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Day 5: A Stinky Easter Egg in December…

This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…

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As I have been writing the thirteen days of Arthur, I started wondering if many people are aware that Roy and I do have other children as well.  Roy has two daughters, Caitlin who is 15 and Brittney who is 19.  I have 1 other biological child besides Arthur.  Her name is Marena and she is 15 now, she was 12 when Arthur was alive.  Yes, I’m fully aware that there is quite an age gap there, Roy and I both thought our respective families were complete when we combined them and Arthur came as a bit of a surprise.  I’m not sure if at first he was necessarily a welcome surprise to the girls, especially to Marena and Caitlin, but as my pregnancy progressed, they got pretty used to the idea and Marena started to really look forward to the idea of getting a little brother.  She had all sorts of plans for the things she wanted to teach him and to the media she wanted to expose him to.  Certainly Marena would be responsible for making her little bro proficient in all things pop culture.  One thing she especially looked forward to was the idea of passing on her favorite childhood book to him on his first Easter.  It was a board book that she had since she was about 2 years old and it was called “The Stinky Easter Egg”.  Marena treasured that book and would pull it out every Easter season to reminisce about the days when I would read it to her.  Passing that book to her baby brother was as important as any other family heirloom being passed from one family member to another.

Marena took a couple of days off of school to witness Arthur’s birth.  Since we knew he would have a short life expectancy, we gave her that option to ensure that she would get to meet him.  I was so grateful to have her there.  Marena reminds me a lot of myself when I was her age, and she is one of my favorite people to spend time with so it was nice to have her there with me.  I was honored that she was willing to spoil her perfect attendance at school just to hang out with us in the hospital.  Once he was born, she seemed to keep a distance from him and us.  I think she was the only person who didn’t either beg to hold him or simply pull him out of my arms.  She seemed to be more focused on if I was ok, then when other family members left the hospital for the 3 hour trip home, she decided to ride home with them and stay with her dad until we got Arthur home and settled.

When we got home, Marena and I had a very frank discussion about the severity of Arthur’s illness and that he likely wasn’t going to live for very long.  She was heartbroken, not only thinking about losing her baby brother, but also missing out on all the plans she had made as a big sister.  Then her eyes lit up and she ran into her bedroom and retrieved “The Stinky Easter Egg”.  For the first time, she asked if she could hold Arthur, so I sat her down in a big cushy chair and planted Arthur in her arms. It was the sweetest sight ever to see my oldest child, clad in penguin pajamas, reading an Easter book in early December to my youngest child, who was also wearing a penguin on his shirt.

Marena stayed at her dad’s house more than usual when Arthur was home and I didn’t pressure or even ask her to come home even though I wished she would have more.  I felt like she was dealing with her terminally ill brother in her own way and I was determined to let her have that.  After Arthur passed, Marena and I were talking about regrets one day and she told me that she wished she had spent more time with us when Arthur was home , but  said she knew if she was that sick she would need her mom most of all and didn’t want to take my attention away from him.  Very mature thinking for a 12-year-old if you ask me, although I wish she would have given me the opportunity to show her that I had enough love and attention to go around.

Arthur taught Marena independence, she thought for herself, entertained herself, and made decisions for herself during that time because she felt like I had too much on my plate to worry about her needs, even though I would have focused totally on her without questioning if she said the word.  Three years later, she is a very independent and mature young woman.  Through her experience with Arthur,  Marena taught me selflessness, she sacrificed the basic human urge to run to your mother for every little thing so her brother could have all of the attention focused on him. I couldn’t be prouder of either of them.

Marena and Arthur decked out in their penguin attire celebrating Easter in December

Day 4: Sticks and Stones…

This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…

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So the schoolyard rhyme says that names can never hurt me, but it’s wrong.  Broken bones heal, emotional scars from poorly chosen words take a lifetime to fade and they never completely heal.  Somehow as a society we have taken harmless words, loaded them with venom and assaulted each other with them.  One of the many valuable lessons I learned caring for Arthur is to choose my words carefully and administer them with kindness.  I’m not just talking about people who call kids who have intellectual delays names, I’m also talking about professionals in medical settings who are so wrapped up in using clinical jargon that they scare their patients.  There are also the well meaning people who know they have to say “something” to grieving parents and end up blurting out something very hurtful.

