Strong & Full of Goodness

I couldn't think of a good title for todays post, I usually do have a very hard time with that! So today I thought it would be a good reminder for me to title it Strong & Full of Goodness because that is the meaning of Deklyn's name. And that is exactly what he is, he is the strongest little boy I have ever meant and in turn helps me to be strong, and if you have ever seen him in person or even by looking at his pictures you can tell how "Full of Goodness" truly suits him! As usual Deklyn has been doing so well! He's just been so happy lately and just yesterday he's started moving around a lot! I got there in the morning, lifted his blanket and he just kept kicking his left leg like crazy! It was so cute, and ever since then he's been moving his legs and arms so much more! I love it! Its kinda like a little re-assurance from him. In the last few days he's also been more awake and playful which is super fun! Its so awesome to see him happy and interactive, it definitely makes it a lot easier on me!

I've had a bit of a stressful last few days, I've had lots of doctors and medical staff come in and see Deklyn and as usual they speak the worst. And it always seems to be doctors who just met him, they say how he's doing so badly ventilation wise and how it looks like he could need to be ventilated for his whole life or at the least a very long time. Maybe I should be more assertive and just say "No he won't" but I tend to just listen and in my mind say those things. I'm getting very tired of being told "Its gonna be a long haul", Yes I've been told that since I found out almost a year ago that there was problem with my baby... I've been sitting here for almost 8 months. I also know we are over half way done so you can stop saying "Its a long haul". Some days I think I could just about go crazy here... but then other days aren't so bad! I think I've just had a long string of bad ones...

A lot of people have been saying to me lately, "You must be so excited, your so close to getting to go home!" and yes I am very excited! Words can't describe the feeling when you've had your child living in a hospital for over half a year, just the thought of getting to go home is terribly exciting. But in that same moment it is extremely terrifying. Having a child dependant on machinery is so scary, at least for me it is. The only thing that gets me by is knowing that this isn't forever. I know I'll be able to do it, he's my son and I'd do anything for him but it doesn't make it any less scary. 

One of the things that will be happening very soon, is Deklyn will be getting a CT scan. They want to know exactly how big his lungs are so this will actually be happening hopefully sometime this week. But we know how it goes when your told when something will happen expect it to happen 2 weeks later! He will need to be put under for this which I really don't like. I thought it'd be as simple as an x-ray but its not. Those of you praying for us, could you please pray for this to all go well and that we also have good results back from the test? Also for peace for us, I hate seeing my son be wheeled away where I can't do anything for him. I would really appreciate it! On a less serious note... you could also pray that they don't choose to put the IV in his head, his hair is just starting to grow back so nicely haha!!

Its feeling kinda surreal that only a year ago I was 20 weeks pregnant and going to my ultrasound. Never once thinking anything could possibly be wrong. I will never forget that day, and I think its fair to say it was the absolute worst day of my life. I have never felt that low, and I have never felt so crushed. For the next few days after I would wake up every morning crying realizing that what I had been told wasn't a dream. It didn't take to long and I was happier again and believing that everything would be fine. But every time we went back to the doctors office was another blow and I was back down on the ground wishing I was anybody else but me. Now looking back although it might sound strange, I am so happy that I am me. I have learnt and grown so much, and I feel I appreciate things in life a lot differently than other people who don't have to go through things like this. Although things have gotten much better, I still have those days. In the same way that Deklyn brought me through my pregnancy he helps me in these hards days like today. During my pregnancy it was his wiggles and pokes and now all it takes is just looking at him and I know things are going to be ok, just like I've made it through this past year, were going to make it to next year and look back in amazement! I just can't wait for next year... haha!

These next few months are going to be filled with lots of learning and overcoming a lot of fears! I'd like to ask for your prayers as we are getting closer to home. It is super challenging being a parent to a child with extra needs and it definitely takes a lot of energy (not saying being a parent to any child doesn't!). Some days I feel like I'm back in high school having to learn so much! But I know with God giving us strength we can do it. I just wish I could go ahead in the future and see where we are a year from now, it sure would make things easier!