Some guy named Einstein once said that “the definition of insanity is doing the same thing over and over again and expecting different results.”
Each day encompasses essentially the same thing: we wake up after a short night sleep, have breakfast, hang out with Liam, have lunch, hang out with Liam, have dinner, hang out with Liam, go to bed. Sprinkle in some family and a trip to see home/Ezra and you have pretty much nailed down our current life. During each of the past 43 days, we have expected something different than what has happened (both positive and negative), yet we wake each morning thinking that something is going to be different about today. The anticipation is tiresome and the routine has long lost it’s usefulness.
Walking back into the NICU this morning, there was a harsh realization that I really don’t like this place anymore. Sure the hospital and the NICU are well designed and well stocked with things that we need, but it’s just not the life that we want. The doors, the carpet, the smells, the sounds, and the routine are getting on our nerves in a big way – compound that with a winter storm that has brought the coldest temps in more than a decade – and you end up with a level of restlessness that is hard to overcome.
The one thing that we aren’t sick of? Our nurses.
As we walk by the folks that don’t have a private room, we think about how thankful we are to have the space and the ability to spread out. In the room we have a TV that features 4 local channels, 5 ESPN channels, 5 news channels, 5 Spanish speaking channels, and 6 basic cable channels….and it’s surprising (or not) that there is frequently nothing but junk on them. We have the internet, and even though that has proven a good escape at times, it still turns boring and lonely. Books? Magazines? Games? Movies? done and done.
Yet, there isn’t any option. This will either get easier or harder – and we only control a small portion of that.
The Life of a Little Hippie 
I don’t envy you at all! I pray that you take comfort in the heat and large expanse to move about in this nasty weather. (Are you getting snow or just cold temps? It’s been snowing here for hours already, and I fear our single wide just got smaller.)
Oh yeah, I’ll pray for your sanity, too! loveyoumeanit
Oren and Family,
Only being a bystander to one of my best friends through the birth and now 9year life of her precious special needs son, I can only offer you words of encouragement. Life is a marathon, not a sprint and enjoy every moment with your son. Grant (my friend’s son) is one of the sweetest, most wonderful little boys that I know. God does have a purpose and plan for his life and He will for yours too. Grant was born with a brain malformation and in his 9 years, he still can not walk or talk. I pray that your sons disabilities are not nearly as severe. if you need help navigating through the “system”, my friend has a special place in her heart for other parents of special needs children and can be a resource to help you through the looming jungle ahead of you. She is also a wonderful person to talk to who has walked down a similar path to your own. God Bless You, Your Family, and little Liam.
Bless your heart. I know exactly what you mean. I was beginning to hate it after 4 days and the last day was the worst. And as you say, the nurses are the best!
Dear Oren, Ahna, and Ezra & Liam,
I am a member of Our Saviors in West Salem and just wanted you to know how much I am thinking of you all and praying for your family. Blessings to you all & love from Wisconsin,
Roxanne
that Einstein guy, what a thinker. it is colorado so soon it will be warm again and you can do another outdoor adventure walk. is there anywhere at the hospital that is silent & calm (like a chapel?) can you use that to do some meditation or yoga once in a while. it is amazing how restorative that can feel-both to mind & body & spirit. praying for your continuing strength to endure for your children. love, katy
It will get better. Promise. And, it also sounds like you need a break from the hospital – it’s ok to take one! I’m sure lots of folks you know would sit with Liam while you took a “day off” – it makes a difference.