What Works

Sweet Husband and I have been married for 22 years this month. I guess you could say that we know each other fairly well by now. We've learned a little bit about what works and what doesn't work for the other person.

The last couple of days as I've been driving home from work, I've called from my cell phone to check in with SH. He has been ending the conversation by giving me a warning of what I'll find when I get home (as far as our kitchen remodel.)

"Don't flip out when you walk into the house and see a temporary wall up in the living room."

"Don't be surprised when you get home and see a trailer parked on the lawn...it's for the debris from the demo."

I appreciate knowing what to expect. After a long day at work it's nice to be prepared when part of your house is missing...

Today as I walked into the house I had a flashback, which kind of made me chuckle. This preparation that SH has been doing reminded me what he did to support me during Kellen's first year.

Kellen had four major surgeries on his heart or intestines in 1991. Sweet Husband is a nurse, but I had absolutely no experience with tubes, wires, medical equipment or even experience with hospitals. Neither of us had any experience with any of these in context of our own baby. I was very, very, afraid to walk into the intensive care unit and see Kellen for the first time after a surgery. Sweet Husband used to go in first and tell me what Kellen looked like and what kinds of things I could expect to see when I walked in. This was very helpful to prepare me...but even so, I would sometimes start by looking at Kellen from afar for a few minutes before I could convince myself to move closer. That year was a very stressful and difficult time for us...and we made it through by supporting each other and relying heavily on our faith.

Seventeen years later Sweet Husband is using a similar method of keeping me sane. Tell me what I'll see before I actually see it and give me time to process...that's what works.

January 1991

I am 29 years old and I'm flat on my back on an operating table. My unborn son is in fetal distress and I'm terrified. I'm about to have my second c-section. I tell the anesthesiologist that all I want to hear after my son is born is that he is okay. The only thing is, after he is born they don't say anything. They whisk him away to the corner of the room...and they don't tell me anything. After a period of time, I ask my husband to leave my side and go check on him. When he comes back, instead of reassuring me, all he can say is "ummm...they are working on him."

Several minutes later the pediatrician on call comes over to the operating table and kneels down so that his face is level with my own. He says quietly, "We believe your son has a chromosomal abnormality...we think he may have Down syndrome."

I feel as if I am falling through a long black tunnel. There is no ground underneath me. I am shocked. I feel extremely vulnerable. I don't know what to feel. I don't know what this means.

A little later he tells me that my son has a heart defect and that he will need to go to Children's Hospital right away. He is whisked by me on the way out of the operating room. My first thought as I see my son for the first time is, "yes, he looks like he has Down syndrome." I don't know what to think. I am still in shock and I feel detached from him. Even though I know he just came from my body, he doesn't feel like mine.

A week or two later, he is still in the hospital. By then he has also been diagnosed with an intestinal disorder and has already had a surgery or two. They send a geneticist to come and talk with me. I don't know why...I've just had a tubal ligation as we have decided two c-sections are enough. She takes me to a little conference room.

My son is so tiny, I feel so vulnerable and I still don't know how to think about him or his disability. This feels like "tragedy." The geneticist is strong, sure of herself and very articulate. You could even call her strident. Something she says stands out to me, "Your son will not live with you the rest of your life." Finally I know how to think...my son will be able.

Her comment set the stage for how we would raise him.

One Parent's Perspective

Maybe you are a caring doctor, nurse, speech therapist, social worker, teacher or case manager and I am a loving mother or father. My baby was diagnosed with something at birth or labeled with something else as a young child. Maybe you need to break this news to me for the first time or maybe we'll be seeing a lot of each other this coming school year. What seems clear is that you and I need to work together for the benefit of this child...my child.

Before you tell yourself that I am in denial...first stop and think. What is denial as it relates to a parent of a child who was born atypical? What function does it serve? Denial is pain control. Denial may be helping me to function and survive the day. As long as my child is getting needed services, treatment, therapies, and is loved and cared for...is it so bad? If you think my child will never be able to achieve something and I think he can and he will...do we need to resolve our difference of opinion by putting a big red sign on it that says, "Denial"?

