A New Year’s Gift

January 10, 2013 at 2:02 am

Massachusetts is a special state (nay, Commonwealth!), which has more comprehensive programs for helping children with medical complications than many other states. For that reason, I always tell Sherin we are never moving. A job in NY or London? Fine–but that’s a long commute for you!

Still, no state or commonwealth is perfect, and one thing that has always irked me about Massachusetts’ Medicaid policy is that if a child who has a tracheostomy and is eligible for home nursing care (and qualifies for the Kaleigh Mulligan program, see my post in May 2012), AND that child is getting healthier each year because of that care, the child’s allowed nursing hours are reduced each year.

It’s a perverse policy that even a then 10 year old Lucy could figure out. When Ben’s nursing hours were cut yet again due to terrific prevention on our and our nurses’ part, Lucy said, “you know Mom, you just have to let Ben get sick, go to the hospital, and then they’ll give you the nursing hours back”. Exactly! And how wrong is that?!

What made matters worse is that our school district has a legal requirement to provide 1:1 nursing to Ben while he is in school. So Wellesley Public Schools pays for a nurse to ride the school bus with Ben, attend school with him each day, and ride the bus home. The catch is that the nursing hours that WPS uses from Ben’s eligibility pool–and for which they PAY (meaning Medicaid does not)–are hours the Elwy family then loses at home. As Ben’s health has improved, and his nursing hours are less each year, this means we are now in the negative nursing hours range at home.

Ben and sisters enjoying an end of 2012 celebration at The Nutcracker

Each year a nurse case manager from Community Case Management and I meet to assess Ben’s health from the previous year. This means I explain how many hospital visits he’s had, how many ER trips we’ve made (usually none–because we TRY REALLY HARD NEVER TO GO TO THE ER), and a functional assessment based on my poor memory. Because I always think things are rosier than they are, I’ve started using my Microsoft Outlook creatively to track Ben’s ‘bad’ days. It mostly works. I also have to have some sort of knowledge of how many times we suction Ben, how long it takes for us to help him with toileting, how long to do his stretches, etc. “You suction him once a night every two days? How long does that take?” It would make a good Seinfeld skit.

But two years ago a new nurse case manager started working with us, she listened to my yearly complaint about how the evaluation wasn’t assessing how much effort our family and nurses were putting into Ben’s care, and how it didn’t matter how many nursing hours she gave us because the school would use them instead of us.

It’s December 20, and Sherin and I took the day off to put together a new bed for Charlotte, a Christmas gift. There’s no time on the weekends to do this, plus it wouldn’t be a surprise if she were home. As we are out buying the mattress and bedding, we decide to treat ourselves to the delicious Oga’s. As we pull into the parking lot, I get a call from the nurse case manager. “Are you sitting down?” she asks. She has received permission to create a pilot program for kids like Ben, whose nursing hours are used by the school district (apparently there are a lot of us) and who therefore have no hours at home and must pay out of pocket for nursing care. After her careful assessment, she has granted us, in addition to the school hours that WPS uses, 23 hours of HOME CARE.

I am shocked. This is what I always wanted, asked for and never got. She says “put your hand under your chin and close your mouth”. HA! You would have thought we were on video chat.

I cannot thank her enough. I am nearly in tears. This is such a HAPPY DAY. Sherin and I enjoy our lunch, marveling in the advocacy of one person who can figure out how to make a system work.

I just signed the paperwork to accept this new program. I am thrilled. To give you an idea of what this means:

1) we no longer have to pay $45 dollars an hour to the nursing agency for the time the nurse spends with Ben and we are at work (and of course, the nurse is not paid all of that money)
2) when Ben wants to stay after school to join the chess club, get extra home work help, or work with a partner on a project, HE CAN because the nurse can now stay with him
3) Sherin and I can go on DATES!

It’s the beginning of a kinder, gentler, more beautiful new year.

