Saturday, December 29, 2007

The Mother at the Swings

Eva's mom Crystal posted this, and it is so beautifully written I had to share it too.


The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger.

The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?" Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing. And, yes, he also loves to swing because all children love to swing. I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did notwalk until he was five, still does not eat anything other than pureedbaby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open."

I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk andread, all while my son continues to function at the level of a two-year-old. And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: "the rocks," "the wanna-be-theres," and "the gingerbread men." It warned us that people we might think were rocks could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth. I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: "the mother at the swings."

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this? She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.


"The Mother at the Swings" is really out there, walking among us. Every so often--and it's usually when my spirits are particularly in need of a lift, so I can't say I believe it is strictly coincidental--she, or a variation of her, will come and find me. And these mothers can be more than just brief encounters--I am lucky enough to call one a close friend.

Most recently, Jeremy and I had an encounter with "the mother at Miner's restaraunt." We were eating hamburgers, and Evan was sitting in a high-chair, playing with curly fries between episodes of being totally enthralled with the overhead light (aka "stimming"--I'm sure Evan has some degree of sensory processing disorder and craves extra stimulation also). "He sure likes that light," she said. Then she asked how old he was. "My two-year old wouldn't sit still like this. He's such a good boy. And he really does like that light." Just like the story--there is a pattern to these mothers (or dads--they are out there too): they make an observation about your child, compare or contrast their child in a complimentary way, and then leave the door open for you to tell them more...if you want to.

The other day I was reading an editorial talking about Christmas not being about what we get, but appreciating all that we have. To the "Mother's on the Swings" in my life (and I think you know who you are!), please know that I count our friendships as a very special everyday blessing.

Tuesday, December 25, 2007

Merry Christmas from the Storrs Family

Belated wishes from us...I just wanted to post some pictures from our extended Christmas weekend. On Sunday, Evan and I traveled with my parents and sister to visit Great-Grandpa Key, Aunt Nancy, Aunt Julie, Uncle Dennis, and Cousins Becky and Matt. It was a long day of traveling, but worth it to see family we don't visit very often (some meeting Evan in person for the first time!). Christmas Eve, Jeremy, Evan, and I just stayed home, opened some of Evan's presents and relaxed. He still doesn't really understand the whole "present" concept, and prefers to play with his familiar toys. I'm sure the new ones will grow on him. Today, we had Christmas dinner at my mom & dad's. Our visit was cut a little bit short by what I am hoping is just a 24-hour flu for Jeremy. He's feeling better this evening, resting in bed. We hope everyone got to spend time with family and had a wonderful holiday.

PS If you want to see something really cute, go to Eva's blog (link to the lower right) and watch the "CHARGE Snowball Fight." It's hilarious, and features our CHARGE friends Max, Eva, Alissa, and Luke. Great job Crystal!

One toy Evan took right to...he knows what to do with a ride-on!

I love how this picture shows Evan's reflection so clearly.

Walking with some help from Uncle Dennis.

Snuggle time with mommy.

Cousin Becky and Auntie Jen joining in.

Nothing like sitting back, with your feet up.

Typical 2-year old behavior: Does not want to take pictures in front of the Christmas Tree.

The compromise: a picture next to the tree.

One family picture (the 10 seconds on the timer feels like an eternity with a squirmy 2-year old on your lap)!

Saturday, December 15, 2007

An Ordinary Saturday

Two activities were on the agenda for today: attending a 2 year-old friend's Birthday party and visiting Julie & Gabe's house to wrap Christmas presents.

The birthday party was at the Children's activity museum. Evan had a good time, although he really just likes to play by himself or with us (most of the kids there were in the 18-months to 2 1/2 age range, so they weren't really playing with each other either). He had the most fun in "the bubble"--there was an indoor play structure with a clear, half-sphere window. Evan knew enough about windows from previous experience that he was a little leery of this one--he would reach out to about where glass would have been if the window was flat and "feel around" in the air. Gradually, he leaned far enough out to find the solid surface of the window. From that point on, he was hooked.

