already lost you. I remember looking over my knees and watching them clean you. I remember daddy getting up from his seat (he was waiting to watch you be born, but got pretty pale… yeah, daddy almost fainted, but don’t tell him I told you!) and looking at you. He had this sparkle in his eye- something I hadn’t seen before. I remember he and Grandma going over to take pictures of you while the doctors worked on you to get your breathing tube in. I remember daddy coming back and saying you were the absolute most beautiful thing he had ever seen. I remember watching them wheel you away. I remember being terrified that I might not see you alive again. I remember everything that night so vividly. Maxi, you changed my world and I am forever grateful for that one night, the night I turned into your mommy.
I remember the nurse from the NICU coming back to clean up your area while I waited to deliver the placenta (it took about an hour!). I remember that she told me you were a big boy- 8 pounds, 11 ounces! I remember that she said that you were stabilized enough to move you to the children’s hospital instead of the transition nursery and how this was a good thing! I remember going to my room and waiting to hear about you. I remember calling the children’s hospital and trying to get an update before I went to bed, but they didn’t know yet (or couldn’t put me through to someone who did). I fell asleep waiting to hear about you, and when the doctors called at 4am I was terrified because they had told me they would call in 2 hours, so they were 2 hours late! I remember the doctor telling me you were great! I was so relieved, but cautious because I had read many stories about CDH babies. Mommy never let her guard down. She was so worried about losing you. I remember Grandma wheeling me over to look at you- you were sooo beautiful! You looked like the perfect mix between mommy and daddy. You wiggled you toes when I touched them. You were so precious and I immediately loved everything about you. I just knew you were going to make it.
I remember on Day 3, when Mommy was getting ready to be discharged, getting a call saying they may have to put you on ECMO. I was SO upset and scared. I remember signing the ECMO papers and the doctors telling us that it would take about an hour. Twenty minutes later they came to get us- I was TERRIFIED! I was so afraid you were gone. They told us that they were able to stabilize you, but didn’t really expect you to make it- that the next 24 hours, if you had an “episode” there was nothing they could do. That you didn’t qualify for ECMO because of your brain bleed. I remember the look on daddy’s face. I will never forget it. But you proved those doctors wrong! You lived for many days, when they had doubted you would have them. I knew you were my hero. You are and always will be! I will be forever grateful for those days you proved those doctors wrong. In the end when God called you home, mommy didn’t want to let go! Mommy had so many dreams for you, but God had bigger plans. I still don’t know why you can’t be here for your 6 month birthday. Why we can’t be outside playing instead of me standing outside alone at your grave, but I do know that I love you. I will always love you. People will know you. People will love you. You will forever be a part of me and daddy and we will always celebrate your amazing life! Miss you sweetie. I would give anything to kiss your sweet baby face right now and have you giggle and pull on my hair. Happy 6 month birthday!!!! Know that mommy has so many memories of you that she will always cherish on your special days!

Love Always,
Mommy

Babies in the Sky

I have been working on a new website:

www.skybabies.blogspot.com

This website is for anyone with an angel. Much like, Carly at www.namesinthesand.blogspot.com, I have this dream where Max is playing in the clouds. I dream that one day the clouds will spell out his name to me. As of yet, this has not happened. I decided that I wanted a picture of Max's name in the sky. Then, I wrote other babies names in the sky- some CDH, some not. I would love to honor your little angel. Please check the site and see if your child's name is on there. I still have these names to do:

Grayton
Ireland
MJ
Caleb
Sophia and Ellie

If you are not on the site and not listed here, please email me or leave a comment and I would be more than happy to make you one.

Maxton's Tombstone

I just wanted to post a picture of Max's beautiful tombstone. I LOVE it!!!! :-)

Change CDH

Change CDH is a fundraiser that I am doing to benefit Parker Reese Foundation. PRF is a non profit organization based out of North Carolina that provides a home to CDH families delivering at Duke and UNC. they also provided us with tons of support during Max's life and after his death. They sent a beautiful arrangement to his funeral that made me cry when I received it. I am so proud to be a part of this foundation.

Change CDH involves collecting your loose change to help PRF! Simply put, I would like everyone to collect their change until October 31st (or you can keep it going forever!) and take the change to the bank and then write PRF a check for that amount. Pretty simple. If you would like to get others involved you can put a jar on your desk at work or anywhere for that matter. You may think that change doesn't matter, but my family has collected over $100 in the past couple of months! $16 sponsors one family per night, so change can definately make a difference!

Thanks to those who are willing to participate. I plan to do several fundraisers over the next few months (years, etc) so I understand not everyone can participate, but I would love to know who is participating! :-) Please help us CHANGE CDH!!!!

Prayers please!

Just a quick note to ask for you to please, please pray for Ireland and Max (Maximus). They are both on ECMO now and need prayers!!! Links to their blogs are on the right.

Update

Just wanted to post an update. David and I are now living in Kentucky- with my parents. Please pray for us. :-) No, really, it is going fairly well. David is starting to get a bit stressed out because he has yet to find a job. Please pray that he finds something soon. I am currently teaching kindergarten as a resource teacher. Basically means I pull kids who are having trouble and work with them in small groups. Going good so far!

In other news, I went to my obgyn back in July due to not having a cycle since Max has been born. She gave me some progesterone which started the cycle and did some blood work. She is thinking I may have poly cystic ovary syndrome. This is not good news when it comes to try to conceive. I will likely see a specialist in October about this (as I won't have health insurance until then!) Please pray that maybe this month I will have a cycle! I never had problems before Maxton and was always regular, so I am hoping the horomone that way too high (DHEA-S) is coming down and that my ovulation will return to normal. Sorry if that was TMI. :-)

Also- please pray for Ireland as she is making her entrance today!!!!

I have also gotten Maxton's gravestone! It is beautiful! It has a big butterfly at the bottom and the four smaller butterflies. The big butterfly represents my Maxton and the smaller ones represent his angel friends. I will post pictures as soon as I can! I cried when I saw it. I miss my sweet baby soooo much.

2 New Angels

I wrote on my blog a few posts ago about a sweet family- the Snyder's, whose son was battling cancer. It is with much sadness that I reports that Sweet Benjamen passed away yesterday. His fight was amazing and my heart goes out to his family. Please visit Benjamen's story and send his family some love.

Also, as many of you know who follow CDH blogs, sweet baby Jackson also passed away today. Please pray for Candice and Rob and their new family as the begin their journey of grief. CDH is simply NOT FAIR!!!!

Many prayers for all those families out there facing hardship. Prayers for Max's (another CDH baby named Max!)family in Florida as he is set to be born on Monday and for Ireland's family who is about to be born as well!

What Makes You Happy?

I've been tagged by Tina. Here are the rules to this tag:

1. Mention and link back to the person that tagged you.

2. List 6 little things that make you happy.

3. Tag 6 other bloggers and let them know "They're it".

Here are some of the things that make me truly happy:

1. Thinking of my sweet Maxton. :-) Sometimes it does make me sad, but truly happy at the same time. When I think of everything I have gained because of him my heart smiles... which bring me to number 2.

2. All of my new friends. I am truly so grateful for everyone who has supported me recently. It is so awesome to have such a network of friends. Even though I have not met many of you, you are truly such a part of my life and I think of your babies/families often.

3. God! :-) Nuff said.

4. My family. My husband is awesome. My mom and dad are awesome! David's parents are awesome. I feel super blessed to have such an awesome family.

5. My new job in Ky. I am going to be teaching special ed. I will get to work with kids... what could be more happy than that!?

6. Painting and Singing. When I down, one of these things usually helps me.


What makes YOU happy?
Tag! You're it:

1. Kristi

2. Lisa

3. Marion

4. Bree

5. Jess

6. Patty

:-) Share with me what makes you guys happy, please!!!