By Rani Elwy | Posted in Advocacy, Health Policy and Management, Schwartz-Jampel syndrome | Tagged , , , | Comments (7)

Wheely dogs and international friends

October 24, 2012 at 9:57 pm

Sunday evening I was driving down a residential road with Charlotte and Ben, and slowed down when I saw a couple walking their dog. It was dark, but I caught a glimpse of the dog and saw that the dog had hind wheels instead of hind legs. I told C&B this and they both immediately said "Ohhh!" and "That's so sad!". But I said, "Ben, that dog isn't much different from you. You use a walker with wheels to get around, and that dog uses wheels too". This completely changed the conversation. Ben said "Cool! I wonder if the dog can do wheelies too?" I just laughed. And I thought, I've got to get Ben a dog.

Ben and Grandpa with Daisy Bear, August 2012

In August, my parents visited with their Golden Doodle puppy Daisy Bear. I am highly allergic to dogs and apart from our neighbor dog Jake--who literally just comes into our house as any neighbor child would do--dogs are completely forbidden in the Elwy home (somehow I just can't say no to Jake). But my parents had been assuring me that Daisy was no ordinary Golden Doodle. She is, in fact, nearly all (black) standard poodle, so she has very little golden retriever in her. I knew the kids would be thrilled to see Daisy, so I relaxed my rules. Daisy traveled 700 miles, through Canada, with appropriate immigration papers, and hung out on Laurel Ave for a good six days. I didn't sneeze once, and the kids were very, very happy to have a dog in the house.

Dogs and disabilities converged yesterday. Sherin told me about an article he read in the UK's Daily Mail online about a 7 year old boy named Owen, who has Schwartz-Jampel syndrome, and how as he became aware of his condition, he was afraid of going out because he felt so different from other kids his age. His father helped Owen adopt a 3-legged dog, Haatchi, and since then, both Owen's and Haatchi's lives have improved dramatically. You just have to look at the pictures in this article. All children with SJS have similar features, but Owen and Ben could be twins.

But it gets better. I'm thinking "Owen, UK, SJS, email...I think I know this family!". I weeded through bazillions of emails today and sure enough, in May 2010, Owen's mom Kim sent me an email. She had found us when Googling Schwartz-Jampel syndrome and wanted to connect to find out what we were doing for Ben. Although SJS is a very rare condition, since 2003, when I first began writing about life with Ben, I've had 1-2 families who have a child with SJS each year contact me so that we can share information. It was one of the many reasons I started writing this blog.

Kim is not featured in the Daily Mail article, and indeed, we can attest to how raising a child with a serious medical condition takes it toll on relationships. But clearly both parents are very involved in Owen's life--but maybe not more than Haatchi!

I'm now going to have to weed out that NEADS application that I picked up from a representative at the Federation for Children with Special Needs conference many years ago. I think it's time we think seriously about a therapy dog for Ben...or maybe, as Owen did, we create our own therapeutic situation. Maybe Buddy Dog will have a bonafide standard poodle just waiting for us, if I try hard enough. He or she won't have to have wheels, or a certain number of legs. The unconditional love that flows both ways is what anybody needs.

By Rani Elwy | Posted in Advocacy, Family, Schwartz-Jampel syndrome | Tagged , , , | Comments (7)

Birthday Boy…Drumroll please!

July 31, 2012 at 10:16 pm

What do JK Rowling, Harry Potter and Ben Elwy all have in common?

They were all born on July 31!

There are many similarities between Ben and Harry. For one, they both have scars (although Ben wishes he had a cool lightning-shaped one). They both like moving fast. And they both have parents who adore(d) them. In fact, Ben's parents (ahem) love him so much they were up until the wee hours of the night to prepare for a literal bash as soon as daylight poured in.

This is how Ben woke his sisters today...


And later, we celebrated over sushi at Ben's favorite Japanese restaurant Yama, where they surprised him with a birthday candle in his favorite fried ice cream.