The most exciting thing happened this afternoon at Julie's house. Evan wanted to play with her remote control. So I signed "want" to him. He made his sign for "want" (it's actually a pretty close approximation), so I gave the remote to him for a minute. Then I signed "mommy's turn" and took it back. After a bit, I asked him if he wanted it again, expecting him to sign more "want." Instead, Evan signed "yes"--he only did a couple shakes of the "yes" (if you are familiar with ASL, you know what I'm talking about) and I could never get him to repeat it. But it was most definitely a "yes."

This is a huge deal. Up to this point, I have only seen Evan copy a sign that one of us is making simultaneously. This time, not only did he make a sign that was different from the one I was making, it was contextually appropriate in our "conversation"! I realize that communication is still going to be a long, uphill road. But, Evan, you sure know when your mommy needs a little bit of positive reinforcement. It was only a couple weeks ago that I was questioning Evan's teacher, Kat, about whether she thought he was "getting it," and when it might be time to start looking at some other strategies. She was very positive, and assured me that although she had her share of doubts when she first started working with Evan because things were so slow, she had seen tremendous progress and felt that he was on the verge of things finally starting to "click." I guess she was right!

Just an ordinary Saturday, but I was again reminded of the extraordinary-ness of our son.

Our Bubble Boy

"Sing us a song piano-man..."

Monday, December 10, 2007

Evan Antics

I know I promised to post some pictures of the new office, but there are a few things that have yet to be finished. I want it to be all finished when I take the pictures. But as a peace offering, I thought I would post a few pictures of Evan doing cute things there.

I'm all set to be mommy's first patient in the new office. Oh, you already saw some patients here before me? Hey, wait a minute--weren't we still waiting on that final inspection??

The newest thing I like to climb in--a (fairly) clean empty trash can. And the acoustics...I can only imagine how much louder my beautiful voice sounds!

Look daddy...I'm SOOOOO big

Sunday, December 9, 2007

The Promise

Warning: This story made me cry. But I think it is a great illustration of how our brave, but sick, children truly do inspire us to be better than we are.

The Promise
by Cynthia Dermody, published in Reader's Digest Jan 2008

Kathy Staub felt her heartbeat quicken and the familiar sweat coat her forehead. The 42-year-old deli clerk from Philadelphia dreaded the moment each day when she had to give her youngest son, Michael, and injection of an immune-boosting drug called Neupogen. She had to get the long needle into his arm at a 90-degree angle and hit the layer of fat between the skin and muscle. This required a quick and focused stab.

It was June 2001, and just the thought of causing any more pain to 20-year-old Michael, a college sophomore diagnosed a few months earlier with a rare form of leukemia, made her anxious. He'd tolerated two rounds of chemo, the central line catheters and bone marrow biopsies. But injections were the one thing he really hated. "C'mon, I don't like this. Do it fast, do it fast," Michael pleaded, standing in the family's living room. Kathy squeezed his biceps to try to tighten his skin and lessen the pricking and burning sensation. Then she positioned the thumb of her other hand on the plunger of they syringe. Just do it, she told herself. Focus. Focus.

Quickly she jabbed the shot into Michael's arm and, through his squirming, withdrew the plunger slightly to make sure there was no blood. Bull's-eye. She depressed the plunger fully and pulled out the shot. Then Michael adjusted the IV line attached to his chest and plopped back down on the teal blue sectional to watch TV.

Kathy could have hired a nurse for Michael while he was home between treatments at the Hospital of the University of Pennsylvania. But she wanted to be the one to clean out his catheter and give him his daily shots, IV fluids and pills. Never mind that she was squeamish at the sight of a mere drop of blood.

Kathy was close to her other two children, Melissa, 23, living at home, and Matthew Jr., 22, away at college, but she and Michael had a special bond. Kathy practically lived at the hospital when he was there for treatments. She--and the whole family, including her husband, Matthew, a grocery store meat manager--had grown extremely close to all of Michael's nurses on Rhoads 7, the floor where leukemia and lymphoma patients are treated. And not just because of the great care they gave Michael. The nurses became a support system, especially for Kathy. She ate with them, shared her fears and cried on their shoulders. They would tell her, "Michael is strong. He'll beat this," and offer back rubs when she had trouble catching an nap in the reclining chair in his room.

