Happy Easter Deklyn!

The past few days have been tough for me. Dealing with how to move on has been tough, some days are easier than others which I guess is to be expected. I will always miss my son, and I can reminded myself that he is happy, healthy and I will see him again one day over and over again and sometimes that just isn't good enough. I want to see him now. I miss hearing him click his tongue and smack his lips, I miss the way he'd turn his head the opposite way when I was going to give him a kiss, I miss the way he'd squeeze my finger in his little hand, I miss making him smile and so many other things. I would give anything just to play with him on the floor one more time. I am so glad that Sheridan and I decided to hold him at night the day before he passed away, even though we had to prop him up with pillows and blankets to make sure he was comfy... I am so glad I have that last memory have being close to him and he was happy to be close to me.

We will be celebrating Easter this weekend, this would have been Deklyn's 2nd Easter. Last year I begged Sheridan to let me buy Deklyn a cute little Easter basket. He thought it was a silly thing to buy but he let me any ways. I wish so badly that I could fill that basket this weekend and give it to Deklyn. Even though he wouldn't have really cared much... its just those little things that you can't do that feel so hard to deal with. I wonder how Deklyn will be experiencing Easter in heaven... In a strange way, Easter has been helping me with dealing with my sadness .. I know God understands my pain. He had to watch his son die too and in a way that comforts me.

In the hospital I tried my very best to make each holiday and other important days as special as I could and as normal as I could. We can still celebrate these days, but when you have a child it just seems different. You want to make those days that much more special for them so that they have awesome memories of these days with you. Now that Deklyn's not here, a holiday almost feels like a hole in my heart. A day where last year, I did everything I could to make special for Deklyn. A day where I tried to make it memorable and start a tradition. This year... we will just be going to our gatherings, watch the other kids having fun making memories and carrying on traditions. I try not be sad, because I know he wouldn't want to come back to earth if he could.

We had one gathering already, and something that was super special was our family brought a bouquet of balloons in memory of Deklyn. I loved it! I think that would be a cool thing to carry though with all our holidays and maybe another way we can keep his memory alive for the kids that are yet to come into the family and the young ones that already are.

I didn't mean this post to end up being a sad one. I guess, at least for me it seems like as time goes on things are getting harder. How do you move on from the death of a child? I don't think you can. I'm supposed to start work again next week.. I was never going to work again, or at least not for a long time. I was going to take care of Deklyn and siblings that followed at home. That has been my dream, and it still is. I guess I'll just have to revise my dream a little.

Enjoy your Easter. Have fun with your families! Have fun with your kids and remember not to take them for granted. They can be taken from you faster than you know. Oh! I almost forgot! In my last post I mentioned I was getting something done for Deklyn and I would be able to show it in my next post! Well about a week and a half ago I got a tattoo. Its more so one that represents my family but I did it especially for Deklyn! The little bird is Deklyn and I will add more birds as we add more kids to the family.
Happy Easter Everyone! Take this time to remember the reason why we celebrate Easter. I know for myself I feel so lucky to have grown up in a community where God is just talked about so openly. Not everyone has that. I encourage you to reach out to those around you. There are more people hurting than you realize, especially in these times.
 Show the love of God, I know you won't be sorry that you did.

We Are SO Blessed!

This has been an unbelievable amazing and hard 2 and a 1/2 weeks. You truly never know how it would be for you when a child of yours passes away. In the hospital I met a few families who lost their child and I just remember feeling so incredibly bad for them, but also thinking it must be some kind of a relief that you don't have to deal with the hospital life any more. I never thought I would be the one on the other end of that stick, I will tell you, I do not feel relieved that I don't have to deal with hospital stuff any more, I would have done it for the rest of my life for Deklyn, but I can also tell you I feel relieved for Deklyn. He had such a hard life compared to other babies, he didn't realized it but he did and feel relieved for him that he doesn't have to deal with all that any more. I can honestly tell you, I am ok. Of course I miss him, of course I wish I could have him with him but I made a decision shortly after he passed away. I don't want to be sad for the rest of my life. I decided every time I have a thought that makes me sad whether it starts by seeing a child or seeing a picture of Deklyn, I will try my best to replace that thought with how happy he must be right now. How he is completely healed and in the most amazing place that we just can't even imagine how awesome it is. So far I think I am doing ok with this! I know I will be sad, I know this is going to be incredible hard especially as holidays come up and family gatherings but like I said, I just don't want to be sad for the rest of my life.

