Ask Me Why I’m Bald

This is the question my girls are hoping someone asks them.  Mostly, they are eyed with veiled suspicion (especially when they’re just with their father who also sports a shaved head) or quiet sympathy.  This morning, on a quick trip to the grocery store, Mark, Sophia and Eva found themselves the obvious recipients of stares.  They decided they looked like adherents to some cult.  Oh well.  Every opportunity they get, they share.  And I can tell you the mornings are much easier around this house and the showers much shorter.  All perks of shaved heads.

Here are some more pics from the day shot by our fabulous uncle who documents our adventures religiously.  Thank you again to all of you who supported my kids.  

ImageImageImageImageImageImage

Advertisements

Tears, razors, friends or One Way to Spend a Sunday

Tags

, ,

IMG_0184Head-rubbing, back-itching and hat-wearing have occupied our evening.  The girls can’t get over the feeling of closely-shorn hair but in the end, It was all worth it.  I knew the tears would flow as soon as the razors started.  They did, as I watched my brave kids sit while their long locks of hair fell to the ground.  Just as Sophia’s hair was being shaved, her friends from our school group showed up to cheer her on.  Tears covered her face but a smile poked through while she mouthed hello to her friends.  Everyone cheered the kids on as they finished and when they were done, hair covered the ground, a testament to their courage and compassion.

All together over 40 people had their heads shaved at the event and the event raised over $12,000 for research.  A mighty effort and one which we all felt privileged to witness.  Hair is such a powerful metaphor.  In the Old Testament, shaving one’s head always communicated deep emotion, repentance, or longing.  To be bald is to be without covering.  Already the girls are complaining of the cold!

As they are without their hair, I am praying the Lord reveals to them the meaning of true beauty, the realization of other’s suffering and the deep peace of knowing their sacrifice of love has benefitted others we will never know.  Thank you for supporting them in this adventure and may many children live through our combined efforts.  Bald is beautiful!

Back again

Tags

,

This is a weird feeling.  I haven’t written in this space for months after writing nearly every day for almost a year.  And it has been good.  Life has returned, full and vibrant, and I am back to being the mom of six healthy, active, energetic children and wife to a very itchy husband.  More on that another time.

So why write again?

Well… my kids are doing something very brave and exciting and just in case anyone is still reading this, I wanted to let you know.  My four oldest are shaving their heads to raise money for cancer research.  We had talked about doing this last year but maybe the whole experience of being bald was still too raw for Thomas.  On Sunday, our dear friends the Alvarados, and their lovely sister, will be hosting a St. Baldrick’s Shave-A-Thon.  Thomas is brave for facing the memories of baldness but I have to say, my cheers are being raised for my girls who are willing to do this.  Hair grows.  They know it and I think they are excited to show their solidarity with those suffering in cancer treatment.

http://www.stbaldricks.org/teams/mypage/87392/2013

This is the link to my kids’ page for raising funds.  St. Baldrick’s is the largest funder of research for childhood cancer outside of the US government.  We know Thomas certainly benefitted from years of research into his disease and we pray and hope for kids battling less treatable cancers for a similar happy outcome.  Please join us in helping St. Baldrick’s help those who are finding new cures for cancer.

Here we are, looking spiffy, at our Easter celebration.  We’ll post an after picture too, I promise.

Image

 

January – one year later

Tags

, , ,

This space has been quiet over the past month as we relished the results from Thomas’ scan and enjoyed Christmas together, healthy and thankful.  I have a love/hate relationship with blogging as I have discussed in detail before and with the all clear news, there didn’t seem to be much to write since my original intent had been to keep people informed on Thomas’ progress and health.  I am assuming it is mostly my close friends who choose to check in here now (hi friends!) so here are some of my thoughts as we approach the one year anniversary of Thomas’ diagnosis.

