Category Archives: family

May the force be with you.

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IMG_4310Entertaining is one of our choice pastimes. Sometimes the cocktail hour is extended and dinner gets a little held up, but our guests never complain (at least not to our faces).

Dinner parties for eight are a favorite over here, but we’ve also enjoyed a few full houses — celebrating 40th birthdays, college reunions, etc. All good times, but only one party resulted in lives saved. Six years ago we hosted a party that we called Jack’s Bone Marrow Birthday Bash. It was just after Jack’s 2nd transplant birthday and right before his 11th traditional birthday. We made hundreds of sliders, had coolers of juice boxes next to a keg of beer, and my mother made a beautiful cake. The only price of admission was that you needed to walk through our front door and consider joining the Bone Marrow Registry.

Several of our friends helped manage our dinning room filled with information. We had the necessary paperwork and were ready to swab the cheek of anyone 18 or over. We didn’t put undo pressure on our guests, but we did remind people that Jack was celebrating his birthdays because of the kindest of a stranger. We registered 79 people that day.

Yesterday I got a note from a friend of a friend , Michael Steiner, who stopped by that day to give his DNA. Last month he donated bone marrow to a boy in Germany who is fighting leukemia. Michael is the second person from our party who has given hope to a family. Statistics show that 1/540 people will be a match in their lifetime. Our statistics seem to be more like 1/40.

Here is a note from Michael. I think you will enjoy his honestly and sense of humor.

There’s a scene in STAR WARS (1977) where Obi-Wan Kenobi gets the message from Princess Leia: “Help me Obi-Wan Kenobi, you’re my only hope.”  What a terrible movie it would have been had he said “Nope.  I’m fine here in my cave.  I got my Tusken Raider (Sand People) neighbors and those creepy, feely, midgety Jawas all over the place.  I got a good situation here, and I’m staying put.”

When the call came from Be The Match (“Leukemia … some teenager somewhere … very, very sick … you’re the best match … more testing … you might be able to help him … “)…  My immediate feeling was I had won something.  Like the numbers on my lottery ticket matched the numbers in the newspaper.  (Nice branding, “Be The Match”)  

And I couldn’t say no, no more than Obi-Wan could have said no.  Had he said no, that would have been the end of the movie, the end of the franchise.   We live for sequels.

… 

Some time mid-June I got a call and letter from Fran from Be The Match.  Fran prepped me for the following:

— Some teenage boy in Europe was sick with Leukemia, and I was found to be the best match for a marrow donation.  Turns out, the organizations don’t share more information than that.  Before Fran shared the little bit of info about the recipient, I tried to tell her I’d rather not know anything about him/her; the idea was that some people, like my wife, would never be satisfied with any level of detail.  Plus I was just happy to help someone.  Who the person was was completely irrelevant.
 
— I can’t just walk in and donate tomorrow.  I need to have a battery of tests and clearances, and I needed to donate a pint of my own blood, which I would get back after the “harvest”.  (Love the word “harvest”.)  None of the prep was very interesting, but I did get to take my shirt off a few times in front of doctors and nurses, and that was nice.

— Gunter (my name for him because I figured he was likely German) would have 10 days of aggressive chemo before my donation that would just about kill him.  This was the only frightening part of the entire process for me.  They were sharing this information with me because if I bailed at the last second, Gunter would perish shortly thereafter.

— The “harvest” would consist of general anesthesia, me on my belly, tube down throat for breathing, doc drilling above glutes into pelvis in 4 places and sucking out about a liter of marrow.  None of the details were very interesting to me.  I was just looking forward to having some scars on my ass that I could justify dropping my pants for people to see.  

When I told my friend Joe that I was going to do it, he said, “Don’t.  This is a horrible idea.”  Then I said, “Wait, you don’t understand.  I’m going to be almost completely naked, unconscious, lying face down, with people standing around me in white gowns and poking at me…  It’s going to be just like college.”  And he said, “Wow, that does sound like fun.  You should do it, and see if they can get some good pictures of you while you’re out.”  

When I told my wife, she said, “You know I don’t like driving in New Jersey, so you’re going to have to find your own ride back and forth to the hospital.”  She admitted that she would do it too, if she got the call, but she’d be very uncomfortable with the whole thing.

When I told my neighbor Ford, he said, “I’m so jealous,” and I said, “This isn’t about you, you know!”  HA!

When I told my neighbor Dina, she just said, “Sounds fun.  You need a ride?”

When I told my parents, they were very happy for Gunter, and for me.

