Lily's Golden Birthday

I attended another funeral for a child today.  My friend, and coworker, Alicia, lost her daughter to cancer last weekend.  It's been a long, hard battle, and Lily passed beautifully.  (If you want, you can read about it here)

When I attended Broxton's funeral last February, I mentioned that I don't have a lot of experience with them.  And really, Broxton's and Lilys funerals have really been the only ones I've attended.  And they were completely different.

Today would have been Lily's golden birthday, 13 on the 13th, and her family chose to celebrate her life today as if she were still here and we were having a big birthday party...instead of a funeral.  We met in a courtyard with a huge tree in the middle, where they hung framed pictures of Lily and wrapped Christmas lights around the trunk.  It was beautiful.  They spun and twisted in the wind as if they were dancing.  Even though it's almost Christmas, it looked like a spring Saturday with flowers and white tables and chairs and yellow table cloths.  People were wearing bright colors and I saw more smiles than tears (although, there were plenty of tears also).

There was a man who came up to the front and sang a couple of songs, and before he started the second one, he invited people to get up and dance.  I didn't know Lily very well, but I get the impression that this is exactly what she would have done...even if she was the only one.  And even though nobody got up and danced, you could hear people singing along.

When the music was over, a girl came up and said some amazingly beautiful words she had written ahead of time, then she invited others to come share their memories of Lily.

Lilly's great grandmother came up with a vase full of flowers and talked about how much Lily loved to suck on the stems of this certain flower because it tasted lemony.  And many people came up and talked about Lily's strength and how she got that from her mother, who is also incredibly strong.  Then Lily's brother came up and read something he'd written just after Lily had passed away.  He remembered his sister fondly and expressed his sadness that she was always sleeping when he'd go visit her at the nursing home (Ryan House).  Then he said, "I remember holding your cold hand for a long time after you'd gone," and you could tell that this small thing meant so much to him.  And at the end, he said "goodbye."  And I cried like crazy.

What was neat was how every person who got up and spoke about Lily said the same things... she loved nature, she loved being outside, she loved life.  She never complained, she was always happy, she loved people.  She was so strong.  I think it was her grandpa who got up and said that as he was looking back at pictures, in over half of them Lily was hugging someone.  I wish I had known her better/longer, because she sounds like an amazingly sweet girl.

I think the most amazing thing about Lily's funeral today is that, even though it was sad that life had ended for this little girl way too early, the people there weren't overwhelmingly sad.  I got the impression that Lily wouldn't have wanted people to be sad for her, she would have wanted them to celebrate all the love and happiness her life represented...and that's exactly what they did.

You will be greatly missed, Lily Lopez.

A Celebration of a Little Boy's Life

I've spent all day thinking about this post and forming my words carefully.  I do not want to make light of the situation or bring any disrespect to this family.  What they have gone through is unimaginable and most of us wouldn't even know where to start if we were in their shoes.  Yet they've handled it with grace from the beginning to the end.

This morning Sadie and I attended a funeral for a little boy named Broxton.  Broxton was a month older than Sadie.  He had been dealing with a genetic terminal condition for about a year.  There were probably over 200 people at this little boy's funeral.  And I decided today that if I am ever in this situation, I want to handle with the grace and love that Broxton's family did.

I don't have a lot of experience with funerals.  I went to one in 9th grade after a classmate of mine committed suicide, and I've been to all my grandparents' funerals (which were all cremations and there was never a casket or a cemetary burial or anything), but that's it.  I was nervous about going.  I wasn't sure what to wear, if I was supposed to bring anything, or if it was okay to take Sadie with me.  I didn't know what to expect, I wasn't quite sure how to act, and when I got there I was a little embarrassed that the tears started in the parking lot!

When the time came that guests were invited to say something, I went up to the mic.  I had this beautiful, but short speech planned in my head...but when I got up there I don't even remember what I said, but I know it wasn't what I had planned.  People probably thought I sounded like a blubbering idiot.  I am much better with the written word than the spoken.  So, I'm going to try again.  Here's what I meant to say...

