Thankfulness

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How do I even begin to start naming the ways I am thankful?

First, and foremost, I am thankful for Thomas, healthy and strong, who is alive and celebrating this day.  Last January, the future was clouded and dark and we really didn’t know how many holidays we would have together.  How can we be thankful enough for his life and health?  It is overwhelming.  Included in the thankfulness for Thomas’ life is our continued thankfulness for the Lord’s faithfulness through this journey and His unending mercy.  Never, even if we said it every second for the rest of our lives, could we ever name our thankfulness for His love.

In the wake of our recent trip to Hawaii, I am also incredibly thankful to Make-A-Wish for their generosity and thoughtfulness in sending our family to Hawaii.  It was a trip to be savored and enjoyed, each moment a gift we will remember for many years.  Yes, it was fabulous.  We are generally adventure travelers, more comfortable in the stinking markets of Cambodia than the upscale world of Waikiki but how can one be unhappy in a place where it is 83 degrees everyday and the beach is always warm and inviting?  It must be said that travel can only be somewhat relaxing when traveling with six children.  Somehow, the six children are still there when lying on the beach and wanting to quietly read a book; they don’t magically disappear.  But once the expectation that one will lie quietly on the beach and have uninterrupted sleep is dispensed with, one is free to not be disappointed and annoyed with all of the bubbling life and excitement brought by the six children 🙂  Mark and I had a moment of panic when Titus woke up at 5:30 the morning after we arrived and would not go back to sleep.  We looked at each other, wondering which one would get up and take the screaming baby out of the room, and both agreed this would be the vacation from hell if Titus decided to do this every morning.

Mark got up and took Titus, Theo and Mercedes, who were now all awake, out on the streets of Waikiki in their pajamas and proceeded to have the “best morning of their lives” according to Mercedes.  They went swimming in the ocean and tromped around the city, drinking orange juice and eating pastries.  They will be appearing in the home videos of many Japanese tourists who thought their antics and their outfits worthy of documentation.  Thankfully, so thankful, Titus eventually figured out Hawaii time and woke up at 6:30 the rest of the trip which felt like a real treat after the 5:30 wake up call the first morning.

We ate breakfast on the beach just about every morning which was a treat for me.  I can never get enough of the lapping of the waves and the smell of the salt and the sun gently rising over all of it.  Sipping coffee and watching my kids happily jump in the waves over and over and over again was worth the entire trip.  Our kids thought the fresh pineapple and breakfast sandwiches from Starbucks were the height of all possible treats so we were all happy.

It is nice to know people in lots of different places; we ended up seeing my nephew Samuel and his wife Rosalie, my sister Michele and her husband, Greg and our friend and former violin teacher, Ellie.  Mark and I agreed – knowing people in the places we visit makes the trip more meaningful and rich.  We visited Pearl Harbor with Michele and Greg and Theo renewed his adoration for Uncle Greg.  He would not be parted from Greg’s side and seemed to grasp the big ideas of Pearl Harbor as related by Greg, and wanted to know why we weren’t killing the ‘bad guys’ anymore.  Thomas was fascinated by the whole story and wanted to spend many more hours than we did touring the site. We ended the day with a windy picnic on the beach, watching the para-surfers (?) glide over the waves.

Wednesday brought snorkeling and one of the highlights of the trip for all of us – snorkeling with dolphins.  We all went out on the boat, even Titus and Theo, and the guides were gracious enough to watch the littles while Mark and I got into the water.  We went in search of a dolphin pod and found a group of nearly one hundred.  We jumped in the water as they swam past.  Amazing!  They are beautiful animals and even the kids on the boat enjoyed watching the dolphins jump and spin.