 I want to keep Deklyn's memory alive, I don't want to forget about him and I don't want our families to forget about him. I would love if Deklyn's cousins and siblings talk about him like a regular family member! I want his future siblings to always know him as their big brother that they will get to meet one day. I'm not sure how we are going to do this in a healthy way but we will figure this all out.  Some of you have been asking me what is the best way to donate to HPP research. We are currently working on getting a foundation set up in Deklyn's name, so in a future post I will let you know how you can donate in Deklyn's name. Just another way we can keep his name alive!

After Deklyn's celebration of life, (if you missed it you can see it here) I was overwhelmed. I had just spent 14 months living in the hospital, a crazy afternoon packing up our life and then a whirlwind 2 days figuring out how to say see you later to our beautiful son. Now I was somehow supposed to magically go back to how things were before I was even pregnant. I didn't know how to do this. When things weren't going well with Deklyn, Sheridan and I decided if the worst were to happen, we were going to get away for a bit. So that's exactly what we did. 1 week after he passed away we were on our way to the Dominican. The first day there was actually pretty hard for me, it just kinda hit me that Deklyn DID pass away and that is why we are on vacation. I got really sad, but I just had to get myself out of it. I kept telling myself how happy Deklyn is right now and how he would want us to enjoy our trip, and we did! We had a great time just being together and relaxing. 

Going home I was nervous. I wasn't sure how I was going to feel going back home knowing Deklyn wouldn't be there. I was scared I was going to turn into a big crying mess, sit in Deklyns room and never come out. Well we were in for a HUGE surprise. We got home to a bunch of family in our entrance and a tour of our completely finished home! We'd been under renovations since we bought our house in December 2009, there wasn't a whole lot of big stuff that had to be done but LOTS of little stuff! Sheridan's brother really wanted to be able to do something for us, so he put it out to our church that he kinda wanted to do a home makeover thing and so many people stepped up to help! Seriously... we still can't believe our house is done! Anyone who played any part in this thank you so much! Seriously, thank you doesn't feel like enough but we are just so incredibly grateful! So many things can happen now that our house is finished. For Sheridan and I, our chance of having another child like Deklyn is 1 in 4, that risk is just to high for us. We couldn't put us, our family or another baby through this again. If we got pregnant and found out the baby had HPP we would feel so guilty because we know it can happen. So right now for us, when we are ready we want to adopt. But we needed our house to be done before we could even start that process! So now like I said, whenever we feel we are ready to start that chapter in our lives we can!  Here are just a few pictures so you can get an idea of what our new beautiful home looks like!

Kitchen! All the baseboards and casings were done for us,
the back splash and many other little things!

Living Room! Again baseboards and casings and other little things done here!

Deklyns room! His room was full of all this stuff from the hospital so family took the time
to organize and clean it up! Baseboards and casings, closet door and other little things done here!

Upstairs Bathroom! When we left this room was
totally gutted! Everything was done in this room and we are just waiting on glass for the
shower door!

Basement! The stairs were just wood before, so there is now carpet which I love! Again baseboards and casings here, doors, outlets moved to places where they should be, and more!

So much was done to our house, I probably haven't even found all things that were done! We have doors on all our closets and some rooms didn't have doors and now they all do! New cupboards were installed, some rooms needed more paint, that was done! Seriously.... our house feels like a new place! We liked our house before and now we LOVE it! So again, thank you to anyone who helped in any way! We are so incredibly blessed and all this has really helped us to start our new journey here without Deklyn. I have never felt so much love in my entire life, this is just unbelievable!

Well that's it for now! In my next post I will be able to show you something special I am getting done for Deklyn, so you have that to look forward to! Be blessed, and try to remember to be grateful for the things you do have in your life. Try not to focus on what is missing or what you wish could be different. You can decided to be happy, and that is what I'm trying to do too!

