The Year With No Hugs

I want to preface this by saying that I do recognize and appreciate and love the friends and family who are still in my life.  I give thanks for every one of you, because without you, this would all be so much harder.  My Year With No Hugs wasn't truly hug-free because of you.

It's January 1 again.  Another year passed.  Last year, I had so much to say about the previous year, because 2012 was so eventful for us (and no, not in good ways, for the most part).  This year... there's not much to say.  2013 was not eventful but for that I struggled with my health some more... three more surgeries and a birthday in the hospital, among other things.  But there's one thing that does stand out about 2013.

Since I met A in 2004, as well as since AJ was born in 2009,  there have been a few times when I went weeks, or even months, without seeing them.  Pawns in the cruel games adults played against each other, there were times when I couldn't see them... but they were always temporary, because I was needed.

2012 was the year that all changed.  When I made the phone call that changed our lives, I knew that this could be the case.  I also knew I had to do it anyways.  2012 was the year I said goodbye to my babies.  Gave my last hugs... if only I'd known they had to last this long, I would've hugged a little tighter, held on a little longer...

After exhausting all possibilities of bringing them home, I rang in 2013 with a heavy heart... hurting, because I knew I wouldn't be spending the new year with my babies, but still a little hopeful that things might change, and still glad to say goodbye to 2012.

We didn't get a miracle in 2013.  Things didn't change... not in the way I wanted, anyways.  I suspect they haven't changed at all... but there's no way to know for sure... because 2013 was the first year since I met A and since AJ was born that I didn't see them at all.

Not a glimpse.

Not even in passing.

Many times I thought of them, how I used to hug them close and thank God for putting them in my life... and I wished I could hug them again.  I dreamed about one day when I might get the opportunity to get just one more hug.  But it didn't come.  2013 was The Year With No Hugs.  Not once did I get to hold my babies close, smell the way their hair smelled after bath time, snuggle up and read a book, embrace them because I was so happy to see them again.  Not once.  I didn't even see their little faces.  Not.  One.  Time.

A whole year without hugging someone you love more than life itself is a long time.  It's a hard time.  It's a hurting time.

Maybe that's why I have so little to say about 2013.  When someone you love is missing... not much else matters.

I'm healing.  There will be two squares missing from my little patchwork family until A and AJ are in my life again (however long it takes)... but I'm learning, slowly, how to get by until then.

Who knows?  Maybe this will be our year.  I'm not giving up hope so long as there is breath left in me.  I'm still praying, every day, for our miracle.

Babies, wherever you are... prepare to be hugged, because when I see you again, I owe you a whole year's worth.

Surgery... and a plea

Tomorrow I go in for surgery to excise the endometriosis that causes me such extreme pain each month.

This is the same type of surgery that almost killed me two years ago... but the same type that was successful three years before that.

It is a new doctor... a man of God who has helped a dear friend of mine get her life back.

I come to you humbly asking for prayer

...that I will get through this surgery without complications

...that it will give me my life back

...for a smooth and minimally painful recovery.

I also come to you asking for your blessings for some dear friends of mine while I am 'out of commission'.

This is "Annie".

Remember her?  Remember those eyes that reminded me so much of my A when I saw them for the first time this Spring?

Annie is being adopted!

It absolutely thrills me to tell you that God used me and my precious A to help her find her family.

I "met" Amanda shortly after I posted about Annie in May.  She and her husband have committed to adopt her.  It makes me grin just thinking about how it all came about.  A total God story.

Amanda is an amazing and generous person and has launched a fundraiser to help not only her family, but another family bring home their child(ren).  It is a 50/50 wherein you get to vote on which family will receive the other half of the funds.  Amanda and her husband put up the first $100, because they are wonderful, selfless people committed to helping ALL orphans.  Their donation was finally matched yesterday bringing the fundraiser total to $200.  With the donations divided in half, Amanda and her husband would just break even if the fundraiser ended today.

But it doesn't.  There are a little over five days left of this fundraiser.  Still plenty of time to donate for your favorite child or family...

...or just to make your friend Katie smile.

It is my dearest wish that I will come home to a significant bump in the Jones' family's fundraising efforts.  Please check it out here.

Just $5 earns you a vote.  Little more than a bag of potato chips.  Think of the difference it would make if we ALL just chipped in $5.

You can also find their tax-deductible Reece's Rainbow FSP here.

Pretty please?

Endometriosis REALLY sucks.

It's official:  I'm having surgery, probably in about two weeks.  This will be my second biggest surgery, and my first with a new doctor.  It will include cauterization and excision of endometriosis, nerve ablation/neurectomy, possible bowel resection and/or ureter repair, and perhaps a gortex device to stop my right ovary from getting stuck off in the middle of nowhere as it is want to do.

Until then, I am in such unbearable pain, constantly, that I have to be on medication nonstop.

I lost my job today because of issues related to my medical condition.  That hurts, I'm not going to lie.

This puts me searching for a job with surgery in just a couple weeks - and who's going to hire me knowing I'll be out for at least a week very soon?

But if I wait until after I recover to get a job, I won't be able to pay a very important bill and it could have dire consequences for my future, for years.  Could even affect my ability to adopt.

How's that for irony... the disease that causes infertility, that causes many people to choose adoption, has become so complicated that it may actually indirectly prevent me from adopting as well.

So I'm having a down day.  If you have any extra prayers, I would really appreciate them.  I need this surgery to get here fast and I need it to work.

In fact, I'm counting down the days.

I really just want to live a normal life.  Everything was going to be okay after this surgery and once again, my life has come crashing down around me.  Sometimes I really have no idea what path God wants me to be traveling down...

Verses

Verses for my own peace of mind today.

Ephesians 4:32 

Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.

Matthew 5:44 

But I say to you, Love your enemies and pray for those who persecute you

Matthew 18:21-22

Then Peter came up and said to him, “Lord, how often will my brother sin against me, and I forgive him? As many as seven times?” Jesus said to him, “I do not say to you seven times, but seventy times seven.

Please, dear friends, add your own verses that you need to hear today, or verses that I need to hear today about God's forgiveness, and how we must forgive as He does, and about how God is with us even during the worst of times.

I Used To Think

...that I could save the world.

But I was wrong.  Yes, we are His hands and feet, but only He can save the world.