Some thoughts

I have been so stressed lately about moving to Kentucky. Not because I don't want to, but because I was supposed to be there with Maxton. But he is not here. It simply stinks- big time. I was up on my soap box tonight wondering why bad things happen to good people. I have a friend back home in KY who is watching her son slowly go to heaven as we speak. He has cancer. His parents are WONDERFUL people who adopted him and loved him much more than many parents love their children. He is their son and soon he will be in heaven with my Max. Jennifer- if you are reading this, I so admire your family. You were such a source of strength for me during my CDH journey, and I don't know if you ever even knew it.

Anyways, back to what I am saying- why do bad things happen to good people? I think it is because if we were bad people, would we even care. Would we feel half the emotions that we have all felt? I hope this doesn't come across as me saying I am better than others, and I hope that it makes sense. But, I guess I am trying to say that we care so much because we are good people. God chooses us because he knows that we will put all we have into it- all of our feelings, all of our love. I am sure that he has many other reasons. But tonight, for me, something about that thought clicked. God knew that I would love Max more than any one else ever could... and that is "why me?" He knew that I was perfect for Max and he was perfect for me. And that is all I need to know about it..

On another note- please visit :http://www.caringbridge.org/visit/benjamensaigesnyder

Please pray for Benjamen and read some of his story if you have time.

Autopsy

Today we went in for Maxton's autopsy. It has been 4 months today since my angel grew his wings, so it was an especially hard day. We learned that I was wrong (Thank GOD!) and that there was no underlying blood clotting issue. Unfortunately, during Maxton's repair surgery his liver was lacerated, twice. It is believed that due to this laceration Maxton's crit levels plummetted early on the 21st. I had posted that they were hoping that the bleeding would eventually swell his abdomen enough to clot, which it likely did. Unfortunately, this was a double edged sword, as it caused so much pressure to be put on his bowel that it ended up killing his bowel. Because his bowel had died, his other organs and blood and things went into overdrive and tried to fix the problem, but ultimately caused all of his systems to fail. My poor baby bled... from basically every organ he could possibly bleed from. It was very hard to hear this. I saw the word "hemorrhage" too many times in that autopsy report. We know that his doctors did the best they could, but it is hard to not second guess our decision to have him here. It's hard to not imagine- what if? The doctors did tell us that at one time (I am assuming the Friday after he is born when we almost lost him) it was thought that he was "unrepairable". I smiled when he said this. He kind of stared at me, but as a mother i was SOOO proud. My baby proved them wrong- at least to me he did. They thought he would never make it to the repair, yet he did. I laughed and said he was one tough little guy and the doctors certainly agreed.

My mind is in overdrive tonight, so I don't really feel like writing much more, but did want to let everyone know just what happened... no matter how sad/unfortunate it was. Thanks for thinking of us.

On another note- I have a job in Ky as an elementary special ed teacher. :-)

Letters

I mailed my letters today. I mailed 119- for some reason there were 19 extra envelopes in my package. My mom also mailed 116 (she had 16 extras!). :-) Thanks to all who gave us stamps so we could mail letters from you!!!


We are going in next Tuesday to hear about Maxton's autopsy. I know this will be a difficult day. Coincidentally it will also be the 4 month angelversary of our little guy. :-( We will be sure to update with what they tell us. I am expecting to hear of an underlying blood disorder, so we shall see.

Big News!!

I have some big news. PLease pray for us as things here are kind hectic.


David and I are moving to Kentucky. We both quit our jobs this week. My last day is on July 29th, his on July 24th. Please pray that we quickly find jobs there. It is VERY unlike me to quit my job without having one, but I have decided to have faith that I will find something! We will be living with my parents until our house sells, so pray for that too... :-) Kinda scary!!

We are very excited about this move, but understandably scared. We had been trying to move last summer when we found out we were pregnant. We ended up staying here (thank goodness!) and now are ready to go. Our life has been so uncertain lately and it felt good to finally decide where we would be and what direction we are taking as a couple. It will be nice to be closer to my family and closer to Max's grave. It will be sad to leave David's parents though.

This past week I was able to meet with Kristi and Craig, Kaden's parents. It was wonderful- like visiting with old friends. Thanks Kristi and Craig for letting me invade your vacation. :-) I think it really helped me to visit with you all.

The hospital called yesterday about Max's autopsy (I think). They left a message and it was too late to call back when I got home, but I will call them on Monday. I know this will be a difficult thing to do, but we are ready to hear the results. They were specifically looking at his brain bleed and other bleeding issues, as well as possible organ damage during his repair surgery.

Remember, there are only a few days left if you are planning to mail blue envelopes for CDH to Ellen show. If you are not able to mail envelopes, please email Oprah on WEDNESDAY JULY 15TH to suggest CDH as a show topic. We are hoping to raise awareness about this awful defect! Thanks guys.

Pregnant/ 4 Months

Let me start this off by saying.. no, I am not pregnant. A year ago today, I found out that David and I would become parents. Little did I know, just how much our lives would change. I had taken off of work for some prebirthday pampering (my birthday is on the 6th) and drove David to work and went to get my hair colored. It had been years since I had gotten my hair colored, but I decided to just do it. I came home, made my hair look all cute, and then went back to work to get get David. We went to Fazolli's for dinner. We were planning what we would do for the weekend as my parents were coming down the next day and would stay through my birthday. I was super excited. I am not a big drinker, but was hoping to get a nice big margarita. :-) Anyways, I knew I should have started my period about 2 days before, but sometimes I am a couple of days late. I talked with David and we decided to stop and get a pregnancy test on the way home just to be safe. We weren't really trying to get pregnant, but we weren't not trying either... Anyways, came home and took the test. It said "pregnant". I was thinking wiat... what!? I told David. He said- "no way, you read it wrong." I said- "It's the one with the words". Freaked out a little.. got super excited, then tried to figure out if we should wait to tell our parents until we were all together, or just tell them. Of course, I called my mom... she wasn't home. Called my grandmas looking for my mom. She had just left there. Grandma could tell something was up, but I didn't tell her. Finally got in touch with mom and told her. :-) Then we called David's parents and told them too. Then I took another test just to make sure. :-) Went out the next day and bought another test to take it also. All said pregnant... very quickly I might add.

In hindsight maybe the universe was trying to tell me something as my mom had appendicitis that weekend. They came here, even though they shouldn't have. She thought she had her appendix out when they removed her gall bladder. She was here Friday through Sunday in pain, but still went out to celebrate with us. Her appendix burst sometime on Sat. (most likely) She went to the hospital where she works as an RN on Monday and looked up her records. Confirmed she had an appendix still and then informed them that it burst on Sat. Praise God that he let her live through all of that.

My pregnancy was not an easy one, to say the least. Every appt. except for one I was told "bad news". It started in July- Sept (when we had a CVS) then the one normal appt (liekly because it was the only one that didn't contain an ultrasound), then the CDH diagnosis in Oct.

Anyways, sorry for the rambling. The last year has been crazy. It has been so profound in reshaping my life. Today my sweet baby would be four months old.. or a year old, depending on how you look at it. I miss him so incredibly much. I see 4 month old and wonder if their parents realize all they have been given. I wonder what my sweet baby would be doing.

The question people keep wondering is if we are trying again. I would like to say that we are... but I have yet to have a cycle. It has been 17 weeks and nothing. I have called my doctor (about a month ago) and was told to call back in August. I talked them into letting me call back in 4 weeks instead. So, this week I will be calling to schedule an appt. I feel like I need to be pregnant again in the near future. I feel like each day that passes without a cycle I start to get more down, wondering what is wrong. I am so worried that I will never be able to have another baby. It terrifies me. I have taken several pregnancy tests (like at least 10) because I am always wondering... what if? The nurse at my OBGYN said "well you've been under a lot of stress so that is likely why you havent had a cycle" and I said " i think not haveing a cycle is causing me stress". Hopefully, they will agree to see me this time.

