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.

We Won't Stop Fighting

I think this is the most amount of posts I have ever had in a month! We've had a lot going on! This update is not a very positive one. From a doctors perceptive things are going horribly. We were just told today that as of right now there is nothing they can do for Deklyn. They are still trying to pursue other avenues to see if they can get some answers but right now things don't look promising. Please keep praying and praising God. I've often said "This has been the hardest time we've had" and every time I thought it was our last... I feel as though I've had the wind knocked right out of me and I'm fighting to catch another breath. Our son is very sick right now... at times its hard to see because when he is awake and happy he seems perfectly fine. He clicks his tongue, smiles and wiggles around... but out of no where he crashes, starts gasping for air and begins to go blue. 

Honestly, I can't take it any more. I will sit here as long as my son is in the hospital but I am so tired of watching him struggle. I know there has got to be people out there who understand where I am coming from but please listen to me... if you have a healthy child PLEASE know how lucky you are.... hold your child tight... enjoy the noise they make even if you may find it annoying at times... when your child cries in the middle of night and you find it unbearable... think of me. I would love to be in your shoes. Don't take these little things for granted... 

Now don't get me wrong, I feel incredibly blessed to have Deklyn in my life. He's one the most amazing things that has ever happened to me... but we are tired. This emotional roller coaster that we've been on for almost 2 years now has taken about 40 years off my life, or at least thats how it feels. 

Even though I may make things sound incredibly un-hopeful, we are not giving up. I will fight with all the I have even if its not much. But quite honestly, right now I feel like I would be happy for Deklyn if he passed away... I don't know how I would make it... but I would be so happy that he'd finally be whole. Finally be healthy... and finally be with Jesus. I know I'd see him again... and funny thing is, I've always been one of those people that didn't want Jesus to come back right now... I had things I wanted to do... but now, he could come right now and I'd be so glad that all this crap is over. This world sucks... and I know I haven't even seen half of it.

I am still here, I am still fighting... until Deklyn tells me he is done, I will be beside him telling him how he's been such a good son and how much I love him. Please continue to share my blog, and my son's story. Continue to pray and praise God for Deklyn's healing. We need your help... 

A Quick Update

Thank you so much everyone! The support Sheridan and I have felt this past week has been overwhelming! I know lots of people are wondering how Deklyn is doing as my last post wasn't incredibly positive. Deklyn is doing much better! By Tuesday Deklyn was acting much more like himself and since he has been doing really very well besides a few hiccups this week, nothing has been as terrible as the weekend we had experienced. 

Yesterday we experienced one of the most powerful evenings ever! Friends of ours felt like they should put on a praise night for Deklyn, just praising and worshipping God for what he has done and for Deklyn's healing. It was a very humbling experience for Sheridan and myself. We needed this so bad... as a parent seeing your child struggle so much can just become so terribly hard. So hard that you can give up on what you know is your child's as a child of God. It was a huge pick me up and seriously helped us to keep going. It was honestly so powerful and overwhelming to see the support we have. Being in the hospital all the time I know not everyone has what we have, actually hardly anyone has the support we have. So to anyone who came, anyone who prayed and praised from home or wherever you were or to all of you who have been doing this for awhile now thank you from the bottom of my heart... We need you and you are helping us to keep going.

So anyways, I just wanted to let you all know we are doing well, and Deklyn is steadily (besides a few hiccups) getting better. We just still need your prayers & support. Healing is Deklyns and we can't lose sight of that no matter what we may be facing! So Again, thank you, thank you, thank you! We have been so blessed and our God is faithful! Things are going to start moving forward and we will have our baby home soon! 

Calling All Prayer Warriors!