In a way, I feel that Arthur was lucky he led such a short life. One of the fears I had when I found out that he would be significantly behind intellectually is that he would be bullied by his peers.  I was terrified for the fate of the first person I ever caught calling him the “R” word, and I absolutely did not want to ever have to explain to him what that name meant.  Not only did I have to worry about other kids using this word to hurt his feelings, but I also had to worry about older people who were not up on the latest politically correct terminology.  I don’t think I could bear hearing an elder referring to my son as “that little retarded boy” without even realizing how that phrase stings. My job as a mother is to protect my children at all costs, and I felt as if the only way to protect Arthur would be to buy him a set of ear plugs.

Childhood bullies aren’t the only people who hurt feelings with words.  The most painful words I have ever heard anyone use to describe my son was the neonatal specialist who, upon viewing a prenatal ultrasound, described him as having “significant and severe facial malformations”.  He also told us that he would have “very significant physical and mental delays”.  These words were chilling to a mother who, until a few days earlier, thought she was having a perfectly healthy baby.  The clinical babble that I heard actually made me afraid to look at or bond with my infant who I had waited for so long to meet.  It would have been so much less painful had they told me simply that he would not look or behave like most other children.

Finally, after we lost Arthur, things seemed very weird with a lot of the people we saw every day.  Some handled the situation beautifully by a simple “I’m sorry”, or by just not saying anything at all.  Others made an all too difficult time even worse.  I was asked often if we were going to “try again”, as if we tried once and didn’t succeed, so surely we would be able to try again and replace him.  I was also told that we should be grateful that at least we have other children.  Well, we are very grateful for our other children, but that doesn’t mean we don’t have one missing.  The absolute worst comment was someone comparing the loss of our son to him having to have his cat put down.  Yes, I get that losing a pet is painful.  I know people who love their pets so much that I’m sure it’s just as painful, but it’s absolutely a different kind of pain.  Even people who have lost children don’t know the pain I experienced losing my own, Roy doesn’t even feel the same type of pain that I do, his pain is no more or less than mine, just different.  Even though bereved parents seem to have lots of feelings in common, none of us know how the others feel.

The ironic thing about Arthur teaching me about kind words is that I’m still under the impression that he had a hearing impairment.  When the hospital tried to do the hearing test that was part of the newborn screen, the machine wouldn’t work.  They actually made several attempts, but we never got a definitive answer.  He had a startle reflex, but it seemed to happen at inappropriate times, and he certainly responded to touch over sound.  Roy would sing to him and Arthur would snuggle in tighter as if he was rooting for the vibration.  It is very possible that Arthur never heard a word anyone ever said to or about him, but it just makes me feel better to know that he was spoken to with the utmost kindness and respect.

Day 3: Dress to Impress…

This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock…

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As I promised, the thirteen days of Arthur are about important virtues he taught us.  Today’s virtue is to always look your best.  I know you’re probably thinking that is not necessarily important to living a virtuous life and if you know me at all, you’re shocked at these superficial words, but bear with me.  I didn’t really understand the concept of looking nice while Arthur was alive, but Roy grasped it fully and used Arthur as a catalyst to teach me about dressing to impress.  I have also noticed this to be very common around the HPE community.  If you want to see the cutest, most fashionable children’s clothes, you only need to look for pictures of a kiddo with HPE, they’re all dressed as if they’re on their way back from their latest modeling gig.  So I started pondering the question, why do we do it?   When our special needs children need so many other things, why do we feel the need to dress them like a magazine cover?

A few years ago, before Arthur was even a sparkle in my eye, I went to a conference on poverty for work.  One of the things that I learned about the psychology of poverty is that impoverished people live for the moment.  When they have the money now, they spend it because they don’t know if they’ll ever get any more.  They also like to wear flashy designer clothes because if you look successful, you’re more likely to become a success.  In the grand scheme of things, looking good and wearing nice clothes makes you feel good about yourself and people in extreme poverty don’t have the opportunity to feel good about themselves very often.  Could that be why the parents of special needs children with grave illness tend to dress their children so well?  Is it because we feel that we have to live in the moment, dress our kids in that cute outfit today because we have no idea if they’ll live to wear a different outfit tomorrow? Do we feel like we simply don’t have the luxury of wasting a day at home in our pajamas?  Or is it because we feel like if we feel good about ourselves and the way our kids look, we won’t feel so bad about what’s going on inside our kids’ bodies?  After all, it doesn’t matter how many figures our bank balance involves, parents of terminally ill children all live with an impoverished mindset.  We know that very soon we will lose our most valuable assets, our priceless children.

