Thursday, April 18, 2013

The Soundtrack of Our Lives

I know, I know it has been forever since I last posted. I had the crazy notion that the next time I would post would be to announce that Landon was finally walking. Of course for anyone who knows Landon, he does things on his own time. I'll admit being a type A control freak type person makes it a wee bit hard since I am not privy to his schedule. As we celebrated his 2nd birthday a few weeks ago, it has been a time for reminiscing and a time to give thanks for how far we have come. As time goes on, I find myself mentally separated from the NICU journey we endured. It feels as if it happened to someone else or it was a really sad movie that created vivid memories. This makes it easier to take for granted just how far we have come.

Not so sure about the big boy bed he got for his birthday

More excited about the Mickey Mouse on his cake then the cake...doesn't take after his mother at all
However, at times, I am reminded of the first 6 months of Landon's life. Usually this reminder comes due to a song I associate with that time period. I think we all have a 'soundtrack of our lives' or music that reminds us of a special birthday or the first time we met our spouse or a moment with our parents. For us it starts with the Mumford and Sons entire album 'Sign No More.' The song 'Little Lion Man' was the inspiration for Landon's nickname. I would listen to that song while on bedrest and at times when I felt most desperate, when I hadn't felt Landon move for some time, he would start kicking up a storm to the beat of the song.  Once he was alive and fighting, music was a vital part to his recovery. Oftentimes when he came off the ventilator (whether because he pulled it out himself or when the doctors planned to take it out) we would sit for hours next to his isolette and sing. He was a fan of the songs of Andrew Llyod Webber plays, Les Miserables being a favorite. And of course I had to pull inspiration from Tom Petty with 'I won't back down,' which seemed rather appropriate at the time.

Now Landon's musical tastes have evolved. He especially loves any song Mickey Mouse or Dora the Explorer sings. He still loves pop songs, we even have a video of him clapping and dancing on beat to Beyonce! The song that is currently in my head is Emeli Sande's "Next to Me." The words of one stanza go:
   
  "When the skies are grey and all the doors are closing
       and the rising pressure makes it hard to breathe
      well, all I need is a hand to stop the tears from falling
      I will find him, I’ll find him next to me"



Why this song? I think it is because living through life and death while in the hospital you have adrenalin to live on but now that we are home, sometimes regular living can be so much more exhausting then fighting for life. Sometimes I almost feel like I can hear God telling me that I prayed and begged for this baby and now I have to put my money where my mouth was and give that baby everything he deserves. It is a good thing then that I have my husband Ryan next to me. I was able to reflect on everything he has done for me since the moment my water broke early on Landon's birthday. We actually spent his birthday in Las Vegas, the same place Ryan had to rush from when my water unexpectedly broke. He recalled the horrible thoughts and emotions that raced through his mind while he desperately tried to get him before we lost our son. Never in our wildest dreams or prayers could we imagine that two years later we would be able to take the picture below in the place Ryan was standing when it all started. 


Looking at the same window daddy did when mommy told him her water broke
Alright now that I have gotten my ramblings out, let's get to the part that you really care about: Landon updates. He is absolutely the most laid back, happy little guy. All he wants to do all day long is play, laugh and dance. He continues to learn and grow everyday. He loves to 'read' books especially ones about doggies or the moon. He loves throwing his ball with his dog and his absolutely favorite thing to do is go up and down stairs. Actually it doesn't matter if it is stairs or an escalator or an elevator, he just likes to 'go up' which is what he shouts if he sees any of those things. 

There are still struggles. We are still working on walking though getting so much closer. We have all agreed that  Landon is a cautious little guy and just needs to build up his confidence. He has no problem getting around using any available item as a walker including laundry baskets, toys, and sometimes the dog. He is pretty independent on other things including feeding himself. He loves to get his own food out of his own bowl with his own fork. He isn't particularly good at getting all of his food in his mouth so the dog is definitely gaining some pounds. 

Even with the food consumption, we are still struggling with weight gain. He is still a little guy looking closer to the size of a 1 year old then a two year old. Of course that may just be a gift from his mommy as I was always the smallest kid in my class. We still struggle because the quicker he grows the more healthy lung tissue and the better heart function he has. He hasn't had perfect lung function or heart tests since I last posted but they are getting better each time which is what we have to focus on. 
Pretending to be a nurse like his favorite nurse Kimmy

At his first hockey game, he got a puck!

Hamming it up

It is frustrating because you just want him to be a normal, healthy kid. It seems unfair that after all he has gone through he still has to continue to deal with things other children do not. Coming to the realization and ultimately the acceptance that he may never be a totally 'normal' kid given his beginnings has been hard. But then I don't imagine he would have his amazingly charismatic personality if he hadn't been through everything he has. Besides who knows what really is 'normal.' He work hards and he enjoys every second of his life. I think there are many normal people out there who would love to have that ability. 

I will try to update more often, though with the energy this guy has I am not sure how much spare time I will have- especially after he figures out this whole walking thing! Thanks for your thoughts and prayers over the past two years, we are here today because of them!
Landon and Mommy at Auntie Catherine's and Uncle Scott's wedding
Landon jumping on his gift from Auntie Sally