The Mighty C

The Mighty C

Every morning, this boy of mine wakes to a world that is too bright, too loud & too fast. Every day we pray that we can provide him enough love, comfort and security to get him through to the end of the day whole and happy.

Every day we give him his medications, to hopefully smooth the rough edges of the world that will tear at him. Every day we give him his “firsts” and “thens” to sooth the anxiety that can rear it’s head without warning. Every day, I fear we will fail. Some days the fears come true. Some days they do not.

Regardless of whether the fears were justified or not, every night, Caleb hits reset. He greets every morning with joy. After 10 years of living in a body with skin too sensitive and a brain too connected to give him the peace everyone else takes for granted….this boy gets up every morning and shines.

A couple months ago, on a whim, I reached out to a friend who also lives this life and knows what this world is like to boys like mine, like his. I gave him a wish, it was really a prayer though he will be very amused to hear that I sought him out for such a thing. I needed something…something for those days when I am too dejected or worn down by fragile X to imagine for myself what this life is bringing us too. I wanted something to put in front of Caleb to show him…SEE, this is what you are…we see you, we love you, we believe in you.

How could we not when what we see when we look at you is this?


Grampy Travers

Grampy Travers

It’s been more than a month since Grampy passed. The house feels so empty without him…and I can’t seem to write anything else while this is here in my draft folder. Caleb talks about him every single day.


About 10 1/2 years ago, Eric and I moved in together…into a two family home owned and occupied by his grandfather. I really wasn’t sure how I felt about Eric’s grandfather living downstairs. I’m not a big people person. I’m a little bit…OK, maybe a lot…anxious and I value my privacy. I had visions of his grandfather, who insisted on calling me Matilda, wandering in and out as he pleased. Also, he wasn’t excited that I had two dogs…if he didn’t like dogs. He was not going to be my kind of people.

We managed to settle into a comfortable routine, however. We had our lives and he had his. We lived upstairs from him but could go days without seeing him, we were all busy. He was there but not there too much, I hope he felt the same about us. We tried to be useful and respectful, it had been his home for a long time and we didn’t want to invade it.

We continued this way up until a couple years ago then, gradually, Grampy needed more and more help. We’d clean his car off after a storm and we took over getting the trash out, landscaping (except for mowing…the lawn guy kept that chore!) and any maintenance projects Eric felt comfortable tackling. It was a subtle shift and we said over and over again how glad we were to be here to do these things for him.

In the past year, however, Grampy grew to depend on Eric, in particular, more and more. He took over driving Grampy to his appointments, grocery shopping and eventually…after a near miss with the gas stove…the cooking. People began telling him how lucky he was to have us. Mostly he agreed, although losing your independence isn’t easy and there were times he resented the way things would go. We tried very hard to respect his wishes but we drew some hard lines on safety issues which, as his strength declined, became more frequent. Losing his license was particularly hard for him. I think until that moment he assumed he would regain what he’d lost. I still remember the hurt look on his face when he told me that the state had revoked his license. All he wanted was to be able to drive to church and to the grocery store, he really didn’t understand why that would be a problem.

Since May, we’ve been primarily responsible for him. He had outside services coming in but those just allowed us to cope with the extra responsibilities. It didn’t really relieve us of any of them. We were still tied to the house, we didn’t leave him alone for longer than a few hours at a time between meals. There were times we wanted to do things that we couldn’t because Grampy needed the care. We never resented Grampy, though. We felt honored to be able to help him, to be able to pay him back for the support he’d given his family over the years. Plus, he just called out to something very maternal/paternal in us…he needed us and we needed to do for him.

People have a lot of different opinions of Grampy…we all had our own experiences with him…but I think I was the luckiest of all. I had nothing but images of him as a kindly old man, hardly bigger than an elf. Any time I described him it was as “this little, old Portuguese man…he’s SO cute!” Any temper he had when he was younger, and I’ve heard he had one, was largely gone. He always had a smile for me and he dearly loved Caleb. I don’t remember when it happened but at some point over the years Grampy began calling me “Meliss” instead of “Matilda” and, it turned out, I kind of missed it.

He also tolerated my dogs right up until we brought our new puppy, Tucker, home. Then Grampy decided he was a dog person after all. He just loved Tucker. As anyone who has met him knows, Tucker is not exactly falling over himself to make friends but he loved Grampy and would sneak down the stairs to visit as often as he could. He still sneaks down the stairs regularly. It turns out, Grampy truly was my kind of people.

I loved hearing his stories about growing up in East Cambridge, about his wife who I’d never had a chance to meet and his military experience. You could have knocked me over with a feather when he told me he was a Marine and fought in the Pacific during WW II. He had the most devilish look on his face when he told me that he was a “bad boy” back then and was sent to the Marines from the Navy as a result. I wish I had asked him what he did.  During the war he was a medic…just think for a second about the things he had to have seen when he was barely out of his teens. Then he brought his Purple Heart home, got married, bought a house, cared for his mother, raised a daughter and worked until retirement age for the US Postal Service.