I haven't known Kristi (Broxton's mom) that long.  But I didn't have to know her long to love her.  I didn't have to know her long to see how strong she is and how much she loves her family and how much they love her back.  We met because I also have a child with special needs, and although our situations are different, there was comaraderie found in the fact that we both have to be strong, we both have to overcome, and we both have to learn how to rely on help.  I can't imagine going through the heartbreak that Kristi and her family are going through right now, but I do know that when I'm having a hard day, I can somehow draw on her strength and get through it.  I am so happy that Broxton is in Heaven jumping and dancing and playing like the little boy he was always meant to be and I can't wait to see him again someday in his perfect body.  I look forward to having Kristi in my life for a long time.

I'm pretty sure that is WAY better than what I actually said!

Something I realized throughout this event was how beautiful it was.  It was planned and put together as a wedding would have been.  The family was honored and followed the coffin in a processional down the center aisle.  We all stood as they carried Broxton's little body through the sanctuary.  People knew what to do, where to stand, and who to look at.  It was like it was expertly choreographed.  Only, the difference between this and a wedding is that this is NOT the kind of show you want to be the star of.

I watched Broxton's parents and close family shaking in sobs as they walked behind his coffin.  I saw big, huge men crying their eyes out unabandoned, while all eyes were on them.  I saw Kristi as the center of attention at an event that she would give anything to not even be a part of.  The grieving mother of a little boy, too young to die, knowing that after they lowered that tiny coffin into the ground she would never see his face again, never touch his skin, never run his fingers through his hair.  And yet, her strength prevailed.  She held her head high, her hair was perfect, her clothes beautiful, and her face stained with tears as she experienced her worst nightmare.  And even though that room was full of people who would give their lives to spare her this pain, nobody longed to be in her shoes.

But you know who really touched my heart?  It wasn't Kristi, or her husband, it was their 4-year-old, Brody.  I don't think he was too young to know what was going on.  I don't think he misunderstood what this was about.  But when I saw those men sobbing and carrying that coffin out to the hearse, it was Brody, with his hand on that coffin who stood the tallest.  I even heard that he didn't let go of it until it was all the way in the car.  Up until the very very end, Broxton's big brother kept watch and made sure Broxton got where he was going safely.

When two people fall in love and get married and have children, they have on rose-colored glasses.  All they see are rainbows and unicorns in their future.  They don't ever imagine their child will have a life-long disability, or a terminal disease, or a genetic abnormality.  A special needs child is a true test of that relationship.  Some couples come out standing taller, and some don't make it.  There's no way to prepare, but I am happy to see that not only has Broxton's life drawn his parents closer together, it has brought together all the extended family, and touched an entire community.

And all this because two people fell in love.

January 24th

When I was a little kid, my best friend lived down the street from me in a cul-de-sac. Her birthday was January 24th. We lost touch somewhere in Middle School I think, but I don't forget those easy-going days of riding our bikes and climbing trees through our neighborhood together.

When I was in high school, I had a friend whose birthday was January 24th also. He meant a lot to me, even after he started making poor decisions. And even now, though I denied his friend request on Facebook, I still think about him every year on January 24th. There is a part of me that will always hold him dear to my heart.

And now January 24th has a new meaning for me. January 24th was the day we made the decision to unplug Sadie's breathing tube and ask the nurses not to resuscitate. We were prepared to say goodbye. January 24th will always remind me of the hardest decision I ever had to make.

For some reason this day has just always been meaningful in my life.

Now, on this second anniversary of that horrible day when we cried and cried and thought we'd lose our baby, I have just one request of you.

When you kiss your children tonight, make it meaningful, take a moment to really reflect on how lucky you are to have them. Whether they're special needs or typical, whether they're healthy or not, whether or not you're busy doing other things, tell them you love them. And really mean it.

so hard to say goodbye...

I know it's good to focus on all the good things in life, but I think it's also important to remember the hard times so you can see how far you've actually come. Today marks the one year anniversary of the day Brian and I made the hardest decision we've ever made. It was the lowest point in my life.

Last night as I was laying in bed, I thought about how a year ago this night we were making a decision to unplug Sadie and let her die. What we didn't expect when we got to the hospital the next day was that we 'd have to make that decision so soon.

One year ago today we prepared ourselves to say goodbye to our brand new tiny baby. We unplugged her breathing tube and waited for her to stop breathing, but she never did. So, we passed her around and all our friends and family, the ones we love the most were there and got to hold her for what we thought would be the only time.

We are so lucky to have so many good friends. And we are so lucky that we still have our little girl. And today she still breathes just fine on her own!