A Summer of Respite

During the darkest moments of the spring, there was little time to think about what summer might look like.  It was a daily, sometime half a day at a time, battle with Thomas and his pain.  It seemed as if the waves of anxiety and fear were pummeling us, day after day.  In the lowest times, it wasn't forward that I could look and to allow myself to glance back was to be haunted by what used to be.  

Now, I find that I am holding my breath, afraid to become too comfortable in what has turned out to be a huge and powerful change for Thomas.  A new med, a new hope, a possible calm on the road to what was turning into a very beastly disability for my sweet boy.  This summer found us able to live somewhat of a "normal" summer life, full of days of swimming, tubing, and learning to wakeboard behind grandpa's boat.  Piling our overpacked bags into the sailboat I had moments of absolute amazement that we were even able to pull off such an adventure!  To be able to leave, when at times I had questioned whether or not we could ever leave our home again?  What an amazing blessing it was to sail away, to have the freedom to leave the confines of our home, the only safety we'd had all spring, to once again be able to seek out the unknowns and new adventures that I'd almost given up on.  Still, though, there is an ever present lurking in my mind, a voice that threatens to steal my joy at the blessings of this summer.  A day when I have almost put the voice away, only for a headache to appear, to show its nasty, snarling head, and once again I feel the growing waves lapping at the shore, pulling for me.  How desperately I want him to be free of this, to live life without the pain and the worry.  How many times has he cried out that he doesn't want this pain, why must they come again and again to steal his time of play, his hours of precious activities.  Each time is like a slice to my body, pain that will scab over, but is jarred fresh time and time again.  We are in counseling, and I would love to say that it's for Thomas, and Thomas only, but I know that I am in turmoil, too.  I have felt waves of anger wash over me when someone has dared complain about a mundane issue in their life.  I want to rage and throw my hands up, imploring them to cherish their healthy children, to not waste a moment of their lives on such trivial matters.  Instead, I must remind myself that this is the road that the Lord has placed in front of me.  It is not the road that I would chose.  I would be lying if I said I do not beg and plead for some assurance that it will end, that there will be some time when this road will turn once again peaceful.  But for now, it is the journey we are on. I believe that God is bigger than any of this.  I must believe that Thomas will come out a stronger man because of his experience.  I pray that John and I can guide him through this so that he may see himself more powerful and stronger because the journey was not easy, but it was beautiful and blessed nonetheless.

Still standing

Here it is almost May.  How I am thankful that February and March have long passed.  I feel wounded by those months, by the tears, the fear and the frustration.  As I sit here trying to gather my thoughts for an update, I find myself repeating something I saw a friend post a while back.

Peace is the result of retraining your mind to process life as it is, rather than as you think it should be.
-Wayne W. Dyer

How many times have I tried to go back to the months of fall.  The days of minor inconvenience and silly frustration.  When little squabbles and irritations seemed a bigger deal than they do today.  Plans and dreams stretched across the oceans and far off adventures to be experienced.  Today, a trip to Seattle seems like a stretch for me, where the comfort and security of home feels much safer and being brave and adventurous seems laughable.

Fears and insecurity grow when I look back in time, when I find my mind wandering backward.  There is no comfort in that.  I need to focus instead on what is now, what beauty I have in the here and now as we move forward.  Finding peace in each day as it's given, instead of what I think it "should" be or what the world would say is normal.

We find that there are still many unknowns with Thomas.  It doesn't feel like we have made much headway with the medications meant to prevent the headaches, and yet just last week we found we hadn't run out of options for medications that we can use.  He hadn't needed his usual daily rescue as he typically does.  We can only give him rescue medications 3 times a week.  On school days, we typically find he takes his meds Monday, Tuesday and Wednesday, leaving us without options to treat a headache/migraine for the remaining 4 days in the week.  That is a very scary place to be.  This happened two weeks ago when on Thursday night Thomas was in extreme agony with a headache blowing into a migraine.  We were out of options for meds, but we could not stand to see him in such pain.  Thankfully we caught the neurologists before they left for the night and we were given permission to give another dose of medication.  If it hadn't worked, we would have had to take him to the ER for stronger meds that we can't have access to.  He still isn't going to school for a full day, and we are thankful that the last several weeks have seen him able to go half days for most of the school week.  If we run out of meds by Wednesday, though, Thursday and Friday he is usually home as we try to keep his body calm enough not to have a headache.  How do you do that with a 9 year old boy?  When someone has the answer, let us know.

Peace is the result of retraining your mind to process life as it is, rather than as you think it should be.

Short focus, thankful for today as it is......and hoping for a day when pain is no more....

Sometimes a half day at a time...

This week hasn't been much better, although we did manage to break the migraine cycle...we think.  Although he had some anger outbursts from what we think was the steroids he was taking all weekend, the headache was gone by Friday morning.  The other big challenge we faced was somehow getting Thomas to learn, very quickly, how to swallow pills.  Up until now he has taken liquid meds.  Now, in this new territory we find ourselves in, he must learn to take the big boy pills.  And we are working on a half day at a time.  Can we get through the  morning without a headache?  What will the afternoon look like?  Can he go to school?  Maybe the morning?  Maybe not the afternoon.  Working on half days at a time.