These past few weeks have been incredibly hard on us but no matter how hard it got we never forgot that we were blessed to be able to care for him the way a war hero and family man deserved. We were blessed to love and be loved by him in life and we were blessed to be able to bear witness to his passing.

We know he was tired and long past ready to see his Helen again. At one point, last Monday night, when he was restless and waking off and on, I bent over him so he could see he wasn’t alone. His gaze flickered away from my face to a point over my shoulder and the smallest smile passed over his face. I can’t know for sure who or what he was seeing, but I have my suspicions and that’s what makes it a little more bearable to let him go…knowing that someone who loved him so completely was waiting.


We miss you more than we thought possible. Caleb has been wandering around your apartment talking to you, “Easy Grampy! Slowly…” I hope you can see the love he had for you in his need to be like you, even if that means using your walker. I’ll be sure to turn on a few Bruins games for him and tell him his Grampy used to play hockey, and won more than one fight against the big kids on the ice.

Godspeed, Grampy. We love you.

PS – Eric found the begonia identification tags you kept…we’ll do our very best to find the right ones for you and Helen in the spring.

Quick, do the math! <3

Eight years…how can it be only eight years that we’ve been married? I feel as though we have lived an entire lifetime, maybe two, together already. I remember when we first met and I said, “No, I’m not dating you. You are too young.” What I really meant, though, was “I’m too crazy. You’re too good. Run far, far away.”

I think maybe that’s how you won me over. You agreed with my rules, you agreed that we should never date…and then you wormed your way into my heart when I wasn’t paying attention. Suddenly I had a new best friend, who called to talk every night, who drove hours and hours to come visit me, who knew me better than I knew myself. I would have been scared or angry and probably messed it all up but you knew just the right time to break it to me. We were in love. Damn it!

Once we passed that point, it was full steam ahead. You proved beyond a shadow of a doubt that you loved me and that I would always be safe with you when you cried with me over the unexpected miscarriage. I thought you should have run. It was too soon for any rational couple to go down that path and yet…it broke our hearts…losing something we didn’t know we wanted. I remember telling you that it wasn’t fair to lose something when we had just begun to get excited. And you agreed, it wasn’t and instead of running you held me and told me we could have it again.

I’m not sure I’ve ever told you this but, I’m glad we didn’t elope to Vegas and get married by Elvis. You were right. I’m glad we had the chance to stand together, in front of friends and family, to start our forever. I needed that moment to acknowledge to you and to myself that I was done pushing you to run. I needed that moment to look in your eyes and tell you I loved you…in good times and in bad.

We couldn’t know then how amazing the good times would be or how awful the bad times would be but I wouldn’t give up a second of any of it. Good and bad, it doesn’t matter, it makes me love you more either way. Happy anniversary, honey.

To honor my Papa.

To honor my Papa.

I’ve been writing blog posts in my head for days. Within hours of finding out that my Papa had passed my mind began turning to all the reasons I, and so many others loved him. None of what I was writing measured up, though, so I didn’t put any of them down on paper (or blog.) It has finally occurred to me though, that nothing I write about him will ever measure up. How could I ever hope to convey the man he was with mere words?

I could tell you he grew up during the Great Depression on a Maine farm as one of 12 kids. There were worse places to live through such a thing, he could hunt and fish and garden. He learned to eat what was available and to enjoy it. I don’t know many people who would look at me with such joy when I walked in to give him 10 lbs of liver from the half cow we had bought or get excited about a fish, planning immediately to fry it up for breakfast the next morning. Living through the Great Depression didn’t define him but it taught him to be self-reliant.

I could tell you about his service with the 10th Mountain Division during WWII. You could learn more about his service by reading about the war online though than he ever shared with us. He told just enough stories to let us know why he didn’t talk about it and we respected that. His service in WWII taught him to appreciate what he’d left behind. After the war, after his service was complete, he returned to Maine and didn’t leave again except for the odd trip to Vermont or over the border into Canada.

Instead, I’ll tell you about his wicked sense of humor.

He was a prankster of the first order but never mean spirited, that’s not easy to pull off. When he was an adult he once stopped by his father’s house and found his father sound asleep. Apparently my great grandfather was a heavy sleeper because Papa tied his toes together and left. The next day he stopped by again and said to his father, “I stopped by yesterday.” to which his dad replied in a dry tone, “Oh, I know.”

There was a punchline to every story and as soon as he reached it he would, and those of you who were fortunate enough to know him will hear this in his Downeast drawl, laugh like hell. He did that a lot, my Papa. He loved to laugh and he loved to make others laugh. This is what defines him.

Instead, I will tell you of his great love of family.

He wasn’t the type of man to tell you in words he loved you, you just knew it. I remember clearly last fall, when we thought we were losing him, giving him a kiss and telling him “I love you.” before I left after a visit. He looked surprised for a second and replied, “Well, I love you too.” I never ended another visit without that kiss or without telling him I loved him and not because I needed to hear him say it because I did know it already. I just didn’t have the same talent for telling people that without words and I needed him to know it so I said it.

Today, I’ll honor him in the way I know he’d like best. I’ll love my family, I’ll miss my home and I’ll share the last joke he ever told me.