To end this post on a positive note, I am soooo excited to be meeting Kristi and Craig, angel Kaden's parents, this week- on Monday! I think it will be great to meet a family that I feel so close to throughout this. Kaden was born 3 months ago today, one month after Max. He also passed away one day short of a month after Max. Whenever I think of Max on his special days I am always thinking of Kaden too. I can't wait to meet his awesome parents. Happy 3 month birthday Kaden!!! I know that you and Maxton are keeping each other company in heaven and know that your mommies wish we were able to be spending time with you here instead!!

Under the Tree

Carly, the mother that photographs the beautiful sunset/daytime pictures of babies names in the sand, has a project 'Under the Tree' for grieving mothers. Read more about it here.

Here are June's questions with my answers.



Hair Color: Brown.

Eye color: Hazel/Greenish

Profession: Adult Mental Health Case Manager

Relationship status: Married


My Favorites
Favorite color: It was green.. but I now love turquoise as it makes me think of my Maxton.

Favorite movie: I have way too many... maybe A Walk to Remember

Favorite animal: hmm... butterflies. :-) I have become obsessed with blue butterflies. Although, maybe my favorite is my doggie, Charley Dog!

Favorite store: Target

Favorite childhood memory: spending time with my Maw Maw eating frozen hamburgers with extra salt and tons of ketchup.. :-)

Favorite hobby: singing, painting, crafting, writing...

Favorite song/singer: Right now- One Moment More or Praise You in the storm.

Favorite book/author: this will sound funny since they are young adult books, but I love Lurlene McDaniel books.. I also love Jodi Picoult

Favorite school subject: hmm... choir or psychology

Favorite vacation destination: Id like to go to the beach soon

Favorite food: Cheeseburgers or mexican food

Favorite restaurant: Maggiano's... they have the best pasta.

This or That
Coke or pepsi : I like Coke Products.. I have a nice collection of coca-cola things.
Beer or wine: neither... i like margaritas though.
Coffee or tea: tea
Apple Juice or O.J.: Apple Juice..
Summer or Winter: um... Fall? :-)
Cats or dogs: Dogs
Salty or sweet: Sweet! or a nice combination of both..
Plane or boat: hm... boat
Morning or night: night
Money or love: Love.. all you need is love.
Breakfast or dinner: I like having breakfast for dinner!
Forgiveness or revenge: Forgiveness... most of the time...
House or apartment: We live in a townhouse.. I would like to have a house with a big back yard.
Like to cook: sometime..

Have You Ever
Got a speeding ticket: Yes
Wished you were someone else: Sometimes I think about it, but if I really had a choise I would probably stay right who I am.
Cried during a movie: Of course... moving, advertisement, song...

Describe yourself in one word: Determined
Biggest fear: never getting to experience motherhood to a child who stays with me
Biggest mistake: I'm sure I've made several
Your proudest accomplishment: my Maxton, of course..
Dream job: I would love to work/play with sick children... that seriously is my dream job.. always has been. ( i don't know any other 12 year old who would say they want to work with kids with cancer)
Special talents: I can turn my right foot backwards and still walk... yeah, I am weird.
Where would you rather be at the moment: in Kentucky with my family
Famous person you want to meet: I dunno...
Song to be played at your funeral: I'll let my family pick... though I love Amazing Grace...

Father's Day

I wrote this poem for David for Father's Day. I had planned to put it in a photo video, but instead made a photo book with it! I gave it to him last night because he is working today and I didn't want him to be too sad.

Dear Dad
Don't be sad
I know you had your hopes for me
To sit in your lap while you watch TV
To play tennis like Rafa
Or wrestle like Chris Benoit
To learn to fight in the UFC
To grow up to be the best I could be
But God had other dreams in store
You needed me here but he needed me more
Don't worry Dad, I feel no pain
And because of me, look at what you've gained
A wife who sees a father's love
And an angel watching from above
It's okay for you to miss me Dad
But please, oh please, don't be sad
I'll be in heaven waiting for you
Until you finish what God sent you to do
And when that day comes I'll smile bright
And be in your arms, where I fit just right.
Until then, Dad, I'm always here
To listen when you need an ear
To watch over you and send you my love
From heaven, up here above.
I love you forever, Dad, that's a fact
From you sweet baby boy, Max.


Coincidentally, today is also 3 months since Maxton has been gone. I cannot believe it... 3 months. I miss my little man more than I can even describe, but I am doing pretty well coping with my feelings. I have been painting and sending paintings to other angel families. It has definately helped me to cope. If you are reading this and would like one or want to refer someone, please click on the picture at the top right. It will take to you that blog. This weekend is especially hard for me- not only is it father's day and Max's 3 month angel day, but Max was also conceived on June 22nd last year. :-( This day last year, I had no idea my life was about to change. We weren't trying to have a baby, but it was the one time I had thought.. "we might get pregnant" and we did. Now, I cannot stop thinking about getting pregnant again. To be honest, I am pretty much obsessed with it. I know that having another baby will not replace Max, but it will give me something to look forward to. I am so ready to be a mommy to a child who gets to live on earth with me. I am ready to watch David be the awesome dad that he is. I know it will happen when it is supposed to, but I can't help but want it to happen now. I know that Max is up there trying to find the perfect little soul to send back down here to us.

Happy Father's Day to all the daddy's out there!!!

Maxton, sweetie- we miss you so much. Not a day goes by where we don't think of you and wish that you could be here sharing your life with us. I know that you are in heaven and I cannot imagine the things you are seeing there. I know that one day we will be together and you can show me all the fun things you have done and we can do them together. Please continue to watch out for us. We love you little angel and miss you so much!!!

Letters for CDH

Alright, so I said I was going to post this the other day... but didn't. :-) We are mailing letters to the Ellen show on July 15th! I am hoping I get close to 300 letters mailed from the Maxton team! :-) I have some blue envelopes if anyone in Nashville reading this needs some. I already have finished about 100 here, and my mom has some in KY. Please check out this blog for helpful hints. Since several of you have asked- this is what I am putting on my envelope

Every 6 minutes a baby with CDH is born. (sometimes I spelling out CDH,sometimes not)

HALF WILL DIE!!!

My son did.

For more information, please visit:

www.babymaxton310.blogspot.com
or
www.lettersforcdh.blogspot.com

I am writing all of this on the back of the envelope. If you are mailing some and find this too time consumeing, try to at least put a one liner on the envelope.

I am also writing a short, one page letter to include in my envelopes with maybe a few pictures of Maxton. I plan to finish it this weekend. If you are mailing envelopes and would like to include my letter, let me know, but mailing empty ones is fine too! We just want to flood the mail with blue envelopes!!! :-)

For those who want to help, but don't have/can't find blue envelopes or don't have time to write the out, you can help by donating some stamps if you can afford to.* I know I have asked alot of everyone lately, and if you can't help with this one, I understand! I love you guys and thank you so much for you support. I plan to do numerous things in the near future to help raise CDH awareness and funds, and I understand that peopel can't participate in every one of the events

Thanks guys!

This was a picture done by Carly, a mother of an angel baby at Names in the Sand. (www.namesinthesand.blogspot.com) Thank Carly!!! This turned out awesome.

PRAYERS!!

Kamryn and Brooke (twins) have arrived!!! Please pray for them. Kamryn has CDH and is relatively stable now in the NICU. Brooke doesnt have CDH but has some pneumonia so she is also in the NICU! Please pray for them. Their parents are wonderful people and they have a super big sister named Hollie who I am sure will need your prayers too!!!

Also- Please pray for Baby James. He is fighting over in the UK. He is doing well and is a CDH superstar!!!!! His parents are also wonderful. :-)

Please keep the other CDH babies- Avery, Carter A., Jaime, Gia, Ruby and any one else that is in the hospital- in your prayers.

I plan to post more tonight about letter for CDH and also about a picture I had done for Max. Check back later!!
Ash

My 100th post

I borrowed this from another site. I had so hoped to be blogging about all the cute things Max was doing... or perhaps how we were bringing him home... It's still all so surreal.

