Wednesday, March 19, 2014

I Don’t Know How You Do It!...You are So Strong…

I have heard this quite a bit over the last couple of weeks and it has made me really think…  How do I do it?  Because sometimes I don’t “feel” very strong… 

As I reflect over the last several years…hold on a second, let’s be for real here…we are really talking about the last SIX years; I feel a rush of emotions… Some of you will read this all the way through…to understand…but some may not…because it is “just too hard”…but I encourage you to read on… to get a glimpse into “how I do it”…  to understand a mother’s heart while raising a child with chronic illness…

At times, I am angry…my son has been enduring intense daily pain for six long years; my son has missed out on kid stuff (my own mom just reminded me of this yesterday, when she realized, because of an article she read about the hospital Parker is treated at, that my son is being treated right alongside kids with cancer …oh how that got me to thinking)…while other children are going to school, my son is home learning algebra from virtual school…  while his classmates are playing sports, my son is doing physical therapy…while his friends are beginning to “date”, my son is home trying to find a friend who will talk to him on Xbox…  While his friends plan field trips, he plans trips to the blood lab…

And…I am sad…while his peers are going to high school events, my son is doing shots and infusions every week…while his friends are growing taller, my son has not grown since 3rd grade… while other moms say good night, I am turning on my son’s breathing machine and praying… as kids ride their bikes and skateboards through the neighborhood, my son wheels his wheel chair…  while others are out and about doing “daily life”; we have spent many days at the hospital…

And I am frustrated…while his friends just go to the movies and snack, my son cannot take food into the movies nor eat what is there because of his allergies…while other moms are planning fun outings and events, I am on hold with the insurance company, drug company, medical scheduling…while other kids plan sleep overs, my son plans hospital sleep studies…

And I am exhausted...  my laundry is rarely put away; my medical to-do list grows every time I think I have everything crossed off; surgical appointments keep me awake and I fall asleep just as my 5:00 AM alarm goes off…  And I work, 40 long hours a week all around this crazy schedule…that is exhausting to the max!

So, I ask myself…how do I do it?  I do it because I MUST.  I do it because I love my son so very much.  I do it with faith and hope and because I am scared that if I pause…I just might just break.  But I know I won’t, because I am STRONG!  Even at my weakest…I know that I am strong…

And I am strong... because I have this young boy who is stronger than any “strong” that I could ever know…  He has faced this disease head on…fiercely, endlessly, and has fought with all his might for his life.

And I am joyful…because my son knows how valuable life is…he sees the good in people all around him…he spreads love through his simple bright, never-ending smile… My son, this young old soul has wisdom way beyond his years…  He gives back to so many, without hesitation…  And in those brief moments that he has the physical strength, he lives life to the fullest and seizes those moments with so much passion that he fills me up with his energy making me believe that anything is possible.

I have such a gift…my son is with me.  There are families…families we know…who have lost their battle to this disease… and I will always and forever cherish ever single moment with all my love and might and will never ever give up the fight.  Logan, Michael, and I do it for him and every family who is strong, because they must be!

Saturday, March 1, 2014

The Gift of Life, Love, and Purpose

Every single day is a gift!  In the spirit of “Rare Disease Day” (which also happens to be my
grandpa’s birthday); we unwrap every gift before us with new wonder.  

A very cold, fatigued kiddo
during walk kick-off
Walk Team Page:  Join Parker's Team (click here)

This week was way busy with much reflection; and we feel certain that we are blessed with Parker’s very wise, compassionate doctors.   And this week we had discussions with 4 of his docs.  We feel like we are on a good path and that Parker has a voice in making decisions.  Needless to say, the decisions continue to be difficult and choices no child should ever have to ever consider.  And yet, Parker does …and he weighs it all out with more wisdom than many adults.

We had our walk kick-off this week and one of Parker’s docs spoke.  Her presentation sparked many thoughts for us.  She spent some time chatting with me after the presentation and helped explain some pieces of the “Parker puzzle” that we never quite fit together.  One of Parker’s meds, methotrexate (a chemo drug), was discontinued during a hospital stay a little less than a year ago.  He was switched to prograf, a drug usually prescribed to help the body not reject organ transplants.  We haven’t heard of any other children on this drug; and we are pretty connected in the “JA world”. 

So, I inquired why this drug is being given to Parker.  She said that it was because he was in MAS at the time.  For those of you not aware of what MAS is…it is pretty much every family’s nightmare that has a child with systemic on-set juvenile arthritis.  We knew that Parker was on the verge of MAS a couple of past hospital stays but we didn't know that he was fully in it and that was why prograf was chosen…and if we were told at that time, MAS was not the word used.  However, thinking back on that hospital stay, it definitely was an intense stay and he was very sick and they did explain the reasoning behind using prograf.  And I think that the doc was probably trying to keep me calm and protect my momma heart.  I definitely was hearing white noise and felt like I was in a fog as I tried hard to focus on her words and focus on my reaction and stay calm.  This is when trust is the up-most importance, because your child is witnessing so very much alongside of you and prayers become your constant inner voice.  For those of you who don’t know what MAS is, it stands for macrophage activation syndrome.  It is severe, dangerous, and life threatening.  It is the number one cause of death in kids with systemic JA.  Here are some links about MAS:

In addition to our walk kick-off, Parker endured two rounds of sacral nerve ablations.  He has two more rounds next week to complete the series of 6 for the sacral area.  This last round was pretty tough on him.  He is a strong little tough warrior.  He was then going to move on to the lumbar region; but we need to stop for a period of time to deal with some endocrine issues first.
The endocrinologist called and his labs and bone-age scans showed that he needs further testing.  So, we are scheduling a day long test day at the hospital to proceed with testing for possible growth hormones.  The “good news” is because he has not yet hit puberty and his bone age is “younger” than it should be, then he could potentially get growth and puberty hormone with good results.  So we are actually hoping he “fails” the day long tests, so that he can get help.  Yes, you read that right.

At first I was upset to hear about another round of “bad labs” but after seeing the rheumatologist Thursday, she explained things in a way we could better understand and that this could really help him.  So, we are going to stay in that mindset and hope for the worst to get the BEST!
Michael and I are pretty exhausted these days.  We are just trying to keep all the balls in the air and if one drops…we hope it is one that we can just do without and let roll away.  So much that is happening is movement in the right direction, it is just constant.  And there seems to be a domino effect.  And then there are my health issues and Logan’s health issues that also need attending to; we must remind ourselves over and over that we can only do what we can do in a day.

And we also must remember those precious gifts:  Parker is off of prednisone after 4.5 years and he is off of morphine after 3.5 years (one of his narcotics).  Parker re-started an on-line virtual class yesterday; and he is determined to not look back and to continue moving forward…wherever it takes him.  He is pushing through his pain and walking more and using his wheelchair less.  He is excited about his and Sadie’s High-5-Club; and they
Sadie and Parker deliver High-5 Care Kits
delivered their first set of High-5 care kits this week and can’t wait to do more!  Our family and friends’ encouragement and love continue to lift us up and power us on.  Our lives have purpose.  We have faith in what is meant to be will be… and it gives us peace and hope for the future.