What An Amazing Life

wow... looking back it feels like we only spent maybe a month in the hospital rather than 436 days. I'd give anything to have my little boy back... even though I know he is much better off now, I would have spent the rest of my life beside his hospital bed if I had too. 

I want everyone to know Deklyn passed away very peacefully .. I wouldn't have wanted it any other way. Just that morning we had decided with the doctors and nurses that we didn't want anyone to do anything like compressions or bagging any more. We just wanted Deklyn to be comfortable, whatever that meant we weren't even sure. At this point we knew Deklyn was going to pass away, unless something miraculous happened. Deklyn had been in a crib up until the morning of February 28th, when they moved him into an adult sized hospital bed so that we could lay with him. I will forever be grateful that they did that for us. In my heart I knew we didn't have much time, we had some family in the waiting room who had been with us for a few days already at this point, so we went to go get them so they could see Deklyn. At this point the doctors came to tell us they thought we had made a good choice and it was hard to say when Deklyn would pass away, sometimes people just get a spurt of energy and make it a few more weeks or even months. This was the last thing I wanted, although it sounds crazy, you think I'd want my kid around as long as I possibly could. But you have to understand that heart ache we'd been experiencing for the last 2 week already.. He was in pain and although he still had his happy side, most of the day seemed pretty hard on him. Just the day before I had gone back to the Ronald Mcdonald house to freshen up and I got on my knees and prayed that if Deklyn wouldn't be healed on earth that Sheridan and I would both be there when Deklyn passed away and that it would be peaceful... this is exactly what we got. Our family left the room and Sheridan decided to lay beside Deklyn. I sat on the couch we had in the room and it wasn't even 3 mintues later alarms starting going. This is nothing new to us... his alarms had been going off for days already but it was always his 02 sats. I looked up and it was his heart rate... inside I knew this was it. I got up and Sheridan asked what it was this time that was going off... I honestly don't remember what I said, I heard someone call for the doctors and Sheridan and I stood beside him holding his hands.. and he was gone. 

When I imagined him passing away I thought he'd be going blue and gasping for air which we'd seen many many times. It wasn't like that at all... in fact he kept his color for much longer than I expected and his O2 sats stayed up while his heart rate dropped. I will forever be grateful for this experience.

The days that followed were a blur... we had family come to help us clean our house and put things away seeing as we had all of Deklyns stuff in the hospital and a years worth of stuff at Ronald McDonald House. Honestly it still hasn't hit me that he's gone... I never got to have him at home so other than the pile of things in his room we don't have any memory's of him in the house.. It feels strange not calling to check on him, but right now it just feels like I'm having a sleep over at home and I'll be going back soon to see him.

We had Deklyn's celebration of life service yesterday and it was absolutely beautiful. I want to thank anyone who did anything! I know so many people brought food, hospital staff brought balloons, people brought us gifts and cards, we've got meals from people so many amazing things... if you did anything at all for us please know how grateful we are! The service did get video taped so I will post it on here when I have it. But I did write a letter that I shared yesterday and I will put it here for you guys.

Deklyn. You are amazing. I don’t know anyone who had to go through the amount of junk you did and in spite of everything you showed more joy than I have ever seen in a human being. You are an amazing son, and I was so lucky to have you for the time that I did. Of course I wish it could have been much longer. I had so many dreams for you, but I now realize that those dreams weren’t even as great as the things you did accomplish in your short life. Since you have gone to heaven, I’m being told over and over how you have impacted so many people, how your life has taught people to live differently. You have done the very same for me, I realize that all the things we want in this world really don’t matter. Life is short and whats most important is what you do for God in that time. I’m glad we had the time to snuggle, to laugh and smile. To play with your all your toys and tickle you so hard you laughed. I wish I would have been able to hear your voice but I guess that’s just one more thing I have to look forward to in heaven. I am so happy for buddy, so happy that you finally get to experience life the way you were meant to. I wish you could have received your healing here on earth but I am so glad you don’t have to experience the hurt this world gives anymore. I am so glad I got to spend 14 months by your side, I would do it again in a heartbeat. You taught me so much. I had to step far outside my comfort zone almost every day I was with you and you made me a much stronger person.  I can’t believe this is where this journey has brought us. I honestly thought without a doubt I would be bringing you home, but I am so happy for you that you are in heaven, our eternal home and I have the promise of seeing you again. I bet everyone there thinks you are on crazy kid cause you just won’t stop running around and yelling and doing all the things that I wished you were able to do here.  Deklyn, you brought so much joy into my life. You gave me the gift of being a mother and that is something I will always have. I am so unbelievably proud of you, you are an amazing son and I feel so lucky that I was the one who got to take care of you for during your short 436 days of life. I can’t wait to see you again in heaven, I can only imagine all the things you are getting into and all the people you have met and are talking to. I am so happy that you are completely healed and feel only happiness.  With God we will make it through till we get to see you again, I honestly can’t imagine life without you but if I keep thinking on how many lives your life impacted and how now you are truly free I can’t help but feel happy.