I don't want to be harsh or come across as sounding bitter. I do want you to put yourself in my position for a minute or two. I want you to realize how powerful your words to me are and how much your attitude impacts me and my child. Because of your position and our vulnerability your words, and more importantly, your attitude, have the ability to ruin my day...or even change the course of my child's life. That's a big responsibility. Now you know how I feel 24 hours a day...responsible. I don't get a break from it. That's why I often feel so overwhelmed.

What do I want you to know about disability? I want you to know that disability does not define my child or tell you who my child is. Disability will not tell you anything about my child's personality or what he will or won't be able to do. Please see my baby as a baby first before you see her as a baby with a condition. See my child as a child first before you see him as a syndrome or a disability. See me as a parent. A parent who loves her child and doesn't want to hear him referred to as "retarded" or "damaged" or "impaired".

If I am new at this...gently remind me with your words and actions that my child is a child and not a project. He is not a diagnosis. She is not the reason for my being. I do not have to lose myself in his care or sacrifice my life. As weird as it may sound...in order to keep my perspective I need to realize that I am not the one who has the disability. Support me to have that healthy separation that I will need to parent this child for the long-haul.

Thank you for caring. Thank you for being here for me and my child.

Galloping Toward the Milestones

Several years ago I had a small gathering of families over for brunch at my house. Everyone in attendance had a new baby with Down syndrome and I thought it would be a great way for some of the families to get to know each other.

As it usually does with new families, the conversation turned to early intervention. Babies and toddlers under the age of three who have (or are at risk for) developmental delays can receive physical, occupational, speech and feeding therapies to help them reach their milestones. These services are now provided in homes and daycares, but back when this conversation took place the services were provided in places called birth to three centers, early intervention centers, developmental centers or in more of a clinical setting.

During the conversation we started talking about the local centers and where they were located.

One of the moms piped up: Isn't there a center in Auburn?

Me: No, there isn't one in Auburn, but there are two in cities near by.

New Mom: But...I thought I saw a sign for a center in Auburn.

Me: A sign?

New Mom: Yes, a sign on the side of the freeway. I drive by it all the time.

Me: Hmmm...what did the sign say?

New Mom: It said something with the word Downs in it...

It takes a little while, but finally it dawns on me:
Me: Do you mean a sign for...Emerald Downs? Emerald Downs is a...racetrack...you know...for horse racing.

New Mom: A racetrack? Oh...never mind.

We spent the rest of the morning laughing as we pictured our kids receiving their services at the racetrack.

Happy Birthday Sweet Boy

What to say....

What to say to a friend or family member who finds out her baby will be born with Down syndrome:

1. Congratulations

2. We can't wait to meet her/him

3. We will be here for you

4. You will be great parents

5. Congratulations!

Second Meeting

Early in January of 1991, I was in the hospital, in labor. My baby was exhibiting signs of fetal distress, so I was taken into the operating room for a c-section. The pediatrician on-call, Dr. Yen, was at the ready in case Kellen needed him. It was Dr. Yen who squatted next to the operating table a few short minutes later so that he could be eye-level with me when he told me the news that it looked like Kellen had a chromosomal abnormality. That cold, dark, January night was the first time that I had met Dr. Yen, and I did not meet him again until over fifteen years later.

Last Fall I was asked to participate in a meeting where there would be local prominent pediatric professionals in attendance. I was there representing the "parent perspective". I found a seat at one of the tables and started to look around the room at the name placards set up at each of the places. My eyes suddenly focused on a name a couple of tables away...Dr. Kyle Yen. My mind was immediately transported back to January of 1991 and the sterile operating room. I started to feel many of the feelings that I felt that night: shock, helplessness, confusion, panic.

The strong emotions came out of nowhere and totally took my by surprise. I had a definite urge to flee the room before I would be confronted with the doctor himself. It wasn't that I hated the man, or that he had done a terrible job of telling me the news, it was just the fact that the one and only time I had ever met the man, he was telling me news that would change my life forever. If my life could be divided into two parts, it would definitely be "Before Kellen" and "After Kellen". This man was there when my first life ended, and the second one began.