Our activities centered around the ocean which challenged both Mark’s and my opinions of the ocean.  I think we both held a certain fear of the immensity and power of the ocean.  I can safely say I have never desired to sail or boat for extended periods of time, probably because I get seasick but also because the ocean kind of scares me.  We paddled canoes out on the ocean with our friend, Ellie and Thomas, Mark and Sophia got to sail with Ellie’s friends.  Thomas was definitely bitten by the sailing bug and said without a doubt, sailing was his favorite part of the trip.  He even got to be the skipper of the sailboat for a time and tried his hand at sailing the boat through the waves.  Riding the waves on the beach was another favorite moment for me.  The little kids stayed high on the beach as the powerful waves crashed into the sand but the big kids and we loved the huge waves sweeping over us.  I also enjoyed walking everywhere which I don’t think my kids shared.  We tramped around Waikiki from top to bottom and from side to side.  One misses so much in a car, I insisted, and what is the point of being in a city if you don’t walk around it and see it in all its parts?  We came across an art fair, farmer’s market and lots of little stands we would have missed except for being on foot.

I think we all found a deeper love for the ocean and water in general.  The kids have plans for us to paddle our own family canoe and Thomas is wondering when we are going to get a sailboat.  Right after we buy that BMW, we informed him 🙂  The entire trip we thanked Make-A-Wish again and again.  After every meal I didn’t have to cook and when we returned to the hotel room and all the beds were made and when we drove around the island in a car provided by Make-A-Wish, their praise was ever on our lips.  We thanked our friend Ellie, again and again, for all of her efforts to feed us and help us enjoy our stay as much as we could.  She provided us with all of those things that are expensive to buy for just one trip – maps, books, beach toys and blankets and she fed us, all eight of us, two times!  Not for the faint of heart!

It felt restorative and peaceful and every time I watched Thomas run, or jump or swim my heart welled-up with so much thanks for the boy who is here today.  Mark was looking at pictures from Thomas with no hair and a feeding tube and marveling that it is almost hard to remember him like that.  Thankfulness again and again….

Pictures still to come…

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Anticipation

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Looking forward with anticipation is almost as much fun as the arrival of the much-anticipated event.  In less than a week, we will all – all eight of us – be headed to Hawaii for Thomas’ Make-A-Wish trip.   I will never forget the day in the hospital when the nurse who was caring for Thomas that day, in an effort to cheer him up, told him about Make-A-Wish.  Thomas had just had a traumatic experience in the ER where he had received the incorrect feeding tube, a huge feeding tube down his nose.  He had lost weight, he wasn’t eating and we were in the hospital again for the third time.  It was a low, low time for him and he was very discouraged.  When he heard the stories of other children and their wishes, I could see the wheels turning in his mind and it immediately gave him something tangible to hope for in the midst of his discouragement.  I know this is why the foundation exists and their generosity and good will to children facing life-threatening illnesses is beautiful.  We feel incredibly blessed to receive this amazing time together.  What a gift!

In the meantime we have all avoided the hospital and doctors.  Yes!  We are in full swing with school and activities.  Titus is doing his best to destroy my house on a daily basis; I appreciate his contribution to my work ethic.  The girls’ sewing adventures yielded fantastic Halloween costumes and Mark and I scored ours in the operating room.     I am not a big fan of Halloween but we joined in the dressing-up this year because we thought the costumes a fitting symbol of our year.  And then came All Saints’ Day, the day Halloween was intended preparation for.  I love this celebration in the church year, a day to remember the saints who have traveled these very same paths before, who completed the race with grace and perseverance.  I made my kids sing every verse to For All The Saints and we talked about the reality of the unseen, that what is unseen is actually more real, more truly in essence itself than what our eyes perceive.  We read Hebrews 11 and then these verses…

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. (Hebrews 12:1-3 ESV)

Thomas commented, “Oh, so it is like a relay race.  They handed us the baton and now we are running.”

