Family that embraces daughter is great gift

by Hellen Middlebrook from Pacific Daily News:
For most of us, friends are a normal part of life. But what if your life isn't normal? And what if you aren't?
Deborah, our daughter with Down syndrome, has been growing up without friends. I know this is not the case for every child with disabilities; those who go to school usually experience some level of friendship. Deborah has been in similar settings, but these have not been enough to cultivate friendships.
In her almost 15 years, I've watched Deborah be patronized by adults and rejected by her peers. Adults often treat her as if she's a teddy bear -- something to hug and say nice things at. Very rarely do adults actually talk with her.
With the exception of one young lady who has left the island, those of her own generation have ignored her. If they do see her, they don't acknowledge her. Deborah has never been invited to a birthday party or an outing. But she has been told to "go inside" when others have been outside playing.
Such things are hard on a mother's heart.
I know it can be difficult to understand her; I know it's also difficult for her to keep up with a conversation. And I know if she is ever to have friends, it's up to me to create the situations to foster friendships.

How One Mother Gave Her Daughter With Down Syndrome the Best Day of Her Life

by David Rosenberg from Slate.com:
When Janice Di Joseph and photographer Lindsay Morris sat next to one another on a train, the two women struck up a lively conversation. Morris said she was drawn in by Di Joseph’s extrovert personality, but it was her daughter Ricchina who immediately caught Morris’ eye.

“She was so dreamy,” Morris recalled. “She had this air about her that was so soft and warm and welcoming.”

Morris was returning from the Look3 photo festival in Charlottesville, Virginia, and had felt empowered by a seminar she took on the photography essay. When Di Joseph, who was heading to Philadelphia where she lives, mentioned she was preparing to throw a surprise wedding-themed birthday party for Ricchina, Morris offered to photograph it and created a series, “Ricchina’s Wedding.”

Ricchina has Down syndrome and as she and Di Joseph began to attend more weddings over the years, Ricchina began to question her mother about why she wasn’t able to get married.  

“I would die whenever she asked, because I didn’t know what to say,” Di Joseph said.

Thanks to Di Joseph’s never-take-no-for-an-answer attitude, Ricchina had already met two of her idols, Justin Timberlake and Lance Bass, encounters Di Joseph felt certain would be the highlights of Ricchina’s life. But as it turned out, the wedding-themed birthday party would top both of those.

A Dream for My Daughter With Down Syndrome

by The Stir Bloggers from The Stir:
I've debated posting this letter a million times. Mostly because I know I have readers who will not get this. Some readers won't because they love me and my family and Lily so much...they just don't ever want us to hurt. So to prevent that hurt -- or stop it -- they will say things like, "please just accept Lily for who she is. Just give her time, and trust that she is who God made her to be."
Some readers won't get this letter, because... they simply can't relate. As understanding as they might be, they will never ever know how it feels be the parent of a child with special needs. And believe me when I say, I don't blame them for not being able to relate. I'm in a club that I didn't choose to be in myself, although I wouldn't bargain my way out of it if I could.
I've learned too much, loved too much, grown in ways I didn't know I needed to, discovered little rooms...vast rooms...in my heart that I never knew existed since having Lily. I cannot imagine, and I don'twant to ever imagine, life without Lily; this letter has absolutely nothing to do with a lack of love for her or a desire for her to be someone else. She's my Lily, and I truly believe that quote at the top of my blog...the one that says there was no mistake here. I believe it with all my heart.
But there are some days when I dream....

Kevin Kilbane pays respect to David Moyes for helping him cope with darkest days

by Henry Winter from the Telegraph:
When Elsie Kilbane was born with Down’s Syndrome in 2004, her father Kevin could not face going back to training at Everton. Kilbane and his then wife Laura had so many decisions to make over Elsie, so many hospital appointments to attend, so many fears to confront and learning to do.

Kilbane remembers clearly those difficult early days. Speaking on the eve of World Down Syndrome Day this Friday, one of the most respected footballers over the past two decades and now a popular BBC pundit, Kilbane is keen for other parents to absorb knowledge and ultimately encouragement from his experience.

“Elsie was born on a Monday night, so I didn’t go back into training, I just couldn’t,’’ recalled the 37-year-old. “Emotionally, I wasn’t in a great place. I spoke to David Moyes on the Tuesday and he said: ‘Look, take us much time as you want.’ It’s one of the reasons I respect David Moyes so much because of how wonderful he was with me at that time, knowing I was going through a difficult stage in my life.

“I went back in training on the Friday, the day before we played at Leicester and I wasn’t considered for the team. From the following week, I was back in normal training. David Moyes said some quiet words to me if he thought he needed to but he didn’t put me under any pressure. He’d known me since I was a lad of 16 (at Preston North End) and knew there was no need to make a fuss around me. He trusted me to look after myself.

“I couldn’t have wished to have been at a better, more caring club than Everton. Incredible. Lee Carsley is my best mate; he has a little lad with Down’s. Lee and I were always close. So when Elsie was born, to have that conversation with him was difficult for me. Lee was brilliant and he helped the other players out. Some were reluctant to talk to me. It is a difficult subject to broach. They knew I was very sad. They were going to Lee for advice on how they approached me. Lee said: ‘Just congratulate him. He’s had a little girl.’

