How?

Recently a friend's mom asked me how we were able to do what we do from day to day.  Without blinking I told her, we just do, one day at a time.  Doesn't everyone?

Still, her question has lingered in the back of my mind.  How have we been able to stay sane throughout this adventure?

When I look back on where we've been, aspects of how life has changed, and the uncertain road ahead, to be honest, there are times I am overwhelmed.  I guess that's why I try to look at each day as it comes.

Appointments on the calendar have dictated our new commutes, while blank dates free us for walks and play at home.  Not as many exotic adventures as in the past, but, on the bright side, nap time is usually uninterrupted.

Our family solitude has been lonely at times, and declining good times with friends or family has been disappointing, particularly for the girls.  Yet, summer's arrival brought soccer and swimming so they are once again satiated with shin guards and sun.

Regardless of where we are, the bustling of each day often leaves me drained, absolutely empty, needing to recharge.  These evenings I just can't find the strength to explain the latest tests, flares, or tantrums, even on the blog.  Instead, I escape to the novel, typically for just a few pages, before I surrender to sleep.

Somehow, with each sunrise I open my eyes to a blank page, a fresh canvas for the day to envelope.

Taking each day as it comes is easy, ditto for doing what is best for my kids is, yet there are days that feel like someone hit the pause button on our family while life around us kept moving forward.

Having a child with any illness changes your world, but it is difficult to understand or fathom how until it actually occurs.  No one expects or hopes for this path, we certainly did not think anything like this could happen to us.  In the end, our careful and cautious planning did not immunize our trail.

Things happen for a reason, yet I've been lost in trying to comprehend why all of this has happened to our son, or any young child for that matter.  In the back of my mind, I frequently have to fight the bitter urge to let this detour leave me angry.  Instead, at these times, instead of going day by day, I take in one moment at a time, reminding myself just how lucky we are.

While our "norm" has changed, our family is strong.   The girls have learned more about compassion, sacrifice, and absolute unconditional love because of this ordeal.  I've taken a step back, truly seeing and cherishing what is right in front of me; right here, right now.  

So how do I do what I do?  It's easy, I chose to be a parent, and in that choice, anything that comes along where my kids need me, especially when they are young, is my responsibility.  If that means blazing a new path, to weave back to the highway, then so be it.  I've always been up for traveling the less traveled route anyway, the untamed scenery is breathtakingly beautiful.

Interaction

My post on Facebook about our fasnachts got lots of feedback as well as requests for the recipe.  As I made our customary Fat Tuesday treat with Gwyn, I wondered what unique traditions other people have, not just for today, or those that are food related, just different traditions.

Those of you that know me understand that in addition to baking and cooking, writing and yes, even just editing for someone are activities that distract me when I need to turn my brain off from worry.  I love getting lost in a work, watching my words scroll across a page, waiting for someone's eyes to flow in their current, just as much as when a book possesses the magic to dissolve time.

With all of that, I also enjoy good conversation about fiction and non-fiction alike, I suppose that is why I am an English teacher.

So with that thought, and in anticipation of my guest post I have written for the blog Making of a Mom about traditions, I am asking you to help distract me, and give me some interaction here on this blog.

What unique traditions do you have with your family?

What have you passed down from your childhood to your children?

What new traditions have you started with your family or friends?

Ask your kids what their favorite tradition is.  It was fun to hear what my girls had to say when I asked them, and the perspective of a child can be refreshing, humorous, and eye-opening.

Feel free to answer as many or as few questions as you want.  On this day of indulgence, humor me in my assignment, after all, I've got teacher's withdrawal.  :)

Drained

TGIF, even better, that it is family movie and pj night.  While cleaning up dinner I think it finally hit me just how drained I am today, like I've been running on empty without knowing it for some time.

Nick told me to take a few minutes to myself, just to relax, so here I sit, with a nice cup of tea.  To be honest, I don't want the tea, just the hot mug.  There's something soothing about holding a warm cup of anything especially when the heat begins to spread from your palms, infectiously radiating like the intensifying morning sun.

As parents, no matter what you are in the middle of, whether it be something stressful, like we are dealing with, or just every day life, I think we all need to stop to take a few minutes to re-energize.  In the past, that meant a date night or even getting together with family or friends and their kids and letting them play while the adults hung out, which we can't really do and we miss.  So, for me these days, that means either sleep, a quiet cup of coffee and a book to decompress, or a quick card game with Nick.

I know tomorrow my batteries will be recharged, but for tonight I will give in to this exhaustion and go to bed, instead of just falling asleep in the living room, again.  Besides, I need to be ready for all the winter break activities, especially the faschnaut making, the girls' makeover day, and the big winter indoor camp out!

Walking Outside

Every day is a new adventure it seems.  Once we got the phone calls from both genetics and immunology informing us about Cole's results we were also instructed on the next series of steps we needed to take, immediately.

Now that Cole tested negative for NEMOS, there was still the mystery as to what was the root cause of his NK cell dysfunction.  Our immunologist explained not only the case studies she had been comparing him to, but her contact with a leading physician and researcher at Cincinnati Children's Hospital.  They stated we would need to take Cole for additional function tests as soon as possible.  Besides the repeat NK cell test they would also be looking at his perforin/granzyme B functions as well as his IL-2 receptors.  Just like the last time, the blood would be drawn here, then shipped to Cincinnati for evaluation.