I had never thought of it in that way; I had thought of the great cloud cheering us on, but yes, it is a relay race and we are holding the baton, seeking to complete our leg of the journey.  As the song says, “O blest communion, fellowship divine.  We feebly struggle, they in glory shine.  Yet all are one in Thee for all are Thine.  Alleluia!”  These days of every-day life, no health crises – just the normal friction in relationships, working to understand each other, seeking to lay aside petty encumbrances are the miles of our race.  I think these miles of our race in between the crises are actually the hardest to run with perseverance.  When tragedy and adversity come, God gives equal grace and mercy to sustain and bring life.  I know the same mercy is available to me now in the quiet.  It is only my lack of soul-poverty that prevents me from receiving it.  It is my prayer that in the quiet days my soul would remain open to the love of God, that I would seek with anticipation His presence and ultimately, the completion of the race.  Oh, the joy when finally we see with certainty the true reality for which our souls have longed.

Our quiet days…

Birthdays and October memories

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My birthday was on Sunday.  I keep getting another year older and it surprises me.  I thought thirty-something was for all those old people.  How did I become thirty-something?  Mark and I had a quiet day together because everyone except Titus enjoyed a visit to Uncle Joe and Aunt Mary’s house where they partied the colonial way and learned all kinds of cool skills like de-boning a whole chicken.  So, in the absence of the children, we contented ourselves with omelets fixed by Mark and an episode of Call The Midwife.  We had celebrated in Denver the night before and after all the noise I live in and the ‘noise’ of the past year, quiet is really the best gift of all.

Each milestone and celebration makes me thankful for where we are right now.  Sometimes in the blackest parts of last year it felt surprising to wake up each morning and be alive.  There were times when the weight of it all felt so heavy, I didn’t think I could survive it.  But I am here, at the start of another year in my life, and my family is all here too.  I look ahead with just enough insight to realize I have absolutely no idea what this year holds.  On Sunday I prayed, “Into Thy hands.”  It seemed like the three words I needed to start this new year.  Into Thy hands I place my life and all of those I love.  It is all I can do and it is enough.  I know my offering is safe in the hands of the Father.

October this year has been glorious, filled with the perfect kind of light slanting through the golden leaves.  Just a few pictures of our weeks filled with all the best October gave us.


“You wanna go where everybody knows your name…”

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The theme song from Cheers.  I never watched the show really, maybe late-night re-runs while babysitting but that catchy theme song plays through my mind at random times I least expect.  Pop-culture is a powerful thing.  It was running through my mind as we walked into Longmont United Hospital and the registration attendant called out cheerfully, “Hi Thomas!”  Yes, we were back at the hospital again, this time for x-rays, looking for a broken bone in Thomas’ hand.  Longmont United Hospital is not the place I want everybody to know my son’s name.

This trip to the hospital brought to the surface emotions I knew were lying right below my everyday-functioning mode.  As we sat in the doctor’s office and she informed us Thomas needed x-rays, I nodded knowingly, assuring her we knew the ropes of the radiology department.  And then suddenly, I was crying, asking who would be reading the scans.  In the moment I had a weird out-of-body experience of looking down on myself and wishing I could hug myself.  I knew my emotions were primal, a reaction to all we have been through and not a reflection of the moment.  I felt tenderness for scared me and it helped.  The doctor was understanding and said we could go to another hospital if we would feel more comfortable with another radiology department.  I told myself out loud that it would be fine; there would not be a tumor this time, maybe just a broken bone.

We walked into the hospital and I kept taking deep breaths.  The intensity of emotion surprised me as I sat with Thomas and I could feel the panic rising within me.  When we went back to the x-ray room, the tech brought out a standing shield for Thomas.  I asked if he could wear a lead gown.  Oh no, was her reply, this is all that is needed.  I said I wanted him to wear a lead gown.  No, I was assured again, just a shield for reproductive parts is needed.  Inside my myself I was screaming, “Just put the lead jacket on him.  He has had more than enough radiation for a lifetime.  Put the FREAKING jacket on him!!!”  Outwardly, I asked again if he couldn’t just wear a gown.  Maybe sensing the rising panic inside of me, the tech agreed and said, “Sure.”  Phew.  The tech had enough insight to realize I was on the edge.  At least I didn’t start crying there too.  He got the x-rays and thankfully there were no broken bones.  His glorious game of football with the cousins, his first since cancer, gave him an injured growth plate.  With rest and ice, he should recover soon.