Eleven years ago today, Ben was born fast--I started delivering after having been at the hospital for only half an hour (see what I mean about fast?). It was not an ideal situation. Most of our belongings were enroute to Michigan from London on a boat that didn't realize that Ben had a different timetable than it did. So I delivered a newborn without the benefit of lots of cute baby clothes and blankets, and with no crib or changing table in sight. As the hormones kicked in, this lack of material goods devastated me.

I didn't realize at the time that this was Ben's first of many lessons for me. Number one--all you need is love. Sure, it would have been nice to have a plush baby room, a soothing rocker, some cute pictures on the wall, and a safe place to lay Ben down. But I certainly wasn't the first mother to give birth to a child without these luxuries.

Sherin and I remembered this lesson of "all you need is love" as we struggled, over and over, to put that darn drum set together last night, taking apart pieces as we realized we put it together wrong, watching the time getting later and later. This was one of those our-marriage-survived-this-episodes--which I put up there with our one time decision of moving the piano. If you want to stay married, don't move a piano or put a drum set together. But if you do attempt these things, remember the love lesson. We sighed, paused, remembered that we loved each other and Ben, and this is why were doing this crazy night time activity.

And when Ben woke up, noticed the drum set, stared at it for a minute, and then turned and gave me a HUGE hug, I knew it was all worth it. Ben, you are always worth it. Happy Birthday my love.

By Rani Elwy | Posted in Family, Music | Tagged , | Comments (2)

Summer Computing Fun!

July 23, 2012 at 9:21 am

Finally, by the middle-to-end of July, I feel like we've got the summer rhythm going. Boy, it took a while! For me, summer is one of those things that I know will hit, but like the first snowstorm, I am always surprised when it does. I wish Sherin and I had the time to take off to make it a true summer vacation, but in the absence of that, we turn to great camps to make sure our kids have fun and feel like they are doing something cool and different.Ben demonstrating how to play his game to Mom, July 2012

But summer has always proved challenging for Ben. Most activities and camps are either not suited for him or he doesn't want to do them. This year, with the support of Wellesley Public Schools, we asked him to try something new--two weeks of Robotech camp at the Museum of Science. I'm not sure who was more nervous--Ben or me. The first week Ben's class was "Designing Mario-like Video Games"--are you kidding me? Was this designed for Ben or what? And this week Ben is starting "Designing Websites with Special Effects". Maybe he'll take over this blog for me!

Sugar Rush, the game, by Ben ElwyA week ago Monday, it was the first day of camp, and Ben heads to the Museum of Science with his nurse. I've spoken to the director so I know that 1) they are prepared for the wheelchair, walker and nurse; 2) they have assured me that the very cool MIT students who are teaching the course will make sure they include him in everything; and 3) I've coached Ben on how to approach other kids and introduce himself--because it's been a long time since he's been in a place where he knows no one at all.

After the first day, when Sherin asked him how it went, Ben said "I don't like people staring at me". Ah, dagger in heart. We've always been there to broker those introductions, explain medical symptoms, but also explain how normal it all is. We've now reached a place where this is Ben's territory. He has to do it, and like any parent watching her kid do this for the first time, it's really, really tough. I said to Ben, "You have 2 choices. You can either just go up to kids and introduce yourself and not say anything about your muscles or your trach, and let them just get used to you, OR you can introduce yourself and right away explain your muscles and your trach and ask them if they have questions".

THIS IS SO HARD. I would hate to have to explain my eye color, the extra pounds I wear around my middle, the big scar on my ankle--and no one has ever asked me about this. But for Ben, he has to address this elephant in the room and then move on with life. It's his future, so I know he needs to get used to it now, but I just can't even imagine how hard that is to do.

