thecookiegal

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A New Normal (yet again!)

on October 8, 2011

nor·mal/ˈnôrməl/

Adjective:
Conforming to a standard; usual, typical, or expected.

Noun:The usual, average, or typical state or condition.

I have started yet another “new normal” phase of life. I seem to have been having a LOT of new normals these past 5 years.

First I went from being a single person to being a wife. No longer could I pack my bags on a whim and go and visit my friends, or plan a trip to Disney with my aunt. I had someone else to think about. Having lived alone in my house for 4 years prior to being married, it was a bit of a change. As was having to share a BED! I like to stretch out when I sleep! If only we had room for a KING sized bed, my husband would not have to fight me for the blankets so much.

At the same time, I went from being a student, to being a new Nurse. There is always something to be learned in nursing, but it is weird to go from one day having to have your teacher over your shoulder when giving a shot, to being on your own that is a bit unnerving! (for the patients too I am sure!)

Then just as I had figured out how to be a wife, I became a MOM! It was a wonderful time, but a lot of changes too. No longer could we go out whenever we wanted to for dinner or a movie. Our sleep schedules were no longer our own! We couldn’t just leave the house without packing a bag. We went on a trip – there was more stuff for that one little 4 month old boy that we had for the two of us together!

Then, just as we were figuring out how to be parents, the word “cancer” came into our lives, and gave us yet another “New Normal”. Calls from the baby in the middle of the night, were no longer just about eating or diaper changes. Now we had to worry about feeding tubes coming out, TPN lines getting tangled, TPN machines WORKING right! Leaving the house was still a chore of packing – but now, it was packing “just in case we have to be admitted”. I learned to leave a box in the car with “Hospital Thing” Alexander had double of most toys, so we didn’t have to worry about leaving a favorite one at home. Bath time was not as much fun – no more big splashes, because we had to be careful about his central line. Bath time is not fun when you have to cover up in “press and seal”. Worrying about germs went beyond the normal most people think about. No more trips to the grocery store, or the mall – too many people. Couldn’t go to church anymore – again too many germs. Family trips were to the hospital – not the park. We had to learn to give Alexander medications through the feeding tube – I had to learn to put in it to him (well, that or keep making “field trips” to the Winchester Hospital ER – after 3 I was done!!!) Normal was looking for signs and symptoms of infection measuring vomit, to make sure it wasn’t “too much”, counting diapers, daily temperatures, visits from nurses for blood pressure checks. More days than not Alexander was an inpatient. That became our “normal” home. Sometimes, Alexander was scared when we came home – crying when I put him in his crib, as if he didn’t know where he was because he had spent so much time there.

Then came that terrible day in April – our next ‘new normal”. Life without Alexander. What would we do now? No longer did we have to go to the hospital for appointments. No more blood pressures, no more midnight, 3am, 5am, diaper changes. No more medications to worry about. No precious little baby boy to take care of.

What do I do now? How to I go back to life before Alexander? I had not been working since he was born – what should I do now? Could I go back to work as a nurse (I have) should I do something totally different? Who was I now that I wasn’t a “stay at home mom” anymore?

During the few times I was able to be away, get to church, I always left my phone on vibrate – just in case I got a call. I don’t have to do that anymore – it seems strange to not have to “worry” about getting an emergency phone call.

People ask how I am doing – I have to answer “one day at a time”. Each day is different. Some are easier than others. As I face this “new normal” – I do it slowly. I don’t want to rush into a change – as I am still trying to figure out who I am. I know I will ALWAYS be Alexander’s Mommy – but not having him here on earth to love and to teach how to become a fine young man is difficult.

I read stories about other “cancer mom’s” or moms of angels and see the wonderful things they have done to promote awareness for neuroblastoma and to raise funds for research. I don’t feel that is for me however. I have been making hats for kids in the hospital, and I had a Pillow Case party to make Pillow Cases for the kids with Cancer http://conkerrcancer.org/home/ (Thank you to all that came 19 in all made that day!!) My friend Sandy and I made Gold Ribbon lollipops for Childhoood Cancer month. Those things are good for me – keeps my hands busy and I can picture the kids who will get them.

I will figure out this new normal soon enough. Of course, once I do, another change will come my way!

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5 responses to “A New Normal (yet again!)

  1. Jeanne Morganelli says:

    Such and amazing blog Nancy!!! As always, THANK YOU!!!!

  2. Jackie says:

    What an amazing spirit…I really seem to understand you,
    Jackie Goodell
    cb andrewgoodell

  3. Mikep Lukas says:

    That was a well-written description of the stages you have been going through. It was very inspiring, and it helps us all to remember “one day at a time” when things start to get tough!

  4. Norma says:

    Nancy,
    First time I’ve been able to visit your blog. I want to thank you for your messages in Ryan’s guestbook. As I/we limp along on our “new normal” those messages mean so much.
    Your Alexander is a beautiful boy. Ryan loved babies. I bet he’s playing with Alexander and making funny faces at him to make him laugh. 🙂

    Norma
    (CB:amazingsuperryan)

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