When Arthur was with us, he was no exception to the rule that children with HPE need to always look like runway models.  Roy felt it was very important for Arthur to always look his best, and Arthur didn’t complain one bit.  Arthur loved being pampered and Roy was more than happy to oblige.  I liked to snuggle with Arthur in his jammies during the day when Roy was at work, but I always made it a point to start the process of cleaning Arthur up and dressing him by noon so he would be fresh and cute for when his dad got home.  It was a daily ritual for Arthur and I to sit on my bed and drag out a stack of clothes.  I would read whatever the outfit said aloud (have you ever noticed that baby clothes all have wonderful positive affirmations printed on them?  I think the world would be a much better place if adult clothes had slogans like “cute and cuddly” or “little helper” printed on them, they would make us feel much better about ourselves).  I would then put his hand on the fabric to touch it, and together we would decide what we wanted daddy to see him in when he came home.  So as not to disappoint all of our hard work, Roy would come through the door and compliment Arthur on how wonderful he looked.  The most fun we had pampering Arthur, however,  was when we would get ready to go out as a family on Roy’s days off.  Roy would whisk Arthur off to the kitchen to bathe him in the sink while giving me a chance to take a real “grown up” shower in which I could take all the time I wanted.  I will always remember the way Arthur would smell of lavender baby shampoo and have a very smug look on his face when Roy would bring him back to me wrapped up in a bathrobe like a junior Hugh Hefner.  Then, as a family, we would pick out his outfit and dress him, all the while telling him what a handsome little man he had become.

The last memory I have of Arthur is seeing him all dressed for the day of Christmas shopping that we enjoyed together as a family, he passed away in the car on the way home.  After he had passed, Roy bathed and dressed our son one last time, Arthur was now ready to go home.

Day 2: We got by with a little help from our friends…

This is a continuation of a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock.

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So as soon as we got our prenatal diagnosis that our baby was going to have a terminal illness, my instinct was to seclude our little family in a pod so no one and nothing could get to us.  I planned to go it alone, I even wanted to.  I didn’t feel like anyone sincerely cared, and was pretty sure that people would find me whiny for wanting to talk about my sick son.  I really don’t think this was a symptom of depression…that did happen, but I am very comfortable being by myself and in times of crisis, I really like to meditate and work out a solution.

Today’s note is a tribute and a thank you to those of you who wouldn’t allow this to happen.  Many of you know who you are, but you may not know the impact you had on me by doing both huge things and things that may have seemed small at the time to you.  Others of you knew you were doing something huge and certainly didn’t want me to find out how truly selfless your act really was.  People say that in times of crisis you find out who your friends are, and to an extent I feel it’s true.  There are so many people who did so much to prepare me for Arthur’s birth, coach me through his life, and support me after his death, if I didn’t mention you name, it’s not because I don’t appreciate you, I just chose the three people who I think of every time I reflect on Arthur’s life.

The first person who came to my rescue was my dear friend Courtney.  We had been close as coworkers as well as spending time outside of work together.  Courtney took the time to do the research about holoprosencephaly when I wasn’t ready to do it myself but wanted answers.  She had always been a true friend throughout my pregnancy and I felt that I could trust her fully with this task.  She was also courteous enough to not clue me in on some of the truly horrifying ways that HPE has been known to express itself with some of the kiddos who have it.  She gave me just enough information to comfort me without unnecessary worry and she also seemed to know when it was time to change the subject and distract me when things just got to be too heavy. She was one of the first people to visit the hospital once Arthur was born and also came by my home during his stay with us.  This meant so much to me considering she drove over an hour out of her way both times just to let me know she cared.  Considering this is one of the busiest women I know, I really appreciate the time she took for us.

Another person who really pulled through for Arthur and me is a girl who I only knew peripherally until Arthur’s birth.  Arna is the daughter of a coworker who had recently given birth to a son herself.  As her baby boy would outgrow his clothes, she would send them with her mother to work to give to me, something I really appreciated.  Once I knew of Arthur’s diagnosis, Arna would send me messages of encouragement which really meant a lot.  I am comforted in watching her son Beckham grow, he is only 5 months ahead of where Arthur would be, and I really appreciate that she gives me the opportunity to see him, view his pictures, and hear his stories.

I feel like many of my old friendships became strained after Arthur’s passing.  I was no longer the same person I was before he came into my life and many people who I enjoyed being around didn’t seem to treat me the same.  In my journey to find comfort and also to learn more about HPE, I stumbled upon the Families for HoPE website which is a support group for families dealing with HPE a few weeks after Arthur’s passing.  I contacted an amazing woman, Leslie, whose son Sammy had HPE.  Leslie immediately returned my e-mail offering me a ton of support and also sent me a packet of goodies from Families for HoPE.  The thing I didn’t know is that while Leslie was comforting me, her own son Sammy was very sick and would be joining Arthur in heaven soon.  The selflessness it takes to reach out to a grieving mother when one’s own family is suffering is such a remarkable quality and I will always admire Leslie for this.

