groettum family update

Wow, it's been awhile.  This feels completely foreign - sharing and writing.  I have felt a multitude of emotions as it relates to blogging over the last 8 months, but the overarching one being that I didn't have the capacity or strength to speak about my emotions and still be honest with my feelings.  I'm not even sure I was able to admit them to myself, let alone others.

I finally feel that I have some space in my heart to open up and blog and I also have something worthy to talk about.  

Let's start with a little family update...

Andy

Andy recently finished his Education Leadership program and now works as an Assistant Principal at South Middle School in the same district (Aurora Public Schools) we have worked in since moving to Colorado.  It is proving to be an extremely challenging and rewarding position all at the same time.  As he is getting used to being a "boss" and working long hours, he is also supporting me in a similar venture.  

 

  

Lindsey

As for me, I have taken on a Master's program following in Andy's footsteps studying Education Leadership at the University of Denver.  I started in June and will be finished in December 2015.  The program is a combination of online work, projects, and face-to-face classes some Saturdays.  I am enjoying every moment, but it has proven to be challenging to balance all the roles I play; mom, wife, teacher, student.  Most people think we are crazy for taking on a new job and graduate school at the same time as also managing a family, but somehow we are making it work and actually succeeding!   

and now for the real star of the show..

Calvin    

This update is where the real story is and where the inspiration for my ability to write and share again for this blog comes from.  Since I last wrote, we honestly have been in a bit of a crisis mode.  It all started in February with one of Calvin's hospitalizations and has seemingly gone downhill from there.  Andy and I both missed double digit days of work last school year in the matter of months due to one illness after another and a few more hospitalizations.  Just when we felt like life was returning to normal, something else would pop up.  From ear infections to pneumonia to numerous viruses to hand foot mouth disease to the flu, we experienced more than what it felt like we had the capacity to handle.  Although day care was good for Calvin in some ways (amazing teachers, hanging out with lots of kids his age), it also was bad in the sense that every germ that lived on the surfaces infected his little body and wreaked havoc on our lives.

We learned a bit from last school year and decided to hire a nanny for this school year and it could not be going better.  We hired one of Andy's former students (I told you about her here) who is now in college to become a teacher.  She shows up every day ready to chase Calvin around and go on new adventures together.  In a short amount of time, she already feels like family and our hearts and minds are at ease each day when we head out to work.  Not only that, but Calvin is doing better than ever with the one-on-one care he gets each day with "Sigh" as he calls her.    

 

Alright, I'm getting to the best news of all time, finally...

We go to see Calvin's Pulmonologist every few months to check in on his progress with NEHI.  Since the last visit, we also saw a GI Specialist in order to determine if Calvin needed a feeding tube or if there were other options to try in order to get him to gain weight.  He has been taking a medicine twice a day that's job is to increase his appetite.  We have also added a calorie booster to his diet called Benecalorie, which has 330 calories in each dose (he gets one or two of these each day in addition to other foods).  In the matter of two months, these changes helped Calvin gain 3 whole pounds!  This brought him from 0% on the growth charts to almost 15%...this is HUGE!  This alone made our day and had us jumping for joy. With each visit, the respiratory therapist comes in to check his oxygen levels.  They check on his current oxygen rate, at room air, and sometimes at a lower rate of oxygen.  During the test, which lasted over 30 minutes, Calvin never went below 95%.  This is how you or I would measure as we breath normally with no oxygen.  What?!  We were continuing to do a mental happy dance. 

We could have stopped here, gone home, and been completely elated and satisfied.  But, then there was more good news.  Because of Calvin's oxygen level test, the doctor thought that moving forward he could go off of day oxygen and only have oxygen at night when he slept.  The doctor continued as if this was normal news and it was no big deal.  As if she hadn't just uttered the words we had been longing to here for almost two years.  I had to stop her to clarify and to just have a moment to process the words she was saying...."Excuse me, what did you just say?  What does this mean?  No tubes, no oxygen tanks, no chasing a very fast little boy who has always been tethered?"  We continued to talk through the logistics and how she wanted us to follow up with her and it was overwhelming, but in a good way.  It was all starting to seem like it was too good to be true.  Then, it continued to blow our socks off and actually get better.  

Before we left, I asked the same two questions I ask at every visit.  As I awaited the answer that I was so used to hearing, I was surprised when I got a different one.  

Question: "Can we go to the mountains?"

Answer: "Yes."

Question: "Can we fly?"

Answer: "Yes."  

Words are hard to come up with to explain everything that was going through my head.  The best word I have come up with so far is life-changing.  Seriously, think about the magnitude of that word for a minute because I'm not using it lightly.  Life-changing.  All three of our lives changed in that moment, in that doctor's office and will forever be changed.  The world that we have known as parents thus far has been quite different from other parents we know and right now it is being turned upside down or right side up, depending on how you look at it.     