Kathy's appreciation of them grew when she began to understand what their jobs entailed. One of the first times Kathy gave Michael his daily shot of blood thinner, she missed and hit her own hand. It bled for hours because the anti-clotting drug had seeped into her system. She kept track of all of Michael's shots and his 50 daily pills in a notebook she'd placed in the dining room, next to his old dorm fridge. It now contained IV bags of magnesium and potassium, to replenish his electrolytes, and amphotericin, and antibiotic for the fungal pneumonia he'd caught because of his weakened immune system.

"I always thought nurses just gave you the pills and walked out of the room," Kathy says. "Now I had a whole new understanding of how they manage their time and energy. And they had three or four patients. It took me all day to manage one. But I didn't really feel like a nurse. I was just Mom."

Michael took a turn for the worse in August 2001 and was admitted back on Rhoads 7 for a third round of chemo. Kathy quit her job so she could remain at the hospital, slipping home for only an hour a day to shower when Matthew came by the hospital after work. "I never really slept, because Michael would vomit all during the night and the diarrhea was constant," Kathy says. "I would just throw away bagfuls of clothes."

It's not unusual for parents to stay with sick children round the clock. But the floor nurses noticed something special about Kathy. She was always smiling and positive, even on days when Michael was very ill or received bad news about blood counts. "It was never about Kathy or the sacrifices she was making," says Debra Dearstyne, one of Michael's nurses. "She never let Michael see how hard this was on her."

One day, Michael told one of the nurses, Felice Kloss-Heffernan, that he was so impressed by what she and the other nurses did, he planned to enroll in the nursing program when he was healthy enough to go back to college. Michel always believed he would conquer the disease. He'd done so with other hurdles in his life. Born a preemie on January 1, 1981, he overcame a learning disability and was mainstreamed into a regular classroom by the third grade. Despite good grades, he did poorly on his SATs. He gave up a trip to take a summer prep program at Widener University, south of Philadelphia, then entered as a freshman that fall. At five-nine, he was always told he was too short to play sports, yet he managed to become a linebacker on Widener's Division III football team.

When the thirst round of chemo was finished, in September 2001, Michael returned home to await the results. A few weeks later, Kathy and Matthew were devastated when Selina Luger, MD, Michael's oncologist, pulled them aside in the hall of the clinic, out of Michael's earshot, and told them, "The chemo didn't work."

"What do you mean?" Kathy asked. "So we just go to the next round?"

"There's no next round," Dr. Luger said, gently taking the arm of a now hysterical Kathy to steady her. "Michael's incurable. He's dying."

Matthew was shell-shocked at the news. Like his son, he always believed they would beat this. This can't be the end of it, he tried to convince himself. Kathy wept against a hallway window while Dr. Luger and Matthew walked into an exam room. Dr. Luger explained it could be weeks or months as Michael just nodded, speaking only to ask, "Is my mom okay? I hear her crying."

Kath continued to care for Michael at home over the next several months. But he failed to bounce back after the difficult chemo, remaining pale and listless. He was determined to attend his sister's wedding on Saturday, March 23, 2002, which he did. But the following Monday, Michael confessed that he'd been suffering from a high fever for days and had taken Tylenol to cover it up so he wouldn't ruin the wedding. Back in the hospital, test showed Michael was in heart failure.

On April 14, Michael woke from a nap on the couch and said, "Mom, you took care of me through all this. I think you'd make a great nurse. I know I'm not going to be one, but promise me you'll go back to school and become a nurse." Later he added, "I want you to work where I was treated."

"I did this for you, but I could never do it for anyone else," Kathy replied.

"There are a lot of other me's out there," Michael answered. "I want you to pinkie swear."

"Sure, Mike, sure. I'm going to be a nurse. Pinkie swear," Kathy said to humor him, entwining her little finger with Michael's.