A Mother's Prayer - Celine Dion
I pray you'll be my eyes
And watch her where she goes
And help her to be wise
Help me to let go

Every mother's prayer
Every child knows
"Lead her to a place
Guide her with your grace
To a place where she'll be safe"

I pray she finds your light
And holds it in her heart
As darkness falls each night
Remind her where you are

Every mother's prayer
Every child knows
"Need to find a place
Guide her with your grace
Give her faith so she'll be safe"

"Lead her to a place
Guide her with your grace
To a place where she'll be safe"



For the ones who I carry not under my heart, but within it.

The Strongest People I Ever Knew

My best friend Angie was the strongest person I ever knew.

Yes, that's me hiding from the picture.  So long ago.

She fought cancer for five and a half years.  Over and over.  Surgeries.  Chemo.  Experimental treatments.  She went through more than I could ever even describe to you.  And she wasn't alone.

Angie had a type of bone cancer called osteosarcoma.  It's a childhood cancer, it tends to occur in growing bones, especially arms and legs.  It can present in elementary age through adolescence, but it can come back for years into adulthood, despite still being considered a 'childhood' cancer.  Angie was 20 when she died, of a childhood cancer.  She lived that long - to be an adult - because she had some of the best doctors in the world, and because she was a fighter.  She had a strong spirit that, whether she literally or figuratively fell, just got back up and kept on smiling.  Sure, she had her down days.  Everyone does.  But she taught me a lot about what it means to be strong... that sometimes it's just... well, I almost said 'putting one foot in front of the other', and then I laughed, because I realized that would have cracked her up - Angie only had one leg.  Foot jokes were her favorite.  I remember her telling random people that her right foot itched, and they'd look at her, and lack of a right foot, and get this confused look on their face and not know what to say... because they just didn't know her well enough to know how often she made that joke (or that sometimes, it really did itch).  In any case... that sometimes your only choice is to keep going, keep trying, keep breathing... and strength is not the ability to do that, because we don't have a choice, but how you do it.  She did it laughing.  With her friends.

No picture is complete without a goofy face or bunny ears.

Angie met a lot of people in her fight.  She went to camp, went on ski trips, with other kids who had the same or similar types of cancer.  She told me all about them.  Their strength.  Their surgeries.  Their relapses.  The fun, silly, hilarious things they did together.  They were such a huge part of her story.  They understood what she was going through in a way that no one else did, and gave her somebody to talk to about it until the very end.  She took their setbacks harder than her own.  They made endless trips to the hospital less miserable.  Seeing a friend made her day.  And there were those of us like myself who were with her through it all, but we didn't understand what she was going through, not even close.  She needed those friends who did... even though she hated, so much, that they had to suffer through what she did.  She'd have taken every one of their burdens from them if she could have.

I found out tonight that Angie is seeing one of those friends again... he lost his battle to osteosarcoma this week.  I remember her talking about this friend often... that he made her laugh, that she'd run into him at the hospital and it made her day, how much fun they had together, how much they had in common, how much she respected his perspective.  My thoughts and prayers are with the family and friends of that young man tonight.  I've walked the road of losing someone I love to cancer, and it's a dark, hard road.  Would you please offer up a prayer tonight as well, for all the people this young man left behind?

There are other friends of Angie's who are still fighting.  Friends she admired for their strength, who she saw as stronger than herself (even though they - all the 'cancer kids' - had a kind of strength the rest of us can't even imagine).  Friends who were her first and foremost concern even to the very last moment.  I remember one of them came over the day before she died.  I can't imagine how hard that must have been... I know how hard it was for me.  I also know that neither of us would've been anywhere else.

Angie 'introduced' me... in person or just through her words and stories (which were vivid as she was a writer, and a very good one at that) to some of the strongest people I ever knew.  People who are fighting a battle I can't imagine.  Children, families who are staring cancer in the face and pushing forward.  People like her.  And there are thousands of them.  34 children were diagnosed with cancer today.  34 families will never be the same.  34 more kids will have to learn to be a whole new kind of strong.  And this happens every day.  Every one of those kids is someone's best friend, someone's daughter or son, someone's brother or sister.  They matter.  Their fight matters.

I'm just typing as I think tonight - I'm not sure exactly what point I'm trying to make... but I just want people to see them.  To see their struggle.  To remember their strength.  With every pink ribbon you see, imagine a gold one for childhood cancer.  Support an organization that helps kids with cancer, or funds research for childhood cancer.  Give a hug (or better yet, some chocolate) to the mom of a little one you know who is fighting.  Offer your ear as one to listen, your shoulder as one to cry on.  They are strong, but they are not strong alone.  They learn to lean on the people they love.  It's a battle we don't have to let them fight alone.  It's a battle that I hope and pray to see the day no one else has to fight.  Just... learn from their strength.  And love your kids.  Life is too short not to live it the way Angie did, the way her friends who were also fighting did... with strength and joy and love.

Looking Back on 2012

I did this last year, and this year has been another... eventful... life-changing... year... so I'm doing it again.  And praying that this time next year, when I look back on 2013, happy memories, not sad ones, are what come to mind first.

January
2012 actually started on the best note possible.  I hadn't seen my two youngest DBKs, A and AJ, in over four months.  I missed them terribly and I hadn't been feeling in the holiday spirit at all.  On January 1, 2012, I saw them again.  Watched them open their Christmas presents.  Held them in my arms, hugged them tight, told them I loved them.  It was a perfect day.

AJ, 2 years old

A, 8.5 years old

After that we had to slowly get back to reality.  It was tough.  I had my heart broken for orphans around the world with special needs.  I wasn't sleeping well at night, staying up late to pray for children according to events in their time zones.  I was having no success finding a job to aid in paying the bills, and anxiously awaiting tax refunds.  Even though it started so perfectly, January was a rough month... a month of wait and see.

February
In February things got a little better.  Taxes came through to pay the bills.  I started working on getting licensed to do childcare for my friend's kids.  It seemed like there was a light at the end of the tunnel.  I was also gearing up for two exciting trips - a statewide conference on Child Passenger Safety which would be held in April, and a national conference in Orlando, Florida on national highway safety priorities which would be held in June.  I had been granted a scholarship to attend both by our local Safe Kids Coalition.  I felt like things were going to be looking up soon - and they did, for a while.  Good news started coming down about the orphans I was advocating for.  More were making their way home.  Changes were being made in their home countries.  Families were committing to children.  I found myself more engrossed in the Reece's Rainbow community by the minute.