What Makes A Mother

I thought of you all, I closed my eyes
and prayed to God today.
I asked what makes a Mother
and I know I heard him say,

"A Mother has a baby.
This we know is true."
But God can you be a Mother
when your baby's not with you?

"Yes you can!" He replied
with confidence in His voice,
"I give many women babies,
when they leave is not their choice. "

"Some I send for a lifetime
and others for a day.
And some I send to feel your womb
but there's no need to stay."

"I just don't understand this God,
I want my baby here.
"He took a deep breath and cleared His throat
and then I saw a tear.

"I wish I could show you
what your child is doing today.
If you could see your child smile
with other children and say.."

"We go to earth to learn our lessons
of love and life and fear.
My mommy loved me oh so much
I got to come straight here."

"I feel so lucky to have a Mom
who has so much love for me
I learned my lesson very quick
My Mommy set me free."

"I miss My Mommy oh so much
but I visit her each day.
When she goes to sleep
on her pillow's where I lay."

"I stroke her hair and kiss her cheek
and whisper in her ear,
Mommy don't be sad today
I'm your baby and I'm here."

"So you see my dear sweet one,
your children are OK.
Your babies are here in my home
and this is where they'll stay."

"They'll wait for you with me
until your lesson is through.
And on the day that you come home
they'll be at the gates for you."

"So now you see what makes a Mother.
It's the feeling in your heart.
It's the love you had so much of
right from the very start."

"Though some on earth may not realize
that you are a Mother until there time is done.
They'll be up here with me one day
and know you're the best one."

Hanging in there

This weekend was nice. I went to KY to a wedding. The ceremony was beautiful! I drove up by myself because David had to work. I went by the grave and talked to Maxton for a bit. This was my first chance to go by myself. There was cute teddy bear made from flowers that my grandma had brought for memorial day. It was very cute. I put his blue butterfly stake that I bought down also. I gotta say that it will be nice if we can get back to KY someday so I can be near him and go see the grave whenever I want.

I held my first little baby since Max this weekend. My friend RheaAnn has a 6 weeks old, Whitley, that I held for about an hour or so at the wedding. I thought I wouldn't be able to hold her when someone asked me to so they could get food, but I did just fine. In fact, it felt good. ( I was worried I might completely lose it!). I think it helped that little Whitley is a girl. But, I am proud of myself and thankful that God was able to help me get through that. Of course, right before that we were sitting behind a baby boy who was born on March 11th ( I hear his grandma talking about it). We ended up moving seats and I gotta say I was glad to.

I am still trying to adjust to my new normal. I miss Max everyday. Somedays I cry when I think about him and all the things I am missing, and somedays I smile because of all the things he gave me/taught me.

Please pray for little James' family as he is set to arrive tomorrow I believe. They are in England and his parents are awesome! I know James can fight CDH!

Please also pray for Stephanie as she goes to the hospital this week in preparation for birth of the twins, Kamryn (CDH) and Brooke. Stephanie is hoping they wait a few weeks before coming but will be at the hospital just in case.

Thanks for checkin in on us. We are doing our best with what we have been given.

Keychain

Thanks to Ashley for this tutorial on how to make a key chain using an awareness bracelet. David doesn't wear his Max bracelet all the time because 1.) he forgets to 2.) he isn't a big fan of bracelets... and probably other reasons too. :-) Anyways, Ashley made a keychain out of one that I sent her. I know alot of you probably have bracelets you are not wearing and thought might be interested in doing the same. I made some earlier today and it was SUPER easy. Check out Ashley's blog to read more about it! She also has some super cute crafts on there, so check it out!

Featured

Our family's story was featured in my hometown newspaper, Union County Advocate this week. The piece is really nice and well done. My mom said several people have asked about mailing blue envelopes!! :-) Hopefully we will be flooding Ellen's mail with blue envelopes. I think I have mentioned it on here before, but if not, many CDH families are going to be mailing blue envelopes to the Ellen show and emailing Oprah on JULY 15TH!!! Please participate in any way you can. If you can't mail envelopes or are afraid you will forget, if you could just donate a stamp or two I will mail envelopes for you. Click on the blue envelope to the right to read more about this project.

David and I are doing well. In fact, today is our four year anniversary. We went to Tunica from Monday-Wednesday with our parents. It was a very nice vacation. David won a little money and we basically ended up with a free vacation, free vet appt. for Charley and also a little extra for bills. :-) We had a nice trip and it was our anniversary gift to each other. Tonight we have just hung out. Thanks for checkin in on us.

Sponsor a Night

I am taking orders for shirts for Parker Reese Foundation throught tomorrow at 3pm. If you are interested in purchasing a t-shirt, the cost is $16 a night. This money sponsors a CDH family for one night stay at Parker's House, which is a home that allows families of a CDH child to stay FOR FREE for hospital stays, checkups, pretty much anytime they need a home away from home during the CDH journey. It is located near Duke and UNC. The stylish shirt is available in numerous colors and has some great CDH info on the back. Please let me know if you are interested an I can mail you an order form. I am sending mine off tomorrow, but they are taking orders through Sunday!! I'm torn between pink and purple, so I think I will get both. Please support this awesome cause!! Several families I have met during this time stayed at Parker's House and had we not been fortunate enough to live in a city with a major hospital, we might have stayed there as well! Email me at ashleynaye@aol.com for more info.

2 months

I cannot believe that it has been 2 months since I lost my beautiful son. So much has changed in those 2 months, but not in the way I thought they would when I first found out I was expecting him. I figured by now I would be tired of changing diapers, but I only changed 1. I figured I would be tired of hearing him cry, but I only heard him cry once exactly 2 months ago. I figured I would be tired of picking him up everytime he cried, but I only held him once. Mothers, please cherish every moment you have with your little ones. I know that when I am blessed to have another child, I will certainly never take a moment for granted.. even the "not so fun" ones.

I am doing well. I have good days and bad days... days where every time I think of Maxton I get sad because I want him back here... and then days where everytime I think of Maxton I am happy because I had him in the first place and because in 18 days my life changed forever. It really is amazing how quickly things can change in your life. I am in a big period of change and trying to adjust to my new "normal". I wish that Maxton was here and I was adjusting to having a baby at home, but instead I am adjusting to the fact that there will always be an empty place in my heart, a place longing for the beautiful child that I was given, whom I will never see grow up. And you know what... that is okay. It is okay for me to continue living without him... it is okay for me to miss him everyday, because it will be something I will do forever. But it also okay to think of the future and the good things that it holds.. some of them because of Maxton and because of the change he has instilled in me. I am going to be working with The Parker Reese Foundation and I couldn't be happier about it. I am working on planning a few fundraisers for them right now... most will take place this winter and next Spring. I am excited about honoring my Maxton that way and I know he is excited about it to. I am also excited about Maxton's Memorable Moments... I have been working on a few projects for it. If you have a referral, please visit the page and email me the info. David and I have some other exciting things in the works as well. So, simply put, we are living.. we are doing the best we can, with the circumstances we are given.

To my Maxton~
I cannot believe it will have been 2 months tonight since I held you in my arms. I miss you and my arms still long to hold you. I know that my life is better, because of you. I almost feel guilty that God felt that I needed to be given you to teach me so much... like it was selfish of me in some way to need you as a gift. I know that you are watching over me and I feel your presence every day. I cannot imagine what heaven is like, but I know someday I will be there with you. I have been reading a book called 90 minutes in heaven and if it's description of heaven is accurate than I cannot wait to get there and hold you and sing praises to God with you! I truly feel blessed to have been your mother and to be able to call you mine. I love you sweetie and miss you everyday.
Mommy

Pray for Colin

I just wanted to request prayers for Colin. He is at UCSF. He was there when Kaden was there and you may have read a little about him on their blog. His mother, Hayley, is on breath of hope and I read tonight that Colin is not doing well. He reherniated last week and has surgery to fix it. (he had never made it home before reherniating, I believe he is about 7 weeks old). Anyway, tonight he has a fever and they cannot figure out exactly what is causing it. They have sent out for blood cultures and are thinking infection but aren't sure. His crit levels are off too. Anyways, just wanted to request a few extra prayers for him. I don't believe they have a blog.