Close family, who died within days of each other, will have joint funeral

by Kevin Allenspach from SCTimes.com
Funerals are a difficult time for any family. Friday could be specially taxing for Kim Butkowski and her three brothers.
Their sister, Sandy Schulte, died last Friday at 57 after a long illness. Less than 24 hours later, their mother, 76-year-old Sharon Schulte, succumbed to complications from lung and brain cancer. And on Tuesday, their father, 77-year-old Thomas Schulte also died after a stay at Quiet Oaks Hospice Home.
A joint funeral is scheduled for 11 a.m. Friday at Williams Dingmann Family Funeral Home in St. Cloud.
“Sandy was born with Down syndrome,” said Butkowski, 56. “She was the oldest of us kids and my mom and dad promised they were going to keep her at home with them as long as they could. She functioned at the level of a 4-year-old ... Sandy’s health had deteriorated the last couple of years and she got real weak. She had trouble walking and was to the point where she couldn’t feed herself. I think she aged very rapidly...

Father of rape victim with Down syndrome speaks out

by Alice Clinton from The Enquirer UK:

The father of a young woman with Down’s Syndrome who was raped last September has spoken about the “devastating” attack on his daughter and his anger over the short sentence given to her rapist. 

This comes after 18-year-old Liam Felton (pictured), was jailed for eight years for the offence on Monday (13 January).

On the evening of Thursday, 12 September 2013 the victim, aged 22, had been at home in the Harold Wood area with her mother and stepfather. 

Earlier that night they had attended an evening held in memory of the victim’s best friend, who had recently died due to heart problems. 

The victim’s father has said she was upset after the evening and had a headache. When her parents were asleep, just before midnight the victim decided to go for a walk and she left the house.  

The victim walked to Station Road and sat on a bench. Felton, who lived nearby and did not previously know the girl, walked past and doubled back to sit on the bench once he noticed her. Felton attempted to engage her in conversation and after around 15 minutes the pair got up and walked for about five minutes. 

Felton then grabbed the victim, forcing her into an alleyway behind some shops before raping her twice and fleeing the scene. 

Photographer And Her Daughter With Down Syndrome Collaborate On Beautiful Portraits Of One Another

by Sara Gates from the Huffington Post:
At first, it was Irish-born photographer and mother Emer Gillespie who was behind the camera. But after Laoisha, her young daughter, starting asking to take the photos, she relinquished control.
Inspired by Laoisha's interest in the camera, the U.K.-based photographer launched "Picture You, Picture Me" in 2008, when Laoisha was 6 years old. Every few months, Gillespie pulls out the camera and the pair stages scenes of activities they like to do together, such as blowing bubbles or flying kites.

Six years later, the photos they have created together comprise a unique mother-daughter series that features now 11-year-old Laoisha, who has Down syndrome, and Gillespie in parallel scenes, each captured by the other.


Though the project has been a great way for the pair to spend time together, the photo sessions have also enabled Laoisha to advance her verbal and visual language skills by talking about what she wants for each photo.
"A lot of the images are Laoisha's ideas, for example, 'Bed Jumping,' 'Hair' and 'Make-up,' as she loves those activities," Gillespie told The Huffington Post. "Anyone who knows her will spot her interests and personality shining through in the subject matter. We both make suggestions for shoot ideas, but I will always start by first asking her if she wants to take photos, which so far has always been a yes, and then I will ask if she has any ideas or suggestions."



Other images, like the photo of the mother-daughter duo in a school classroom, came at Gillespie's suggestion.
"Going to her classroom was my idea, as I wanted to take shots in an environment where she was more in control and more comfortable in than I was. So it really does vary from photo session to photo session," Gillespie explained.

Usually Gillespie sets up the camera, a Mamiya RB 67, since it's a bit complicated, but she has begun teaching Laoisha the basics.
"I have been trying to teach her the light meter and how to load the film, so hopefully in time she will be able to operate the camera herself," Gillespie said.

However, the camera does not focus itself automatically, so Laoisha has to make her own adjustments for each shot. That's why some of them, like 'Teeth Brushing,' are out of focus, Gillespie admits.

"Picture You, Picture Me," which Gillespie has exhibited in New York, London and Portugal, is still ongoing. Gillespie assures HuffPost there will be more diptychs of her and her daughter to come -- as long as Laoisha is interested.
"This is a very personal, enjoyable project for us, so we take our time and only take photos when it feels right and we both want to," she said.

Couple accused of neglecting daughter with Down syndrome

from WHAS11.com:
CARROLLTON, Ky. -- A Carroll County, Ky. couple was arrested Wednesday afternoon on allegations they neglected their daughter who has Down Syndrome.
Police said an investigation showed that the victim’s father, Billy Ray Mertz, 46, and step-mother, Robin Mertz, 34, allegedly kept their 23-year-old daughter in an upstairs bathroom for weeks at a time.
The victim was also kept in a basement bedroom that was closed off using boards that were screwed into the wall to keep the door from opening.