In addition to the function tests, now that the genetic results were in, the gastrointestinal doctors wanted Cole's colonoscopy scheduled as quickly as possible.  With a few calls, OR time was found and the procedure was scheduled for next week.


As I drove to our blood work appointment, I dreaded the draw.  Not the screaming I knew was coming, but his face. The absolute look of betrayal when I have to hold him down, then the sheer terror in his eyes as he is pierced while tube after tube is filled with his blood just shatters my heart in a million pieces every single time!  Luckily, today's phlebotomist was the best we've had up to this point.  Unlike others, the first time was a charm and she was easily able to fill the seven tubes she needed without utilizing the syringes to suck additional blood from Cole's veins.  Within a few minutes my baby was back in my arms, twirling my ponytail in his hand, his head lying on my shoulder.


It is truly incredible just how forgiving a little one can be.  Here I struggled from the moment I knew he needed more blood work and in an instant it was like he had forgotten that I assisted the woman who had caused him such pain.  Immediately I thought about the quote that "having children is to decide forever to have your heart go walking outside of your body." 


Initially I realized what this meant not long after our first daughter, Paige, was born.  She was colicky and I just had no idea what to do to soothe her.  After a few days when nothing was working I felt like I was doing something wrong.  Unless we were hiking it seemed like she cried 24/7.  My heart ached terribly when I saw my friends with happy babies while mine was so sad.  Fortunately, as she grew, she also grew out of her colic.  About that time, I needed to return to work and leave her which caused me a worry like I had never experienced.  After a few weeks, I knew she would be ok, after all, she was home with her dad.  Still, the idea that as her mom, I could not always be there each and every second she might need me broke my heart.  I wanted to be able to keep her safe from anything that could cause her pain, like when she was safely growing in my belly.  In the end I knew I could not shelter her from the world, that in order for her to grow and learn she would have successes and failures, and in both, joy and pain.  So while I would worry and share in her disappointments, I would also be proud of her achievements as she grew into an independent child, one learning to make choices and live with the consequences, with and without my help as the situations would allow.  


While more of my heart left my chest with babies two and three, I realized this feeling would not subside and was a natural one for any parent.  There is nothing like the love a parent has for a child not to mention the lengths we parents will go to keep our children safe and free from pain.  


While I still ache when I can't stop Cole's agony or afflictions, I know he is surrounded by love and in good hands, which is the most I can ask for, not just for him, but for all my kids.  No matter what they may endure in their lives, whether I am with them physically or not, a piece of my heart will always be with each of them wherever they may roam.  For this week, it means mine will be walking around a few classrooms and in a hospital operating room while I sit nervously in the waiting room, anxiously hoping for answers. 

Exhaling

Sometimes you don't realize how long you've been holding your breath until you finally let it out.

Just as I was getting the two little ones settled in for lunch the phone rang.

Finally, the phone call we had been waiting for.  Cole's genetic test results had arrived.  The chromosomes analyzed were absolutely perfect, not a single mutation was found in his sequencing, which meant he does not have NEMOS.

Now a day later, I still can't find the words to fully express the relief I felt in this moment.

I remember closing my eyes and exhaling deeply, letting go of the worry for the time being.

Until tomorrow we will relax, falling into the comfort of this sigh for a just a moment before the marathon begins and I am holding my breath again.

A New Beginning

I've finally started!  After keeping a journal for a while, I decided it was time to blog.  In fact, I had wanted to do this a while ago, I just needed to get the nerve to actually do it!

So why now?  For those of you that know me, you know the past year has been one of change.  In many ways it has been rather humbling.

My husband and I were blessed to add a third child to our family last December.  How hard could a third baby be?  I mean, we've been through this twice before, we were set and so excited to have a new son or daughter to share in our family adventures.

Once our son Cole was born, all our well laid plans seemed to fly out the window.  From his entrance and unexpected NICU stay to where we are today, waiting for results, his first year was nothing like we had anticipated or experienced with our daughters.

You see, as we all were testing the waters of the new family dynamics, our precious baby boy was struggling and we really had no clue for a while.  In fact, while we currently have some ideas from all his doctors, we still have no definitive answers.

Throughout the sibling adjustments, the appointments, and the waiting, we have had to change so much of how we live, some ways for the better, some not so much.  Friends have asked how we are doing it and just in general how we are doing and to be honest, we take everything one day at a time and are doing alright.  Some days are better and easier than others, but in a home filled with happy kids, laughter, and love there is always some sweetness or comic relief to any situation.

OK, so what is this blog about then?  This is me, stopping for a few moments in all of this, to catch my breath.  What can you expect?  For the most part, a look into our latest adventures and maybe random thoughts I just can't help but comment upon and well, this will be my forum.  And, to be honest, I love to write, especially for an audience, even though this will be the first time I have shared anything so close to my heart in such a public way before.  If you follow, thank you for choosing to be a part of this journey with all its twists and turns as I catch each breath, one at a time.