Friday, November 14, 2014

#1Day1Goal #SavingEliza

I have a lot on my mind, and this is likely going to sound disjointed at the start.

My doctor is on me about exercising, so I have started to walk a couple of miles a day after I drop the boys at school.  I listen to music while I do this, of course, mainly a playlist I made for my 40th birthday party of songs that make me happy.  Earlier this week, "Someday, Someway" by Marshall Crenshaw (who I've already rhapsodized about on this popped up on the playlist.  (Funny sidenote about this playlist.  I had a party for my 40th birthday.  It was about 4 hours long, basically.  The playlist, on the other hand, runs for 13 hours.)

ANYWAY, this Marshall Crenshaw song is pretty well known, and I bounced along the sidewalk sort of half singing it under my breath while I walked.  The second verse is "After all you've done for me all I really want to do is take the love you brought my way and give it all right back to you."

I need to take the love you brought my way and give it all right back to you.

Another verse is "I can't stand to see you sad, I can't bear to see you cry.  If you can't tell me what you need, all I can do is wonder why."  This brings in the second thread, Tucker.  Tucker is talking a lot about Connor lately, and crying more.  He didn't do much mourning at the very beginning; he wasn't able to express it then.  Now he can, and he is, and sometimes it comes out in very unexpected ways.  There are two very recent examples I've decided to share here today.  The first is when we told the boys we were going to move a TV and the XBOX down to their basement lair.  Instead of being excited, they both said, "No, let's not change the basement.  We don't like change."  I mean, it takes a different kind of kid to turn down private XBOX access.  So we said okay - we aren't going to force that.

The second was this Tuesday, as the boys helped me move a bunch of clothing and household donations from the attic to the car so I could take them to my old office to donate.  It was 2 years worth of donations, so it was over 20 bags.  They worked out an assembly line and worked hard, and even seemed to have fun.  We got almost to the end, and Drew said, "Mom, I can't get Tucker to give me the last bag."  I walked back into the house and found Tucker lying on top of the last bag, his arms and legs wrapped around the sides and tears streaming down his face.  He was devastated that we were giving things away, even though they didn't fit or weren't needed and being moved on to those who could and did need them.  I gently pried him off the bag and let him cry it out on me.  We have forced so many things on him this year, by nature of how life played out.  He doesn't seem so sensitive when you interact with him, so it's always a surprise when he is.  Drew's sensitivities are right there on the surface and you know where you are with him.  Tucker's are deeper inside and it takes what seems like a seismic shift for them to cause an eruption.

This song really played on me a lot this week, more even than "All About That Bass" which is an earworm of nuclear levels.

This morning, it all gelled in my mind together, and here I am.

After all you've done for me all I really want to do is take the love you brought my way and give it all right back to you.

An old friend has a beautiful daughter.  She turns 5 this Sunday.  She has been diagnosed with Sanfilippo Syndrome A, a long-term and ultimately terminal diagnosis.  I'm giving my love back to them right now.  You may have seen news articles or segments on the TODAY Show or other programs.  They've been living in quarantine for more than 5 months in the hopes that they accomplish their goal of fundraising almost $2 million dollars and can fund the clinical trial of a drug that has been developed that can save her.  SAVE HER.  They can take a day that her parents will never forget, the day that the doctors had to sit them down and tell them that she was going to fade away, slowly, incrementally, and eventually from their arms, and turn it around.  I had that day.  I sat between my husband and my mother and cried for an hour straight mourning the life I had imagined for Connor, one of my hands in each of theirs.  I was never able to have a day like the one they are so close to, though.  A day filled with hope, where they see that they have raised enough so the trial can take place, and know that they may have been able to fix her.  My sons have to spend most of their lives mourning their brother, lost so early in their lives.  I cannot stand by and see another family laid low by devastation.  I will not.

This Sunday is her 5th birthday.  They are ending the fundraising with one last push.  It's called #1day1goal.  Their goal is to raise the remainder.  As of last night, they needed 4600 people to donate $100 each to reach it.  Maybe you can donate $100.  Maybe you can only donate $10.  But your $10 helps Eliza get better, helps her parents sleep a little easier at night, help her brother avoid, even unknowingly, the pain of losing a sibling.  It can also help the thousands of other individuals who have been diagnosed and their families, and those not even born yet with this syndrome.

I don't normally ask people to repost my blog ramblings, but I am asking you to do it today.  I couldn't save Connor.  His path was irremediable.  I could only help him along the best I could for as long as he let me.  But I can help Eliza and her family.  Please share this as far and as wide as you possibly can.  Funding ends November 16, 2014.  You can donate at

After all you've done for me all I really want to do is take the love you brought my way and give it all right back to you.

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