During the investigation, police said they learned that the victim was deprived of food while she was locked in the rooms.  She reported weighed approximately 189 pounds when she first came to live with the Mertz family in 2009 and weighed only 86 pounds when she was removed from the home, police said.
The victim is currently in foster care with Adult Protective Services, but family members are questioning the validity of the story from police.

will Sue Sylvester's baby have Down syndrome in "Glee" season 4?

Glee Spoiler Alert!

from Wetpaint by Beth Douglass and Ryan Gajewski:
Back in Glee Season 3, Episode 15: “Big Brother,” an abnormal test result gave Sue (Jane Lynch) the shocking news that her unborn baby might potentially have Down syndrome. Nothing could be certain, though, so we still held out hope that Sue might give birth to a happy and healthy little tot.
Sadly, it seems that just won’t come to be. Jane Lynch spoke with E! Online on August 5, she shared that though Sue will have “just given birth to a beautiful baby girl” when the show returns for Season 4 this fall, the tiny infant also “has Down syndrome.”
Given the care and sensitivity Sue has displayed when working both with Becky (Lauren Potter) and with her late sister, Jean, we have no doubt that the new mother will more than rise to the occasion. Plus, can you imagine a Sue-Becky-Baby trio — how adorable will that be?

from Glee Wiki:
Sue is currently pregnant as of On My Way. In Big Brother, she finds out that her child is female and has a high risk of having Down syndrome, similar to how her sister Jean and cheerio of hers, Becky, the two people closest to her, had Down syndrome. Her baby will be born by the time season four starts

also from Glee Wiki:
In Big Brother, Becky shows up in Sue's office door, hovering without saying anything. Sue tells her that she is, in fact, interrupting. Becky tells Sue that she heard about her baby. Sue had learned earlier in the episode that there were irregularities in the test results for the baby, so she clearly assumes that is what Becky is talking about. When Becky says that she heard the baby is a girl, Sue smiles and says, "Just like you," and hugs her, thoughtfully repeating the phrase, indicating that the baby likely has Down syndrome. Becky offers up a parenting tip for Sue to work on her patience.

from teen.com:

Sue gets good — and bad — news about her unborn baby. The good news? It’s a girl, like she wanted. The bad news? She finds out that there were some “irregularities in the amnio” and that her baby has Down Syndrome like Becky. Ok, it’s not unlikely that that would happen to a woman of her age that’s pregnant — but it is unlikely that she’s even preggers in the first place. From a “celebrity” sperm donor. Puleez.

from the Washington Post by Jen Chaney:

Before moving on to the musical numbers assessment, I should probably also note that Sue Sylvester found out that her unborn baby girl likely has Down syndrome, and that she’s also still feuding with Nene Leakes, who is now co-coach of the Cheerios.

from Remington Remer:

Anyways, the ironic part...Sue Sylvester the cheerleading coach (which you would have done too to be just like your favorite Aunite) found out she was pregnant with a girl that may have Down's Syndrome. That part in the show made me smile and the reason there were no tears is because to me you would have to be lucky to have a baby with Down's Syndrome just like you. Sue Sylvester hugged one of her cheerleaders, Becky because she also has Down's. Becky told Sue the only advice she had was for Sue to be "Patient!"

from E Online by Bret Malec and Liz Calvario:

Meanwhile, Lynch also dished on what's in store of Sue Sylvester and her new baby in season four of Glee.

"Momentarily I'm nice," she said. "I've just given birth to a beautiful baby girl who has Down syndrome and her name is Robin. Which to say hearkens thoughts of spring and new beginnings and her favorite Bee Gee."

Two month old girl with Down’s syndrome goes to sea.