This is going to be one of my shorter posts. I am writing this post in hopes of recruiting more prayer warriors for Deklyn. Thursday afternoon Deklyn was rushed to ICU. Other times this has happened it only takes a day or two and we have our old Deklyn back. This time has been much different. Right now all I am going to say is that we need you all to get on your knees for us. Deklyn is in a fight for his life and we are not giving up on him. I have mentioned before that Deklyn has Pulmonary Hypertension, this is what we all believe has been the root of this problem. We spoke with the study doctor for HPP and she said his bones are not the problem any more, in fact his bones are doing amazing! His lungs are giving us a run for our money. The past few days have been the hardest in my entire life, I do not think I have ever cried so hard and so long in my life. No one, not even doctors have said that they are giving up, but we have had to talk about the possibility of death. We are not accepting this option, although as a parent this is a very hard place to be. Of course I do not want my child to die, I want him to have an amazing life and experience things every child gets to experience  But at the same time, in heaven he will not have to experience all the crap he has been going through here on earth and he has definitely had to endure more than his fair share. He is the toughest person I know. He would finally be free of all of this. I know God is working in my son, my son has a story that the world needs to hear. Please share my sons story, pass along my blog... get as many people praying as possible. In the name of Jesus my son is healed and I praise God for what he has done. The world will be amazed and in awe of what God has done for our son. Thank you all for your continued support and sharing our story with others to get as many people praying as possible and praise God for the battle has been won and the enemy has been defeated!

My brother made a video a few months back to get people to pray for Deklyn, here is a link to that if you want to share this with others please do!

It Is Well With My Soul

Well here we go....  were back to the old schedule of Sheridan only joining us for weekends... I feel extremely lucky that we did get so much time together... but I always have those thoughts in the back of my mind that most families get to see each other every day and I hate that we don't get that. Oh I know there are lots of families out there that don't get to see each other everyday but when your life is way outside the normal as it is, even the little things like eating supper together or watching a movie on your own couch feels like it would be so amazing to be able to do that again. Right now, life just honestly feels so hard. I'm sitting beside Deklyn right now and yes I feel so blessed to have him in my life and just looking at him makes me happy but that doesn't change how incredibly hard our situation is.

Deklyn is doing really well, the past few days he's been needing a little more oxygen than his normal which always has me a little on edge and wondering what is going to happen now but he's happy and his normal Deklyn self! Were getting closer to the 7 kg mark, when he is there I've been told they will try him on the portable vent so I'm just waiting on that! I'm so excited to just get to walk him down the hall in the hospital and I'm already dreaming of this summer! I'm hoping we will be home by summer but even if were not I'm sure we'll be taking him on lots of outings and I hope to take him to the zoo and things like that! I know it will be an adjustment and Deklyn may not even like these things are first. He has been in a hospital for nearly 14 months now, going outside would be kind of a shock I would think! So I'm preparing myself for that but I am still just so excited.

Something thats really hard for us right now is thinking about our vehicle situation. We have a few calls to make just to be sure but right now its sounds like there is no way our vehicle will work for Deklyn when we are able to start taking him out. We want to be prepared for that day but we also want to believe we won't need a new vehicle. We would hate for the day to come when they say "ok guys! Take Deklyn anywhere you like for the day!" and we are not able too.. that would just suck! But we are taking it one day at a time... honestly we LOVE the vehicle we have right now and its kinda hard to say goodbye to it but we obviously love our son and want to take him out way more than we love our vehicle, and like I said before when your life is completely un-normal, when the things in your life that feel normal get taken from you it sucks! Its just honestly so hard for me to know where I need to just put my complete faith in what I'm believing for or when we need to just do what would look like the smart thing. I'm growing in all of this, its just by no means easy.

This past month has been an extremely frustrating one for us... I'm sure there are some of you who can relate to us in the way of believing and trusting God for something to happen. No one likes waiting and it can get pretty frustrating. You feel like the right timing is now, but in Gods eyes is it? Maybe he's waiting for that perfect moment... maybe if  Deklyn is completely healed now it won't effect as many people as it would if it happened later... Honestly I don't know. I do know that God is good, God is loving, God wants the very best for us and so many other things. Someday's I have laid in bed and just told God I just don't know what to pray any more. I feel like I've done all I can and all I know how to do. I guess one day when I get to heaven I'll get to ask him why, I just wish until then I could learn to turn my brain off and just enjoy what I have rather than be sad over the things I don't have.