This is not the end of your story, infact I think it may only be the beginning. I will make sure to continue to reach out to others using your life as a stepping stone, your short life may have only seemed like a splash in the water but I know we are going to continue to see the rippling effect from your amazing life. Deklyn, I am so proud of you… you were so happy… and to me you are the most beautiful boy I have ever seen.  I have been so amazed with you, you went through so much and still managed to click your tongue, smack your lips, smile and come up with new things to do with your mouth! I loved watching you grow and become strong, I only wish I could have done more for you. I loved how much you loved your toys. Although you couldn’t do much with them you loved looking at them and wiggling around and you just recently had started grabbing and pulling things. I will never forget your love for balloons… you would smile at them and proceed to reach out your arm so we could put the string in your hand so you could make the balloon do what you wanted it to do. I also loved how much you enjoyed books, ever since you were born you loved looking at the pages.

Even in your last days with us when you weren’t feeling good you always looked at a book when we read it to you.

You have given me more than I think most parents get from a 14 month old. I am not at all the same person I was 2 years ago. You have changed me for the better and I want you to know how much I love you and all your craziness.  I will miss you and I really don’t know how I will make it here without you but God gave me the strength to a lot of things I had to do in the past 14 months and I know he will be with me now too. We love you, we miss you and you will forever be engraved on our hearts. I promise to keep smiling, I promise to keep sharing the love of God through your story. I feel so incredibly honoured to have the tile “Deklyn’s Mommy”. I can’t wait to see you again buddy bear, but until then have fun, laugh, yell, run around and don’t get into too much trouble..  Love you forever.

I am so glad I decided to read this in front of everyone, although I am usually so strick when it comes to this stuff. I hate it when people don't look up when they are speaking to a crowd and I didn't look up.. I couldn't. I knew if I did I would cry a lot more than I had already. Sheridan also made an amazing video and you can see that here.

I want to say a HUGE thank you to all the hospital staff.... you guys are amazing! We have loved seeing the love you have for our son and are forever grateful for the love and attention you showed him. Just seeing how many of you came to the celebration was incredible. We will not forget you guys either and we promise to come by every now and then! You guys are our heros... you saved our sons life countless times and made sure we had him for as long as we did. Thank you, doesn't feel like enough... but that is all I have to offer at the moment.

A friend of ours has a blog, and she wrote up a very nice tribute to Deklyn and you can see that here.

This is all I will write for now. I want to thank you all so much for the support you have shown my family over the past 2 years and are continuing to show. This is not going to be easy.... and like I said I don't know how I am going to get through this, but I know I'm not the only that has to deal with the loss of a child. We will make it and we will be ok, but I will never forget my amazing son and everything that he has done for us and this world. Please continue to tell us how Deklyn has changed your life, it is honestly one of the biggest things getting us by right now.

Deklyn is Home

I will make a more detailed post at a later date, but I just wanted to inform all of Dekyns fans that he went to heaven in the morning of February 28th. I feel so blessed to be his mommy and I would do the last 436 days again in a heart beat. I miss you so much buddy... I can't wait to see you again.

 I plan on continuing on blogging so keep following me. Thanks for all the prayers and all the support, we need them especially in this incredibly hard time.