I have also formed valuable friendships on my road to recovery.  People who have encouraged me to start and continue endurance walking (which is the activity that I’m pretty sure saved my life by keeping me fit and distracted), other HPE moms, other moms suffering infant loss, and the people who have surrounded me all along who watch my evolution without judging.  To everyone who has been there, thank you.

Arthur absolutely taught me to not go it alone, friendships and people willing to offer words of encouragement are vital.

Courtney meeting Arthur for the first time. Oh, did I mention, Courtney doesn't hold people's babies.

The Thirteen Days of Arthur…

Over the course of the next 13 days, we will share the writings of Melissa Mouzin-Bennett.  Roy Hancock and Melissa Bennett are the parents of precious Arthur who was born with HPE.  In a memorial tribute to their beloved son, Melissa will share in her own words the things that Arthur taught his family about life.

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The Thirteen Days of Arthur
by Melissa Mouzin-Bennett

My son, David Arthur Lawrence Hancock (“Arthur”) was born on November 28, 2007 with a condition called Alobar Holoprosencephaly.  What that means, in a nutshell, is that very early in his fetal development, his brain failed to grow and divide into the lobes that we are supposed to have.  I was 34 weeks pregnant when he was diagnosed which means that for the first 33 weeks of my pregnancy I thought I was having a healthy baby.  We were told by a medical staff that it was rare for babies with the severity of his brain “malformation” (as they called it) to be carried to term, this severity of the disorder usually leads to miscarriage.  We were also told that he would likely be stillborn, but best case scenario would be his living out his short life in NICU, with modern medical technology, they could keep him alive from a few days to possibly a few months. The term they used to describe his condition was “incompatible with life”.

Probably the worst thing the medical team had to tell me, as far as I was concerned, was what he would look like.  I was told that he had “severe facial abnormalities”.  He had microcephaly (meaning his head was too small) and a bilateral cleft lip and palate (all of the bone and tissue between his nose and mouth was missing, yet another part that failed to grow and develop).  I was absolutely prepared to give birth to someone who would not only behave very different from most babies, but he would look very different as well, and as we decided to deliver at a hospital that was 3 hours from home so he could get the best care possible, I was also going to be induced 2 weeks early.  That gave me exactly 4 weeks to process this information and prepare.  I was absolutely terrified.  I wasn’t ready to make the decisions that were placed before me and I absolutely wasn’t ready to condemn my son to living out an all too short life in a plastic box.  In one respect, I wanted to hold on to him and never let him go.  Another side of me was so afraid of what he would look like and I questioned if I had the courage to even gaze into his face as I was expecting it to be horribly malformed.  Finally, Roy and I made the decision shortly before his birth to have him placed on palliative care, meaning no extreme invasive procedures were to be done.  This would ensure that we would be able to take him home and make memories with him.  We chose quality of life over quantity.  A decision that no parent should ever have to make.

The day Arthur was born was absolutely surreal.  My biggest fear that day was what would he look like.  Funny when faced with enormous legitimate fears, our minds always choose to dwell on something so insignificant, but they do.  I didn’t want to see him for several minutes after his birth, and the medical team was instructed to give him to his dad first.  I needed time before I could meet him.  The doctor handed him to his dad and informed me that he was really cute, she was sure he looked nothing like I was expecting.  I still wasn’t sure so I let Roy bond with the little squirmy blanket in his arms for a while longer.  I noticed how Roy was absolutely undisturbed by Arthur’s looks.  Then he told me that Arthur had my eyes, and I totally couldn’t resist taking a peek at my son.  He was absolutely beautiful!  Yes, he had a cleft palate, yes, his head was too small, but only at the top which made his cheeks look even chubbier than they were.  No, he didn’t look like most babies, he looked like my perfect little man.  And Arthur looked back at me with those blue eyes that were little clones of mine, and I knew I had the courage to do this.

I want to honor Arthur’s life this year by writing a daily note from now until December 11, the day he went to heaven (our family calls this Angel Day).  Since Arthur was born without the ability to learn, it’s obvious he was here for one reason.  To teach.  Each day I want to discuss a virtue Arthur taught us and also include a never before posted picture of him.  I feel that not only is this a wonderful way to honor a beautiful life, but also as it is so close to Christmas, to remind us all of how we should be treating ourselves and each other.