This little trip back to the hospital made me realize our recovery is going to take a while. Yes, our recovery.  Thomas is growing in strength and health daily but all of us are just starting our new journey of walking through memories.  Each new situation that brings to mind our past year reopens the stress and trauma of all we experienced.  I have felt more of those emotions over the past week.  I feel like a glass ornament, the ones that always break, fragile and thin.  I realize I still feel panic over the missed diagnosis and what might have been.  At the same time I am more and more grateful for God’s hand and providence in finding out the truth, the nagging feeling I had that something was not right.  PTSD is definitely a catch-phrase but the reality of reliving trauma is true.  Walking down memory lane is not always pleasant.  We need grace to meet these new situations and the willingness to walk through the pain to the other side.  I knew this part of the journey was about to begin.  It is often after the storm, when there is peace, that a new journey of processing begins.  We are praying for the strength to meet this new path…

Relieved and Resting

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I am relieved and Mark is resting.  A good combination, I think.  His procedure went well today and he is feeling much better tonight than he felt the last time around.  The doctor removed the stent and said Mark’s biliary system looked good as compared to previous procedures.  It doesn’t mean his disease is less advanced just that everything is relatively open right now.  The stent appeared to be occluded so that could have contributed to all of his itching; the stent wasn’t actually improving drainage from the liver.  But it did appear to widen the biliary ducts so in that regard, maybe the last two months were helpful.  We keep praying his liver limps along for a while longer.  Compared to others with his disease, he has gone a long time with his health being quite good, which we attribute to God’s grace and proactive care for his body.  But he has had this disease for at least sixteen years and generally people need a transplant within ten years of diagnosis.  While we are grateful liver transplants are possible, it is certainly not an easy road to travel and we are hoping it is avoided for at least a few more years.

Sitting in the endoscopy prep room with IVs everywhere and monitors beeping and nurses walking in and out, I shook my head at our life.  I really, really don’t like hospitals at all.  Somehow the medical gene skipped both Mark and me; our families are filled with medically inclined people.  There is not one bone in my body that wishes I had entered medicine as a profession.  I have to breathe deeply every time I enter the hospital and wonder that anyone would want to devote their life to working in a hospital.  I am incredibly grateful to those, like my sister, who do but it has never appealed to me.  How odd it is to look back on my life and realize much of my life has revolved around medicine and hospitals.  I have clearly seen God’s grace and redemption in all of it but as I sat and looked at Mark attached to all of the monitors, I felt just tired and weary of this path given to me.  I am learning to be a nurse whether I desired to be one or not.  It is in these moments of reflection that I realize the very small measure of control I posses over my life and the path God has given me.  I may be able to control the outfit I wear but beyond that, not much else.  And then the thinking of the future starts and I feel there is no way to keep going.  But again, again, and again I stop and remember I only have to get through today.

Today we are thankful for our quiet home, our brave and loyal friends who watched all six children today, a good procedure, an itch-less Mark, Titus walking, Thomas’ full head of hair, salted caramel ice cream, soup made by same loyal friends (as if watching the kids weren’t enough), beautiful fall weather, cute skirt, more quiet and more quiet.  Thank you for praying for Mark.

Getting ready

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Our week of normalcy left us all thankful and refreshed, at least it did me.  Tomorrow we head back to Denver yet again, this time for Mark’s procedure to remove the stent that was placed back in August.  The stent did not relieve his itching symptoms and only  served to inflame his ulcerative colitis.  How he has managed to work and be a functioning member of this family is a mystery to me.  He functions on only interrupted sleep; he is usually awake from 1-3 each morning itching and feeling generally uncomfortable.  He keeps reading PSC information about symptoms and symptom management and he feels exactly like the patient described.  And there appears to be nothing to do; the prescribed medications do not bring relief and neither did the stent.  So we pray and ask for relief.  He is our hero, still running his company and managing to be both a husband and a father while he is constantly feeling awful.