The next day, Michel's blood pressure plummeted to 60/40. Kathy and Matthew summoned family and close friends and told Matthew Jr. he needed to come home from college right away. As the monsignor from the family's church pressed the crucifix to Michael's head and began last rites, Kathy noticed her son's breathing was becoming more labored. In his hand, he tightly clutched a silver angel medallion with the word love written on it, a gift from a friend. Matthew held his son while his mom rested her head on his. "Mickey, I'll be okay. Just let it go. No more pain, just let it go." And Michael closed his eyes for the last time.

Weeks after Michel's funeral, Kathy was still struggling to make it through each day. One night, she had a dream--although she believes it was more like a messaged. She saw Michael dressed and looking as healthy and handsome as ever. "Mike, are you okay?" she asked, getting a whiff of his trademark Perry Ellis cologne.

"Mom, I'm fine," he said. "But you have to stop crying now. You have to remember your promise."

The dream spurred her to action. On May 28, a month and a half after Michael's death, Kathy took placement tests at a local community college. "What am I, nuts?" she asked herself. "I haven't opened a textbook in 25 years." But she scored well.

Nursing school was grueling, especially for someone who'd never used a computer. It took her twice as long as the younger students to complete assignments, and there were several times she thought she' quit. But Matthew and her family continued to encourage her. "Her head was always in a book," recalls daughter Melissa. "She would study on vacations. I know Michael was on her mind the whole time, and that was her driving force." Doubling up on courses and even taking summer classes while working part-time at the deli, she eared her nursing degree, graduating cum laude in May 2006 from Thomas Jefferson University, and soon became a registered nurse.

The fall before she was due to graduate, Kathy attended a nursing career fair. She walked directly up to Beverly Emonds, a recruiter at the UPenn table. "Hi, I'm Kathleen Staub, and I want to work at your hospital," she said. "But it has to be on Rhoads 7, bone marrow transplant." In early November, Emonds called Kathy to tell her there would be an opening. But it was far from a done deal. Kathy had to convince the floor's nurse manager that Michael's history wouldn't interfere with her performance on the job. Finally, Emonds called to offer her the position.

A few days after starting, Kathy stood in one of the patient rooms holding a syringe full of Neupogen--the same drug she used to give Michael. The young leukemia sufferer, her very firs patient, was about Michael's age, and she hated shots just as much. As Kathy began the procedure and felt the familiar moistness on her brow, she couldn't help thinking of her son. But suddenly a guiding confidence came over her. She jabbed the shot quickly and precisely, like a pro. That wasn't so bad, she thought.

Each day as Kathy walks int o the UPenn hospital elevator and pushes the button to the seventh floor, she takes Michael's angel medallion from her pocket, holds it in her palm and says, "Micheal, get me through the day." The 12-hour shifts are rewarding but intense. Though memories lurk everywhere, she loves working alongside many of the same nurses who cared for her son.

Kathy doesn't often share Michael's story with the families of patients, because she doesn't want to dash their hopes. But sometimes word gets out and they ask her about him. One of Kathy's first patients, a young woman with leukemia, had developed a complication from bone marrow transplant. She was dying. Kathy flashed back as she saw the girl's mother crying at the foot of her daughter's bed. The woman turned to Kathy: "How do you get through it?"

Kathy waked her into the hall, and the woman collapsed in tears. "You never forget, but you will get through it." She fingered the angel medallion in the pocket of her uniform. "You'll find a way."

Michael had a rare form of leukemia, a hybrid of ALL and AML, which doubled his resistance to chemo.

Wednesday, December 5, 2007

First Transition Meeting

Last night we met with Liz, our FRC from the Birth-to-Three program, and the school psychologist from the Kittitas School District. Evan will be three in July, and we have to plan ahead for his transition from early intervention into the school system. What this means is that the school system will be providing his therapies, instead of our insurance and then Head-Start as the payor of last resort. Jeremy and I had been a little bit apprehensive about this transition because we were under the impression that Kittitas really didn't have the resources we think Evan needs to be successful in pre-school, and eventually regular school. There is a developmental preschool in nearby Ellensburg we have been wanting Evan to attend, but because we are out of district (we are less than a mile away from the district line) a big battle was anticipated.