from Books Live by Pierre va Rooyen:When she was only two months old, Down’s impaired Lucy left East Africa on a sailing boat. On board were her mother Abigail (the skipper), Lucy’s older brother and a young African boy who  acted as nursemaid. Just the four of them.
Eight months later, they arrived in Malaysia and the nursemaid was able to fly back to Africa.
There is a father, but I won’t write about him, because he cursed Abigail for producing a monster, kidnapped the couple’s other son and disappeared.
I met Lucy when Abigail brought her to tea on our boat. This brave little girl was then ten months old, unable to talk and, because she was so double-jointed, unable to crawl or walk. She dragged herself on her arms. I didn’t realise Down’s children are not only intellectually impaired but also suffer physical abnormalities.
The husband’s rejection of Lucy dragged Abigail into depression.
‘He’s wrong,’ Faith and I told Abigail. ‘We are friends with two teenage Down’s girls and they are fantastic people. This started her checking up on the internet and she quickly changed her mind.
Ten month old Lucy was a girl to fall in love with. She came to tea every day and after she accepted us, we played smiling games. She soon caught on and it wasn’t long before she returned our smiles.
But funny smiles which had us giggling. She would half turn her head away, look at us out of the corner of her eyes, and smile like an imp as if we had caught her doing something wrong. We loved her for that. Ha, but now we were communicating.
She then allowed me to enunciate the alphabet  while she watched my lips. This took me by surprise, all twenty six letters.
To see what her reaction would be, we bought her a life-size doll, probably intended for a five year old. The first thing ten month old Lucy did, was reach for the doll’s hands to see whether this was a real child. Smart thinking.
We were making fast progress and every time she passed in her push-chair, we waved at her. Good thinking. It took her only a day before she was waving back. And smiling, of course.
The next time Abigail took her to the supermarket where Lucy  sat inside the trolley, she took it into her head to wave at every shopper who passed. And of course, they waved back.
Then Lucy got the better of Abigail, We were sitting in Senta’s cockpit having tea and Abigail wanted to take a biscuit out of the cookie jar and hand it to her daughter.
‘No,’ I protested, grabbing the jar. ‘Don’t treat her like a baby. Let her
decide for herself which biscuit she prefers.’ I started to offer the jar to little Lucy.
‘She’ll never take a biscuit,’ Abigail retorted. ‘She’s frightened to put her hand inside the jar.’
I ignored her.
‘Choose a biscuit, Lucy,’ I invited, offering the cookie jar to her.
Lucy had a good look inside the jar, saw the one she wanted, put her hand into the jar and selected the chocolate one.
We killed ourselves laughing at poor Abigail spluttering, ‘Well, she’s never done that before.’
Then Lucy put me in my place. We were eating at a pavement restaurant and Lucy sat in the grass playing with a teak tree leaf. You must know that teak leaves are enormous, twice the size of dinner plates. So she had quite a prize there.
I wanted to play the game of give it to me and I’ll give it back to you. Ha, ha, Lucy was having none of that. She glared at me and quickly thrust the leaf behind her as far as her little arm would reach.
That taught me something. She was regarding me as a bully. Good for you Lucy.
Abigail did get her son back. The father had taken him to Vanuatu in the Pacific and Abigail obtained a court order against him. She’s in Switzerland now with her daughter and two sons, planning on going to sea again. 

a family welcomes a second adopted daughter with Down syndrome

from The Oregonian by Tom Hallman Jr.:

The Christmas gift arrived unexpectedly in the heat of summer when a woman in rural Washington County picked up the phone and was confronted with a choice that she knew would ultimately alter the course of a life.

What if she hadn't been home? Or had declined, saying the timing wasn't right? Both haunting questions that get to the core of love, sacrifice and family -- concepts people focus on so intently during this time of year.

With one little word -- "yes" -- a journey began.

Though it may have started out of desperation, it ended in joy Friday afternoon -- just two days before Christmas -- when a family gathered in a courtroom for a simple ceremony that couldn't begin to do justice to all that had taken transpired during the past five months.

The call came on July 13 when Sandi Brannock's husband was at work and the couple's six kids were busy playing in another part of the house. At her desk, she glanced at the caller identification and read Cincinnati. Brannock knew only one person there. And, sure enough, when she picked up it was Robin Steele, coordinator for the National Down Syndrome Adoption Network. Five days earlier, a mother had given birth in Washington state to twin girls. One was healthy. The other had a heart defect and Down syndrome, both a complete surprise. The parents had decided they were going to take one twin home and leave the other behind. Called boarder babies, these children become wards of the state, which places them in foster care. Steele, who 35 years ago adopted such a child, had been searching her organization's database to find someone who might take this child.

The parents were checking out of the hospital in two days.

She needed to find a family who not only had an interest in adopting a special needs child, but who had also completed a detailed home study, the first step in the adoption process. The computer came up with Sandi and Kirk Brannock. Eighteen months earlier, the couple -- both 46 and married for 17 years -- had adopted Amira, a two-week-old Washington baby girl who had Down syndrome. Steele had an important question for Sandi: Were they interested in adopting again?

Brannock asked if any other families had expressed interest.

No.

• 
  

The circumstances touched a nerve with Brannock, a registered nurse who had worked in a hospital's postpartum and neonatal unit before quitting to raise her children. She knew of a single mother who planned to put her unborn child up for adoption, but the adoptive family backed out when the child was born with cerebral palsy. The birth mother also walked away, and the child was institutionalized. The story hit close to home because one of the Brannocks' sons, Cole, 12, has cerebral palsy.

Brannock told Steele she had to talk with her husband, who works in the high tech field. After a quick phone conversation, she got back to Steele and said yes.

That evening, the couple gathered their five sons, ages 6 to 16. Before they had adopted Amira -- who now walked around the living room during the discussion -- they talked with their boys about what it would mean for their lives. Once again, they wanted their boys to weigh in. One day, when their parents were gone, the responsibility of having sisters with special needs would fall to the boys, they told them. The answer was unanimous. They were gaining another sister, one they would love as much as they loved Amira.

• 
  

The next morning, the family climbed into their 10-seat bus and set out to bring another little girl home. On the way, the adoption caseworker called on a cellphone and told the Brannocks to go to the hospital where paperwork giving them legal permission to see the baby would be waiting.

They arrived at the hospital early in the evening. The boys and their sister stayed in the neonatal waiting room. Their parents were each given a wristband that read "Baby A." On the band was the date the unnamed girl was born. Brannock studied the band, trying to remember what she'd been doing the day the girl she now considered her daughter was born. A nurse led the way to a room with a sliding glass door. She passed a crib where a healthy baby girl slept and stopped in front of a crib near the back of the room. She picked up a bundle and placed it in Sandi Brannock's arms. Brannock scooted over so her husband could sit next to her. She pulled back the blanket to look at the little face.