But by the end of the week, he talked about new friends, how much he loved programming, and we even had conversations about what his life would be like if computer programming was his job. Holy Moly! What a great kid. I'm so proud of him. I spent Saturday morning watching him do some last minute programming changes to his game, Sugar Rush--where King Carrot has stolen the hero's strawberry shortcake and the point of the game is to get it back, while dodging those flying carrot bombs--and was so impressed with his new skills.

Today, for work, I'm going to be in a new situation, with new people, explaining new ideas, and I'm going to take a lesson from Ben's life and just go for it. I couldn't have a better teacher in the world.

By Rani Elwy | Posted in Advocacy, Education, Schwartz-Jampel syndrome | Tagged , , , , , | Comments (2)

A Tentative HOORAY!

June 28, 2012 at 10:25 am

I'm spending an intellectually exhilarating--yet a little exhausting!--week with 19 other Implementation Research Institute Fellows in my first year out of two years of training in the state of the art in implementation science. I'm trying to figure out which strategies will be most effective in making sure that evidence-based practices for treating Veteran patients with mental health disorders are actually delivered to them.

But the question all 20 of us really should be asking is--how can we effectively implement a health care system that discriminates against NO ONE in this country? Our good friends in the United Kingdom, Germany, Canada, the Netherlands, France, Sweden, Finland and more live this dream of ours. We know that no health care system is perfect--although Sweden seems to be close--but what is immensely clear is that the United States is down there, among the worst.

We've taken a break from our 14 hour daily training schedule to watch CNN for 30 minutes. There was a collective GASP, silence, as the reporters first stated the individual mandate was struck down, and then a CHEER, as the reporter then said, No, the Roberts Court states that the INDIVIDUAL MANDATE COULD BE UPHELD UNDER A TAXING CLAUSE.

Dada, my dear, late grandfather in India, I long to know what you would say about the constitutionality of the Patient Protection and Affordable Care Act. And more than anything, I wish you could have met Ben. Then you would realize, despite any views on ACA, why I and others fight so hard for our voices to be heard in this debate.

Update from my brother who works at the Department of Justice, from the SCOTUS Blog:

"The bottom line: the entire ACA is upheld, with the exception that the federal government's power to terminate states' Medicaid funds is narrowly read".

We'll be talking more about Medicaid later!

By Rani Elwy | Posted in Advocacy, Health Policy and Management, Mental health | Tagged , | Comments (0)

Always Ask!

June 23, 2012 at 11:14 pm

Charlotte's first foray into the land of Wellesley Little League has recently ended, and I think Ben is glad. We went to a lot of Sunday afternoon t-ball games this Spring, and we experienced excitement like a wasp's nest in a tree above our head that made us run for our lives. Ben put the ZOOM on his wheelchair and was past right field before I knew it!

There are a LOT of questions to ask about this! Ben and Char, 2007

There are a LOT of questions to ask about this! Ben and Char, 2007

After one game, an adorable, chatty boy from the other team came up to Ben, Charlotte and me, started talking to Ben and Charlotte, but then whispered to me, "I feel bad for him". Although I was hot and tired and wanted so badly to go home, or better yet, get our favorite Truly Yogurt treat (!), these are the moments that must be seized. I know that how I handle these situations will impact this young lad's life and how he approaches others with disabilities in the future. What pressure! I feel like I'm up to bat.

So I bent down, started talking to our new friend, and explained that there was no reason to feel bad, because Ben is very happy--he participates in lots of different activities, does well in school and has lots of friends. He and Ben started talking directly to each other, the young boy asked questions about the wheelchair, Ben answered them, and any potential awkwardness was diverted. His mother came up to me and apologized for the numerous questions her son had asked, but I assured her that it was all good, and I thanked her for letting her son ask these questions. When in doubt, always ask!

A long time ago in a restaurant, another child wanted to ask a question and his mom didn't let him. Ben was wearing full leg twister cable braces at the time, and this kid had questions. Who wouldn't? I didn't interfere between the boy and his mom, but I've never stopped thinking about that, and I wish I would have. Ever since then, if I sense this kind of tension, I go up to both parent and child and say, "it's okay to have questions, what do you want to know?" and we take it from there.