March
In March, the first thing that jumps to mind is something that happened one day when I was literally as far as could be from expecting it.  There was snow and ice on the roads, a rare occurrence here last winter.  It was late - 11 pm or so.  I was in my warm bed, under my electric blanket, writing about orphans, when my phone started to buzz.  Bill collectors, I was sure, but when I looked at the caller ID... it was the mom of my DBKs, whom I hadn't heard from since January 1.  I answered to find her distraught and needing me to come take the kids.  All I can say is that it was a miracle I made it the short distance to where they were living without incident on the icy roads, because I wasn't exactly taking it slow.  I was going to see my babies.  I picked them up.  They were excited to see me.  My heart was full to finally bring them home again, put them to sleep in their cozy, warm beds where they knew they were safe.

I had them for two days that time, and I never knew exactly why, except that it's likely tied up in what turned into a very large amount of police reports.  In any case, I was thankful to have them in my arms once more, even if I didn't know when the next time I would see them would be.

In March, I also began to share with my oldest DBK, M, who is not related to the other two, about the orphan crisis.  Poor sweet soul, it broke her heart to see all those children in such terrible conditions.  I found that we both needed to *do* something, and we also needed a respite from the pain we were discovering.  While my mind worked on what M and I could do together to make a difference for these kids, I planned a girls' night for us - we painted our nails, played games, stayed up late, and then went to a late showing of The Hunger Games, which was amazing and really played right into my determination to do something to make a difference.  M loved it and we began reading the books together, a couple of chapters at a time aloud, every night.  I'd already read them all - in three days, no less, because I'm one of those people who has to read books before seeing movies, but M, not much of a reader, wanted to read them and I thought it would be a nice way for us to bond.  And she only laughed at me a little when I couldn't pronounce 'muttations' correctly throughout all three books.  How do you pronounce it anyways?

As the month ended, I was feeling more at peace than ever... even if the future was unknown.

April
April is my birth month, and M's, and my mom's, so it was a big month around our house.  My birthday is April 6.  It was a Friday, and two days before Easter.  I'd been home all day, cleaning up so my friend's kids could come over while she went to work later.  It was when I noticed my 17 year old brother cleaning that I knew something was up.  I didn't dare to guess what.  I went on with my day.  My friend brought her girls over.  We all took a nap.  When I woke up, I went upstairs, where my mom was just getting home from work..... and had my babies with her!  My birthday presents were two big hugs from A and AJ - the thing I'd wanted most but hadn't even dared to hope for.  And we had another perfect day.  We played together, we braided hair, we ate cake and ice cream, and I was happy.  At the end of the day though, it became apparent that crisis had struck in their lives once again.  They had nowhere to go and would be staying with us, at least overnight, we'd discuss it more the following day.  Little did I know that when my mom asked for a couple hours with the kids for my birthday - she'd ended up getting me a couple months with them!  April found the kids moving back in most of the time, and many more happy memories being made.

M had her birthday party at Skate America - her mom went all out to make sure it was perfect.  I attended with A while my mom watched AJ, and both my girls had a blast, and I had a blast watching them.

At the end of the month I went to my statewide child passenger safety conference, which was great, but I definitely missed those goofy kids even if I was only gone for two days!

May
May was, most importantly, A's birthday.  Nine years old this year!  She didn't have a party with us this year (I don't know that I'm up to anything like her 7th birthday party... ever again) because she was getting something WAY better.  I was going to Orlando the following month for my national highway safety conference, and with my costs paid for, it cost me only a little more to bring her with me - and how could I not, with Disney World right down the road?  Pretty much everyone I know brought their families.  But since A's birthday was in May, it was a surprise super awesome present.  I wrapped up this big box full of balloons, travel supplies, and this sign:

She went to gymnastics that night so excited to tell all her friends and teachers that she got to meet the princesses.

The other thing in May that stands out in my mind is Mother's Day.  I honestly don't even remember what I got my mom, but I will never forget my very first Mother's Day gift.

Sweet A, when I picked her up from school that day, handed me this little sprout in a plastic dixie cup, and a carefully crafted card.  She handed them to me and said "Happy Mother's Day.  I just do love you SO MUCH, Katie!"

I nearly cried.  Later, after she was in bed, I did cry.  Because I'm not her mother, but I did a whole lot of raising her.  This was her way of telling me that she knew that, that she loved me like a mother just like I love her like a daughter.  The picture of the flower above was taken in the fall - it grew so far beyond that little dixie cup, we cared for it so well because that little flower meant so much to us.

June
Oh boy... talk about hot and cold.  June started out amazing.  Home with my babies.  Getting ready to go to Florida.  So much excitement.  On June 13 (a day which was formerly dark to me with history), I boarded the plane with my girl to go on our dream vacation.

We had a blast.  We met the princesses.  We played on the beach, swam in the ocean, saw family, went shopping, ate ice cream like there was no tomorrow, and took a million pictures.

Cinderella's Castle!

Beach for the first time!

Fort at St. Augustine

Then, on our last full day there, the world stopped spinning.  Crisis began.  As we were sitting there packing up our bags, A told me a secret... a deep, dark one that she probably never told anyone else.  I fully believe that it is only because of how far from home we were, how relaxed our days had been, that she felt comfortable sharing it with me.

It wasn't a secret I could keep.

I didn't want to make the call.  I didn't want to set the cascade of events I knew would follow into motion... but I thought I had to.  Honestly if I could go back in time, I would change that decision.

A tropical storm, hurricane, something, was brewing off the coast.  The sky had darkened significantly.  The waves were huge.  Red flags were raised on the beach.  The last time we played on the beach, it was almost deserted.

A storm was also brewing within me.  I fought to hold back the torrent of emotions I was dealing with that day and give my princess the final vacation day she deserved.  I tried to enjoy every single little moment, push the dark thoughts out of my mind and just enjoy her... but my stomach was in knots.

I will tell this story in greater detail later, although I won't share everything because it isn't all mine to share, but to make a long story short, we flew home the next day... I kept the smile on my face... it'll all be okay....

and then it wasn't.

That was the day I didn't even get to say goodbye to A before she was taken from me.  The day I didn't know I'd never see her baby brother AJ again.  I only saw A one time after that... and I hope she heard me when I told her I'd always love her.