I started to breathe quickly and tear up. I really didn't know if I could stay for the meeting. Fortunately, the doctor was very late so I had a couple of hours to collect myself. I knew two other women at the meeting and both were mothers of children with special needs. I was able to tell them why I was suddenly so emotional and feel their support. Talking to them helped quite a bit, so that by the time the doctor did arrive, just before lunch, I was doing fine.

I decided that I couldn't let the opportunity to talk to Dr. Yen again pass by. During lunch I waited until he was alone and then approached him and said, "Hello, I just wanted to say 'hi'. The last time I saw you, it was January 8, 1991." His polite smile at my approach wavered a bit as he registered what I was saying. "You were there when my son with Down syndrome, was born sixteen years ago".

I don't think Dr. Yen quite knew how to respond to me, just as he hadn't sixteen years earlier. It did feel good for me to meet him again under better circumstances and achieve a sense of closure. He actually chose to sit next to me for the rest of the afternoon's meeting, and I felt as if I had a little secret: life "after Kellen" was turning out just fine.

Even Bad Asses Like Baby Toes

Sweet Husband calls me from work yesterday...
"I picked up some new sunglasses for Kellen today." Picked up means he found them in the lost and found.

Click on the picture for a closer look.Yes, that's right. My "sweet" husband scores some sunglasses for his sixteen year old son which say (in beautiful silver script), "Bad Ass". On the phone, I hesitate "Well...he's going to wear them just at home...right?" "Oh no..." says Sweet Husband extremely cheerfully, "He can wear them everywhere...accept to church." Sigh.

Later that evening we had a get together planned at the wading pool for several families who have little ones with Down syndrome. Kellen loves babies so much and I was really hoping he would be able to come with us. I was already at the park when Sweet Husband called me on my cell phone to tell me that they had arrived and found a place to park, but Kellen was stuck on the street corner, too anxious to cross the busy street. I walked up to the street to help, but Kellen was too scared to budge.

Sweet Husband walked him back to the car and they drove to a drive-in to pick up fish and chips. A while later, we came up with a different plan to park in a parking garage and ride the elevator up to an outside eating area across the street from the park. It was after the wading pool gathering, but two of the families joined us at the eating area for ice cream.

This was a good set-up because Kellen didn't have to cross the street, but was still able to spend time socializing with his second favorite creature on Earth...a real, live baby!


When Kellen spends time with babies he uses the cutest, high-pitched voice which is very different then his usual, gravelly, "man voice". He had a great time singing This Little Piggy and just enjoying watching her. Baby toes...good therapy.

(A prize for the first person who knows who Kellen's "first" favorite creature on Earth is. If you know, leave a comment with your email address).

Recovery

The good news is Kellen is doing better. However, whenever we go through a really rough time like this it takes awhile for all of us to recover...to get back to balance.

When Kellen was younger and would go through a surgery or hospitalization, the period after he came home was almost as hard as when he was in the hospital. When he was hospitalized, every other thing was put on hold and we went into "survival mode". Just living moment to moment. Trying hard to handle our emotions and do what needed to be done for Kellen. Then we got home and had time to think and feel. That was the time to fall apart...then rebuild.

On Wednesday night, DQ and I went to see the movie Knocked Up. It was very funny and just what I needed to get my sense of humor back. Last night DQ and I went to Trader Joe's and then after Kellen went to bed, we rented The 40-Year-Old Virgin. I didn't think it was quite as good, but we were definitely in the mood for a little juvenile humor. There is a scene were these two guys are playing video games and trading barbs about "how gay" the other one is.

After we watched the movie and all the special features it was after midnight. I was unpacking the bag we had bought from Trader Joes and Sweet Husband spotted a bar of soap. He exclaimed excitedly, "Oh you bought that lemon soap I like!" Then, sheepishly, "I guess that's why I'm so gay".

Syndrome Syndrome

When you have a child with Down syndrome, chances are you experience a strange brand of prejudice and stereotyping right from the very start. I call it Syndrome syndrome.

