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!!!