Thomas went to our naturopath and stocked up on vitamins to support his recovery.  He is now on a pill regimen that rivals his cancer pharmacy but I do not worry about the toxicity of these pills.  He continues to improve each day.  He has grown about an inch since September.  His weight gain does not seem to be fast but maybe all the food is going into his height??  Please pray for Mark and his health.  He will be at University Hospital tomorrow…

Week in review

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Titus’ new past-time, chatting with the messages on the answering machine.  Is there anything more delicious than a baby chattering on the phone?

These photos were all snapped on Friday after our day of classes.  We waited with my nephew until his ride came so the kids threw a football around the parking lot.  Theo sat and cried.  At least he is cute when he cries.

Is he looking fatter?  Caught in the act of consuming a pretzel.  I think his eyes have more sparkle.

Horseback riding today and lots of ‘wrastling’ as Theo calls it.  Thomas’ port site is healed and he is wrastling a lot!

Theo’s new-do!  No more mop-top for him.  He was feeling pretty proud of his haircut and it was only mildly traumatic for him, unlike the last one which left him bathed in sweat and tears.

I am loving fall.  This fall has been particularly beautiful in Colorado.  Sometimes it gets cold early and all the leaves just die rather than turning colors first.  This fall has creeped in slowly and the colors are gorgeous.  Today was the perfect fall day, rather overcast and chilly and the kind of day where cider, a book and a comforter are the essential ingredients.  Fall always makes me nostalgic.  Something about the light does it to me.  And that familiar feeling of change comes again and makes me sit and remember our lives last year as compared to now.  This time last year we were blissfully unaware of Thomas’ condition although looking back I can remember little things here and there that were signposts of what was to come.  Last fall I was holding a new baby and adjusting to life with six kids.  How things change.

I keep thinking of the ending to Return Of The King, the last book in the Lord of The Rings trilogy.  I actually think of the movie.  Isn’t that terrible?  Of course the books are far better than the movies but in this particular case I think of the movie.  It is the scene where the hobbits, finally returned to their beloved Shire, are sharing a pint together in the tavern.  The entire journey they have looked forward to the time when they would again live in the Shire and enjoy its many delights.  Frodo, Sam, Merri and Pippen sit around the table and looking into each other’s eyes, they know they will never fit into the Shire they way they once had.  They share an unspoken knowing of all the they have experienced and seen together and they realize that no one else in the shire understands what they have endured.  For all the joys of return, there is the bittersweet realization of change.

I have found as each new season comes, the realizations of all that has changed really hits me.  Comments on the radio about cancer, talk about suffering, seeing old pictures all bring a look from Thomas and that shared knowing.  We can look at each other and know without speaking and there is comfort in knowing and being known.  We are undeniably changed, all of us, and thankful for what we have learned and seen.  But it is bittersweet at the same time.  It is a hard knowing.

 And then Psalm 90 comes to mind and it fits.  “Lord, You have been our dwelling place in all generations.  Teach us to number our days that we may gain hearts of wisdom…”  In all the change He remains constant and fixed and He knows above all knowing our story.  He is our dwelling place.

Health

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After a long season of illness, Thomas is healthy.  I think I can say it with confidence.  He almost looks like the boy I knew last October.  With all of the examining and watching of the previous year, I am quite adept at judging Thomas’ weight by the look of his face.  His face gets fuller by the day.  His hair is thickening and he might just need to start shaving when it is all grown.  Or he could have “skills” as Napolean Dynamite likes to say.  He is almost able to run without his feet slapping and his hands are regaining strength.  With everything his body endured the last nine months, it is amazing how quickly his health has returned.  We are truly fearfully and wonderfully made.  It is as if all the vitality and growth were bottled-up inside of him, waiting for the moment to be released.  In the dark days of cancer treatment, it seemed impossible that he would ever be the same.  He is not the same.  But his essence remains the Thomas I knew before, and his changes are of the heart and not the body.  His body bears the scars of all he has been through and serve as a reminder and testimony to his struggle.  He requested and received a picture of the tumor the surgeon removed, a visual of the life-draining he experienced.  I look at it now and can’t believe the size of it nor the fact that it was growing inside of him for months before we knew.  And then, I marvel at the life-saving work of the doctors, God’s unlimited grace and feel humbled that my son is walking in health.