Most of December I found myself remembering the events from last year – the things we did, the people we saw, the events we participated in – all in the light of Thomas’ diagnosis that was coming, even though we didn’t know it at the time.  I thought of how he had acted last December – not himself, edgy, irritable.  In the moment it is so hard to know what is what and I realize that only God’s grace got us through that time. It is almost harder to remember the time when we didn’t know what was happening with him and how it was almost missed than to think of his treatment.  My dear friend asked me today how I was doing with the anniversary of many momentous and traumatic events approaching.  This week I actually haven’t thought too much about it. I realize the anxiety over knowing now how much we missed is present but at the same time, I also realize God’s grace to me.  He gave me the intuition to know something was wrong even when we thought we had a clear diagnosis.  My stomach flips when I think about what could have been but then equal peace floods over me as I realize Thomas was held in God’s hand even when we were clueless.  I do think of the enormous tumor growing and taking over Thomas’ body while none of us knew a thing.  And then I stop and marvel at how wondrously we are made; we take breaths and our hearts’ beat and we take it all for granted until something suddenly stops to make us aware of the miracle it all is.  It is all simply a miracle.  Each breath.

I look at Thomas and I almost want to cry.  He recently said his best memory of 2012 was when I sang “Turn Your Eyes Upon Jesus” before he went into surgery.  Oh my.  I cried, thankful for this glimpse into his soul.  Nearly everyday I have at least one moment when I can’t believe any of it happened at all.  I look at him with his full head of hair and I find it hard to recall the lethargic, vomiting boy from only a few months ago.  He regularly bugs me for food and I am happy to say I haven’t resented it once, recalling the agony of trying to get him to eat through all those months of chemo.  Just as in cancer, life doesn’t stop in health. So in the midst of these rememberings and recollections, Titus still screams, the laundry mounts, Sophia and Eva fight, music is played, Theo and Mece giggle, meals are prepared and eaten and life goes on.  I knew in those early days of treatment that the rhythm of our lives was a form of salvation for me even though it seemed overwhelming and unmanageable.  That I had people to care for was a grace.  And now too, the rhythm of life, of simple, daily routines, carries us on as we walk through the memories and experiences of January 2012.

I know this coming year will hold unexpected moments of grief and pain as I recall all we endured together.  But to have Thomas alive and living in strength assuages the pain.  It comes but almost as soon as it comes his life springs up before me and it washes away, kind of like riding waves in the ocean.   I also know in a tangible way the Lord’s presence through all the trauma – His nearness and love that I experienced in a more profound way than I ever have before, that I can do nothing but cry.  I am crying now as I sit in a cafe in Denver, writing.  Oh well.

In another deep and unexplainable paradox, facing death has removed its power.  For now (I am sure I will face it again) the fear of the unknown, the future, the bad things that might happen, are all gone as I realize the fleeting grip we have on anything in this life.  Somehow coming to the end of control frees me to hold on to the only constant in my life – God.  In Him all things are held – the future of my children and all whom I love.  There is peace in accepting I don’t know.

I look forward to this week of remembering and I think that whether in sickness or health my aim is still the same – love.  Last year we faced our deepest fears and found the Lord deeper than the darkest hole.  This year, we look forward to health and know the Lord is more satisfying than our best moments.  And my aim is this….

Invoking the Holy Spirit is a matter of asking the third person of the Trinity to enter my spirit and bring the clarity I need to see where I am in slavery to cravings and fantasies and to give me patience and stillness as God’s light and love penetrate my inner life.  Only as this begins to happen will I be delivered from treating the gifts of God as yet another set of things I may acquire to make me happy, or to dominate other people.  And as this process unfolds, I become more free – to borrow a phrase of St. Augustine – ‘to love human beings in a human way’, to love them not for what they may promise me, to love them not as if they were there to provide me with lasting safety and comfort, but as fragile fellow-creatures held in the love of God.  I discover how to see other persons and things for what they are in relation to God, not to me.  And it is here that true justice as well as true love has its roots. – Archbishop Rowan Williams

All clear

Tags

, , ,

This is the news we have been waiting to hear.  Thomas’ lungs look completely clear, not even a pin-sized spot remains.  We could not have received a better Christmas present on this Wednesday before Christmas.  Thomas’ relief is great.  The last week has been emotionally difficult for him as he contemplated another scan and the possibility of unwelcome news.  He repeatedly told us, “I just don’t think I can go through it again.”  We both felt so much weight for the weight he was carrying.  It was another point for him to turn to the Lord himself, laying his burdens down and choosing to look to God.