After June 21, I spent the rest of the month in misery.  I felt sick all the time.  Nothing could make it better.  I can truly say the week that followed our return was the worst one in my entire life.  June ended darkly.

July
July was the month I tried to put myself back together... put one foot in front of the other... keep breathing... try just to survive each moment when each day was too much.  We hired an attorney to try to help A after social services let us down.  It was a road I never thought I'd be traveling.  The 4th of July came and went.  It's my favorite holiday.  I went to four fireworks shows, went swimming, spent time with my friends, family and M.  I enjoyed those things, I always do, but this year they felt empty.  Something was missing.  Something really important.  Where was A?  Did she get to see the fireworks?  Was she happy?  Was she even safe?

I was starting to mend.  Just a little bit.  There was still a big piece of my heart missing, but I was learning my new normal.  Then the week from hell struck.  It only started in July, but the worst of it fell there.  On Monday, July 30, I woke up to find my 17 month old kitten, Boo, dead on the floor of my apartment.  I almost didn't make it through the day.  I held him until we buried him.  I couldn't cry a single tear for a long time, and then one day they just all broke free.  I'm crying again writing this.  Another of the worst days of my life.  He was just a baby.  My baby.  I couldn't even sleep alone for days.  And July ended as darkly as June.

The day before he died

August
The week that ended July and began August was horrible.  It was supposed to be a good week.  Olympics, the State Fair, friends, but starting with the cloud of my pet's death hanging over us, it was just bad.  I can't recall the details, but I missed my best friend Angie (who had passed just over a year prior) dearly, something had gone amiss with A's case, I got into a fight with a friend, I was discharged from my doctor's office over a $20 bill, and probably some other stuff I don't even remember... I just remember that it was a very bad, bad week.  I buried myself in mindless television shows, sleep, and orphan blogs.

After some time had passed, I adopted another cat - mostly black, just a tiny bit of white on his chest.  I called him 'Soft Kitty' or 'S.K' for a week, until I named him Marbles because when he purrs (which he does almost constantly), it sounds like someone's shaking a bag of marbles.  I love him!  He's six months old now. I spent some time in the hospital with a kidney infection (two ER visits in one week is never any fun) and had a bad medication reaction, so I was feeling a little worse for the wear even by the end of August, not to mention having to find a new doctor because I have any number of medical needs that have to be attended to regularly.  All I could do was hope it would get better when the school year started and routine set in more firmly.

Marbles, AKA 'Soft Kitty'

September
Finally, a month that started out well.  At the very beginning of September, my friend Faith got home from Eastern Europe with her two newly adopted children, both of whom have down syndrome.  Another friend and I went to see them that weekend and bring some clothes for the baby (she was around 18 months when she came home, but the size of a 3-6 month old).  We talked a while, played with the kids, and I got to hold her sweet and precious baby girl, who thankfully will never remember having been an orphan.

I look dumb in this picture.  But she's cute enough for both of us

I don't remember much about the rest of the month.  It must've been relatively unremarkable.  I did go to the Buddy Walk with Shannon and Faith's family, which was a blast, it was my first year and it definitely won't be my last.

October
October was a month I didn't look forward to... at all.  Halloween, pumpkins, hay rides, costumes... did you know I took A trick or treating every year between 2-7?  It wasn't a holiday I was used to 'celebrating' without her.  I remember being rather depressed.  I also faced a good bit of financial difficulty that I was working to resolve, and we had finally been given a court date, which was looming frighteningly on the horizon.  It felt like limbo - there's not really any other way I can put it.  Like I was just waiting for the other shoe to drop.  I was probably irritable and short with people I know and love, and for that I'm sorry.  I was under a lot of stress and I apparently didn't cope well.  As the month ended, my mind was occupied by nothing but what November would bring.

November
Not long passed before the tone for the month of November was set.  Our court date was early in the month.  We were in court for over two hours - which was nearly if not completely unprecedented for a case like ours.  And it was a rough two hours.  I will admit that I cried on the stand - to the point where my 'smudge-proof' (apparently not waterproof) mascara was running down my face in a raccoon-like fashion.  It was rough, and the other team didn't play fair, but I regretted nothing.  After social services let us down, it was the only thing we could do, the thing we had to do.

After court that day, I slept for two hours, spent some time with some good friends, and then slept for sixteen hours, straight and solid.  I woke up at 7:00, and thought it was morning (it was not.  It was the following night.)  But then I felt a sense of relief.  Not complete relief - we were still waiting on a decision, which could have said anything - but court was over and that in itself was a relief.

The decision, which, from my perspective was not favorable (although I will admit there are unknowns involved that could change my opinion) came just before Thanksgiving.  So much for being thankful.  I had my wisdom teeth out the day before Thanksgiving (we had our turkey early) and after 7 abdominal surgeries I thought it would be a cinch - I didn't even have to be in a hospital - but I'm definitely counting that as one of my worst surgeries.  I have serious dental fear and I do NOT like anyone messing around with my mouth.  It's actually still healing.

At the end of the month I picked up some extra work with a friend (I had already worked for one friend for the better part of the year) and things seemed to be looking up, teeth (or lack thereof) aside.

December
Through December I continued to work for friends and fundraise heavily for Reece's Rainbow's Project Angel Tree.  It was a tough month, mostly because of financial difficulties, but we made it work.  At the end of the month, I came upon the opportunity to work for a friend who I met through Reece's Rainbow close to a year ago and has three adopted children with down syndrome.  Her family was in need of a home health aide, I was in need of a job, and a wonderful organization locally agreed to employ me to work for her.  I've been doing that job just about a week now (officially - this is one of the friends I was working for unofficially previously) and I just absolutely love it!

I missed A and AJ a lot this month.  It was truly my first Christmas without them since A came into my life all those years ago.  I walked through stores, by the sections of little girls' clothes, touched the ruffled skirts and commented to whomever I was with how I would most certainly be buying this if I still had A.  Girly girl if there ever was one.  But I appreciated the time I had with M, we celebrated Christmas in the usual manner, just unfortunately less two kids.

I look weird because of the lack of eyebrows.

On the very last day of December, the little boy whose Christmas Warrior I was through Reece's Rainbow met his goal - meaning I had to make good on a promise I made at the beginning of Angel Tree - that if both Brett #19 and Elden 14G met their goals, I would shave my head - and that is how I would start out 2013... and I smiled on the last day of 2012 - not only because I was glad to see it go, like last year (and I was, considering some of the year's happenings) but because I was thankful, too, to see another year and have hopes for more good and even better things.

