It's Going To Get Harder

(Image is a photo of me holding a sleeping Liam after a long day of bike riding exactly 1 year ag today)

"It's going to get harder before it gets better"

And it is. Much much harder. 

Yesterday we received Liam's DC had delivered to us at church. It had already been an emotional day from the minute I woke up. It's like I couldn't stop the tears.

Today in no different. Loosing Liam might as well of happened yesterday. 

Life is so different now. So sad.

There's still waves of denial where I think that he will be waiting at home for me. That when I pen the door I'll be greeted with his huge bright smile saying "mommy you back" as he runs towards me to hug as tight as his little arms are able. But then as waves of the ocean crash into rocks, so do my hopes. And my heart breaks all over again.

5 weeks tomorrow since I've last held my sweet boy. 

Saying life is unfair is the understatement of a life time.

I remember one day he was outside riding his 3 wheeled baby trike and he "crashed" and fell to the ground with the trike on top of him. He laid there and laughed. He thought it was so funny. 

He didn't get to spend as much time outside as he would have liked. He was always at the doors and windows looking out. This little boy at the age of 1 wanted outside so badly but we had to be so careful with him that he hardly got to experience it. He had been on a 24 hour feed and taking the pump outside had made it harder.  He used to sit at the back screen door and push cat food out this little hole to feed the dogs. He would place his tiny little hands on the screen and the dogs would try to lick him. On other occasions Liam would climb up the couch and sit in the window looking out. He was such a determined little boy. He always found a way to adapt to get what he wanted in one way or another.

There were so many nights when Liam would fall asleep in my arms and I wanted nothing more than to stay that way all night but couldn't because of his continuos night tube feed. Many nights I cried myself to sleep over the injustice. Other nights I would lay in his toddler bed with him for hours until my body cramped up forcing me to get up. And a few nights I was so frustrated I either brought the pump closer to my bed so me could sleep with me or forgot the feed all together. 

There were so many things in Liam's life that were unfair but he didn't mind most the time. 

When he started preschool this year, he figured out quickly that he was different. The kids in his class did as well when he had to go to school with oxygen. But they didn't care. They asked their questions then said he was so cool. One kid even compraired Liam to a firefighter. Liam loved it. On those oxygen days, the teachers would take blocks and puzzles outside for Liam to play during recess since he couldn't run around. The other kids would give up their playground time to play with him. They said they didn't want him to be alone. I was amazed by their acceptance and had cried over how wonderful it was. 

Days are getting harder. His room is still set up and it's s hard to see this room ready for the little by who is never coming back. I don't know how to handle all this. I'm so lost.

Straw Houses

Today I got a call from Liams preschool that he was acting weird. After requiring oxygen last week, no one wanted to take the chance. I agree. 

They said he suddenly got quiet and became very clingy, just wanting to sit in Mrs B's lap. She said she didn't mind that at all but they wanted to make sure he was ok. 

Turns out Liam was fine. He said he had just missed me and was sad that I hadn't stayed today. 😳. Well who could be mad at that (this time anyway 😂). All joking aside, I get it. He missed me. He's got some anxiety about me not being around and some attachment disorder. It's to be expected after me being around 24-7 for his entire life (minus the 2 days after he was born when our local hospital wouldn't release me to follow him immediately). 

It's ok. We will get through this. So today they sent home the "art" project they were getting ready to do in class. They didn't want him to be behind in making his three little piggies book. Today was the straw house. 

Liam used the scissors all by himself to cut up yellow tissue paper to create the straw. Then he glues it onto the "house" which he cut out that morning with me. It's so awesome how he doesn't even realize how much he's learning while having fun. 

So here's our happy for today. Liam doing things that we weren't sure he's ever be able to do: using scissors, squeezing the glue bottle (with little help) and creating something awesome. When Liam was in NICU and things were grim, I remember thinking how sad id be if he never was able to make me pictures and how empty the feeling was in the bought of not being able to hang up his artwork. But he's surprised and overcome all expectations. You got this Liam! Keep it up buddy!! 

12 and counting

Can't believe its only 12 days away. He's come so far. I remember when we were setting goals for Liam with Brightstart and I said "as long as he's walking by age 2 I will be very happy". Liam you did it. It was the hardest goal you've had and it took lots and lots of work, sweat and IFOs but you did it buddy. You've over one so much diversity in your short little life, more than most their entire lives. I'm so proud of you and so thankful to God for being there for us all and healing you and giving is you. You are daddy and my ultimate life test buddy. We never expected the tests to be so hard or heart breaking baby boy but we've made it through the roughest points so far and will fight our way to the end. We love you Liam Michael and can't wait to celebrate your 2nd birthday and 2 year anniversary of being a CDH survivor. 