The grave doctor informed me while I was on the delivery table that he suspected my son had a "chromosomal abnormality", probably Down syndrome. From that point on, in the medical professional's eyes, my tiny son joined a unique club. Since he was a member of this exclusive club, they already "knew" many things about him. They "knew" he would have low muscle tone, developmental delays, and most likely a multitude of medical issues, both present and future.

The geneticist "knew" that he wouldn't live with us all of his life and that he would ride the bus some day. The social worker "knew" that he would not know or care that he had mental retardation. The physical therapist "knew" that he needed lots of intervention so that he wouldn't "walk like a duck" as an adult.

Later, the educators got on board too. They "knew" he would need to be in a self-contained special education classroom in order to learn anything. After all, he would get more attention there, and kids "like him" benefit from individual attention. They "knew" he would need to learn how to be "compliant" or there was no hope for his future.

Having a child with a syndrome as common as Down syndrome means that right from the start a parent must recognize their child and family's uniqueness and individuality and counteract prejudice and stereotyping wherever and whenever they find it.

A Sister's Eyes

Kellen was born in 1991 with a serious heart defect as well as Hirschsprung disease (a birth defect of his colon). At the time he was born, my daughter was just over three years old. I was a stay-at-home mom and so she had me all to herself...until her brother arrived. We were constantly at the hospital that first month while he had a colostomy put in and had a closed-heart surgery.

Having mom and dad gone so much was really hard on her. She stayed a lot with her grandparents or went to friend's houses while we went back and forth to the hospital. Finally at about a month old, Kellen was stable enough to come home with us and we were able to get settled into our new life together. Well...as settled as a family who is waiting for open-heart surgery can get.

At six months old he had gained enough weight that it was time to go back to the hospital to have his heart repaired through open-heart surgery. I felt that having had six months together we had emotionally bonded and I knew that meant this surgery would be harder on all of us.

Kellen sailed through the five and a half hours of surgery and the outcome was even better than we had hoped. However, we thought we had mentally prepared ourselves for how Kellen would look afterwards, but it was still very hard to see him with so many tubes and wires. He was breathing through a ventilator and his eyes were taped shut so that they wouldn't dry out. His wrists and ankles were tied to his crib with soft straps so that he wouldn't accidentally pull on any of the tubes or wires. Not that he was about to pull anything out as he was heavily sedated. Even though it was hard to see our baby like this, we were encouraged by the fact that for the first time in his life his complexion was pink.

We felt strongly that we didn't want D.Q. to see her brother until he was looking much better. We planned to wait a few days or weeks when, hopefully, he would have some of the tubes and wires out. By this time she had had six months to get to know her brother and we felt it might be traumatic for her to see him with so much machinery hooked up to him.

The day after his surgery we were with family in the waiting room and Sweet Husband and I started to head into the Intensive Care Unit to visit Kellen. D.Q. started to have a major meltdown as she felt that we were leaving her again and insisted that she go too. We made a quick decision to let her come with us, but a big part of us felt that it might be a mistake.

After the three of us scrubbed up, we slowly carried D.Q. over to her brother's crib. We waited tentitively for any kind of reaction from her, but there was none. We gently asked her what she thought of her brother and she replied in her chipper little three-year-old voice, "He looks GREAT!"

We learned some lessons that day. We learned to never underestimate our daughter. We learned to listen to what she says she needs. Most of all, we learned that the eyes through which she sees her brother are filled with love.

Thoughts for New Parents

So you just found out your child has special needs. You probably think your world will never be the same...and you're right. It won't.

It might feel like the end of the world right now. It isn't. You will adjust, in time. Disability does not equal tragedy...though society may have told you so. In time, you will know different.

You may feel like you are on an emotional roller coaster. One day up, another down. That's natural. You're not going crazy. Enjoy the view from the top and when you're on the downside, be patient and wait it out. Be good to yourself. Call a friend who will listen and let you cry.

Your child will surprise you every day. He or she will bring you more joy than you can imagine right now when you are in this dark place. Believe it.

