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!

Expecting Great Things

Taking off from my last post, the evening of the 23rd Deklyn was able to be weaned of the Nitric Oxide and in the afternoon of the 24th we were moved back into Deklyns big room! It was honestly a miracle they kept Deklyns room for him for that long, even though all the kids on that ward are there long term even if ones leaves for a few days they fill up the rooms pretty quick. I think they felt bad for us that we were moved to ICU just in time for his birthday, and the hospital usually clears out as much as they can to get kids home for christmas maybe they thought they could afford to hold his room for us. It would have been devastating for us to move out all our presents, christmas tree and all his clothes and toys just to be coming back in less than a week, so really it was so amazing they held the room for us and I am SO grateful they did!

We had a great Christmas eve, Christmas & new years together! Deklyn watched us closely as we opened his presents it was soo cute! Deklyn and Sheridan got me a very special gift this year. After all the presents were opened and I thought it was all done, Sheridan brought in a huge present that ended up being suitcases, when I opened them up it turned out to be a trip to California! Sheridan is amazing with always surprising me and doing special things like this (I am SO lucky!) Although I am going to miss my baby boy sooo much, I know its going to be so good for us to get away, relax and just have fun together! I am so looking forward to it, and I know Deklyn will be in great hands and of course it helps that I will get to buy him presents!

Thank you for all the prayers for our family to stay healthy! Although not everyone was feeling 100% we felt ok moving Deklyn into the room with everyone as long as the people who weren't feeling the best didn't touch him. It was so nice to have everyone in one room for the 2nd time since Deklyn was born, and for the 1st time Deklyn got to play with his cousin who is the closest in age to him, it was so nice! But now I am sick and have not spent a good amount of time with my son in a whole week! Its one of the hardest things I've done in awhile but I know its whats best for him. He just can not handle being sick, it wouldn't be worth it in the end!

Looking back at 2012, it was an incredibly hard year. Definitely the hardest year of my life. If I knew a few years ago this is what 2012 was going to look like for me, I would have said I couldn't do it. God has given me so much strength even when I felt like I couldn't go on. I am SUCH a home body... seriously... I love being with people but I'm one of those people that could be at home for a few weeks on end and be happy. This past year I spent less than 1 weeks amount of time at home and half of that time would have been sleeping. I never in a million years would have thought I could have been able to spend so much time away from home, but as any mom will tell you when you have a kid, wherever they are is your home. Sounds cheesy but it is oh so true!

We are believing for an incredible 2013 and I know Deklyn is going to see his home this year! Thank you all for the incredible support you've shown us in 2012. Really I never thought so many people would rally around us in our time of need, we are so grateful and amazed at the generosity of others. Really ever since we had Deklyn Sheridan and I have been talking about all things we want to do for others just to give back! We feel very undeserving and cant wait for our chance to return the favour! 

Thank you for continuing in believing with us for Deklyns complete healing, I know with out a doubt there will be a day where I get to lay Deklyn down in his crib at HOME, a day where I get to hear him cry, babble and giggle! I just know it. God loves Deklyn even more than I do and he has got an amazing plan for his life. He has reached more people in his 1 year of life than some people do in there entire life!

I read some verses that really spoke to me and I want to share them with you. I hope you are encouraged by them. 

Do not be afraid or discouraged. For the lord your God is with you wherever you go. - Joshua 1:9

We ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed... We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. 2 Corinthians 4:7-9 (This verse really describes our 2012, God has never abandoned us even when its felt like we were in a nightmare. He will never leave us!)

Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see. Hebrews 11:1

From Sheridan, Deklyn & I we wish you an amazing year! Some of you may have experienced a hard year like us, or maybe even worse. I challenge you to press in to God and see how he can turn things around. I promise you, you will not regret it. I know its not easy and its often the last thing we want to do in a hard situation. He will never let you down.