During Advent, our church has been singing songs from the Taize community in France.  Last week Thomas played viola with the other strings during worship and as we practiced the songs together, one song particularly stuck out to me.

In the Lord I’ll be ever thankfulIn the Lord I will rejoice.  

Look to God, do not be afraid!  

Lift up your voices the Lord is near, lift up your voices the Lord is near

I was singing it with Thomas and we were both reminded to look to God and live without fear.  We finished practicing and went to bed.  I forgot something in the kitchen and walked back out after everyone was asleep.  I heard Thomas singing the song over and over in his room.  It made me cry, hearing him remind himself of the truth.  Truly, we are thankful for this good report.  We can all breathe just a little easier and no visits until March!  What a great Christmas gift for us and our hearts are full of thanks.  Merry Christmas to you all and may God’s peace rule in your hearts.

Advent

The house is dark, cold and still.  I should be sleeping but it is only in the quiet that I can form cohesive sentences and thoughts that actually move in a linear fashion and not the jumble that a million interruptions produces.  Advent is here, another year to prepare my heart for Christ’s coming at Christmas and His return in glory.  I love advent.  I love the quiet and time to ponder and reflect.  I love creating a space of wonder and anticipation that is out of step with the frenzy and hyped-up emotion of the wider culture.  I love listening to Advent at Ephesus, an ethereal recording from a convent in the midwest.  I love lighting candles on these winter’s nights and seeing the beauty of Christ as our light in the midst of the darkness.  I love it all.  I feel like this is the first year I have truly entered into advent.  I am looking forward to celebrating Christmas but the beauty of waiting is filling my soul right now.

This December is also bringing to mind everything that happened last December.  Thomas just competed in the Longmont Symphony Concerto competition.  He did it last year as well and won third place.  It was the last time he felt really well.  Now as I look back on it, even before the fateful sledding accident, he wasn’t quite right.  But, of course, it is hard to tell with a growing boy who seems out of sorts.  Is he in a growth spurt?  Is he fighting off an illness?  Is he a moody teenager?  I think all of those things entered my head last year and it wasn’t until he had a rough day of sledding on December 21 that we started looking at what might be wrong.  I never stop thanking God for the sledding accident.  It was the impetus for us to have him checked by the doctor.

I find myself reliving the events of last year, tracking in my mind with what we were doing last year and seeing all of us walk right into the fateful events of January.  I know I have said it before but again I realize we have no idea what the future holds.  This thought used to produce huge amounts of fear in me, thinking of all the tragedy and pain that might strike.   After facing the depths of every fear realized, it is easier to trust and rest, knowing He has made the way through the pain.  Yes, pain will come but now I know without trying to manufacture trust.  He has placed peace in my heart.

Our trip to Spain that was derailed by cancer is being postponed again due to an active sixteen month-old named Titus.  Mark and I both looked at each other and agreed that we would like to say we are going to go next year but who the heck knows what next year holds?  Maybe a liver transplant?  Maybe good health and rest?  Maybe something neither of us can foresee?  Maybe more intense pain that we have known?  We don’t know but we do see what is before us now and walking in that and being faithful today is generally more difficult than living in the future or the past.  Our daily bread…  we ask for it again.

It is beyond lovely to be celebrating advent with a healthy household.  Actually, we haven’t really been healthy in the immediate sense, but no one is fighting of a terminal illness at the moment.  That qualifies as healthy in my mind.  My three littlest all contracted Hand, Foot and Mouth disease.  Sounds nasty and it is rather nasty.  Theo had the worst case and his hands and feet still bear the remnants of the blisters HFM left behind.  Gross.  But besides that and the normal winter colds, we are all well and Mark hasn’t even been itching.  What a joy!  As I said in the previous post we are waiting for Thomas’ scan next week.  I must admit every time I think about it my stomach somersaults and I catch my breath.  I have no reason to think anything bad will be on that scan but ‘scanxiety’ is still a real thing.  Once again, not knowing is so nice and the possibilities are all good until one knows differently.  It has been an advent intention of mine to pray through the scanxiety knowing that He knows.  I look forward to reporting good news next Wednesday.