Because that's the kind of perspective spending a year advocating with Reece's Rainbow gives you.

The Right Words

In the wake of unspeakable tragedy on Friday, millions of people are trying to find the right words.

To comfort the grieving.

To say to their children.

To describe how they feel.

To end the violence.

To ease the pain.

"I'm sorry" falls so pathetically short.  "I'm here for you" just doesn't seem like enough.  "Heartbroken" can't even begin to describe it.  Even "I am praying" can't do enough to take away the pain.

Many seek comfort in the Word of God when the words of man cannot speak strongly enough to their hearts.

I am sure that nothing can separate us from God's love - not life or death, not angels or spirits, not the present or the future. (Romans 8:38)

Jesus then said, "I am the one who raises the dead to life!  Everyone who has faith in me will live, even if they die.  And everyone who lives because of faith in me will never really die.  Do you believe this?  (John 11:25-26)

Blessed are those who mourn, for they will be comforted.  (Matthew 5:4)

But Jesus said "Let the children come unto me, for theirs is the kingdom of Heaven."  (Matthew 13:14)

His Truth lends aid to many, its worth cannot be overestimated, and yet, even the Word cannot erase the pain.  God did not promise that all our days would be without pain - on the contrary, he told us they would come!  In the same breath, He promised to guide us through them.

Two years ago, I remember discussing this very topic with my best friend after the bad news had come that her cancer could no longer be treated - when the 'if' we hadn't even dared to consider instead became a 'when'.  Angie was an amazing and unique person - there's not a soul on this earth just like her and there never will be.  As we had that serious conversation one night, we came to the conclusion that the 'right' words just didn't exist.  For as much as we both loved words, loved painting a picture with them, finding just the right one for every situation, they fell far, far short in times of grief.

Then, because we were both silly and couldn't stand to be serious for too long, we decided to make up our own word, to say all the things words couldn't say.  To say I love you, I'm with you, I'm sorry, I wish I could make it better, there are no words to express to you the depth of my emotion.  The word was "spingledon".  Then we had a good laugh about our new made up word, and like words themselves never could, each other's friendship and understanding comforted us both.

Another time, I remember agreeing with her that, "It's not what you say - it's that you cared enough to say it."  And that is what I want to leave you with tonight.  My best friend Angie was wise beyond her years, and a year and a half ago, she herself went home to be with God far too soon for any of us who knew her.  But I draw comfort today from the knowledge that she and her wisdom are there in Heaven, lending love and comfort to the children we are all grieving.

If you are grieving, if you are seeking to comfort the bereaved, if you are trying to put your feelings into words and coming up frustrated and empty handed, take heart.  No one has the 'right' words.  We all feel our way through the darkness, doing the best we can, and in the end, it's not what you say, it's that you cared enough to say it.  Your sentiment will shine through.

My choice of words for all of you?

"Spingledon."

Color Changing Nail Polish

Just barely over five months ago, I was carefully applying a salmon colored nail polish to twenty individual toenails and ten miniature finger nails.  Not my own finger nails - I hate to have polish on my fingers.

I bought it in St. Augustine, Florida on Father's Day.  I specifically chose Sunday for that excursion to stem the flow of any unhappy thoughts that could spoil our vacation.  We would be too busy to be unhappy for even a moment.

I spoiled us.  I bought us ice cream, candy and souvenirs, including the nail polish I later applied so carefully. It was only a salmon color indoors - outdoors it turned a bright shade of fuchsia.  We got it at a store called 'Del Sol' (of the sun, in case you didn't get that).  Everything in the store lit up or changed color in sunlight.  They had UV lights in the store that you could hold things under to see what they'd look like outside.  Sure enough, as soon as we set foot outside the little shop, the polish turned fuchsia.  We couldn't wait to paint our nails with it, then set foot on the sandy beach and watch our toes change color.  We painted them that night.

I think a couple days on the beach overdosed my polish - although Alivia's was still turning purple, perhaps because her feet were pretty much constantly in the water - but my toes had gone back to staying pinkish even outside.  I took this picture one day, bored as I lounged by the pool, my little fish splashing around with boundless energy.

Pink toes

  

Little fish

By then she had chewed the polish off her fingernails.  She always did, because she couldn't help biting her nails, especially when she was nervous, and this almost always ended in her scraping off any polish present with her teeth.  Actually, the nail biting itself was a habit we shared, and part of the reason I didn't paint my own nails.  We used to remind each other when we saw each other biting - don't bite your nails!  But I didn't say anything when I noticed the missing polish... we were on vacation, it wasn't the time to worry about such inconsequential things, we were having the time of our lives.




Every day for the past five months, when I've looked down at my toes, I've seen those flecks of pink paint, gradually becoming less and less.  When I've trimmed my nails, some of it has come off.  Once or twice, as the nails grew out, I thought about taking it off and repainting them... and then thought twice.  I wasn't taking it off, because it reminded me of the happy memory of sitting there with my princess, painting our nails.  I put it on when we were together.  I didn't want to take it off while we were apart.

Now, only the tiniest traces of paint remain on my big toes.  If I cut my nails again every trace of it will probably vanish.

It makes me sad.  I know, silly, right?  Silly that I even got sentimental about not wanting to take it off, and walked around with half-painted toes all summer.  Even sillier that now that it's almost gone, and knowing I won't soon be together with the princess whose toes I painted with mine, I still can't take it off.  Sillier that I'll probably cry when I'm forced to clip my nails again and the last little bit is gone.

But I can't, and I will.

What I wouldn't give to go back to the day I put it on, when everything was happy and carefree, before crisis, before things got so ugly and complicated.  What I wouldn't give to go back and do it all again, knowing what I know now.  But we don't get to go back, do we?  We only get one shot.  We do the best we can with it.  We try, as I tried, to do what we think is right.  Sometimes we fail.  Sometimes we fall short. Sometimes we get our hearts broken.

And when that happens... maybe it isn't so silly to hold onto the happy memories brought on by something as small and seemingly insignificant as a couple flecks of no-longer color changing nail polish.

Once again... I am sick.

I hate being sick.  I hate it.  Even just a cold is miserable to me, I don't want to do anything because I ache, I can't breathe, and my head feels full and congested.