Thanks!

I want to thank everyone for getting Maxton's bracelets. If you ordered some from me I am putting them in the mail tomorrow (if I make it to the post office in time). I think I have emailed most of you about them. Also, if you need silicone bracelets anytime for anything, I ordered mine from www.ybuw.com. They came from China (if you ordered one please don't chew on it ;-) ) but they were the cheapest I could find. Almost half as cheap as most of the other companies. I also emailed to see if I could put a butterfly on the bracelet (it wasn't an option at the time) and they went and added it to options. they were awesome and I am very pleased. Also, if you plan to get a Parker Reese T-Shirt, let me know. The deadline to order is May 31st!

This week has been pretty good for me except that it seems like everyone is getting pregnant. Everyday this week I found out someone was expecting except for today (and yesterdays was just on a TV show) but it seems like babies are popping up everywhere!!!! I just want my Maxton back. It's so hard to believe he has come and gone. It's almost surreal if you have never experienced it. Those of you who have, I am sorry, but I know that you all understand. I hope everyone has a good weekend! Thanks for checkin in on us.

Mother's Day

Happy Mother's Day to all the mother's out there, especially those who have lost their children. This weekend was very difficult for me, more so than I expected it to be. I decided to go to Kentucky to be with my mommy and my baby. This was the first time we had been back to Maxton's grave since the week he was buried. The grass has grown out and his things are starting to get worn. It has been 7 weeks and 1 day since my baby has been gone. It is simply not fair that he isn't here to spend the day with me. I mourn for all the things that could have been, and for the reality that is. As I have said numerous times, I know Maxton is safe and not in pain and breathing easily, but I simply miss him. He will always be my son and I will forever be a mommy. It is sad to me that I don't feel like a mother. I never knew the true joy of motherhood. My brief time as a mother was spend with the consuming fear that my child would be taken from me and my only real act as a mother was to tell them to let him go and not put him through more pain. As I listened to speeches from mothers talking about what motherhood is like, I thought " I never did any of that". I think reality of all the things I am missing out on is truly finally starting to sink in. This time next year, I will still likely only have Maxton. When will I get to enjoy motherhood. I miss him so much and most days I am "okay". Most likely, when you are reading this, I am "okay". "Okay" is relatively speaking. I will never be who I used to be and those expecting that person will have to get over it. But, I think I will be "okay". Today was just especially difficult and unless you have been there or are there, then you can't understand. I hope that you never will understand. And, sorry, but if you aren't there or have never been there, then I probably won't want to talk about it with you. I know that you all love me and care, but it is just easier to talk to someone who truly does understand. If I need you, I will call you. :-)

Projects Galore!

Finally, my bracelets have come in!!! I think I said I would be selling them for $5 dollars before, but I have since decided on $3!!! The money will be used to fund Maxton's Memorable Moments. I have redisgned what will be sent, so click on the blue butterfly in the top right corner to check it out! Thanks.

I am also going to be working with Parker Reese Foundation. Parker would have been 3 years old today, so please keep her fantastic parents, Ashley and Jessica in your thoughts today. HAPPY BIRTHDAY PARKER!!! Currently, Parker Reese Foundation has a fundraising project going now as well. They are asking for $16 which will sponsor a night at their house for a CDH family. I know several families who have stayed at Parker's House. This home is near Duke and lets families of CDH babies stay there for free for initial care and all follow up appointments. The Foundation also does other wonderful things for CDH families and sent us a beautiful arrangement at Maxton's service. For your $16 donation, you will receive a stylish t-shirt to help make others aware of CDH and it's devastating effects on families. To order a shirt, please contact me!



The last project to mention is letters for CDH. We are all going to be mailing our blue envelopes on July 15th to Ellen Show. We will also be sending emails to Oprah. For more information on this, click on the blue envelope in the right corner of the page. :-) Thanks guys. I know I ask alot, but this can be your way to help out a very worthy cause.

2 months!

It's so hard to believe that my little man would be two months old today! I miss him so much. I've grown up so much over the past 2 months. I wonder what Maxton would look like today. What color would his eyes be? How much hair would he have? Would he find mommy and daddy as funny as we think he would? Would he have cute little baby giggle? I am sure he would. I am sure that he is up in heaven entertaining everyone with his cute little antics and spitfire personality. It makes me want to have a "day pass" to heaven just to watch him and all his new friends play. 2 months old.... it really feels like yesterday that I was in labor with him. I was so excited to meet him, yet terrified that I would be here two months later with only memories. I never knew I could love this much. Being a mom is different then I thought. As mother's day approaches it seems surreal... I am a mother, yet never truly got to experience motherhood. I changed his diaper a couple of times... got to see him open his eyes only twice...really my only act of true motherhood was letting him go. I made the hardest choice any mother truly has to make. Actually I wasn't really given much of a choice, anyone could have seen it was time. I just miss him. Today is a bittersweet day. I am not sad, despite the general tone of this post. I am reflective. I am celebrating my son, my two month old son! No matter where he lives, he will always be mine. My baby, my sweet little man. Happy 2 month old birthday sweetie! Mommy loves you and misses you...

Maxton's Memorable Moments

After a few weeks of planning and starting to get the project going, I have made Maxton's Memorable Moments it's very own blog. I am very excited about this project and it has been very therapeutic for me. I hope that the families that it can help will be touched by Max's story and also be able to remember their beautiful angel whenever they look at it. :-) I added a link on the right side of this page (see the pretty butterfly at the top) to the blog for MMM. Anyways, I just wanted to thank everyone for their support. I have received great feedback on this project and look forward to helping many families in the future. I also have received good feedback on the book and am working on trying to find a way to publish it. Not sure if it will happen anytime in the near future or not, but I am hoping so!

My CDH family

Hey everyone. Things are going okay here. I have my good days and my bad days, but am managing. It is weird how life seems to go on even in the midst of such tragic events. I miss my baby everyday and think of him. I wish that he could be here with me. I wish I were still at the hospital seeing him and preparing to bring him home, but I still believe that all of this happened for a reason and am at peace with the fact that Maxton likely would not have had a very good quality of life, despite how awesome I know I would have tried to make it. :-) Anyways, this post is to give all my non CDH friends some people to add to their prayer lists- all of these blogs are on the side, I am just to lazy to link them here. :-)

In the hospital:
Ruby- on ECMO, needs many prayers that she will stabilize soon!
Carter A- was born earlier this week, having some big ups and downs. ECMO has been mentioned but not utilized as of last update.
Jaime- this little guy is a few weeks old and having his repair surgery TODAY! Please pray extra hard for Jaime, who also has hemophilia and possibly a skin disorder.
Sofie- Sweet Sofie had reherniated and has had another repair. Hopefully, this will stick, at it was a more invasive procedure than the rest. She is doing well in recovering. Sofie is 1 year old.
Jon- Jon was born a couple of weeks ago and is doing well. Has had his repair surgery and was able to be held by his parents recently!
Rory- Rory was born in Feb. at Vanderbilt. I met his family while there with Maxton. Rory is improving and will hopefully be making the journey home here soon! Pray that he continues to do well!!!
Jacob - Jacob is another baby I met while at Vanderbilt. He was born in Jan. and will also hopefully be making the journey home too! His family is awesome and I know they can't wait to have him with them.

Recently went home:
YAY!!! Kayla and Charlie were both discharged this week from the same hospital. :-) I know their parents are so happy to have them there and I am very happy for them.

Expecting:
Avery- due here in a couple of weeks. Those last few weeks were super hard for me, so please pray for her family!
Kamryn and Brooke- the twins are due here in June, though the may be early since they are twins! :-) Kamryn has CDH. Please pray for her awesome family.
Giavanna- also due in June!
James- also due in June in the UK!
Ireland- I think is due in August. Her family recently found out about the diagnosis and her mom seems like such a trooper. They have a hard road as well trying to learn all about CDH.