This young guy saw an ad in the paper for a horse for sale for $50. He stopped round to visit the old guy selling the horse to look the horse over. He looked him all over and finally he asked the old guy, “Why are you selling this horse for $50?”

The old guy replied, “Well, he just don’t look right.”

The young guy scoffed, “He looks alright to me!” and he paid the man the $50.

The next day the young guy brought the horse back and said in an indignant tone, “Look here, this horse is blind!”

The old guy looked at him for a minute and then replied, “I told you he don’t look right.”

I hope that made you laugh like hell, because it would have surely made my Papa’s day to hear it.

Happy birthday, dude!

Happy birthday, dude!


Dude. Are you aware that you are 9? NINE! I’m not going to whine about how fast the time is going because you keep showing me how awesome you are becoming with every passing day. I just can’t get enough. Every time I turn around you’re doing something new and amazing. Something that has me turning to Daddy and asking, “Did you just hear/see that?” Daddy’s favorite phrase is, “You’ve got to look at what your son is doing.” Mostly it makes me laugh, other times it makes me shake my head…sometimes it makes me want to cry because, you are 9 years old and 9 year old boys can have that effect on their moms. You seem to seesaw back and forth between doing exactly the right thing or exactly the wrong thing. There doesn’t seem to be much in between with you.

Yesterday, true to our slacker nature, Daddy and I began preparations for your birthday. What started out as cupcakes we planned to buy somehow spiraled into 2 varieties of homemade whoopie pies and treat bags for your friends at school. Daddy thinks that I’m the one who is responsible for that sort thing but you and I both know that I’m inspired to this madness by you. You’re big, you’re loud, you have a giant personality. You pull people in with sweetness and then knock them out with your humor. You’re exactly who I hoped you would be and half measures just don’t fit. Don’t tell Daddy but I think we are wearing off on him. Last night, when I was moaning about how much was left to be done, he told me to stop whining, “At least it’s not 2 AM!” When that is your silver lining you know you’ve crossed straight into crazy town. I think he will like it here.

Today you will be sharing those treats with your friends. They have been talking about this party for a week now, they are so excited that they get to go…that they get to be with you and celebrate you. You might not know this but you’ve hit the jackpot with your friends, kid. They are, hands down, the best friends I could have ever imagined for you. They understand you, sometimes better than the teachers do. They like you, in all your Caleb quirkiness. They are so invested in seeing you succeed that they celebrate each success as if it were their own. And, honestly, it is. They have been with you every step of the way these last two years and I give them a ton of credit for how far you’ve come.

I won’t lie…your life isn’t the easiest ever. Some things are really hard for you and always will be. I will say this though, no matter how hard life can be…it’s always easier with good friends at your side. It took me a very long time to learn that, you seem to have mastered it already. A loud noisy gym is scary, unless you have someone to hold your hand. New places are tough, unless you have an arm around your shoulder and another around your waist…and they’re both making you giggle by whispering “feeeeeeesssh!” in your ears or tickling your neck. Don’t ever take them for granted, they are the magical Caleb-whisperers and there is no limit to where you can go with friends like that at your side.

I love you!

Team Fragile X – A Challenge

Team Fragile X – A Challenge

It is the time of year for counting our blessings, for taking a look at our lives and giving thanks for all of the amazing things we have in this life both big and small. I’ve been looking hard at my everyday life for the awesomeness I might overlook on a day to day basis and I am loving what I see. A good number of my Facebook friends have been doing the same thing and I’ve enjoyed seeing what they have to share. It occurred to me that one of the things I am most thankful for…are all the people who have come into my life in the last two years.

Two years ago, Eric and I attended our first International Fragile X Conference. We went not expecting to get anything from it and we came back completely transformed. We met the most amazing, motivated, passionate, loving people…people who made us want to be more like them. And with the support of the National Fragile X Foundation, we’re getting there.

The foundation is just kicking off their Annual Fund fundraising project, this is the primary source of funds for all of the foundation’s activities, and it just happens to correspond with both Giving Tuesday (you can read about that here.) and the Firefox challenge on Crowdrise.

 The Challenge begins at 8:00:00 AM Eastern on November 19, 2012, and ends at 11:59:59 PM Eastern on January 10, 2013.

The three (3) fundraisers that raise the greatest, next greatest and third greatest amounts of money on a CrowdRise fundraising page for their benefiting charity during the Challenge Period, and are in compliance with these Terms and Conditions and the CrowdRise T&C, will earn the Challenge Grants.

The First Place Challenge Grant is $50,000, the Second Place Challenge Grant is $30,000 and the Third Place Challenge Grant is $20,000.

There is no way I could win that challenge on my own…but I think we as a community can. After talking with the foundation, I set up Team Fragile X on Crowdrise and now I’m asking YOU to join that team. You can set up your own page and push it out to your friends and families and take an active roll in giving back.

Detailed instructions on how to join Team Fragile X: Team Fragile X

Or if you just want to donate, go right to the Team Fragile X page: Team Fragile X Crowdrise/Firefox Challenge Page.

Let’s go team!