Balancing on the Newest Wave of HOPE…

Balance…when you look up this word you see synonyms and definitions such as:  equilibrium, steadiness, stability, poise, assess, weigh, compare, evaluate, consider…

I am someone who tries to maintain my “sense of balance” in both my professional and personal life.  I strive for balance because it helps be “feel” stable.  When I am “balanced” I am happier, can achieve more, and am better connected with my loved ones.  When I am balanced, I can easily “give to others”, which I love to do.

If you know me well, you know that I also try to insert a balance between the attention I give to my children and what I expect from my children.  Balancing my affection, chores, time, and family contributions, etc…

And then there is a balance with my husband…Balancing our time together, tasks, and parenting.

I think, for the most part, our family was pretty balanced prior to our son’s on-set of his systemic juvenile arthritis.  I am thankful for that because I believe that our ability to find balance has truly blessed our family with the ability to cope, comprehend, problem solve, and continue to love.  But it has also allowed us to ride the waves…

My life is no longer balanced.  Our family life is no longer balanced…at least not in the sense of what our family use to be.  And certainly not who “I” use to be.  I have known this for some time, but I really REALIZED this, this week.  There is one person in my life that, unknown to her, has helped me realize this reality because she touches my heart professionally, as a friend, and as family.  When I process aloud with her I cannot stay balanced.  Even in typing this and recalling our interactions, I am drawn to tears.  She knows me fully, through all aspects of my life… she knows that I can ride the waves but for some reason, when I am with her, the wave comes crashing down with a huge splash and disperses and I temporarily lose my balance.  She can see the storm in my life…and I have trouble focusing on just one aspect at a time…probably because each decision influences how I remount that wave and balance.

I do feel like we are on the right track with Parker’s treatment.  For the first time, we have seen powerful progress…but I was reminded this week how quick things can change.  And I am keenly aware of how fragile he is.  We had a set-back this week and it really hit me hard.  I panicked…right in front of my dear friend.  I had to walk away to the privacy of my car and I lost it.  Completely and fully lost it.  I have been trying so hard to grab onto our moment of progress…to stay positive and optimistic…Parker’s pain had decreased, his enthusiasm in his voice had returned, his attendance at school had increased, he was catching up with homework, he was moving better and we were balanced again.  My husband and I were getting tasks done, we were connecting with each other, we were catching up, and able to focus better on work.  Logan was chitter chattery, sharing about school, dancing around the living room, talking about his girlfriend… We could all spend more time with each other, and he loved seeing his brother feeling better.  All of us riding the wave together and fully enjoying our equilibrium, steadiness, stability, poise, and ability to assess, weigh, compare, evaluate, consider…  and oh, did we begin to “consider”…

But rather than riding the kind of wave that slowly begins to roll into other waves and eventually becomes that nice calm bobble where the sunlight bounces joyfully…we crashed.  I crashed.  And suddenly I was drowning in my emotions.  Parker’s pain was increasing, his hips and knees were flaring (these joints only do when bad stuff is about to happen) and intense pain increased in his usual joints…ankles, back, neck, wrists, shoulders, hands, and wrists.  And the fatigue was back with a vengeance.  He was back to missing school.  And yet, we still went to OT and PT this week and both therapists could see the change.  And as the PT was working with him, he started a marble like pattern all over his body.  It was so bright and intense that she actually stopped her therapy and sent us home.  He then got a red rash on his cheek and chin and slowly the rash and marbleing went away.  He was left with a rough feeling on his skin across his chin line (nothing you can see, but it feels like a man’s rough beard and is still there).  This hit me hard because he had his enbrel, but he was not bouncing back like the weeks prior.  All I could think was his disease was going systemically through his body again.  I was scared.  And I think that Logan was scared too…he got a migraine this week, as all this was happening.

Parker had his infusion yesterday and we met with the doctor and nurse practitioner.  They threw me a life preserver, as they explained that they really felt like Parker got an infection and most likely it was parvovirus (a.k.a. fifths disease).   It was not his disease going haywire again but rather being triggered by the disease.  I was so very relieved.  I know that might sound crazy but I was...because what it meant is that we were still on the right track with his meds.  I did ask if he should even be going to school and they said yes.  But they are carefully tracking his blood.  If his counts go below 500, then they will immediately let me know, so that we can keep him home.  He needs school…it’s his “balance”…

But we also discussed some other things…they felt that the Actemra (IL-6 inhibiter) has done a pretty decent job with some of his systemic symptoms and issues.  It has lessened his rashes and fevers.  His blood work also looks tons better.  It has also helped with his horrible fatigue.  However, it has not done a good job with controlling the inflammation and pain; thus this is the reason for the Enbrel (a TNF blocker).  So because we have done a good job at stopping the IL-6 pathway, the systemic JA (a very smart disease by the way), started revving up and going down that TNF pathway even harder.  By blocking that pathway too, we are finally seeing the swelling and pain decrease.  However, both these biologics compromise his immune system.  The doc shared yesterday some new news that once again has begun to boggle my mind.  She thinks that Parker is starting to have (or has had) overlapping syndrome…I am still trying to comprehend…but he may have more than one JA disease…they pointed out that he has symptoms of other JA diseases in addition to systemic…like the myositis (weaking of the muscle enzymes)and the psoriatic issues (nail pitting/lines and possibly now the roughness in his skin).  I don’t know where this particular wave will take us but we are adjusting meds again…

So I go back to my sense of balance…my work is definitely not balanced right now, in fact I am having to decide what do I REALLY want to do, while keeping in mind that my choices will affect the balance in my other parts of my life.  And balance between my children definitely doesn’t mean equality but rather that we, my husband and I, are present and connected and helping them when they each need it most.  I know some probably think I should stop working.  I have gone part-time, but I need to work.  For several reasons:  one, for our health insurance; two, for the income to pay for medical expenses; and three, for my “sense of self” and to give back to my community.  But I do have some choices to make…

So, I reflect today…And I thank my friend, my colleague and my “family” for allowing me to just “be” in her presence…  I was drowning a bit but today I have surfaced and I am riding a new wave of HOPE…As I get better and better at “balancing”.