On Wednesday night, I went to Haggen to figure out all the new meds that Thomas needed to take.  I scrambled to find the right supplements that they wanted us to try, and had to ask the pharmacist to give me some advice.  Then I filled the prescriptions, which after spending nearly $100 bucks the other day, now ran me $77 for 7 pills of the new migraine rescue med.  Thank goodness for insurance, right?  With my hands full of medication, I went down the side aisle to find the candies and other recommendations to get Thomas "practicing" swallowing his pills.  Didn't know beforehand that M&Ms and tic tacs make good practice.  I bought pudding cups and yogurt cups in various brands, then headed down to the bread aisle.  I looked around....why is this store teeming with people?  Why are there so many dudes in the meat section holding bottles of wine?  Why is there a "buzz" to this place?  And please tell me, why is everything pink in this bakery section?!!!!!

Ahhhh...as I stood there on the outskirts of the bakery and looked around, I could see various people milling around with red roses and wine bottles.  Parents with their children buying up the pink and red frosted cupcakes and sprinkled sugar cookies.  Men with flowers and balloons billowing out of their basket, browsing at the fancy chocolates and truffles and dark chocolate delights behind the display case.

It suddenly dawned on me....tomorrow is Valentine's Day....and here I stood, with my arms full of medication, without a clue, without a present or a thought to the special day.  And I had to chuckle at it all or I would cry.  In the midst of crisis, with my heart more heavy than I'd ever felt, there was no time for the silliness of this holiday.  Sad, yes, but nothing to do about it now.

I hurried out of the store with tears in my eyes, wishing for answers, hoping that on Valentine's day we could celebrate not just a holiday of love, but of a new beginning.

Chronic....or Not?

In all honesty, recent events have shaken our family.  It has stripped it down to hours and days, not months and years.  Although January was a tough month for illness in the family, with Cooper even visiting the ER with dehydration from a terrible stomach virus, February has been difficult in many ways.  February has seen us struggling terribly with the complexities of an uncertain diagnosis for Thomas.  The mystery of migraine headaches.

Thomas was diagnosed two years ago with migraine headaches following testing including MRI and vision evaluations.  We explored our options for a pediatric neurologist affiliated with Seattle Children's Hospital, and felt confident in our selection of Dr. Plawner, who works through the PolyClinic in both Northgate and Downtown Seattle offices.  The diagnosis came, and wasn't that shocking to us, since migraine issues run on both sides of the family.  There was joy in that it wasn't a different monster lurking, such as brain cancer or other type of tumor causing his headache pain, and we were still optimistic that his headaches would be controlled and life would move on.  Life settled down again with a nightly dose of a preventative medication and with a "cocktail" of rescue meds dictated by protocol developed by Children's.  We had the school on board and Thomas was getting used to realizing when a headache was brewing and what he would do at school when that happened.  There were some hiccups along the way, such as when a teacher would want him to "wait it out" or a substitute teacher wouldn't respond as quickly to him leaving class for his meds, but we continued to stay in close contact with the school and work through any of these situations with a good amount of confidence.

Two weeks ago found us in a very scary place....unrelenting migraines and daily headaches.  He missed school, again and again, and I couldn't get any of our current meds to "break" the headache.  He went to bed moaning and tossing around with a migraine, woke up in pain, with a migraine to follow that morning headache pain. He couldn't function, couldn't do his school work that he continued to fall behind in.  He looked sick, his eyes droopy and dull, his face pale with darkening circles under his beautiful blue eyes. We were medicating, and I realized we were medicating too much for this to be normal.  Well into the second week, in which we could do little for Thomas, I contacted the neurologist again.  I was researching the web for information, searching for answers to our new situation.  As I kept reading, the stories became more and more menacing.  Discussions about medications with unacceptable side effects, medications that won't work, failures in the school setting, debilitating, chronic pain, disability plans, new treatments and clinical trials, international medications that aren't available in the United States yet, questionable treatment options, etc....

Self talk is a very powerful thing when confronted with such darkness.  Time and time again I had to bring myself out of the situation and focus on anything positive at the moment.  The hope that Thomas isn't one of the children whose headaches can't be controlled.  The hope that there are still a lot of options out there to try.  The hope that just because one medication doesn't work, it's not the end of hope for a normal life for him.

We were fit in to an appointment with the neurologist down in Seattle.  Unfortunately, but fortunately, he was in the midst of a migraine when we were in the office.  At one point, I quite clearly pointed out, "THIS is what he has looked like for two weeks now.  THIS is not my son."  He was tossing about under my dark black coat on the table, the lights to the exam room turned off to try to help his growing pain.  She was able to see him in this state, and was clear with us that he was in a bad way, a bad spot.  But with that, she also clearly stated, "We will get him through this."  And that comment played itself again and again in my mind.  It's funny how even such a simple statement can be a lifeline.  She didn't expand on it much.  She didn't offer the quick fix.  She didn't throw out percentages, or timelines, or other hopeful information.  Such is the way of the migraine.  There are no definitives.  There is no "magic pill", or if there is, it is very individualistic and quite elusive.  You are lucky if you find it.  You may stumble upon the magic combination, oftentimes struggling through years of trial and error on other combinations of medications, other types of hope in a bottle.

We left the office after a powerful shot of a Torodol and new prescriptions to fill.  A new round of steroids, a new preventative med, a new shot at a rescue med.  "We'll blast him, " the doctor said, "and hope that we can get this headache cycle to "break"."  There are also no clear paths to "break" a migraine cycle.  You HOPE to stay out of one, frankly.  Some last weeks, some last months.  Some people go to the ER time and again to take powerful meds to try to break the cycle, or give just a bit of relief.  Although she didn't bog us further with any of this info, it's out there to find.  People have their stories.  They talk about their struggles with their children.  They talk about the loss of control in their lives and their endless quest for something that works.  Its frightening, it's life changing,  its a surreal place to find ourselves in.