This week feels positively endless.  I have lived with a lost day (or more) to doctor visits nearly every week since this began.  I am luxuriating in the fact that tomorrow is Thursday and I have plenty of time to finish my tasks before Friday.  What a treat!  I have not gone anywhere except for my kids’ school and lessons.  A treasure!  My house is relatively clean, relatively being the key word.  But I will take it.  We even had dinner guests tonight, something I have not had the space for even though I love it.  It all feels like a gift and that is the truth to which I am blind so often.  It is.  It is a gift to be here with all of my children, even when they scream and fight, when the house is a disaster, when I am less than pleasant.  It is all a gift.  We are enjoying these simple gifts right now.  Next week brings Mark’s procedures but for now, we are enjoying what we have.

A week full of possibility

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I am looking ahead at our week, surveying its possibilities and excited for the prospect of no doctor visits.  One week, just to live life together and savor the new Thomas and the quiet hum of our daily routine.  Each week, since school began, has brought its share of interruptions and unexpected appointments.  This week – nothing – except for the usual suspects of school, lessons, laundry, cleaning, cooking, etc…  The new/old Thomas is here.  He is asking for food routinely, running around with friends, complaining a fair amount – always a good sign of life, and attacking his school work with zest.  The last few weeks have definitely brought their share of adjustment for all of us as we move back into something a little more predictable.  Sibling squabbles and short nerves seem to be a symptom of finding a new equilibrium.  Thomas is fitting back into the chore routine and life of the household and his presence as the big brother is once again being felt.  So, there are adjustments and upheaval and a sense of trying to fit into a sweater that is now a little tight.

I find for myself that same sense of outgrowing the old sweater, needing something new to put on.  All the things I love and that bring life have, for the most part, sat dormant the last nine months.  Practicing the piano, except for music at church, has been nonexistent since January.  Cooking, something I love, has turned into a very utilitarian exercise through the past nine months.  Surviving doesn’t leave much room for anything else.  Now in the absence of survival- mode these old joys are resurfacing again, bringing fulfillment in their pursuit but also the feeling of ineptness and lack of growth.  It’s the feeling one gets going through one’s closet, pulling everything out, and still not finding anything that really fits.  We are all feeling the rub of ill-fitting clothes and wishing for the perfect outfit.  I know we will find it; it takes time.  Just as there was no rushing treatment or grief, this can’t be rushed either.  We must walk through it, knowing we will find a new equilibrium and new patterns of relating and being together.

As I was sitting in church today praying, I realized the curse of self-sufficiency was creeping back into my heart, the illusory idea that I really can control most things in my life.  I realized I was returning to the under-lying assumption that most things were within my capabilities to handle.  Cancer helpfully destroyed that illusion.  In the times of grief and pain, I knew with absolute clarity very little was in my control and I was in desperate need of God’s presence.  I came with hands opened and needy and a heart empty of pretension.  How easy it is, after a few weeks of normality, to return to the same illusion of control.  Frightening.  But, grace is found in remembering.  I can remember and know the truth.  I know my need and in my need I can return and let go of the illusion I hold so tightly, for it is only an illusion.  I know the comfort found in opening my hands, so I opened them as I sat in church today and turned again.  Always the turning, always the letting go.

Growth.  We are all experiencing it here at the Maedas, literally and figuratively and as much as I would like to stand still and stop, keep that old sweater I love so well, it is a principle of life in Christ.  Always.