Babies Day Out

We had a exciting day today. Liam and I spent the day with Aunt Rose and Uncle Cliff. They picked us up and we went to lunch. Then visited more family. We got to see miracle baby Daniel Lee who was born 1 month early and turned 1 month old today. He is absolutely precious. He spent 1 week in NICU, never needed oxygen and is thriving. He weighs 6lbs and is 20" long. I was so blessed because I got to hold him and spoil him the entire time we were there. I even got to take his pictures. Liam did amazing, he wasn't jealous at all. 

Liam's had great improvements in eating today. This morning he ate cream cheese. At lunch he ate a ton of French fries (he normally won't eat any). After we got home from our day out he ate for an hour straight. He could get enough. He ate the bread from my sandwich (most of my bread), a bunch of chex mix, alot of cool ranch durritos (helped daddy finish off the bag) then cried for more food because he wasn't done. He finished off with strawberry jam on bread (ate a tablespoon of jam an threw the bread). I was beyond shocked. I'm lucky if he eats that much in a 3 day period and he ate it all at one time. God is really working wonders with our little lamb. 

Unexpected surprise

Yesterday I posted a video of Liam walking a short distance. I was so thrilled. He had been walking more and more. I named the video "So close to walking full time". Here's the link http://youtu.be/XpgY4CZiGBw

Little did I know when I posted that video that the very next day I'd be posting one called "It's official!! I have a walker!!" 

http://youtu.be/FKGn2iRiUmQ

I was prepared to wait months still for Liam to walk. In fact the way his progress had been going I expected to wait months. Imagine the feelings that courses through me as I watched, and thankfully videoed Liam at the exact moment he decided to become a walker. I just figured he'd go a short distance but none the less I wanted a video since I hadn't gotten very many. I watched as he walke down one hall before the nurse came to take us to a room at the peds office. Then I continued to watch as he decided to walk the entire way to his room! I wanted to scream with joy at the top of my lungs that my baby boy who had survived CDH, ECMO and countless other obstacles had now overcame yet another obstacle. I think the moment meant more because it had taken so long for him to get here. My son, my miracle has once again told CDH where to stick it!! 

Liam and Miss Amanda his PT

Liam and Miss Julia our Beightstart worker

Keep faith

Liam tried new food today. Carmel Cadbury egg and chicken flavored top roman. Both were hits. Of course the top roman was its salty and he likes salty. I swear every time I look at him he's growing and changing. His face is changing quickly. He's loosing that baby look and is developing a more mature facial features. The last 21 months have gone by so fast and yes I want him to quickly grow out if his medical problems but I don't want him to grow up. I'm proud that he is yet sad that he is. Lanie is going through another growth spurt too. Her facial features are yet again maturing. They look so much alike yet so different. Liam still thinks he's funny when he does things he's not supposed to and I find it hard to hide my smile and laughter. I find myself saying "he's a boy. That's what boys do" alot lately and I love it. It seems to get easier everyday watching him grow up. This time last year was filled with alot of tears and "why's?" This year is laughter and smiles. That's inspiring. Knowing there's hope out there for other families going through what we went through is a great feeling. I didn't have anyone's story to read an follow to help me through those dark hard times and that's why I share our journey. Keep faith.

Failure

This morning the home nurse came out to watch me flush Liam's mediport. This was supposed to be the last time she came out. If it wasn't or my failure to be able to get the needle into the port for the second month in a row then she wouldn't need to come out again. She says I did really good and when she went to access the mediport even she had problems. My needle was bent from hitting the metal side of the port, something even she kept doing because Liam's port was at an odd angle. Despite hearing from her that I did really well an handled the situation perfectly, I feel like a failure. In the end I am responsible for Liam's care. I have to be able to access his port on command and flush it. I don't understand how I could access it on the first try without problems but since then haven't been able too. Did I get to comfortable? Do I just assume I'm going to get it every time? I took longer feeling the position of his port to ensure I'd angle the needle properly. I concentrated solely on my task and didn't let anything distract me. So why is it I couldn't do it? Now she has to drive back here next month and we have to go through all this again. I feel like such a failure. Between the mediport today, my chili beans failing horribly yesterday, not being able to soothe Liam for the first time on sat I feel like this entie last 3 days have been an epic failure.

Sensory Fun In The Sun

We had a decent day today so liam got a chance to enjoy fresh air, sunshine and grass. We also decided to work on some of his sensory issues so he got to play with dry uncooked rice. I poured a small bag of rice into a small basin then let him just feel it. At first he was aprihensive. But quickly took a liking to how it felt to let it run through his fingers and fall back down. The we introduced a small cup and worked on getting him to put the rice into the cup. He did wonderful. And both kids had a blast. In. Few days I'm sure to see rue plants sprout up into front yard lol