Sometimes it is hard to be this patient and forthcoming. Sometimes we just want to go to a ball game or restaurant and not be noticed. A friend whose son with cerebral palsy was 20 years old, finally had enough of this, and once said to a woman, "Would you be willing to tell everyone your medical history?" when she had politely, but in his view, inappropriately, asked about his son. I hope I don't get to that stage. I hope Ben doesn't either. Lately, when I am explaining things to adults, Ben has started interjecting with "Mom, that's personal!" with a new, pre-teen like attitude. But he doesn't do this when I'm talking to kids, because I think he also knows that these conversations are important.

I've always felt that if we try to stop kids' natural curiosity, the messages they receive will only tell them that they are doing something wrong, or that the person they are curious about has something wrong with them, and that they should stay away, or worse, be afraid. This couldn't be farther from my goals. Since it is a lot harder to change adults' attitudes, I want to focus on kids. I want kids to know, appreciate and understand the full diversity of life. If your kids ever have questions, about Ben or anyone else, trust that they will know how to ask these questions, and please let them. It's better for all of us.

By Rani Elwy | Posted in Advocacy, Family, Schwartz-Jampel syndrome | Tagged , , | Comments (3)

Flying High!

June 10, 2012 at 10:41 pm

When Ben was 5, his greatest wish was to fly. He didn't care how--either planes or rockets would do. He was granted a room in which he could dream of flying, from the incredibly generous Room to Dream Foundation, who selected Ben as the third child (at that time) to benefit from a newly created healing space in which Ben could focus on living instead of his chronic health issues. Decked out with an airplane light and mural, a "hangar" closet door, and pictures of astronauts with personal messages to Ben, how could he not dream of flying high?

Ben the flying squirrel, May 2012

Ben the flying squirrel, May 2012

Last week at Hale Reservation, Ben, along with his 5th grade classmates, did indeed fly high. With the determined help of Sprague school's physical therapist and Ben's teachers, Ben became a flying squirrel! He was also able to go up in the ropes course swing, and with Beth Quinty, aka MacGyver, Ben was able to participate in rowing as well. I happened to be in Minneapolis at this time, attending the annual meeting of the Association of University Programs in Health Administration, a teaching conference for faculty in health policy and management programs, but I got regular updates from Beth along the way. When I later asked Ben what his favorite activity was, he said, "The ropes. I could have stayed up there all day!". He may now be twice as old, but his love of flying is still strong!

Ben's love of planes--and moving fast in general--is so BOY. We know he would want to dive into a bathtub if he could. When Charlotte was asking about swimming lessons today, Ben said to me, "when will I get my trach out so that I can swim?". And if that weren't killer enough, Ben was showing me the website he just created about Louis Sachar and his books, the final part of a long author study project. The website is so professional, I was blown away. On the "about the author" page (which is about the student, not the author studied), Ben wrote about himself, saying that above all, he "wants to be normal and explore the world".

As I said to the TV reporter who covered Ben's room transformation five years ago, we try to do everything for Ben because we want him to do everything he can. So many people along the way have helped us feel like we and Ben can do everything and anything. Stefan Nathanson, Mike Collins and Bill Hughes, founder and founding board members of Room to Dream Foundation started Ben on his flight in Kindergarten. Beth Quinty, Heather Heon, Paul Johnson and SO many teachers, therapists and friends along the way have made sure that Ben remains in flight.

When the 5th graders fly up to the middle school this week, I'll be looking forward to another leg of the voyage, but I'll never forget where we've been. It's been an unforgettable ride, and one that I could never have imagined in my wildest dreams.