The baby was small and pale, more fragile than Brannock had expected, and she said a silent prayer asking for strength.

Kirk Brannock took pictures of baby on his cellphone, then went to show the kids her image. Nurses told Sandi Brannock the baby had heart problems and had undergone blood transfusions, which was why she was so pale. Brannock handed the baby back to a nurse. She said she and her husband would return Friday, and the family checked in to a nearby motel.

Sandi Brannock didn't want this newborn girl to leave the hospital without a name. She researched names online, studying the meaning of each one. None felt right.

Then she found Elyana -- God has answers.

•  

The next morning, the Brannocks drove to the adoption agency to complete the paperwork and to meet the parents who decided to give up one of their daughters.

At 11:30 a.m., the parents walked into the room with Elyana's sister in a baby carrier. Sandi Brannock expected a drug-addicted mother, or maybe a young girl. Instead, she found an attractive couple who appeared to be at least middle class. The parents were too nervous to sit, and they stood in the middle of the room. At one point, Brannock studied Elyana's sister. She saw the clear resemblance between the two girls, save for the distinctive facial features that indicated Down syndrome. The couple told the Brannocks they had a 3-year-old son who knew his mother had given birth to twins. The parents said they planned to tell him one of his sisters had gone to live with a family who would care for her.

As gently as possible, Kirk Brannock asked why they'd decided to give up one daughter. When the Brannocks had decided to adopt Amira, some people couldn't understand why. Even though it felt right to them, they approached it analytically, listing the pros and cons. The only "con" was fear. And that was not enough to stop them from going ahead.

Fighting tears, the woman said she and her husband were their parents' only children. They had no family in the area to help them raise a special-needs child. They both had demanding careers. They said they wanted the baby girl to live with a family who could do a better job than they could. The birth mother, clearly hurting, began crying. She said she loved the little girl.

The Brannocks would never judge this woman and her husband, a couple so full of fear and doubt. Better than anyone else, they knew what they were going through and would never want them to feel guilty. A little baby -- made the way Sandi believes God intended her -- would soon be joining a family eagerly awaitng her arrival. But it was impossible to say it just then. All the Brannocks could do was wrap their arms around this couple and hug them tightly.

When the meeting ended, the Brannocks returned to the hospital, where they filled out more paperwork and scheduled appointments in Portland with a pediatrician and a heart specialist.

Then they carried Elyana Brannock to meet her brothers and sister.

• 
  

Elyana was so small and fragile that doctors had to wait three months before she'd gained enough weight to fix the hole in her heart. She was eventually released from the hospital and sent home, but the recovery took more than a month. It wasn't until late November that their little girl was clearly healing.

A date -- what the family called "the day" -- was set to make the adoption official.

Two days before Christmas they all gathered in the Washington County Courthouse, waiting to be brought in to a courtroom where Circuit Court Judge Rita Batz Cobb  would sign the adoption papers. All the Brannock kids, their parents, grandparents and family friends packed the hallway, waiting for the signal that it was time.

He reached for his cellphone, tapped the picture icon up popped a photo of Elyana.

"The rough patch in her life is over," Brannock said. "She smiled for the first time two days ago. We got it on film."

A letter to my 5 year old daughter on her birthday

A letter to my daughter, from Amy of particularlyperfect.com:

Dear Kayla,

How can I put into words the pure joy you have brought into my life over these past five years?  How could I ever tell you exactly what you mean to me and explain the incredible journey we have shared together?  My life has been magical since you were placed in my arms just five years ago today.  Just like the best scenes to my favorite movies, many memories we have shared play in my mind over and over with such clarity.  Like the day you were born…

“She has the cutest little button nose”, Daddy exclaimed as he looked over the paper-like blue curtain that separated me from my future…my life as your Mommy.  As I lye there, nauseous, strapped to the operating table, I envisioned my daughter.  I envisioned you having my hair and Daddy’s eyes.  I was anxious.  I couldn’t wait to hold you in my arms…kissing you, telling you how very much I loved you and couldn’t wait to be your Mommy.  I couldn’t wait to hold my perfect little girl. 

I was scheduled to have a c-section on Monday, May 15 {you were breech and weren’t budging so we were going to have to go after you}.  As with every other time in your five years, you had your own plans.  You wanted to make your arrival when you wanted…not when we planned for.  So during the night of Friday, May 12, I began feeling uncomfortable.  Thinking it was nothing more than horrible gas pains I went to bed and awoke early still feeling uncomfortable.  I was comforted that I wasn’t in labor, as I had just seen the doctor hours earlier who said I was not even close to going into labor and they would see me Monday morning.  My pregnancy began with cravings of jelly donuts.  Strange – I know…but that’s what I craved…that and corn dogs.  Let me say…I have never been a fan of either but my body needed them during my pregnancy.  The jelly donut craving subsided by my second trimester but for some reason the morning of May 13 I was jones-ing for a jelly donut.  I sent Daddy to Dunkin Donuts to buy you a jelly donut {because it was, of course, you that was craving the donut and Daddy would do anything for you…even then}.  By the time he returned {around 9am}, I was in labor with contractions that were 7 short minutes apart.  We placed a call to the doctor and made our way into the hospital.  Knowing I would need c-section and food is not recommended before surgery I was left craving that donut, smelling it…not tasting it {good thing I had you to look forward to or I would have been very grumpy}.  Once we made our way to the hospital, we made our phone calls to family and patiently waited for an operating room.