Thanks guys! There are alot of CDH babies due soon and alot still in the hospital. These families are all awesome and each has their unique struggles. It amazes me how little is truly known about CDH. Spread the word!!!

Children's Book

So, it has been suggested by about 10-15 people that I need to write a book, more specifically a Children's book. I decided yesterday when my nurse at work said it, it was clearly God reminding me that this was something I needed to do. I saw down this morning and in about 20 minutes (no joke- god is so good) came up with this. Seeing as how Max is my only child, I am needing suggestions from those with children, if the content makes sense to a child or would be too scary. Let me know... and please don't plagerize my work or I will come after you. hehe. :-)

"Baby Maxton earns his Angel Wings"

The day baby Maxton was born, he knew he would have to fight.
Because some things inside of him were not working right.
But Maxton was a warrior, right from the start.
His mommy and daddy were so proud of how hard he fought.
He would fight and fight his illness with the help of his friends
Who were angels in heaven watching out for him
There were Ryann, (another angel- waiting permission), Addison, and many, many more
With their special help, Maxton tried to win his war
But his illness was too strong and tough for him to beat
And God decided it was time for he and his angel friends to meet.
Mommy and Daddy and many others cried
The day that sweet Maxton left their side
But they know that Maxton earned his angel wings
And now he soars above with the angels and sings
He's watching out for family, for friends, and for you
And making sure we're safe in all that we do
And if your dear sister, brother, or friend
Earns their angel wings too, and joins him
He and his angel friends will welcome them and play
And listen anytime you talk to them or pray
Remember they are all in heaven watching from above,
Laughing and playing, and sending down their love.

The Project- or two... :-)

Alright, so I have been talking about wanting to do something for CDH families with angels. (and maybe just CDH families in general, but right now I only have enough money to focus on angels) Thanks to David's cousin Ashley for giving me this idea. She sent us a beautiful painting as a memorial for Maxton. Anyways, I wanted to do the same for some of my Angel friends. I have already sent out a few and have a few more ready to go out soon. (like when i get to the post office to send them and stop being lazy :-) ). So here is a picture of one of the ones I have done... Some are picture frames and some are on canvas. I forgot to take a picture of the canvas ones before sending them.. but you get the idea. :-)



I am planning to order turquoise bracelets with Max's name on them to raise CDH awareness and to sell for $5 to help fund this project. The more I sell, the more people I can send these too. I would really like to send them to all CDH families in the future! My project is titled: Maxton's Memorable Moments. The painting has been very therapeutic for me and I feel it is a way to keep Maxton with me always (not that I have problems with that, but you know. hehe) So, if you are interested in donating to this fund by getting a bracelet let me know. I am trying to gauge about how many bracelets to get. It costs me about $7.50 to do the project, so by buying 3 bracelets you will be funding two paintings! (that includes me mailing the person their project). All the future ones will be on canvas. Email me at ashleynaye@aol.com if you are interested in this.

Also, some of you may already know, but there is a new project being started to raise CDH awareness. (if you click on the blue envelope in the top right corner you can read more about it/get updates) I vaguely mentioned it on my last post. Basically, it involves mailing blue envelopes to several different places in hopes of getting on a TV show to raise CDH awareness, or having more articles done, etc. I am planning to buy a bunch of blue envelopes (they come in packs of 100) and will work on getting anyone who wants to participate some envelopes if you need them. Just think for about $10 you could mail 20-30 envelopes out! If you don't want to take time to mail the envelopes but would like to help by sending me $10 to mail yours for you, just email me that as well! :-)

Much love guys!
Ashley

A Whole Month

Tonight at 11:56pm it will have been one month since Maxton passed away. This is so crazy for me to think about. It seems like yesterday, but a lifetime ago. My heart aches for myself. I know that Maxton is in heaven playing with his new friends, but I am left here. I should be rejoicing that he is with God. I mean, that's my goal. To live my life so that I can be with God one day. Maxton is lucky. He isn't in pain and is certainly enjoying himself there. I cannot begin to imagine what heaven is like. I am so curious now. More curious than I have ever been. I am sure is getting into mischief and "flirting" with Addison, Ava, and Ryann and buddying up wiht Joseph and Kaden. I can only imagine the fun they are having. In a way, I am jealous. I wish I could be care free like they are.

The past few days have been a little rough for me. I just miss him and wish he could be here. I was thinking about the upcoming year and all the things Max will miss. I wonder if he is heaven thinking of all things I am missing up there because I am stuck down here. :-) It seems like every month there is soemthing that will make me think of him. May- mother's day; June- father's day/ conceived; July- found out we were pregnant, my birthday; October- diagnosed/Halloween; November- Thanksgiving; December- david's birthday/christmas... it just goes on. Not to mention every 3rd of the month i will think about how old he would be; every tuesday i think about the tuesday he was born; every saturday i think about when he dies; every 21st i think about when he died... it's crazy!!! That is alot of thinking and "anniversaries".

There has been some talk of me stopping following other blogs because it is too heartbreaking. I CANNOT do that. The other families are a part of my family to me. It's my new CDH family and I won't stop reading. I rejoice with each successful, positive thing. And my heart breaks with each family facing new struggles or the loss of their child. For those of you who arent CDH families, just because your baby lives, doesn't mean that things are all peachy. These babies often have many struggles to continue to overcome.

When I read about Kaden today I was pissed! I am so angry that someone else is where I was a month ago. How many more will their be! It is simply not fair and I am sick of it! 50% survival rate... that is ridiculous! In fact, all the babies that I have followed recently seem to be passing away! It makes me so ANGRY!!!! Kellie, Carter's mom, has created a blog. I encourage everyone to check it out. It is a new idea to spead awareness.

www.lettersforcdh.blogspot.com

Kaden Alex Kuehl

It is with a very heavy, sad heart that I wanted to inform you all that Kaden passed away yesterday. Please continue to pray for Kristi and Craig on the road this jounrey has taken them. Pray for peace and understanding and healing. I understand far too well what they are going through and it is so difficult to imagine another family suffering from this stupid defect! I was so angry this morning when I read the news. Please also spread awareness in Kaden's memory!!!

I Will Praise You in This Storm

The day after I found out Max was sick I was thinking about it the whole way to work... why me, what are we gonna do, what if he doesn't make it, this isn't fair... all of those things were running in mind during that car ride. Then, this song came on the radio. I immediately burst into tears. Why is it that we tend to forget to praise God when we are going through the "rough patches". We pray alot, but forget to praise... Everytime I hear this song I think of my sweet baby boy.. and the line that says "The God that gives and takes away". God is merciful. I've said this before and may have written it on here.. probably have, but God didn't have to give me Max. Sure, it hurts right now, and some days I am plain pissed off about, but in the end.. God didn't have to give me Max, but he did. Would I ever change that? NO WAY!!! I am so grateful for those 9 months and 18 days... God gave me a new reason to praise him, Max. Sure I miss him and am sad that he was taken away, but that doesn't mean I shouldn't be praising. In fact, it makes me wanna praise God more than before... what a precious gift I was given, the most perfect gift. I wish I could tell you that the days are getting easier, but they aren't. Every day I wake up and he is the first thing I think about, and then I praise God. :-)
"Praise you in this storm"
I was sure by now
That You would have reached down
And wiped our tears away
stepped in and saved the day
but once again, I say "Amen,"
and its still raining

As the thunder rolls
I barely hear you whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God that gives
And takes away
I'll Praise you in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in your hand
You never left my side
And though my heart is torn
I will Praise You in this storm

I remember when
I stumbled in the wind
You herd my cry
You raised me up again
My strength is almost gone
How can i carry on If I can't Find you

Pampered

I figured it had been long enought since I had pampered myself so today I went to get a haircut. The last time I had my hair done was on July 3rd, later that night we found I was expecting Max. I felt bad because I had my hair highlighted that day and didn't think I should've done that since I was pregnant (of course, I didn't know I was at the time) So it was definately time. The sad part is that David didn't even notice... men... :-)





I also went and got a pedicure today. My mother in law had given me a gift card for one on my birthday, July 6th, but I had been afraid to use it because I didn't want to hurt the baby. Almost comical now. :-) Anyways, now I have cute little purpley/pink toes. :-)

Today has been good. David and I went out to dinner tonight at Gerst Haus and then went out for dessert at Cracker Barrel. :-) I just didn't feel like coming home... I was finally able to get a good nights rest last night. Hopefully I will be able to tonight as well. Thanks for checkin in on us!