By Rani Elwy | Posted in Education, Health Policy and Management, Schwartz-Jampel syndrome, Sports activities | Tagged , , , , | Comments (42)

Random Acts of Kindness

May 28, 2012 at 10:52 pm

Ben enjoying his tofu, rice and beans burrito at Boloco, May 2012

Ben enjoying his tofu, rice and beans burrito at Boloco, May 2012

Our town's Memorial Day celebrations took place last weekend, so this weekend, Sherin and I basked in limited scheduled activities and actually finished some projects around the house. We needed to run some errands with Ben and Charlotte in tow, and afterwards, we treated them to their favorite burrito place, Boloco.

Boston Local Company, aka Boloco, has been one of our favorite eateries ever since Ben started spending numerous nights at Boston Children's Hospital, because 1) it's just across the street, 2) the food is fresh and yummy and 3) it's inexpensive. A winner by our books! Ben, a vegetarian, loves it because he can add tofu to everything. On Saturday, after describing our children's numerous requests (hold this, more of that) and while I was fishing cash out of my wallet, Shawn, who was taking our order at Natick Boloco said, "No worries, this one's on me!".

Stunned, I just looked at him and said "Why?", and he said, with a big smile on his face, "because he's so cute!", obviously referring to Ben. I continued to just stand there, but managed to utter a "Thank you so much", and then sat down. I kept thinking, "why did he do that?". His kindness prompted me to think about the field of helping behavior, which examines why people make decisions to help some people and not others. Bernard Weiner experimentally determined that people help if they feel that the conditions under which someone needs help are uncontrollable, not their fault or they are not responsible for whatever has happened to them. Researchers in the social work field also found that altruism and generosity makes people healthier and happier. This concept is now known as the helper therapy principle, which therapists use to help people with mental illness through their recoveries by engaging them in acts of helping others.

Our family has experienced so many random acts of kindness over the years: the pharmacist offering Ben tickets to a Bruins game, a friend inviting Ben to a Celtics game, a friend giving Ben his iPad, numerous offers of taking Lucy and Charlotte out when we are home caring for Ben, friends dropping off groceries or full meals when they know it's hard for us to get these tasks done, and so many more acts of kindness. We try to "pay it forward" by doing as much as we can for others who need our help. And I can certainly attest that it does indeed feel good to help others. So let the "helper therapy principle" reign for all of us!

As for Shawn, I later regained my composure and talked to him more indepth when he wasn't so busy. I think he knows how grateful we were for his act of kindness. And lest anyone think this is a freak incident, I must disclose that at least 4 years ago, when Ben and I were in the Natick Boloco, another employee gave Ben a Boloco gift card, presumably for the same reasons. There is a lot of helping behavior going on at that Natick Boloco!

By Rani Elwy | Posted in Family, Helping Behavior | Tagged , | Comments (1)

The Road Others Traveled

May 22, 2012 at 10:42 pm

Ben playing mallets at All Town Band, June 2012

Ben playing mallets at All Town Band, June 2012

Tonight, days after Katie Beckett died at the age of 34, Ben performed with classmates from seven other elementary schools in the All Town Band. Although Ben had initially been nervous about playing both in his school and All Town band, and I knew that my involvement at all rehearsals was going to be necessary (I'm Ben's roadie), no one batted an eye at the thought of Ben joining the band. Inclusion is the norm, not the exception, for Ben.

Of course it wasn't always that way. In 1981, Katie, who had spent 3 1/2 years in a hospital, was allowed to come home to live when President Ronald Reagan created a policy change to Medicaid that allowed children who require care comparable to a level of hospital care to receive that care at home. And guess what? Home care costs 1/6 of the hospital cost.

This Medicaid waiver, in honor of Katie and her family's plight, was named the "Katie Beckett waiver" in most U.S. states. In Massachusetts, it is called the Kaleigh Mulligan waiver, after a similar girl's situation. Prior to Reagan's intervention, Medicaid would only pay for such services when the child was hospitalized. If you went home, you were on your own.