I'm lucky to have the advent of modern medicine on my side.  I have two different cold medicines... one that makes me sleepy, and one that doesn't... two different pain relievers to alternate if necessary... a cold can of Dr. Pepper to sip from, a TV with cable on which I can watch any number of shows, movies, the news, DVR recordings... or my current guilty pleasure... Lifetime Original Movies.  *Blushes in shame*.

I'm cozy in my bed under a sheet and three blankets, one of them electric and with a little remote control I can reach without moving hardly at all to adjust the temperature just right.  I'm resting against three pillows and cuddling the blanket that was my 'lovey' as a child.  When the aching gets too bad, I have a big white bath tub that I can fill with hot water and fragrant bubbles to relax... candles to light, a stereo to play relaxing music on...

I have an iPhone - a gift from the Easter Bunny - that I can download apps on, make calls and texts with, browse the web, and any number of other entertaining things.  If I'm feeling really terrible and crawling out of bed is just too much, I can even use that phone to summon my loving mother to come to my aid.  I have a rescue inhaler in case my breathing gets too bad, and a doctor I can call in case I need antibiotics.  There are no less than half a dozen nationally recognized, and even some worldly renowned, hospitals within a short drive from me in case I should develop some complication.

I have a laptop - so I don't even have to leave my bed to check facebook, chat with friends, blog, browse websites, check the weather and more.  I have enough comfy pajama pants and sweatshirts that I could change them twice a day for a week and still not run out of clean ones.  I have a freezer full of popsicles and a coffee shop that has amazing hot chocolate right down the road to soothe my sore throat.  I have a big box of tissues so I can blow my nose... even the kind with lotion in them that don't hurt so much when you have to use way too many of them.  I have any number of fragrant lotions - or plain-smelling but effective ones - that I can rub on my dry, irritated skin.

I could go on and on about the comforts around me, even when I'm sick, even when my body feels broken... but I think you get the picture.

Even with all those comforts though, I'm feeling pretty terrible.  My head feels almost too heavy to hold up, full of congestion and mucous (sorry, I know that is TMI, but it's true), my eyes are red and burning, my throat constantly feels like it's on fire, my skin itches from one of my medications, all I want to do is sleep, my body aches all over, my nose alternates between stuffy and runny, so I'm either constantly wiping or blowing it, making the skin around it red and raw and painful.  Putting the lotion on it hurts so badly it brings tears to my eyes.  I can't breathe well through my nose, especially when I'm sleeping, so my mouth tends to fall open... which in turn makes my sore throat worse.  I hate being sick.  It's miserable.  I can't do all the things I want to do, I have to choose between 'calling in sick' (I put it in quotes because I'm lucky enough to work from home doing childcare) and losing income, or muddling through my job, feeling horrible (which I can do because the kids are the ones who got me sick in the first place!).  Being sick is just no fun.  Fortunately for me, it's just a cold and there is certainly a light at the end of the tunnel.

But now it's time to do a little math.  First, we need to subtract some things from what I just described.  Subtract the comfortable bed, warm blankets, cozy pillows and heaps of clean, comfortable clothes.  Subtract the nice cold beverage and the soothing medicines.  Subtract the loving caregiver and various forms of entertainment you can utilize right from your very bed.  Subtract the ability to blow your nose or wipe it in attempt to make breathing easier.  Subtract access to readily available doctors and hospitals.  Subtract the soothing bubble baths and lotion.  Subtract the bliss of falling into sleep, the brief respite from misery you can have because medications have treated your symptoms.  Subtract the bathroom only a few feet away so you don't have to go far to get to it.  Subtract the lovey and the soothing music.  Subtract the easy access to popsicles and hot chocolate to sooth your sore throat.  Subtract any physical comfort at all, any human contact at all, any entertainment at all... and any hope that it will ever end.

Now add some things.  Add a set of filthy clothes that you've been wearing for days already and will wear for many more days to follow.  Add a mess of food you couldn't swallow fast enough, waste that couldn't be contained by a diaper that is changed once or twice a day at best.   Add a sticky bare vinyl mattress underneath you in an outdated, cold crib pushed right up against the one next to it.  Add a cruel 'caregiver' who only strikes you if you cry out in misery... like the one who struck this little boy:

Add mind-numbing boredom, day in, day out... nothing to do but stare at the same bars of your crib you have been staring at for years.  Add a nose that is both dripping and crusted almost shut because no one has wiped it.  Add a throat that is raw as could be, from which there can be no relief.  Add insomnia caused by the tremendous pain and discomfort you're in, not even allowing your body the sweet release of sleep.  Add, instead of comfort foods, an insufficient amount of scalding, putrid liquid poured down your throat in a haste.  Add, instead of the irritating sinus pressure everyone deals with at some time or another, a head full of pressure and heaviness, not because of a simple temporary cold, but perhaps because you have hydrocephalus that no one has ever bothered to treat... like this little girl...

Marsha has a wonderful family working very hard to bring her and her sister-to-be home.
She is four years old and has never been treated for her hydrocephalus, which is intensely more excruciating than your average headache and cannot be treated at this advanced stage in her country.

Add not only the aches and pains of being ill, but the extra pain and soreness, from the bruises, from the improperly healed fractures, from the contracted joints, from the raw spots where, out of boredom, you've bitten your skin for self stimulation.  Add an angry, red rash from being made to lie in the same diaper all day, or longer.  Add the sounds of the cries of misery from the other children in the room, in their own cribs, experiencing their own torment.




Now, time to solve the equation.  Simple elementary school addition and subtraction.  Subtract all the comforts that make being sick just a little easier.  Add more sources of misery on top of illness.

What you're left with... is what millions of orphans face every single day.  Every.  Single.  Day.  The lucky ones are adopted - but still they have lived these conditions far too long... imagine having a bad cold for four years straight.  Now try to imagine multiplying the misery of that cold over 100 times.  No, perhaps 'lucky' isn't quite the right word.

The others... well, they too eventually get relief from their misery... not in a week or so, like we do when we have a cold, but eventually they get relief...

...when they die...

...alone...

Every time I get sick now, I think about them.  About the children who are sick, with far worse ailments than a cold, but do not have the comforts and privileges I do.  It truly breaks my heart.  Please... help these kids avoid any more torment.

Share.
Pray.
Advocate.
Donate.
Adopt.

http://www.reecesrainbow.org.