The school psychologist made us feel a lot better about the transition. To begin with, she said there was pretty much no way that the Kittitas district would contract (meaning pay) Ellensburg school district to take Evan into their developmental preschool. But then she told us about the speech and occupational therapists that come to the school. We are quickly coming to the conclusion that ASL is going to be Evan's primary mode of communication, and that it will be important for him to have an aide that can sign (in our small community, this may be difficult to find). If there is a plus side to Evan's frequent need for venting the g-tube, we are hoping it will be for him to have a one-on-one aide (again, finding one that knows ASL may be a tall order--but it wouldn't be any easier in Ellensburg either).

The school psychologist pointed out that preschool in Kittitas will be through the Head-Start program, and Evan will be with typically developing peers instead of just "developmental" kids. Jeremy and I already know that Evan is a watcher--he tends to try things he sees other kids do (for example, I am almost positive the climbing came from months of watching Gabe, the climber extrodinaire!).

The most difficult moment came when the psychologist commented about Evan would obviously qualifiy for an IEP (and if you are reading this, know I have absolutely no bad feelings about that's just that sometimes the truth really hits hard). It's good he will so easily qualify because he needs an IEP to get services. But Obviously...are his differences that, well, obvious?

To me, Evan has come so far in the past two years--in the past two months even. I have learned the best yard-stick for Evan is Evan. But in not comparing him to typical kids, it's easy to in a sense deny the reality of how very far behind he is. Sure he has made some big gains, but "normal" kids are making even bigger gains, so the gap between is getting larger and larger. Max's mom Amy posted a couple weeks ago about being "jealous" of the developmental strides of the kids with Down's in Max's play-group. I completely get what she is saying (although, to us Max is leaps and bounds ahead of where Evan is communication-wise. Check out the video on Max's site of him signing parts of the "itsy-bitsy spider" song--it's too cute and we are so proud of both Max and Amy!). I guess it is all about perspective.

The beginning of May is when we will start the transition process in earnest, and Evan will start pre-school next fall.

Climbing Evan

Evan has learned a new trick this past week--he can climb up into chairs all by himself!

The first time he did it, we were busy packing and putting things in a Uhaul truck. I noticed he was in the chair, and I asked Jeremy if he sat him in the chair (and then left the room...). Jeremy didn't put him in the chair, and I didn't put him in the chair. By process of elimination, Evan must have got up all by himself.

Since then, Evan has demonstrated his talent many times. These pictures are from last Sunday--he climbed into the rocking chair we used all the time to soothe him to sleep as a baby. Sleep was the last thing on his mind here. I'm sure life for us will not be the same again. I say that everytime he learns something new--so far, it's been true!

Look at Me! Look at Me! Look at Me!

This is me thinking...thinking about all the trouble I can get into now that I know how to climb!

Oh, and the other cute new trick he learned during the move was how to climb inside an empty cupboard and close the door on himself. This skill has also transferred nicely to home, although he has to deal with climbing over all the stuff inside (there is no such thing as an empty cupboard at our house). That hasn't stopped him yet--Jeremy found him in the towel cupboard under the bathroom sink yesterday. Like mother, like son--when I was little, I would empty out drawers and get inside those.

Monday, December 3, 2007

Storrs Family abducted by UFOs

OK, not really. We've just been SUPER busy!

Some of you know I found out shortly after (i.e., the day of) purchasing my optometry practice that I was going to have to move the satellite location. I signed a lease for a brand new space (i.e., completely bare--no walls, ceiling, anything except a concrete floor!), and "hired" Jeremy to be my contractor. The past two months he has been busily working many, many evenings and weekends to build out the new clinic.

Our first day of seeing patients in the new clinic is December 5th--this Wednesday. Ever since the day after Thanksgiving, we've been putting in some long hours doing the finish work and moving the old office. I'll post some pictures after it's all finished.

Evan is fine--he has a little sinus/ear infection (yes, he got an ear infection even on prophylactic antibiotics). It turned out to be resistant to the antibiotic he's been on, so they switched him to a different one. He is doing much better, and has been a real trooper through this whole move. He loves to ride his trike up and down the hall in the new clinic.