Today’s virtue is courage.  I don’t know if Arthur was courageous or not.  He was handed a really crappy set of genes, and was fortunate enough to be an infant without the intellect to truly understand what was happening to him.  He taught US courage though.  Roy and I learned how to speak up and make some very unpopular decisions that we felt would add quality to his life, even though we knew they likely reduced his days on earth. We also learned to face each day “as if” nothing was wrong.  We wanted Arthur to know he was loved and that’s all we cared about.  I feel that now that we have experienced life with Arthur, we can handle anything.

The first moment I laid eyes on my little man. Gazing into his little blue eyes gave me all the courage I needed for this journey.

Happy Halloween

Halloween can be a challenge for parents, and there are so many uncertainties that we face.

  • What costume?
  • Will it keep my child warm enough?
  • How do we incorporate the wheelchair into the costume?
  • How do we get to the front door if there are steps?
  • My child has a g-tube, so what do we do with all of this candy?
  • We won’t spend this Halloween in the hospital again, will we?

Even with the challenges, we push forward, we make plans, and we create great memories with our children. And sometimes, our kids end up with the best costumes in the neighborhood!

Do you have a Halloween memory you would like to share?  If so, please comment below and share your memory.  If you would like to share a photo of your child in a costume, please send the photo to info@FamiliesforHoPE.org.

Everyone have fun, stay safe, and don’t go to bed with a tummy ache!

2006 HPE Family Conference

Sweet Inspiration


It only takes one look at the smile on 3 year-old Maeve Tierney’s face to see that she’s full of sweetness, and apparently, that’s a family trait.  Maeve’s 8 year-old cousin, Cece recently used sweet treats to help raise funds and raise awareness of HPE.

At Craneville Elementary School in Dalton, Massachusetts, Cece’s third-grade teacher gave $5 to each of the students and challenged the students to make that $5 “grow”. Each child was allowed to choose his or her own method of growing the $5, and each was required to select an organization he or she felt strongly about supporting with the earnings.

Inspired by Maeve, Cece chose Families for HoPE as her charity, and she invested her $5 in supplies to make brownies and muffins. Once she had the product ready and her marketing plan in place, Cece set up shop outside of her grandfather’s business, with HoPE for a profitable bake sale. Priced at $1 per sweet treat, Cece grew her $5 into $43.00!

Such an awesome job, Cece!  Thank you for being so thoughtful and sweet!

A bake sale is a great way for kids to help raise funds and raise awareness for HPE.  Other ideas for kid-friendly activities include:

  • Open a lemonade stand
  • Encourage reading by organizing a Read-A-Thon
  • Have a coin drive
  • Ask you school to host a PJ Day or Silly Hat Day
  • Organize a Twister tournament or Dance-A-Thon
  • …Do you have an idea to add to the list? If so, comment below.

Some Kid

Throughout my journey in the HPE world, I have had the privilege to personally meet many individuals with HPE. So often, I find that I don’t even have the words to adequately describe the encounter because I’m so humbled by the experience. I can recite the definition of holoprosencephaly forward and backward in my sleep; I can quote statistics off the tip of my tongue; and, I can explain the symptoms and secondary conditions that are common with the diagnosis without missing a beat. Like many of you, I feel as if I may have earned a Ph.D. in HPE, if there were such a thing.

I can tell you all about what our children have, but when it comes to describing who our children are, I do not have concise words to adequately describe them all–I could talk for days on end about all of our amazing kids with HPE. With my own son, Sammy, there are moments when I catch myself saying, “He was some kid.” Not “some kid” as in a random, nameless person; but “some kid” in that he was spectacular, similar to the phrase, “Boy, that was some game we watched last night.

Charlotte's WebSome kid” makes me think of Charlotte’s Web, the classic children’s novel by E.B. White. From the very first line, we learn that the life of Wilbur is threatened. Wilbur, a newly-born piglet, is described as “very small and weak, and it will never amount to anything.” A barn spider named Charlotte is determined to save Wilbur, so she spins a web in the barn that reads “Some Pig” in an attempt to convince the farmer and the surrounding community that Wilbur is special and should be saved.

As parents of children with HPE, we know our children are something very special, but too often, we see the looks and hear the whispers of others in our communities (and sadly, even members of our own families at times) who view our kids like little Wilbur. In her attempt to save Wilbur, Charlotte also created other webs describing Wilbur as, “terrific“, “radiant“, and “humble“.

If you were to weave a web over your child to describe him/her in 1-2 words, what would your web say?

Terrific