I remember being afraid of surgery...of the operating room...but keeping a positive attitude, I joked with the nurses on my way in.  Staring at the ceiling from the stretcher, I said "so this is what the inside of an operating room looks like...nothing like it looks on TV".  That was the last piece of laughter that would exit my body for a few days...Everything was happening so quick around me.  I felt tugging and pulling and then was the moment that you entered the world...on May 13, 2006 at 3:29 in the afternoon.  As I lay there I caught a quick glimpse of your naked newborn body as they whisked you to the scale to perform your newborn testing… There was no crying.  I heard nothing and I panicked.  What is wrong?  Oh, God…please make everything ok…please…I would give anything for you to be ok.  Daddy sat next to me, stroking my shoulder and kissing my forehead.  I am sure he told me that he loved me and other sweet things, though I don’t remember the words.  While the next few moments are more vivid than any moments in my life, those moments leading up to the muttered words are gone.  I told Daddy to go be with you, comfort you and talk to you.  I watched him walk away from me, toward you.  I studied the excitement in his face.  I witnessed him fill with pride as he stood over you.  His face lit up like I had never seen before.  He was a Daddy…a very proud Daddy.  And while I wish that memory, that face was the one that was etched into my mind forever, it was the next face that I will never forget.  Daddy snapped pictures feverishly.  After taking at least a dozen pictures, he held the camera at his side.  Still beaming with pride, he looked on as the doctors were assessing you.  For some reason I couldn’t hear and yet you and the team of doctors that surrounded you were just 10 feet away.  Perhaps the doctors were whispering or perhaps my overwhelming emotions of being a new Mom caused me to temporarily lose my hearing.  Whatever the reason, I just couldn’t hear a thing.  As the doctor was busy stitching me up, tugging and pulling at my body, I laid there with my head turned to my left, staring at the backs of doctors in their blue scrubs, wanting so badly to see my daughter.  Wanting so badly to hold you in my arms.  And then I saw Daddy.  Standing proud as a peacock, shoulders back, smiling from ear to ear…and then…within seconds it seemed as if he lost all of the air in his body…his shoulders slumped, his smile was gone and he stood emotionless…staring…listening to the doctors.  I remember yelling out “what’s the matter?” and Rick came running to my side… “nothing”, he assured me, “nothing is wrong”…as you cried I told Daddy to go back to be with you and he did.  Still, staring blankly.  I knew something was wrong.  I knew that he was trying to protect me from something and I cried for him to come back.  I begged him to tell me what the doctors told him…and he whispered “everything is fine.  The doctors think she may have Down syndrome”.  I layed on that operating table, staring at the bright florescent lights and the white ceiling tiles.  I was helpless…unable to hold my baby and without ever seeing your beautiful face I was met with the words Down syndrome.  While it would be days later that I would find out what they said to Daddy, we will never forget those words…that moment when Daddy fell paralyzed with fear, breathless…that moment is the moment that the doctor said to him “I need to show you what is wrong with your daughter” as she proceeded to point out your simian crease on the palm of your hand, your beautiful almond shaped eyes and your flat nose bridge. Then she spoke those two little life-changing words…Down syndrome.  Surely someone in the medical field could have used better terms than “what is wrong with your daughter”…but she didn’t.  Pointing out what is wrong instead of congratulating a new father on the birth of his beautiful daughter. Allowing us time to enjoy our daughter before delivering us the suspected diagnosis.  Moments later they placed you in my arms and I knew.