Another time when I was sharing the Obi-wan reference with Joe, he said, “Yeah, but you know Obi-Wan dies, right?”  And I said, “Duh!  Everyone dies, stupid.”  And he said, “Good point.”

— My recovery would take from 2-10 days … but count on 7 days of ice, rest, pain medicine as necessary, taking-her-easy, no heavy lifting etc.  This is not because the bone is weakened.  It’s because of the trauma to the muscle in the harvest area, and the achy pain there could throw me off my game of whatever I was doing.  My eyes got very tired very quickly from all the rolling.  I knew an up-sell when I heard it; Fran and the doctors and nurses had to make sure I was prepared for the worst.  My recovery was easy: 3 hours of sleep immediately after getting home from the hospital, the next day I could walk albeit slowly, but by 48 hours after the procedure, I could walk up stairs two at a time.  The only things left were a sore throat and a stiff neck from the tube, and a dull ache above the buttocks. 

…

I cannot remember who or what brought me to the Torrey’s house 6 years ago.  Most likely it was one of their      neighbors who invited me to stop by her house party to do the swab, and I’m not one to go to a party and pass on putting something in my mouth, especially if everyone else is doing it.

And I’m glad I did.  It’s nice to think about a part of me living on and helping out a relative (we’re all related if we go back far enough).

It’s one month since the surgery.  According to Fran, different countries have different rules about what they will share about the recipient.  But every country that participates in the registry is required (at a minimum) to tell the registry if the recipient dies after receiving the donation.

So “no news is good news” as they say.

And as they say, “May the force be with you, Gunter.”

May the force be with you, Michael!!

Love, Jess

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Joaquin

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I woke up this morning discouraged. My weekend plans are a bust – all my preparations and shopping weren’t necessary. Joaquin is going out to sea.

I know I’m not not alone in my disappointment. Anna commented this morning that she’d been hoping for a long weekend, “I don’t want destruction or anyone hurt. Just enough flooding to cancel school for a couple of days.” And, go on Facebook (or maplewoodonline) and you’ll see that there are plenty of people that have spent a huge amount of time this week discussing “hurricane force winds”, “tropical depressions” and “cones of uncertainty”.

Storms bring us together. They give us all something to talk about and “weather” is pretty safe topic – it sure beats gun control or marriage equality (both of which I support wholeheartedly, but don’t necessarily want to chat about with the UPS guy).

Neighbors rally together to share their homes and fridges following a storm. No one cares who they’re voting for or where/if you go to church. Storms are a great equalizer. Perhaps it’s that storms don’t care who you are. Nature is blind as it barrels in. We’re all fair game and need to stand together to get through it. Storms bring the best out of people.

So, I’d been hoping for a little weather to distract me from my worries and get me reacquainted with our neighbors. I was ready to fill the bathtub and hunker down. I still have one eye on the Weather Channel, hoping that Joaquin might make an unexpected turn west. Nature always likes to keep us guessing.

Love, Jess

P.S. My heart goes out to everyone in the Bahamas. I, like Anna, don’t want destruction or anyone hurt. Simply a good storm to take a few days off and hang out with my neighbors.

How are you?

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“How are you?” It’s a question we hear several times each day and mostly it’s answered without too much thought. “Good.”, “Fine.”, “Great!” — all acceptable options.

Are you ever tempted to REALLY answer the question? Have you ever met someone who really wants the truth?

The last couple of weeks I’ve been teetering between two extremes. Whiteboarding has been remarkable. Jack is clearly reading and able to answer most questions. It’s great until he gets bored — then he just looks at us and circles everything (I’m pretty sure it’s his way of saying FU). The inconsistency has me a little discouraged. As much as I prepared myself for it not being a miracle, part of me hoped that it would be the beginning of true communication. And, maybe it will, but for now I’m left feeling proud/excited/grateful AND frustrated/bummed/cranky — depending on the minute.

I also finally finished the book, Smiles and Duct Tape — Journaling to a New Normal,  last week and sent it off to it’s next step. The relief of having completed the project, and the anticipation to see where/if/how it lands, has me fired up. But, it’s also left me wondering what’s next.  So much of the last couple of years has been spent at my computer reliving the first 1000 days of our journey and reflecting on how our family adapted. Suddenly, I’m feeling a whole lot less secure than I claim to be in my book – like the writing was keeping me grounded.

