Wednesday, January 15, 2014


I had been hoping it wouldn't come to this, but it looks like it has become necessary, if not critical. This flu season is becoming progressively aggressive, so we're going to have to make sure that everyone that comes in close contact with Norah, or even in our house, is up to date on their flu vaccine.

The truth is, I didn't get my first flu shot until I was pregnant with Norah. After her diagnosis, my doctors stressed that she could have respiratory issues (ha!), so we needed to make sure our family was protected. I have received the shot every year since, and so have Harper, Jeff, and Norah.

In our lives we are always weighing risk and benefit. Some people have allergies or sensitivities that result in a choice against the flu vaccine. (You can get a preservative-free version, though there are other allergens too.) Others may not fully understand what can happen if they get ill. I truly hope that everyone does research on both sides of the topic to make a fully educated decision on whether or not vaccination is right for them. A good place to start is the CDC's website. We understand that our family lives in this unique world where we are apt to hear more scary details about what the flu can do to otherwise healthy, youthful people (hospitalization, heart and lung ventilation, even death).

I just know that for my family, we need to increase our "herd immunity". Jeff and I have decided that, for our family, we cannot afford risks. I will not tell anyone that they should or shouldn't get the vaccine. I may tell them to consider it, but I will not tell anyone that they have to. However, our company will be contingent on it. Our family has had to live in separate places for far too long to have to take any unnecessary risk of having to live that way again. For those that do not vaccinate, we still hope to keep in touch via other means, and look forward to coming out of hibernation in April!

Tuesday, January 7, 2014

Two Hundred and Three Days

Norah has been home for 203 days. That's just shy of seven months. I have been distracted from blogging by our new life at home. I spend every day grateful for our life together as a family, at home. We have our routines, and that helps us manage the level of crazy. We were not quite so organized at first. Of course, we are still a work-in-progress, but what family isn't?

Most days, I still have moments when I am caught off guard by my emotions. I look around me, and see what I've been longing for. Just about every morning, Harper wakes his sister with his enduring volume of a 5-year old boy. I hush him, but secretly love the normalcy of it. Norah and I have quiet time together while Harper is at school for a few hours. Today, it made me sob. It is difficult to describe; my tears aren't quite tears of joy or sadness. As I type, I gaze down at my daughter. She's lying on the carpet while gravity feeds her through her gastric tube. She fidgets with her toes, enamored with the Princess and the Frog (one of her favorite movies). She has no voice with the trach, but her fingers dance with babble like so many other kids her age with a hearing loss tend to do. She's learned so much sign language in the last few months. I look at her in awe. In awe that she is really here. In awe that I don't have to miss her anymore.

I think of what we would all be doing this time last year. Norah would probably be getting her bath at the hospital, a mess after being fed by her speech therapist. Harper and I would be getting dressed, with me counting down the hours until it was time to go visit our girl. I think of my aching heart. I think of Harper hiding from the hospital employees. I think of cuddling and holding my girl tightly, trying to squeeze in every bit of affection I could in our time there each day. I think of Jeff's extra long days: commute, work, then time at the hospital. By the time we got home, it would be quite late. We'd be scrambling for dinner and to get Harper in bed at a decent hour.

In so many ways, our life now is more difficult. I don't get out much. Something as trivial as picking up Harper from school is a huge production with medical equipment. I have learned to juggle a ton in my arms and strapped to my shoulders. I have learned to trip over cords, tubes, and wires without falling down or pulling on Norah. I manage her equipment and supplies. I manage all sorts of mail such as people saying we owe them money to medical records and appointments. Yes it is hard. That is just the tip of the iceberg. All this is done while standing in Norah's doctor, nurse, CNA, medical transport, respiratory therapist, physical therapist, occupational therapist, and speech therapist. And of course all of these daily things are made much more manageable with the help and support of Jeff and some select friends and family members. You know who you are. :)

But the single thing that truly makes all of these things doable is the love and gratitude we have for finally being together under the same roof. This love makes it almost easy. I look back down at my girl, playing with the fabric on the couch with her feet now. She dances to the movie's music. She is so happy at home, and has come so far.

This post is a scrambled mess of thoughts, but I felt like I had to get it out while I had a spare moment. By the way... Our first round of holidays together at home was PERFECT. 
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