Sailing

Tags

, ,

Thomas’ sailing friend sent us pictures of his sailing adventure in Hawaii.  Finally, some real photos to share here.  I love seeing him so full of life and to me, sailing is a metaphor for his life right now – he is ready for new vistas and unexplored territory.  His next CT scan is in one week and we look forward to good news and a deeper breath of relief.

Thomas sailing 7Thomas sailing 6Thomas sailing 5Thomas sailing 3Sophia and Mark

Funny, I think…

Mercedes informed me today, as she and Theo were playing quietly together, that Theo (her son) had an iPod, iPad, a TV and a cell phone.  “But he isn’t spoiled,” she added.  I said that having all those things tended to make one selfish and spoiled.  “No, Mom.  He is really good.  He has cancer so he gets whatever he wants.  His name is Thomas.”  At which point Theo piped up and concurred that he was good.  They were on their way to the hospital where “Thomas” was to have “tests.”

Hmm….

Aloha!

The following snapshots are an incomplete representation of our trip to Hawaii but I must console myself with the thought that prior to Instagram, I would have had nothing to document our time.  I have never been a camera person; I always seem to be a step behind when it comes to “capturing the moment” so Instagram is perfect for me.  It’s on my phone and it leaves me with the illusion that I can actually take photos, which I can’t, but I don’t feel quite so inept.  You must put up with grainy, slightly out-of-focus photos.  Sorry.

Not a promising look from Theo on the morning we left for the airport.  He rose to the occasion and snapped out of his funk.  Mark put it in his head that only ‘happy boys’ go to Hawaii.  Yes, we will be paying the psychologist bills for that but it certainly worked.

This was the scene at the airport – all gathered ’round the old iPad.  It was vacation after all so I tried to hold back and let them play a few games.

From the ‘best morning of my life’ according to Mercedes.  What could be better than wearing nightgowns with no shoes and drinking orange juice to one’s heart content?

The motley crew at the Waikiki beach.  Notice Titus’ travel clothes from the night before.  He didn’t even get jammies.

Eva and Mercedes at Pearl Harbor.  Seeing the drowned Arizona and reading the names of the men that perished made the events of Pearl Harbor more real and significant for all of us.

Here we are ( I am taking the picture after all) at Pearl Harbor with Greg and Michele.

Thomas enjoyed snorkeling and especially seeing the dolphins.  Isn’t the water a spectacular blue?

Titus and Theo with the captain of our snorkeling boat and our personal babysitter 🙂  He had five children of his own so we felt like he knew the ropes.  We were an oddity in Hawaii; we saw very few big families.  I heard quite a few surprised exclamations as we piled out of an elevator or walked into a restaurant.  “Six??” “Wow!!”

Titus’ Make-A-Wish trip would have been to stay home and take his naps.  He wasn’t a big fan of tramping around the city or sitting on the beach all day.  But he did enjoy eating sand, a small compensation for all of his trials.

These two had so much fun in the water when the waves weren’t too big.  This was their favorite spot.

Our picture from paddling in the ocean.  We had lots of help!

Making sand castles with a rainbow in the background.  Idyllic.  I must say Thomas could still use some more fat on his bones.

Thomas’ sailboat trip which he will never forget.  So much fun.

The kids danced on stage at the Luau we went to.  Pretty cute.  Instagram takes really bad night pictures.

As I am putting these pictures together, I realize two things.  First, these pictures are very spotty and leave big chunks out of the trip, the problem with using a phone.  Sometimes my phone was dead or forgotten at the hotel, etc…  Secondly, I really did go on this trip.  I guess I was taking all the pictures.  Hmm…  I will have to fix that next time we go to Hawaii 🙂 Right.