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!!!!