I saw your round face, your cute little button nose and those almond shaped eyes.  While they were filled with that post-birth goo, I looked into your eyes and I knew.  It was as if I was gifted that Mommy-instinct at that exact moment and in that moment, I knew you had Down syndrome.  As I held you tight and kissed you, I whispered I loved you but wondered if I truly ever could love you.  If I truly had the capacity to love someone that wasn’t “perfect”.  As tears rolled down my cheeks, I held you close and the world around me was blank.  I pressed your head into the crook of my neck as I lay my cheek upon your head.  I closed my eyes and felt as if I left my own body.  I could never explain that moment with the passion and feeling that surged through my body but it was raw and it was real and I felt it.  I felt my body empty.  My heart, my soul, my life and my world poured out of my body.  Within those moments I was rolled from the operating room to the post-op room.  Knowing that family was anxiously waiting downstairs for the call or visit from Daddy that I was ok and you had “ten fingers and ten toes”, he picked up the cell phone and called MomMom {at my request because I knew I couldn’t tell her the news}.  You were having difficulty maintaining your body temperature so the nurse placed you in a warmer next to me.  As Daddy spoke to MomMom, I stared over my right shoulder at you, my daughter, lying under a heat lamp like a chicken dinner.  I heard the casual back and forth of yes she is in recovery and doing well…he explained you looked just like a little loaf of bread...and then the pause…Daddy looked down at the tile floor, turned his back to me and muttered “they think she has Down syndrome”…and with that was silence for what seemed like an eternity.  I remember feeling bad.  Knowing all of the pain and hard times my Mom has endured over the years, knowing how much she was anticipating your arrival and knowing she would never expect this.  She would never expect this diagnosis.  In those moments, I re-played a conversation with her.  About 8 months pregnant, walking through the mall as we shopped for our most anticipated arrival {you}, we talked about the what-ifs in life and MomMom reassured me God would only grace us with a “perfect” child because he knew just how hard her life has been.  With that conversation rewinding and replaying through my mind in that recovery room, I felt shame.  I felt like I was letting her down.  There was more back and forth and then Daddy confirmed it was ok to come visit, two at a time.  When he hung up I braced myself.  I felt fear rush through my body.  I didn’t want my Mom, your MomMom, yet I needed her.  I needed her to heal my wound with a band-aid and a kiss.  I needed my Mommy to take away the pain.  The fear.  The sadness. I needed to hear her voice, reassuring me that everything would be ok.  Within seconds she entered the room with blood-shot eyes and a smile.  I know now that she cried in the waiting room for me.  She cried for my heartache and my fears because she knew you would be just fine.  And while she cried as she looked at you, they were the happiest tears I have ever seen.  Her pride, her love and her joy for you…for us…it was contagious.  And with that I felt a bit of fear leave my body.  Visitors came and went…and then it was just us…our family.  The nurse allowed Daddy to stay longer than visiting hours permitted, knowing the news of your expected diagnosis.  Knowing I probably needed him.  And I did.  While I don’t recall any of our conversation, I will never forget his actions.  I will never forget his instant love for you.

It radiated through him and took over his soul; poured through his entire body and I could see it in his eyes.  You were his baby girl and he loved you and cared for you with every ounce of his being.  

As your birthday ended, I remember pressing your naked body against my bare chest in the dark hours of the night.  Hearing monitors beeping in the hall and babies crying from other rooms, I held you tight.  I studied your face with your flawless milky skin, your brilliant sky blue almond-shaped eyes, your button nose and heart-shaped pinkest of pink lips.

That image of you will live in my mind forever.  I will never forget holding you during those hours.  I will never forget those moments with you as we entered the early hours of my very first Mother’s Day.  I clutched you with every ounce of my being.  Tears rolling down my face and onto yours, I cried for you.  I cried for the you that I wanted you to be.  The “perfect” baby I needed and wanted.  And while I loved you, I was struggling with accepting you.  I wanted so badly to pick up the phone to call my friends.  I needed people by my side, yet couldn’t bare the thought of speaking those words…Down syndrome.  There was no doubt I wanted people to love you and accept you…but how could I expect people to accept you when I couldn’t accept the diagnosis that is part of you?

Unfortunately, the feelings of despair, helplessness and sadness remained through most of our stay at the hospital.  The moments that we were alone were special but some of our visitors walked into the room, quiet, not making eye contact.  Instead of congratulations, I heard “how are you?”  And while they may have truly just been asking how I felt, I read into it.  Just as people ask “how are you doing” when you lose an uncle, spouse or child…to me, it seemed as if people were walking into a funeral instead of coming to visit a new baby.  And in those moments, I lost it.  While I don’t remember my exact demands, I know my yelling cleared the room.  I know that my sadness hit a point of no return and I needed people surrounding me to congratulate me and love you.  I needed for everything to be ok.  I needed for you to be perfect, just like everyone expected you to be.  The irony was while I saw that extra chromosome, most convinced me it couldn’t be.  Friends and family members convinced me you didn’t have Down syndrome.  Most family members looked at those characteristics the doctors pointed out and found those same characteristics in themselves. 

While I didn’t want to envision people with Down syndrome that I have met or encountered in my life, I did.  While I didn’t want to put you in that “box”, I did.  And while I envisioned those people, visitors continued to assure me there was no way you had Down syndrome.  I am ashamed to admit that it felt good to hear “she doesn’t look like she has Down’s” or “she’s too pretty to have Down syndrome”…because what does that mean?  Kayla doesn't look like she has Down syndrome.  And neither do JJ, Nella, Victoria, Grace, River, Charlotte, Natalie, Brendan, Matt, or my many other friends.  They all look exactly the way they were meant to look...like their Moms and Dads, brothers and sisters and cousins.  And yes, while they do possess characteristics that resemble each other, they all look much more like their family than each other...than a "box" labeled Down syndrome.

We didn’t receive the official diagnosis for three weeks.  That night as I was trying to process the news, I remember standing in the shower sobbing.  I remember the water hitting my back as tears fell down upon my feet.  Weak and helpless, I leaned my body against the cold tile wall.  I slowly slumped until I reached the shower floor.  I allowed myself that time to cry.  I allowed myself to release the pain, the loss that I was feeling.  That fear of will you walk, talk, have friends, go to prom, drive, get married, have a career…those fears filled my mind and tears filled my eyes, ache filled my heart.  The shower became that place for me…that place of safety where I could cry and release my anger and my sadness.