I’ve felt so off that I’ve avoided much social time, but yesterday my manic mood and I met up with a new friend. I’m not much of a believer in fate, but it was a series of rather unusual circumstances that brought us together. Initially a mutual friend, then Listen to Your Mother, then a disease. Ours ALD/his AMN – same gene, different details, but something that links us and had us eager to meet in person. So we met and “How are you?” was answered easily and very honestly.

This new friend is much more than a man with a “complicated” gene. He’s a father, a husband, a friend, a motivational speaker and a life coach. We shared our stories of ALD/AMN and quickly felt like old friends. When I asked about his career as a life coach, he briefly explained and then offered to show me some techniques.  I wasn’t really sure what to expect, but with his kind eyes and clear questions, I was quickly spilling details of my history and goals for the future. I hadn’t realized how much I had spinning around my brain. I walked away with a new friend (or a guy who will soon block me on Facebook) and so many ideas.

I got home juggling all the possibilities, excited about starting a new chapter. Then, life got in the way – dinner, diapers, dogs. My mood quickly swung back in the other direction. At least I got a peek of where I might be headed. I’m hoping my mood will stabilize soon. Hopefully Jack will come home from school today ready to answer some questions and I may need some more conversations with my new friend. But for now, don’t ask me, “How are you?” unless you want the real answer.

Love, Jess

whiteboarding

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I said in my last post that progress doesn’t always follow a straight line, but it looks like Jack may be full steam ahead with his latest accomplishment. We call it WHITEBOARDING!

We present Jack with a question (either verbally or in writing) and write three choices on his whiteboard. He circles his answer. His circles can be a little haphazard, but they’re legible enough to be clear. We’ve asked questions that have specific correct answers and questions that provide Jack with a decision. He’s able to answer everything without any trouble.

It’s remarkable, but we’re still quietly clapping (although we are chilling some champagne). We just want to see if Jack’s brain continues to cooperate with his new skill. And, I’m a little nervous that Jack is being so nonchalant about his new ability – as if he’s done it forever. He’s potentially just broken down his biggest barrier, and he’s acting like it’s no big deal. My only explanation is that not talking hasn’t really bothered him too much.

Everyone else, of corse, is thrilled by the idea that Jack is gaining a voice. The doors that could open for our little man are endless. He can tell us how he’s feeling and what he wants to do. He can be part of the conversation.

My only complaint is that I now feel obligated to ask all three of my roommates what they want for dinner. One luxury of having a silent child is that I could make some decisions for him. Going out for meals has been especially fun, “I will have the spinach salad with the dressing on the side. My son will have the bacon double cheeseburger with a side of french fries.” There are NO calories if you don’t order it for yourself.

8 things we’ve learned this week:

1. Jack can absolutely read. We’ve been making him prove it all week long.

2. One Direction is his favorite band. Better than The Beatles, The Grateful Dead, and The Stones (Dan is a little upset, but he’ll get over it).

3. Jack still prefers waffles to pancakes, and does NOT like eggs.

4. I leave him on the toilet too long.

5. He’s done watching anything having to do with “Real Housewives.”

6. Jack knows who “Bad Dog” is.

7. Victoria Justice is cuter than Zoe (from Zoe 101), but he still loves Zoe.

8. He wants a tattoo and an earring.

This morning, as Jack and I sat on the front stairs waiting for the bus, I wrote, “How do you feel about your whiteboard? Love it, It’s okay, Sick of it.” He looked at me, laughed and circled “Sick of it”. Then he threw his arms around me and gave me one of his killer hugs. Sorry Jack, but this one is here to stay (I hope).

Love, Jess

quietly clapping

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As I looked through Jack’s backpack on Friday afternoon, I found a small whiteboard and a note from Monica (Jack’s school aide/school mom). She said that she had bought the board for Jack thinking it might be interesting, “He’s doing great answering questions. He’s so smart!”

I almost ignored the note. We get a lot of “great ideas” here at 26 Clinton Avenue, and most end up being less than successful experiments. The whiteboard lay on the kitchen island until later that night when Dan and I finally tried a few simple “yes” and “no” questions. Jack quickly and clearly circled the appropriate answers. We were impressed, but got distracted and didn’t think too much about it. Saturday we tried again with Anna, and she didn’t give her brother an easy time. She started asking questions, requiring Jack to read the options himself before circling the correct answer. Question after question he answered them all without hesitation. Eager to test how much he was reading, Anna took it a step further. She started writing out the questions silently. No hints or help. Jack didn’t miss a beat. He’d look at the question and circle the correct answer.