"Carissa" - soon to be the newest member of the Matthews family

If you feel inclined to donate right now, would you please consider my friend Lisa Matthews and her family? They are trying to bring their little girl home from a terrible orphanage and are hoping to make their first trip soon, but they are still grossly underfunded.  Lisa lost her mother recently and between her grief and lack of success in fundraising, she has been struggling a lot lately... it would mean the world to me for you to bless her family... and no gift is too small, because every penny counts.  (Click here to be directed to their grant fund)

In whatever way you choose... be a part of the solution.  Help stop any more children from dying alone in pain.  BE the change.  We can't do it without you.

Every time we lose one...

It never gets easier.

A few months ago, we mourned Lynette.

Lynette died alone in Eastern Europe... because she had down syndrome.  She never knew the love of a family.

Since then, more children have been lost.  Died.  I refuse to mince words here, this is the truth.  They died.  They breathed their last breaths alone in a crib.  They couldn't fight anymore and succumbed to illness, malnutrition, abuse, and who knows what else.  They had no family to mourn them or attend a funeral.  They were buried in usually unmarked graves with other children who never got the chance to have a family.  Some of them had been waiting for families for years.  Some of them had families who wanted desperately to bring them home.

Because they had special needs.

Down syndrome.  Cerebral Palsy.  Hydrocephalus.  Spina Bifida.  Dwarfism.

These are not conditions that cannot be treated.  But they cannot be treated in a place where special needs children are not valued, have no families to advocate for them.

So children die.

'Lynette'

'Mali'

'Margaret'

'Walden'

'Jaxon'

And now........................

Sweet baby 'Margaret'... only just a year old.

We got the news of baby Margaret's death today.  She had down syndrome, with a heart complication that could have been surgically corrected in the United States, but for an orphan in Eastern Europe... unless she was adopted... it was a death sentence.  

Margaret had a family trying to commit to her.  Someone wanted her to be their daughter.  Everyone loved her.  Everyone asked about her.  We all prayed for her.  Then, just weeks ago, another adoptive mama unknowingly watched the ambulance carrying a dying baby Margaret away.  Gone, forever.  

Remember January 1?  When you were celebrating with friends at midnight, toasting to the end of 2011 (whether you were glad to bid it farewell or thanking God for the blessings it brought)?  When you made your new year's resolutions?  The day off work?  

All the children pictured here have died since that day.  Their faces will never be seen on this earth again.  No earthly being will hold them close and tell them how loved they are.  They have died, never knowing the love of a family.

The blessing here is that Margaret and her friends are with Jesus now.  He is rocking them in His arms, telling them that they are His children, created beautifully, wonderfully and perfectly in His image.  The love and beauty they are experiencing now is more than anything we could imagine.

But they deserved happiness here on earth too.  They shouldn't have had to leave us so soon.  Because they were discarded by a society who didn't appreciate them for who they were.  

My friends, THIS is why we scream.  This is why I post face after face after face, beg for contributions, money or goods or time... THIS is why, when you think I'm being depressing and irritating by posting so many sad things on my facebook page, I keep yelling.

These deaths were preventable.

If only these children had been seen in time.

My heart is truly broken.

So next time I scream for a precious child - like my Angel Tree child, Elden...http://reecesrainbow.org/13177/elden-14g

Or my friend's Angel Tree child, another boy I love, Brett...

Or a family who is working hard to bring their children home, saving their lives...

Like 'Xenia's family...

Or Everett and Olson's family... 

Or Makayla's Family

...Or so many others...

Those faces are why I do it.  Those ones that will never be seen on this earth again.  I do not want these precious treasures to be next.  Please.  Hear my cries.  Feel their pain.  Ask God to break your heart for what breaks His.  Be a part of the solution... of saving lives.

In loving memory of all the precious angels we have lost...

May the Lord rock you in his arms, hold you, tell you you are loved, until we get there to finally meet you.  Rest in peace, in no more pain, sweet babes.

Remember...

Quickie - ANGEL TREE!

Okay, okay, okay, before I say anything else I'll admit to being horrible at commitment blogging.  I won't break the committment, but sometimes when something's on my mind, I have to get it out first to unblock the rest of the thoughts.

At Reece's Rainbow, traditionally, children with down syndrome ages 0-5 are put on an 'angel tree'.  They are assigned a Christmas warrior (advocates and families sign up for whichever child is on their heart.  They can pick a first, second, and third choice.)  This year is special - three children from each other category (different ages or special needs) are also being included.  Wonderful for my heart for the older kids who haven't been chosen yet.

The job of the Christmas warrior, is to increase exposure of the child, pray for and love the child, and fundraise for the child - the goal for each child being $1,000.   All this is done between the first of November and the end of the year.  Last year, EVERY SINGLE CHILD met their goal.  Some of them have even been chosen for adoption.

Sign-ups for Angel Tree have been posted as starting on September 15 for several weeks now.  One of the first questions asked by this wonderful group of advocates was "so can we sign up at midnight?"  The answer was yes.  Now, I'm normally up late, but tonight I set an alarm on my phone to make sure I didn't get distracted and miss the start of sign-ups.  From 11 pm to 11:40 PM, I combed through every single child listed for Angel Tree.  If you'll look back and remember, I begged for a long time for people to vote for Brett to be on the Angel Tree.  It was pretty logical to put him as my first choice - but I didn't expect it to come to fruition, because he has a lovely and dedicated prayer warrior who is co-hosting an auction for him and other children with me, and I know he's on her heart as much as he is on mine.  Laura, were you up at midnight too?  Haha.  Anyways - my plan was always to raise money for both my AT child and Brett... pay it forward... help another Christmas warrior get their child over that fence.

As I was combing through the list of children... it was kind of funny.  I've spent the last seven years helping to raise two little girls.  I connect better with girls.  I'm drawn to them more.  But not this time.  This time, something was different.  This time, as I combed through all the faces, one little boy popped out at me...  another little boy with down syndrome.

Meet Elden.  

I saw his face, his fine hair, the joy on his face, I read Reece's Rainbow's description of how he was playful and loving and delightful, a blessing to everyone around him.

And I thought of another little boy.

If you've been reading... or if you're family... you've met this little boy... in some way.  Maybe not in person - I never met him in person, but I know him.