Calvin has been on oxygen 24/7 for the majority of his life and our "normal" has been multiple hospital stays, incredible daily worry for our son's health and well-being, and a tether that consisted of a heavy oxygen tank and tubes everywhere.  We are well-versed in medical terms and our vocabulary now includes the following that we did not know previously: 

oxygen tanks including D, E, and M varieties
oxygen tank necessities (regulator, wrench)
oxygen flows (hi-flow, 1/4 Liter-1 1/2 Liters)
concentrator
oxygen accessories (cannulas, tender grips, water tubes, 50' and 25' oxygen tubing)
nebulizer ("nebs" for short)
a multitude of steroids (Albuterol, Quvar, Flovent, etc)
oximeter

Andy and I have both had our struggles with our "normal", but for the most part we have taken everything in stride and done what we had to do, which was to be strong for Calvin.  We rarely worried about ourselves and have essentially been living in a war zone, not sure what each day would bring - terror or peace.  

I don't write all of this to say that our tragedy, stress, and worry is worse than any other parent's tragedy, stress, or worry.  We all feel these feelings as it relates to our children.  It's natural as parents to feel this way.  I am writing this as my own reflection of where we have been and where I see our future possibilities and also as an opportunity to let people in as a way to get a glimpse of our journey.  This is my truth and my journey as a mother.  

I recently had an appointment with my doctor who I hadn't seen since my 40 week appointment before Calvin was born.  She started the appointment by asking me what seemed like a simple question.  

She asked,  "How is it being a mom?"  

I'm not quite sure she was ready for how I answered this question compared to how other women must answer it.  I started to say a standard answer like, "It's great," or maybe even something a little more honest like, "It's good."  But it didn't feel right to give an answer like that when I couldn't say it with complete honesty.  I also had a quick mental moment with myself giving myself permission that if I said out loud how I was really feeling about my motherhood journey, if I was totally honest in this moment, it didn't mean that I loved Calvin any less or that I didn't love my role as a mother.  So instead of giving the standard and dishonest answer, I found myself saying, "It's been hard...really hard."  I explained everything from the very beginning.  From the first hospitalization to the NEHI diagnosis to feeding struggles, more hospitalizations and illnesses than we can count.  I told all of it. I had never explained all of it from start to finish like that...so completely.  I realized that I had just been sharing small snippets with those closest to us as things would happen.  By the time I was done, all I could say in my head was, "Wow, that's a lot for any person to go through."  My doctor sort of looked stunned and emulated the thoughts going through my head. This seemed like a new revelation for me, like I was looking at myself and my parenthood journey as the sun shown through clouds while the fog was still clearing.  I could actually see the line that divided our yesterdays from our tomorrows.  

  To say that we have hoped for the day that Calvin would go off of day oxygen and be more free is an understatement.  It was difficult to never be sure of when it would happen and it almost seemed like it was still so far away.  I have spent Calvin's whole life looking at other parents with kids who weren't tied to an oxygen tank with pure envy and sometimes even jealousy.  Those feelings aren't good ones for me and I didn't like myself when those thoughts crept into my mind.  I also didn't realize all of the freeing feelings that would come to all of us with this day finally arriving.  Not just the obvious feelings like how much easier it is to go outside of our house or how all three of us trip less each day over all of the tubing throughout our house.  These things are no surprise.  

The feelings that are emerging resemble hope.  Hope that the dreams we had for our family can actually now come true, like for reals.  Hope that "someday" is actually here and it's today.  No mountains and no flying seem like small sacrifices to make for the health of your child, but in reality, those restrictions have made us feel like prisoners in our own lives.  Most things that we enjoy doing and that have defined us in our relationship involve going to the mountains or flying, but really just adventure in general.  To not be able to share that with our son for the two years he has (almost) been alive has been crushing to say the least.  We haven't felt like ourselves and we have felt very trapped.  

With all of these hopes and dreams in our heads and our inability to hide our excitement, we are also completely realistic and although we are basking in our current reality, we know that it could all be taken away in an instant and go back to our recent past reality...tubes, tanks, and all.  The pesky germs that live during cold and flu season may invade our toddler's body and crush our hope.  As the eternal optimists that we are, we won't let that get us down because, for today, Calvin is breathing well without oxygen during the day and thriving in all areas where he has usually struggled.  I can't say this is any little thing, but this is (as I mentioned before and I haven't thought of another word that describes it better) life-changing.  We will continue taking life one day at a time, but we will also follow "doctor's orders" and plan some family adventures in the near future.     

For now, this is our today...