Over the last eight years we’ve seen hints that Jack could still read, but we had no idea to what extent. Until now, his fine motor skills have prevented much progress with holding a pen. Even something as simple as a circle was out of his reach. Now, Jack might not need to relay solely on his smile to get his point across. He may finally have access to words. AMAZING! Jack being able to tell us what he wants for dinner OR how he’s feeling OR what hurts. The possibilities are endless.

We’ve shared this update with some friends and family and the news has been greeted with high-fives, tears and hugs. Everyone knows that communication has always been on the top of our “wish list”. I think people have been surprised by our calm demeanor while describing this new milestone. I know we should be opening the champagne and dancing in the streets and we will – in time. We’re simply being careful. It’s self-protection.

Progress doesn’t always happen in a straight line and for people with ALD the road can be particularly inconsistent. ALD can tease you with progress than steal it back without explanation. This makes celebrating successes a little nerve wracking. Our family braces for good news as much as we do for bad news. I think every day that Jack is able to repeat his new trick/mind blowing triumph, we will feel a little more confident about celebrating. Until then, we are quietly clapping, dancing and doing summersaults.

Love, Jess

Our family has tried EVERYTHING to help Jack access language. It’s amazing that something as simple as a little whiteboard might be the start of a new chapter. Monica – we love you!!

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Jack didn’t miss a beat answering this one!

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Anna left this for Jack earlier today. He didn’t hesitate.

Being “liked”

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Yesterday I went on Facebook and asked people to “like” Smiles and Duct Tape. I need to explain. I wasn’t asking people to “like” me (not really). I was trying to get more information about who reads this blog. WordPress give me facts about country/age/gender, but I’ve been curious about specifics. I’ve wondered how many were friends, family, Maplewood folks, ALD families, or random people who like counting their blessing that their lives are easier than ours.

As soon as I hit send on my status update, I thought, my family is really going to get a kick out of this one. I have a reputation for needing a lot of positive reinforcement, and this seemed to prove the point. I’m not sure where my insecurities stem from, but since I was a little girl I’ve always needed more than my share of pats on the back. Although I am holding to my “need for information” excuse, there might be a little part of me that wanted to know if my words are worthy.

The most significant reason I write is because it helps me to process this life. Finding the right words is like working on a puzzle. I sit down with something on my mind and write without much thinking – like throwing all the misshapen pieces on a table. Then I start to organize the mess. As I work, I see the picture start to form as the story comes together. I know when the piece is finished, because the picture is clear and I feel lighter. If I can explain what we are going through, it means I’ve solved that puzzle.

But it’s not just for me, I also write hoping that this blog helps other people. Whether they’re families like ours who are looking for their peers or “typical” families trying to better understand what it’s like to live in our shoes. I think people respond to the blog because it’s real stories about a real family. And, there’s nothing complicated about the way I write. I fell into writing without much training and hopefully that makes my style approachable (although my lack of schooling may explain part of my insecurity). A friend once said that she could hear my voice when she reads my blog. That was the best compliment I’ve ever received.

So I write for survival and to help others, but I’d be lying if I said that I didn’t care about numbers and compliments. I do look at the stats every day and smile when I see a new reader or another country pop up on my stats page. I do like when someone reaches out to tell me that they enjoyed my latest piece – like I’ve been able to create some good out of this nightmare we’ve been through. It doesn’t make it worth it, but it helps and I guess I am still that little girl who needs validation.

Smiles and Duct Tape received 130 “likes” yesterday. Thank you! Now, if you can hit “follow” on the bottom right corner of this page, I can really feel like this whole blogging thing matters AND I promise to stop begging for love for a while.

Love, Jess

smack in the middle

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I live smack in the middle of two worlds. I know I’m not alone in this. Many special needs parents also have one foot in “typical”. We need to maneuver back and forth all day long. We usually manage to make it look seamless, but trust me – it can be exhausting. And, for our family it’s even more complicated.

Jack didn’t get sick until he was eight years old. Until then, he was reaching all his milestones and moving along like most of his peers. We experienced only “typical” for years before being introduced to “special”. Not sure if that fact makes our situation more difficult, but it certainly sets us apart from many in the special needs population. Sometimes I’m not sure we belong in either group.

Most of our community is part of the “typical” world. Jack was our first child and he was born healthy and strong. As he started school, we developed friendships with his classmates families – many are still our closest friends. We were knee deep in “typical” when ALD busted into our lives. We’re lucky that our friends have stuck by us through our journey. They’ve helped us every step of the way, but few of them can really appreciate what our lives look like day to day. Even those who spend a lot of time with us are rarely in the bathroom trenches, changing Jack’s g-tube or scheduling the countless doctors appointments.

