Love Connects Us

Epcot Perry
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Logan and Dad at Concert

Raising a child with chronic illness has taught us much.  We have learned how to reflect on our family strengths and weaknesses.  Ironically, I have learned that my biggest weakness is also my strength.  Sometimes I “care” too much.  Caring leaves me vulnerable, but it also makes me human. 

I care about all children, all families, people, my family, my children…  Caring has made me who I am and who I will become.  I am thankful that I care, but caring means we open ourselves up to multiple emotions and that can include not only joy and love, but also hurt and sadness. 

Recently, I have been deeply hurt.  I have learned that there are some, who we thought cared about our brave children, but have acted with cruelty.  A small group has been bullying and making fun of parents and their children with JA.  The sadder realization was to learn they too have children with JA.  I have to admit, this really shocked me and it absolutely choked me up as I held back tears…tears for every family and for the poor mom who witnessed meanness against her own child.  My instant reaction was to break away from all social media and groups and focus only on myself, my husband, and my children.  For several weeks I couldn’t even post, blog, or communicate with others about this because I “care”…I have always cared what others think, feel.

I choose to be open to my emotions…feelings drive me forward and push me to be determined to overcome.  The depth of my emotions continue to teach me many lessons:  judgment is inevitable; challenges present themselves; and we will fall, but we can pick ourselves up.  As I ponder these lessons and as our family faces our challenges, we allow ourselves to feel and then let go…moving through these emotions brings a sense of peace.  Our peace fills us with strength and our love propels us forward.  And as long as we act with love in our heart, it may leave us vulnerable, but at least we are being true.

Because our family cares so much, we are given the amazing and powerful gift of love.  We love each other dearly, but this love also connects us to others.  It is with others that we can battle this incredibly beastly disease and still enjoy life.  We are so incredibly thankful to the many that have rallied around our family. 

Gaming with Troy during weekly infusioon

I will admit, the beast of JA does try to stop us…and it can feel relentless at times.  But after we move through the appointments, tests, treatments, and therapies we try to insert a little fun.  Sometimes that fun is within the walls of our own home…other times we make an outing of it. We treasure these moments with each other, family, and friends.

I am happy to report that Parker’s labs are much better and overall his strength is getting better and pain is less many days.  We are slowly decreasing some of his meds and increasing his activity level.  We are still battling pulmonary issues and we do have a few set-backs from time-to-time but overall there is improvement and we will continue to support him as he takes baby steps forward so he can begin to run circles again.  He has a goal to go back to school full time next year, as he enters the ninth grade. 

Logan went to the orthopedic doctor and he does have mild scoliosis.  We will monitor it and he is starting PT next week.  Logan has just completed 10^th grade and on Monday he will be a freshman at the community college.  He has chosen to take 2 classes this summer and will continue to be dually enrolled for the rest of high school.  This is something he really wanted to do and he is so thrilled that he went down to the campus today to check it out and find where his class will be.

You are my master,
 I love you so!
SQUIRREL

We are grateful to experience the love we have.  Love is such a gift.  It strengthens us and fuels our dreams and hopes. Love connects us.   I really do believe that together we are better! 

Our Children Are Our Hearts…

Our family is processing a lot this week.  And we know that the love around us will continue to propel us forward.  Michael and I love our boys so very much and we are thankful to have each other.

Parker is making gains.  But I am going to be completely honest here… he has a tough battle that doesn’t seem to end as much as Michael and I want to take it all away for him.  His body did not do so good with the sleep study and they had to put on the mask in the middle of the night.  As a mom, laying in the dark listening to Parker take his breaths, waiting for 2:00 a.m. to pass and hoping it would come and go was heart wrenching…then that door opened and mask and machine went on… my world turned black.  But then a remarkable thing happened, I realized that he was sleeping calmer, deeper and a total peace came over me. 

This child has been struggling for years with his sleep.  We always thought it was due to his intense pain, but his inability to breathe correctly has totally interrupted his sleep and I felt so fortunate that he was alive and breathing.  For the previous month he had been sleeping the entire days away…one of his newer medication was too strong for him (and has since been adjusted)… and this is going to sound “dramatic” but all I could think was that Parker was scared too that past month and he had said to me several times, as he lay with me in bed, that he was scared he would fall asleep and never wake up.  That is a very difficult thing for a child to process and yet, here he was, talking about it and looking for reassurance that of course I gave him.  Many nights last month, I lay awake as he slept…and I just listened to him…making sure he was breathing.

We now know that he needs a bi-pap machine.  It is being delivered Monday.  His breathing was worse than we or the rheumy thought.  He is having difficulty breathing in and out while he sleeps, thus the “bi”-pap need.  We are so glad that we were referred to pulmonology.  He will have pressurized air pumping in so he can get better oxygen and also pressurized air to push the carbon dioxide out.  We are incredibly hopeful about this machine.  Not only will he sleep better but Parker will get the rest that he needs to heal better and have more energy during the day.  This is completely huge!

We also just found out that his vitamin D levels were still too low.  Despite the fact that his rheumy had tested him over a year ago and put him on vitamin D with calcium his body had a mind of its own…he has continued to lose vitamin D.  When levels drop, it has been described as feeling like bones are breaking…feels a bit like this disease has been totally torturing our child…thankfully now he is on even higher doses of D and of calcium.  So this is another step in the right direction.

We also are on the hunt for a PT (he has been back on the “wait list” way too long) and he will be starting aqua therapy.  And yesterday he had his first biofeedback therapy visit.

Finally, we are still thankfully seeing progress with Parker since he has been on rilonacept.  Unfortunately, our “medicine” insurance is now denying it.  His doctor is appealing and even the “health” insurance has now gotten involved to help advocate on his behalf, since they know that if he doesn’t have this med he may regress and land in the hospital…which of course would be a huge medical expense.  We are staying hopeful that in the next couple of days we will hear good news because Parker’s labs have been better than they have ever been and we just cannot imagine them denying this. We are praying hard and hoping big…

So that is “scoop” on our incredible, resilient son, Parker.

Some of you know that Logan, Parker’s brother, has migraines... well his neurologist referred him to Parker’s pediatric rheumatologist to be checked to “rule out JA”.  Last Tuesday was the big day.  Parents know in their gut when something is not quite right, but we were so holding out hope that we just were completely wrong.  Logan has enthesitis-related juvenile arthritis which is considered a spondylopathy.  Click for more information...

This form of JA is less aggressive and dangerous than Parker, but none the less it is yet another autoimmune issue that our family is battling.  Logan also has some other issues…weird eye and skin issues and one side of his back is higher than the other.  The doctor is running many panels of blood to look at other possible autoimmune diseases.  She is also referring him to a pediatric orthopedic doctor for his back.  His right shoulder blade wings out considerably and she said this could be a developmental issue, a form of scoliosis where the spine twists, or some other issue.  Of course we are all thinking:  is this tied to his incredible migraines?  So before he starts PT we are going to get this checked out too.

Our family is working hard to focus on gains, life’s gifts, and our incredible relationships.  If ever there was a time to be thankful, it is certainly now.  Tomorrow is the Arthritis Walk and with every single step we take and every turn of the wheel chair wheels, we will be hoping for a CURE in our near future.  Now for both our boys and me…last night my amazing, funny, loving husband said he wants to sing me a Sesame Street song and he starts singing “One of These Things is Not Like the Others”…Of course I couldn’t help but laugh…so whether we are laughing or crying…I am so glad we are doing it together.

 Walk Page:  Purple Playas