You will need to be strong for your child, but not right now. Right now it's OK to be vulnerable and feel the pain you're feeling. Though you'll always have your sad moments, they will grow fewer and farther between.

Hold your child as much as you can, but if you can't right now, hold your partner. Lean on each other. You'll find that you will take turns having your up and down moments. Be strong for your partner when you can, and when you can't let him or her be strong for you. Draw closer. You will learn more about just who your partner is than at any other time of your relationship. Pay attention. Love each other. Be patient with each other.

Tomorrow will be a brighter day...or maybe the day after. Give yourself a chance to grieve. Give yourself a chance to adjust.

What thoughts do you have for new parents?

Sixteen

Kellen will turn sixteen years old next week. I have been thinking about this "milestone" birthday for several years. I had a feeling, even long ago, that sixteen would be a hard birthday for me and I was right. Even though I've known all along that driving a car would most likely be out of the realm of possibility for Kellen based on his abilities and challenges, it is still hard to know that he will turn sixteen on Monday and there will be no driver's ed, no taking the car for a spin around the block with mom and her sweaty palms in the passenger seat and most of all, no nervous trip to the DMV to take the test for the shiny new driver's license. I feel like bawling every time I think about it. I feel like I'm grieving all over again.

I still remember a flippant remark the on-call cardiac surgeon made when Kellen was a baby. He was six months old and recovering well after his open-heart surgery. He had the surgery on a Monday and by Friday he was pretty much operating "unplugged" (meaning he wasn't hooked up to anything other than an occasional oximeter to measure his oxygen saturation). I had taken him out of his tiny hospital gown and dressed him in "real clothes". A colorful, bright, striped, cotton outfit. I was crossing my fingers that the surgeon would tell us we could be discharged that day.

Instead we were to stay until Monday. When the young surgeon came in for his rounds that Friday he said to my son, "Look at you, all dressed up and no where to go!"

I know to him it was just a funny, casual remark, and I'm sure he had no idea that it cut me to the core. I was a hypersensitive, new parent and I wanted my son home with me as soon as possible. I was tired of the intrusions of the hospital where there is hardly any day and night and certainly no weekend. I didn't want his life to be lived in some protected, artificial environment watching the rest of the world go by. I still don't want that.

I wonder if I'm feeling that on Monday, when Kellen turns sixteen, he will once again be "all dressed up with no where to go"? He will be sixteen, but he won't have what other sixteen year olds have. Maybe that is where my sadness comes in.

Beginnings

This is our very first family photograph. Kellen was a few days old and we were visiting him in the intensive care unit at Children's Hospital. He had already had one surgery by this time, a colostomy was "installed" because he was born with a condition called congenital intestinal aganglionosis or Hirschsprung disease.

Babies with Down syndrome are much more likely then other babies to be born with additional birth defects. Kellen was born with a congenital heart defect as well. That's why his complexion appears so "blue" in this photo. The funny thing is, back then, I don't remember noticing how blue he looked, although I do remember other people commenting on it. What I do remember is how very scared I was those first few weeks. Overwhelmingly scared. All the time. I didn't know what life would be like if he died and I didn't know what life would be like if he lived.

Boy of My Heart

This is a poem that meant a lot to me when Kellen was a baby.

Hail, handsome fellow, dear Boy of My Heart!
I've loved you each moment, right from the start.
How God ever found me, I will never know.
He sent you, sweet angel, from Heaven to grow
big from a little one into a great man--
to live life as your hero, I'll try hard as I can.
You now are so gentle, so soft and so small,
each day makes a memory...I treasure them all.
Sweet arms wrap around me, sweet hands hold mine tight,
I cherish your face from morning through night.
O darling, my boy, my hero, my son,
it is I who am learning from such a wise one.
Come snuggle your head in the curve of my neck
while I ask God to watch you, to keep and protect
my baby from harm, from shadows and fears,
for you are my sunshine, my joy through the years.
"I thank you God kindly for giving to me
this beautiful boy, I'm as blessed as can be."

by Deborah Lindsey O'Toole