We have made a few connections with other special needs families, but I sometimes feel like an impostor with that crew. They have lived this life longer and seem to have mastered the rules, the language, the ins and outs of all things “special”. They’re a welcoming group, but I’m still insecure with my role as special needs mom. I just float along, trying to do what’s best for my family, while keeping my eyes and ears open so that I don’t miss too many of the requirements of taking care of my special child.

Even though I often feel a little out of place in both worlds, most days I think I do a fairly good job. I can go to a varsity lacrosse game to watch one of my children race down the field and leave at half-time to give my other child hydration through the tube in his stomach. I can open a class schedule full of advanced courses from one school and then sit down to fill out a “seizure action plan” for another school. I can get home from a neighborhood party and, after drinking too much Sauvignon Blanc, text my daughter to remind her of her curfew and then change my son’s soiled diaper. This back and forth has become second nature. Only occasionally does living in the middle of two worlds become tiring. Maybe it’s lack of sleep or maybe I’m still mourning the end of vacation, but today has been one of those days.

This morning I woke to the sound of my alarm for the first time since June. I was so confused by the chime that I managed to incorporate it into my dream. Finally our rotten dog, Finn, got sick of the noise and woke me with a lick (sometimes that dog is so sweet). 6:30 and I are not great friends, but I was excited enough about Anna’s first day of school that I slid out of the cozy sheets and called up to Anna’s third floor teenage palace.

“First day Banana! I’ll meet you downstairs. Eggs! You need eggs for your first day.”

“Nope. All I want is a bowl of cereal. Too early for a big breakfast. And, I’m ready. I can do it myself.”

Then, she started walking down the narrow stairs. She had a bright “first day of school” smile and the shortest shorts you’ve ever seen.

For the next few minutes I had an internal conversation with myself. Measuring the benefits of allowing her to go to school with a smile, barley dressed or having a fight. She had such a great summer. She ran a lacrosse camp, conquered Outward Bound, and did more summer work that I think was fair or necessary. We’ve gotten along so well. I started to lean towards letting her leave the house without comment, but then I watched as she reached for a cereal bowl. Her tiny shirt started to rise up and I couldn’t help myself.

“Anna, you need to change.”

That’s when the screaming began. My camera was charged on the kitchen island, ready for that first morning picture. Instead of a sweet photograph, I said goodbye to my daughter and got nothing but a roll of the eyes and a slam of the door. She was wearing black, short cut-offs and a tight white shirt – that was after changing. Parenting Part One “typical” was complete.

I took a deep breath, turned around and walked up the stairs to check on Jack. I poked my head into his room, hoping he was asleep so that I could enjoy an hour or two for myself. I was greeted with a sweet smile and a sour smell. Time for Parenting Part Two “special”. I carefully helped Jack to his feet and walked him to the bathroom. I stripped him down in the shower, trying to avoid Finn disappearing with any of soiled clothing. Once Jack was showered, brushed, and dressed, I started the laundry and brought him downstairs for breakfast and medication.  At least Jack went through the motions with me, never losing his smile – and his silence was almost welcomed after the screams from his sister. Still, it’s been one of those days that my two worlds are not cooperating. I got shat on twice today before I’d even had my first cup of coffee.

Love, Jess

I did receive a text this morning from my princess, “I’m in study hall and bored. Text with me.” I’m pretty sure that’s an apology.

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Rehabilitate the Gait can wait

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I’m not going to lie. When I wrote yesterday’s post I was feeling a little blue. I was wishing that I could just snap my fingers and have Jack bust out of his new, annoying habit. But then, we went to the beach and I noticed that his gait on the sand had more steps than hops. I credit the input of the sand against my “sensory sensitive” boy’s feet, but I also think that Jack knew his mama needed a break. We had a great day and a delicious dinner overlooking the ocean. By bedtime, I had safely returned to my “glass is half full” perspective.

And, the fact is, Jack is still walking. He is completely mobile, it just requires more assistance and a lot of patience to get him around. Our family has been spoiled. Although we needed to modify our activities to make them Jack friendly, we could navigate this new life with ease. Now, it takes a lot of time — and hops. Worrying about this new complication being permanent will not help. Besides, we’re on vacation. We can refocus on Rehabilitate the Gait in September.