Work

I have been back at work for two days now. It has gone pretty good. I've seen a few of my consumers (or clients) and none have brought up Maxton. I brought it up with one of them because it felt like the big "elephant" in the room, but this is someone I have worked with for over 4 years now.. so it makes sense to talk to her. She didn't push me for information and now she knows about CDH! I had a really rough night last night and simply could not fall asleep. I am hoping for a better night tonight, otherwise I may need to seek out some medicine to help me sleep. I think the reality of everything is finally starting to set in. Being a psych major and working in that type of position for 4 years, I am now going to psychoanalyze myself. :-) I think that I was busy "planning" for Max since last July. In October, we found he was sick, but I still planned for his birth, his nursey, his care,etc. Then I had to plan his funeral, then the balloon release... and now... now, I am out of planning for him. I do intend on doing some fundraisers, but there is no more planning. No more searching the internet for baby furniture (we never bought any), no more obsessively trying to figure out which CDH spectrum he would be on, no more anticipation for his arrival and care. Sometimes I forget that it is "over". I hold my belly and wait for him to kick, but he isn't there and then I remember that he is gone. (the epidural was so good, i forgot i gave birth, hehe). I am doing okay, just typing what goes through my mind 1500 times a day.

Please continue to pray for Kaden, Ruby, Jon, and Jaime.. all recently born and fighting CDH.

Please pray for sweet little Sofie, who has reherniated for the 3rd time. She is one and super cute!! Max was due on Sofie's first birthday.

Also, please pray for Ireland and James' family as they recently found out their child will have the CDH fight as well. There are also several other babies due soon- Avery, Kamryn... sorry if I missed anyone!!! Thanks for checkin in.

Unbelieveable

Today I had my 6 week checkup with my OB doctor. In July when I found out I was pregnant I didn't have an OB here, so I started to go to one associated with Baptist hospital. When Max was diagnosed with CDH in Oct I had to switch to a Vanderbilt doctor. Many of you who have followed the blog all along know my distaste with Vanderbilt. In fact, I was telling Marion yesterday that I was suprised my doctor had not called to make sure I was doing okay. I went in the day after Max's death to talk to them about how to stop my breastmilk, but only met with a RN. Anyways, today was rough because there were pregnant women everywhere. Most of the ones who weren't pregnant had small babies with, who I assumed were also there for their 6 week check up. :-( It was sad because I wanted my 6 week old with me too! Anyways, then I get to go back and see the doctor and the doctor has the audacity to come in and say "Good to see you, how is the baby doing?"... I just looked at stared at him and said.. well, he passed away. Then he asked what happened. I am thinking to myself" does he even remember that the baby has CDH? or should I start with that". I just started with what happened the last day, but I CANNOT believe that he did not look at my chart and notice. HE tried to pretend like it was not on my chart, but I know it was. My old OB, who I only saw 4 times sent me a sympathy card! If she found out and she is not even associated with Vanderbilt, then I feel like this guy should have known. I mean, he is in a large practice, so I didn't see everytime and he didn't deliver me, but it is still unexcusable! At the end of the appt, which went well by the way, the doctor said that if I planned to go back to the previous OB that was okay... I was thinking, why because if your doctor was too negligent to notice that your baby had died yo uwould switch doctors too. Yes, Dr. B, I will be going back to my OLD ob. (Vanderbilt hospital care- great; clinic care- this is typical).

On a much happier, not crazy, note- I met with Marion (Addison's mom) yesterday in Chattanooga. I felt like I had known her forever. It was very nice to talk to someone that is where I am. Addison passed about a week before Max, so we are kinda in the same place with our grief, I think. It was very nice and I hope to see her again soon. She also sent me this really nice cross ornament in the mail! Thanks Marion!!!! :-)

I am planning to go back to work on Thursday, so I will be sure to let everyone know how that goes. Please keep Ava Daher's family (Lisa and Rich) in your prayers as their daughter was born sleeping yesterday. I am so very sad for them.. also please keep Kaden and his family in your prayers. He seems to be holding his own after coming off of ECMO! Go Kaden.

A Place Where Children Are

This was what we had in handouts from Maxton's service. We picked it, but I didn't remember any of it when I was rereading it today (which is funny because David picked a different one and I said no because this one talks about music in it.) Anyways, I thought I would share it...

What kind of place would heaven be
with all its streets of gold,
if all the souls that dwell up there
like yours and mine, were old?
How strange would heaven's music sound
when harps begin to ring.
If children were not gathered 'round
To help the angels sing.
The children that God sends to us
Are only just a loan,
He knows we need their sunshine
To make the house a home.
We need the inspiration of
A baby's blessed smile.
He doesn't say they've come to stay
Just lends them for a while.
Sometimes it takes them years to do
The work for which they come.
Sometimes in just a month or two
Our Father calls them home.
I like to think some souls up there
Bear not one sinful scar.
I love to think of heaven as
A place where children are.



How true is that? What kind of place would heaven be if everyone were old. I can't imagine a place where everyone is old. I am sad that mine had to be one of the children but I guess maybe it is an honor. An honor that God wanted Max to be one of the fun, young souls in heaven. I find comfort in that...and just felt the need to share.

Happy Easter!

I just wanted to say Happy Easter to everyone. God is so good... I know that he is with me everyday on this difficult journey and I can feel his presence. I just wanted to take a moment to thank everyone for their gifts, prayers, cards, love, and anything else you have done for our family. We are so thankful and can feel everyones love around us through God. My grandma was able to decorate Maxton's grave for Easter since I do not live there to do so.... Thanks Grandma!



please continue to pay for baby Kaden and his family. They are doing a trial run off of ECMO today and I am sure Kaden will do just great. It is amazing just how nervous I am for them. They have become some of my best friends even though we have not met in person. Please just think of them today as this is a big hurdle to cross for little Kaden!

New Layout

So I changed the layout last night. (when I was up til like 3 am because I couldn't sleep) I am an idiot and deleted everything on the right side of the blog.. all my links and everything, so if you would like to be listed on here let me know. I tried to get everyone that I used to have but may have missed someone. Just let me know. To explain the blog, I had read somewhere that CDH angels/babies were like butterflies. The flutter by but leave a lasting impression. I found this layout online and thought it looked like a person giving up their butterfly, not to mention, the butterfly was blue. It seemed perfect. At Maxton's funeral we had some blue butterflies in the flower arrangements. We also had a blue butterfly on his casket (see picture below), so thus, this seemed like the perfect layout. (the only problem is that if I change it I think it will delete everything again, so hopefully you all like it because I think it will stay!)

I have been working on a few CDH projects and am not quite ready to disclose them, but please pray for them. I am super excited about each one and can't wait to get them into full swing.

David and I are doing pretty good. We both miss Max and have moments where we are very angry and confused, but also have moments of peace about it. I would say right now the moments of peace are definately outweighing the confusion, which is good. I've been told the "reality" of it all will likely hit in a few months, so I am glad for the days of peace now. This weekend my parents are coming to take some of the baby things back home with them as we don't really have room to store it all here... not to mention alot of it makes me sad (like the stroller and playard that are permanent fixtures in our living room right now!). I am not ready to go through and clean out drawers or anything yet, so that stuff will be staying. Hopefully this emotions will be "okay" this weekend as we begin to pack up things. I am excited to see my parents though and love it when they come to visit.. even though my mom was here for 3 weeks straight just 3 weeks ago! That's right.. little man has been gone for 3 weeks.