This is my uncle Tony... named for my grandfather (Anthony) and lovingly referred to by his family as 'Little Tony'.  He was born with down syndrome.  The doctors told my grandparents horrible things.  He would die within a year.  He wouldn't talk, or walk, or eat.  The best thing for him was to be put in an institution for 'children like this'.

But my grandparents, with their hearts of gold and courage of a thousand men and deep love for 'the least of these'... they did something radical for the time, in the early 1960's.

They brought their baby home.  Their baby with down syndrome.  Their baby that everyone told them to give away.

And guess what?  Not only did he live past the first year... he walked, talked, heard, saw, ate, played, loved, and was loved by everyone around him... for ten years.  All because of a nearly unprecedented choice his parents made.  God only knows what would have happened to him in an institution.  I don't even want to think about it.  I love him too much.  The stories, the pictures, the places, the memories, his favorite things... though I never got to meet him face to face... have shown me his strong, resilient spirit and endless love.  Stories, pictures, memories we would never have had if my grandparents, who already had seven other children at home, the youngest being my mother, who was four years old, had given that little boy up to a place "for children like that".



It makes me think.  Elden's little blurb on Reece's Rainbow describes him as delightful, playful, happy... and his picture... well, there's no denying how absolutely adorable he is, even with premature hair loss that sometimes occurs in children with down syndrome.  Beautifully balding.  Would fit right into my family, come to think of it...

It makes me think... if it were my Uncle Tony that was stuck in that institution across the ocean, likely to be transferred to an adult mental institution where conditions are harsher than harsh soon, no mommy, daddy, brothers or sisters to love and remember him... No M&Ms... none of Grandma's delicious cooking... no family to call his own... awaiting even worse conditions... Wouldn't I do anything to save him?  Wouldn't I scream and cry and war to bring Little Tony home?  You bet I would.

And how is Elden different?  He's a child.  He's not my family - but he's still a child - a child without a family... who deserves to know all the wonderful things about life.  I've never been one to care only for family and put others out of my mind - 'They are someone else's problem'.  Elden IS someone's son, even if they don't know it yet... but because of where he was born, maybe other factors... he hasn't had the opportunities a child with down syndrome growing up in a family home would have.  He hasn't experienced that kind of love.

Just as easily, the child sitting alone in an orphanage could have been my uncle, my friend, or myself.  And I would fight.  Just because we don't share a genetic connection doesn't mean I don't owe the same to Elden.  For we are ALL God's children.  For every child deserves a loving family.

So.... for the next few months, my blog is going to be peppered with posts about both this little boy and Brett (whose Christmas Warrior I very much expect is someone I know), fundraisers to meet that $1,000 goal (and there will be some seriously cool ones, you won't want to miss it... stay tuned!)  We are going to get these boys... boys I was inexplicably drawn to... maybe because of how much they remind me of someone I love... the exposure they need to be found by a family, the grant funding that makes it just a little bit easier for families to take that leap of faith to bring them home.  And then, when (WHEN, not if) families commit to them, we are going to be behind them 100%.

Donations can be made to the boys' accounts here and here, but they will only be counted toward the angel tree total after November 1.  If anyone would like to give before then, I'm willing to open up my personal paypal to keep funds to transfer on November 1 - just ask.  For accountability purposes I would forward the Reece's Rainbow 'receipt' notification to anyone who donated.

Or you can wait until November 1.  Start a change jar like I did... it's an old vinegar bottle, my 'bottle for Brett'.  Before long, another name will be etched onto that bottle.  When it's full, or ready, deposit it and send paypal or a check directly to the boys' grant funds.

Or (AND) you can wait to see the awesome fundraisers I am planning, some of which are more of a pre-Angel Tree awareness booster and will not count toward the $1,000 (but they will certainly count to these kids and the families who eventually step up for them) and others that won't be announced until November 1 or later.  I have some really exciting ideas up my sleeve for that time.  You're all going to call me crazy... but hey, isn't that the name of the blog anyways?  Yep.  Crazy... for the least of these... and I wouldn't have it any other way.

And I also need to put it out there right away that I am happy, comfortable, and have everything I need.  Well, except Ukranian chocolate, but I suppose I'll survive.  There are more toys in this room than Brett or Elden have seen in their entire lives.  Electronic gadgets that would baffle them.

Because this is a Christmas event - I want to let you know I have one thing on my Christmas list... for both of these boys to meet their goals.  I'm past the days of every relative sending gifts, shiny boxes of overpriced random gadgets, even new clothes - I don't grow, so the ones I have are just fine.  I want for very little, material-wise.  But, in doing one simple thing, you can give a Christmas to at least three people.  You see, anyone who puts $35 or more in a child's grant during Angel Tree receives a beautiful ornament with that child's picture to hand on your Christmas tree... maybe remind you that it is the season of giving, of loving, of humbleness... not one of overcrowded superstores and the latest gadgets.  So right there - you've already given a gift to an orphan by contributing to his grant fund.  You've already given a gift to yourself - the beautiful ornament that will come in the mail to remind you of the gift you gave... and lastly... you'd be giving a gift to me.  Because my one and only Christmas wish, is for both these boys to meet their goals... even for families to find them.

Even if you've never considered adopting yourself, look at their little faces again... and make sure you are not scrolling past a picture of your son.  Share this post.  Share Reece's Rainbow.  Sometimes we don't know a child is missing from our families until they come home and you wonder how you ever lived so long without your child.  These kids need exposure.  They need someone to look at them and say 'that's my son.  I have to save him.'  So even if you can't donate, please share these children everywhere you can... facebook, twitter, work, school, neighborhood, blog, email, community event... help us get them seen.

50 years ago... who would've ever thought that this little boy, who the doctors dismissed as a hopeless case...

...would be the inspiration that drove his niece to scream for special needs children who were NOT lucky enough to have families... especially these little boys?

Who would have thought?

Elden (5 years old... a dangerous age to be in his country...)

Brett... turned 11 in August.  He has to find a family soon or he will be lost forever.

Thank you, Uncle Tony, for making me who I am... making me care... even though you never knew you were doing it.  I love you.  Please hold those special needs babes in your arms for me until I get to Heaven... tell them they are not forgotten.

Thank you, Grandma and Grandpa T. (now reunited with their precious son) for making a courageous choice that changed me forever.

And maybe.... thank you for helping me find families for these sweet children.




P.S. - Okay, so maybe I lied about the 'quickie' part.  It seems I can't write short posts.  Sorry <3