Attempting to avoid reopening my can of worries, when we were planning today’s activities we kept away from anything requiring many steps. A bike ride seemed like the perfect solution. Jack on a bike may sound like an unusual choice, but we have a BuddyBike and a dad who has been working hard to build his muscles so that he can manage peddling his boy around the island.

If you wonder why we are able to stay positive even when worrying about new challenges – take a peek at this video. Life is pretty darn good. The Buddybike is part of our duct tape!

Love, Jess

tiny, hairy, and perfect

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She is a gray shingled cottage with a blue door. Far smaller than our Maplewood center hall colonial, but each summer we fill her up and call her home for the month of August.

Two bedrooms and one bathroom is tight for our family of six. The dogs seem quite large when navigating around the space. And, Keegan’s hair can be considered an extra occupant, taking on a life of it’s own. Labs shed, and when contained within our small quarters, a thick layer of blond is added to everything within hours. Luckily, a benefit of a small home, it only takes a few minutes to pass the vacuum. It’s one of my only chores on Block Island.

The fridge is full of snacks and beverages and the closets are stacked with bathing suits, jeans and teeshirts. There’s always a puzzle in progress on the table and Anna has piles of summer homework littering the living room. I try to tidy up the mess, but it always looks a little chaotic. As we get into vacation mode, it bothers me less and less. On slow days, Dan often sets up a tent next to the clothes-line providing us an extra room, perfect for reading or taking an afternoon nap.

The number of guests in the cottage varies. With the exception of last summer (Dan’s magical Garden Leave), Dan is not able to come for the whole month. He dutifully goes back and forth on weekends from NJ to RI for the first two weeks. Anna opened it up further with her Outward Bound trip cutting into August. It allowed Jack, Keegan, Finn and I to have a few slow days of quiet and then Mymom (my mom) came for a visit. The following week Anna arrived with 3 of the 5 Mackays. The cottage was jumping as the amount of teenagers outnumbered the amount of old folks. Just yesterday, Anna’s friend, Natalie, arrived for her second time on Block Island. It’s great to have her here again, but Dan is now here full time and five humans gets a little tight. Thankfully, my in-laws are gracious enough to allow kids to stay in the bunk room. Five in the cottage might have just ripped the vacation mode right out of me.

The cottage is not the only house full of friends and family within the stone walls of the property. My in-laws have a house full from Memorial Day to Labor Day and we’ve gotten to overlap with tons of family. Their house is just steps away from the little cottage and it’s always full of commotion and energy. We head over for family dinners and too many cocktails on the deck. Such a treat to have some extra square footage and great family right next door.

A friend called last night and asked about our vacation, “How’s the cottage?”

I looked around the little cottage and smiled, “It’s tiny, hairy and perfect.”

Thank you PopPop and Sue for our August home.

Love, Jess

The Dancing Flamingo

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Those who have witnessed The Dancing Flamingo are always captivated. It’s not just unusual, it’s rather remarkable— considering the performer. For a child that can’t walk unassisted down a staircase (for fear of falling), I can’t explain how he manages a dance that requires so much flexibility, balance and coordination.

He starts by stretching tall. Getting so high on his toes that he looks like a ballerina. One leg suddenly bends (the knee goes higher than seems possible) and then he bounces. The dance is always paired with an electric smile and eyes that open wide and shine. The more excited he is, the higher the knee and the longer the dance. One Direction playing can set him into the routine within the first few beats of a song, and a visit from an old friend always gets him going – proving his memory is never at a loss. Anyone who has spent time with Jack since he choreographed his dance knows exactly what we’re talking about when we say, “The Dancing Flamingo”. There is no other suitable name.

On Tuesday evening, Anna arrived. As her and the Mackays (thanks for the visit and bringing her to us) pulled up the driveway, Jack was ushered from the cottage. He seemed excited, but when Anna got out of the car that leg bent higher than I’ve ever scene. And then he bounced and bounced as his sister ran up to hug him. Jack has been bouncing ever since.

Two weeks without our Banana was hard for all of us. One week at home going through the motions of real life and then a week here on beautiful Block Island. I thought that all the distractions of island living would soften the feeling that we were missing our family’s core, but it didn’t. Jack was definitely running a slower than usual and every time I mentioned Anna’s name he answered with question in his eyes.

When Anna arrived, she was full of so much love and so many stories. Outward Bound proved to be everything their web-site promised. I know that it’s time to start letting go of our girl, but our family is just too quiet without our heart. Now that she is back, I feel the blood flowing in our veins and we are ready to start our family vacation. I have a feeling we will be seeing a lot of our flamingo friend this summer.

Love, Jess