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!