Now, this type of waiver can pay Ben's nursing care, his multiple equipment purchases such as his power wheelchair, his walker, his hospital bed, a toilet chair and bath seat, and an ergonomic seat that allows him to sit comfortably at a table but can be put on a manual wheelchair base as a backup to his power chair. The waiver also pays for the rental of his oxygen concentrator, air compressor, pulse oximeter, the numerous boxes of catheters, sterilized water, trach ties, trach filters, tubing, and more that arrive each month.

Aging in place-the current push in long-term care which advocates for elders to stay in their homes instead of moving to nursing homes-- takes on a new meaning when the age of the population is in single digits. Why split up families just because one child needs significant medical care? Why hurt these families even more? Why not show the world that all people, no matter their abilities or medical conditions, have something to offer?

Tonight Ben showed that he has something musical to offer the world. On mallets (bells), his favorite percussion instrument, he played perfectly, not missing a single note, while his nervous mom watched from the side of the stage. And in my pocket were extra trach filters, paid for by a Medicaid waiver, in case Ben got gunky and need a quick change during the concert.

Over 500,000 children and their families have benefited from a Katie Beckett waiver since 1981. Thank you Katie for your advocacy from such a young age and thank you Julie Beckett for showing parents like me how to envision change. Your road traveled has made our journey so much easier. There will always be diversions, road blocks and forks, but through your examples of courage and strength, we know what to do.

By Rani Elwy | Posted in Advocacy, Health Policy and Management, Music | Tagged , | Comments (3)

Are You Attached?

May 16, 2012 at 10:49 pm

When my oldest daughter Lucy was born in 1998, it took me one week to realize that this young lass was never going to sleep according to my schedule. Daytime--always asleep. Nightime--always awake. Unless I planned on becoming nocturnal, I was just going to have to figure out a way to cope. Enter the family bed. And when Lucy was just 3, and Ben was just born, people said, "what are you going to do now?". Ben had the same idea of sleep hours as Lucy, but this time, Lucy took matters into her own hands. She declared "he's too loud!" and went off to sleep in her own room and in her own bed, for the first time, without any fuss.

Some sibling snuggling in Ben's hospital bed, 2007

Some sibling snuggling in Ben's hospital bed, 2007

Without planning to, we were following what "attachment parenting" disciples had been preaching for years. Time magazine's May 10 cover story on attachment parenting by Kate Pickert has been all the rage--and has caused rage--for the last week. Kara Baskin has summed up why--because it seems that we parents are more focused on what parenting means for us, and are not thinking about the bigger picture for our children.

But attachment parenting behaviors may be viewed in a totally different light for parents of children with medical complications. Prior to his tracheostomy, Ben used to sleep with a pulse oximeter sensor wrapped around his toe, and this machine's screeching alarms would notify us when his oxygen levels went below 89%--which meant it went off several times an hour. In order to stop this racket from waking the whole house, I would often sleep in his bed, so that I could quickly shut off the alarm and save Lucy and Sherin from the horror. When Ben would wake up in the middle of the night in terror because he didn't remember going to sleep with the threatening CPAP mask on his face, being closer to him helped me soothe him faster. And now, I still awake once or twice each night and traipse to his room--every night--to wipe away the goop he coughs up from his trach, turn him from his favorite right side that I'm afraid will become tender with sores, and when he is sick, suction him. I often think, I might be getting more sleep if I was sleeping in his bed.

We can't be in every parent's shoes. Co-sleeping, extended breast-feeding, and other attachment parenting behaviors may be the ways that some parents-- who have lost a child to miscarriage, or who are coping with a child's life-threatening illness, or who work all day and feel like they are missing out on so much--cope with life's circumstances. I don't know many parents of 10 year old boys who curl up in their son's bed, but if you meet one, please know that their behavior is probably based on circumstances that not every person can understand. Instead of trying to understand, we should just accept.

By Rani Elwy | Posted in Family, Schwartz-Jampel syndrome | Tagged , , | Comments (1)