Maxton, buddy, we love you and miss you and we know you are watching out for us and guiding us in this new path our lives have taken us. We wish you were here to take our lives journey with us, but you will always be in our hearts. Much love sweetie...

19 days

Maxton has now been gone for longer than he was here. I miss my little man and was re-reading part of his journey. I am so sad that he was taken from me but am so thankful to have received the gift of him in the first place. I've had people tell me they wish they could take it all away, but I certainly don't wish that. If I had to do it over, the only thing I would change is the outcome. It's probably hard for people to understand, but I am not sure that I would change Max being diagnosed with CDH. I have so many new people in my life because of it that it is hard to wish that it never happened. I learned so Max from Max in his 18 days, many of it I wouldn't have learned if he didn't have CDH. You may think I am crazy because CDH is what took him from me, but it also brought me so much. So, I think the only thing I would change is still having him here with me. ( catch me on a bad day and I will likely have another, more vulgar opinion of CDH!) :-) Really CDH does suck... and I certainly wouldn't wish it on anyone else. I guess I am just trying to say that I am so very thankful of the strangers that are now like family. I know I have crossed paths with so many people on this journey that I would have never met were it for Max. With the birth of one son, we gained a family. Max, though no longer here, will always be a part of this larger family. I know that when some CDH parents think of their children, then think of the others lost, and the others who survived. I know when I think of Max I think about the other stories I have read. The people whose lives have been changed forever because of this horrible birth defect. The lessons that this has all taught me will stay with me forever, and unless you have lost a child you can't really understand. I would never want to take back what happened, but if I could change the ending that certainly would be nice. :-) It's hard to believe he has been gone for 19 days...

OK

I am doing okay. I just wanted everyone to know that. Today has been a better day for me. I suppose there will always be "good" days and "bad" days. Today I went to my office and talked with my boss some about when I am coming back. That should be fun. :-) (read sarcasm) I really wanted to post tonight to ask for prayers for Kaden. He is on ECMO and is having some problems getting his lungs to function properly. His parents are very worried and I remember being right there a few days after Max was born. CDH is such an emotional journey, but Kristi and Craig have been SOOO supportive of me through my whole journey and even find time to support me now when they are in the "thick" of theirs. Please pray for them and their sweet son. When I first saw his picture he reminded me of Max... we have been saying they are "brothers". I know Max is watching out for him but I just thought a few extra prayers certainly won't hurt! Thanks

Rambling On.

I am not able to sleep- again. I lay down and try to sleep but just can't get there. Too many things running through my head. I miss my baby boy. He would have been 5 weeks old tomorrow... Going into this, I knew something like this could happen. Of course, you have to believe that your baby will be in the 50% that survives, but there were days when I would think about "what if?" I am actually handling it better than I thought I would... most of the time anyways. It's just at night. At night I lay there and think.. I think about how soft he was, and how much I wanted to hold him- just pick him up from the hospital bed and run away with him. I think about the only time I really saw his eyes and how hard he was tryign to focus on me but couldn't. I think about the only time I heard him cry and really wish that he hadn't cried then. I think about all the dreams I had for him, like playing games with him. And how I wanted to bake cookies with him. And read to him. And how I wanted him to love music like me. And love to work out like David. We had so many plans for Max. I know that Max is in a better place and I know that he is at peace but I just can't let those plans go. I have so many images from him in the hospital that play through my mind... I want to see the good images, not the bad ones, but for some reason it's like my mind is on replay of that last day... over and over. Whenever we bring up Max (which is often) we talk about how he is heaven and how he is safe, but I can't help but think... but I wanted him here. I needed him here. I think about how selfish that is for me to say. I went to dinner with some other CDH moms last night (their kids are at Vandy now)and we were talking about how we just wanted our kids to have a good quality of life. And I think that maybe that is why Maxton had to go, because he just wouldn't have been able to overcome everything and might not have had a good quality of life because of it all...And sometimes that does make it easier to think about. I didn't make him stay here only to have a bad life... but in my mind, his life would have been great because I would have made it that way for him. And it is sooo hard to get those dreams for him out of my head. I wonder, when I do have children again, what will my dreams be for them? Will I want to do all the things I had dreamed for Max, or will I not, because those are Max's dreams and I don't want to replace him. It's just hard... I had planned for a baby since July. Sure, i found out in August that something might be wrong.. and confirmed in October.. but I still let myself have dreams for my baby, what mother wouldn't? It's just that the death of those dreams has been hard to take. I am not sure if this is making sense.. I sure hope so, but it is late, and I am tired.. I just can't sleep. I wish I had my Max to hold or feed or something. I know I am going to be okay, and I know that this will get easier, it's just late at night... if only we could skip night time. :-)

KADEN ALEX KUEHL

Kaden was born this morning at UCSF and has been stabilized. I just wanted to remind everyone to pray for him and his family... Isn't he cute!! I know Maxton and his angel friends are helping watch out for Kaden and are going to help him fight CDH!

Some Thoughts

First of all, I wanted to say thanks to David's cousin, Ashley, for making us this beautiful memorial for Maxton. We LOVE it!!! It is so unique and beautiful. Ashley is very talented and does all kinds of crafty things- please visit her website www.ashleyhackshaw.com or www.lilblueboo.blogspot.com. :-) Thanks Ashley!!!

Secondly, I wanted to share something that has been on my heart. David and I have decided to start a CDH project of our own. I am not sure of what all we plan to do, but I know what we plan to start with. We plan to offer unique gifts to other CDH families. We received so many wonderful keepsakes to help us remember Maxton (like we would every forget!) that we want to share this with other Angel's families. I have a few things in mind but don't want to disclose too much as I want it to be a suprise when they get their gifts in the mail. So many people gave us monetary donations at Maxton's funeral that we have set some of that money aside for this project. I am very excited about it and have decided to call it "Maxton's Memorable Moments". This came to me in a dream last night- the name, that is. Anyways, just wanted to share what has been on my heart. Hope all is well with everyone.

Also- please pray for Kristi, Craig and baby Kaden. Kaden will be here tomorrow morning via c-section. I am sure Kristi and Craig are very anxious and could use everyone's prayers as they begin their CDH roller coaster journey!!! Kaden's blog is located to the right if you would like to check it out!

In Memory of Maxton

Grab the Kleenex and watch this tribute to my sweet baby.

Make an on-line slide show at www.OneTrueMedia.com

Turquoise Pics!

Make video montages at www.OneTrueMedia.com

I am still waiting on some other pictures from KY. The last picture is from my mother's workplace, Union Co. Methodist Hospital. The two pictures before that are from my cousin Kristi's office. Thanks for participating and spreading the word about CDH!!!!

Balloon Release!

Tonight's Balloon Release was amazing. Thanks to everyone who participated. There were releases in Nashville, TN- Sturgis, KY-Frankfort, KY- Louisville, KY- Pawhuska, OK- and some CDH families in Cleveland and California also released balloons. We had about 50 people at the balloon release in Nashville and about 30 at the one in Sturgis. This is a testament to how many lives Maxton touched! At the one in Nashville a stranger came up to see what was going on, so I shared Max's story with her and educated her on CDH. :-) We released 18 turquoise balloons with Maxton's name on them for the 18 days he was here with us. We also released some nice white balloons for all the other CDH babies, both heavenly and earthly. My friend Racheal took a bunch of pictures that hopefully I will get into a slide show, but for now here are few!

Today Maxton would have been 4 weeks old. It's crazy to think that just 4 weeks ago I was at the hospital about to have a baby and now it has been 10 days since he has been gone. He is certainly missed by many and I know he will never be forgotten!