All of those moments of fear…the moment that Daddy was delivered the news that you “weren’t perfect”…the moment that family members came in to visit you in the hospital with tears and fear in their eyes…and those moments when I tried to wish away Down syndrome…they were all because of the unknown.  None of us understood.  None of us could even imagine the amazingly beautiful, intelligent, kind and loving five-year-old little girl that you are today.  None of us imagined your abilities in those moments of fear.  In those moments I saw disabilities.  I saw differences.

While I loved you and photographed every bit of you...every face, every outfit, everyday…I lived with fear.  I lived with the what-ifs and the whens?  What if this happens and when will this happen?  And as you hit milestones those fears started to slowly fade.  One day while sharing my fears about your future with a friend, clarity hit me like a ton of bricks…that clarity is this…no mom knows who their child will grow up to be.  No mom knows when their child will walk or talk.  No mom knows if their child will go to prom or college or get married…and as moms, we can just hope for a bright future as we set our children up for success.  Since that day, since that moment, I have looked forward.  I have hoped forward.  I have worked and pushed and fought for you.  I have loved you fully for who you are.  And while I have moments and even days of worry, I know those worries are the same worries that every Mommy has.

If only everyone could have seen you then as you are today...we all would have seen you just as you are, just as you were meant to be… perfect.

For you are more loving than any five year old I know.  You are kind, caring, have impeccable manners, love unconditionally and live fully.  You are beyond perfection.  Your joy is infectious…your laughter contagious and your desire to learn is admirable.  While we have been on this journey together, I promise you that I have learned more from you in these past five years than you will ever from me.  Together, we have been an inseparable team…a force.  We have been breaking down stereotypes, discouraging the use of hateful words…living fully and loving unconditionally each and everyday.

I am changed.  I am better.  Because of you.  Each moment and each day that passes is better than the one before…and while some days may not be easy, each day is filled with life and love and laughter.  Each day that is filled with time spent with you is the greatest gift I could wish for.  I know that time is passing fast but I am trying to hang on…trying to enjoy each moment of this sweet ride.  This roller coaster ride of life of ups and downs and twists and turns is just that…a ride.  We’re hanging on when we are filled with fear and letting go when we are brave.  There have been many moments when I clutched that safety bar until my knuckles turned white…moments of fear when I wanted to apply the breaks…but just when I think I can’t take it any longer, I think of you…I look at you…and I smile…and each moment of pain, bit of fear, worry of milestones, and thought of “special needs” disappears.  And while those darker days are what make today brighter…they seem so far in the past.  I no longer think of Down syndrome on a daily basis.  I no longer think of “special needs”.  I think of you.  Yes…Down syndrome is a part of you…but that extra magical chromosome that makes you who you are, I no longer fear that chromosome.  I am proud of that chromosome and I am proud of you.

Five years has brought love, acceptance, courage and new friends into our lives.  No matter where we go, people know you…they know you by name.  You enter restaurants and are greeted with a loud, cheerful, “KAYLA”!  Some don’t know my name…but they know you.  In Rehoboth Beach where we do the Boardwalk Buddy Walk, vendors around town…like Ryan’s Surf Shop and the Christmas Shop welcome you with hugs and love {and usually a little gift}.  The staff at the Cheesecake Factory know and love you and are excited every time we eat there.  People have changed their majors to Special Education because of you.  People have stopped using the R-word because of you.  People have become more understanding and accepting because of you…and I am one of those people.  While you may not be who I thought you would be, you have turned me into the person I am supposed to be.  Thank you, Kayla, for all that you bring into my life.

You bring opportunities that I never imagined possible the first time I held you in my arms.  Life-long friendships have been made because of you.  Hearts melt with every smile and opinions change with every “hi, I’m Kayla…what’s your name?” {in your cutest voice}.

Those that met you with fear are now believers.  They are filled with love and hope for your future.  Those that did not understand Down syndrome now understand.  We all understand that while you have Down syndrome, it does not define who you are or who you will grow up to be. 

While some of our first moments together have faded, the guilt of not accepting you fully from the beginning is real and powerful.  I feel it from the core of my soul.  For as long as I remember those moments, for as long as I breathe, I promise you this…

I will never treat you different, expect less of you or stop pushing you to try harder. I will never allow anyone to disrespect you. 

I will always encourage you, respect you, be your biggest fan, your advocate and your supporter.  I will always hope for a brighter, more accepting tomorrow.  But above all, I will always love you for who you are...my beautiful, amazing, intelligent, fun-loving daughter with designer genes.  And you are rockin’ those genes. 

Happy 5th Birthday, Kayla!  Our five-year journey has been filled with the most incredible memories…

some of the most amazing moments of my life and I look forward to each and every moment in our future.  You are exactly who you were meant to be and I have no doubt you will make the most incredible impact in the lives of many.  Shine bright, little star.  Shine bright.

You will always be my perfect princess.

Love,

Mommy