I haven't been able to go to our church for quite sometime but they have the services online which is really nice! This last sunday they had a guest speaker out, and although the situation she went through is completely different than ours she really spoke to me... everything she said I already knew but sometimes you just need a refresher... here is a link to the service.It really reminded me that even though things in my life might not be going well, things can still be well with my soul. It also reminded me not to be so stuck in my situation... when I get to heaven I want God to be able to say to me he is happy with what I did with my life. I have an incredible opportunity here in the hospital... there are so many hurting people, so many people who don't know Jesus and don't know that he loves them... God did not give us this situation but he sure can use it and I don't want to be so stuck in my own sadness that I'm not ready when God tells me to go to talk to someone, or can't hear him when he tells me to do something for someone.

I really want to encourage you to listen to the message if you haven't... its really good for anyone, going through a situation or not! And like always I want to thank each and every one of you for taking the time to pray for us and our little boy. We've had a very hard year but we are standing in faith and God will bring us through. I felt it on my heart for quite sometime to have a big group pray over Deklyn and hopefully soon we are going to be doing this. Were going to have some family here and just spend time in prayer thanking God for Deklyn's healing. Right now we can not do this because the hospital has visitor restrictions but as soon as this is off were going to plan for a day. Those of you praying for us, please keep this day in your prayers. I don't know what God has planned, but we are believing for great things!

Count it all Joy

Sheridan and I got away for a week and went down to California, we had a wonderful time! While I missed my baby boy, quite honestly I am used to leaving him. I've done it every day since the day he was born. A week is a bit of a different story, although I did miss him like crazy I refused to let that consume my thoughts. I don't know when we'll have the chance again to get away just the 2 of us again so I wanted to soak it in and have fun! I've been to California a few times but this was my first time to Disneyland and California Adventure. Wow, it was just so much fun! 

Deklyn had a great week spending time with this Grandma's and nurses but the day we were heading home Deklyn was not himself, and when we got in at 3:30 in the morning to say a quick hi before we went to bed he was not looking so good. He was needing lots of oxygen with no clear reason why. The following days were the same with him needing lots of oxygen and extremely irritable. This was frustrating because exactly a month ago we were dealing with this exact issue and we were sent back to ICU. I was terrified and heart broken that we were in the same predicament as last time. Luckily though every day since has SLOWLY been getting better. He's still not exactly where I would like him but he's not doing as bad as he was. 

I felt like we were running in circles... and to top it all off we were being faced with some decisions we did and still don't want to make. Decisions for Deklyns future. We need to start thinking about taking him home, which is exciting but at the same time there are things we need to be able to take him home how he is now. One of the things needed how he is now is a new vehicle... Sheridan and I just bought a new vehicle in hopes that it would suit Deklyns needs but as far as we know right now it doesn't. Sheridan and I are standing in faith right now that we will not need a different vehicle, that either they will come up with a way for it to work in our vehicle or, as always, that he will be completely healed. Thanks for praying with us on this!

Joy.... this word has been on my heart for a few weeks now. Although Sheridan and I did get away for a little while and that was very nice, we've still been stressed beyond what anyone with healthy kids can imagine. Some days I've felt like the load on my heart could make it completely stop, but I know that is my fault. I've had trouble giving completely everything to God. I worry and stress about the future when I need to let tomorrow worry about itself.

 Count it all joy when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. James 1:2-3

According to that verse I should be one joyful person and I've struggled with being joyful. I go to the grocery store, the mall or go on facebook and I hear people talking and complaining about their kids or about being pregnant...  please don't feel bad if you've done this I know with all my heart if everything had turned out normal for us I'd be saying the same things. But the more I'd hear people complain the more upset I'd become. I'd give anything to hear my baby scream as loud as he could, or have him through a tantrum in the middle of the store(One day I'll regret I said this when you all remind me I wanted this!!), or to spend the night trying to get my baby to sleep. I've come to the place where I know I just need to not let these things bother me any more because it is hurting me more than anyone else. Now in saying this, I know its not going to be that clear cut and I know its going to take a lot of training on my part to get my brain where I want it! My joy has been stolen and I am taking it back!

Were ready for change. We've been in this hospital far to long, and I'm so ready for a miracle that no one can explain expect by saying it was God. Get ready people! Its going to be good and its going to be soon! In Jesus name we will not need a new vehicle, we will not even need a special chair and a ventilator will not even enter our home. Deklyn is coming home soon! I've had far to many confirmations that this will happen, I know it will.

Thank you for continuing to believe with us and pray for us! We are claiming the healing God has for our son, get ready to see it!