Sheila

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Dear Self,

Well, it has been almost 29 years since Kerry was born.  Although there were no indications from ultrasounds that  life would be a different journey – you  were not surprised when the doctors came to you after your C-section to tell you the news.  The last 2 months of this pregnancy seemed different.  The baby moved differently, not nearly as vigorous as the other babies.
Your first thoughts are how can I do this.  What I remember reading from my college textbooks was grim – low functioning, complete helplessness, short life span.   People would say “they are so lovable”  and I would think to myself – is that it?
You have never been more determined in all your life to stretch your abilities beyond your comfort zone.   You were on a search for help, guidance, answers.   In 1986, services were limited.  Knowledge was limited.  People felt badly that I had this beautiful baby.
Self,  kudos to you for moving forward.  I would tell you not to fret so much.  Balance your life with your family and managing this diagnosis of Down syndrome.  Don’t let it take over – it can, it will if you let it.  Be strong.  When others try to predict what your baby will be in the future,  move forward.  Do the best you can, as you do for your other children.  Provide opportunities for learning and help her to be sociable.   Help her to be independent.  Don’t feel guilty when you think you need to add more therapy time or constantly teach her.   She is learning from everyone.  It will be ok, and at some point, you will not focus on the label.   She is Kerry and you are her mom.
Sheila A. Cannon
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Kishore

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Dear Self,

You remember so well growing up with your brother Das.  You and he were so close in age, and you both always seemed to enjoy being together.  You didn’t realize that there was anything different about Das at all until someone else pointed it out.  You didn’t know what to do with that information – it didn’t make sense!  You spoke with your parents, and they confirmed that Das indeed had some special challenges that you did not have.  You became so upset because you never realized that was why Das struggled so much more to learn things than you did.  You just thought that’s how all brothers were!  It just always seemed to take Das a little bit longer to be able to pick up the games you were playing, but he always did!  All through his education, you learned patience by watching him struggle, persevere, and then ultimately accomplish what he wanted to do.  And then you saw the unbridled joy in his face when he finally got to say “I did it, Kis-ow!”

As you got older, you started to wonder about the fairness of it all.  Why did Das have to struggle with so many things that came so much easier to you?  Why would God make a child have to go through all that?  Your struggles reached deep into your core and rocked you spiritually.  You began to doubt in God’s existence altogether for so many years.  Then, in what could only be described as a miracle, you began to see all the qualities that were always there but taken for granted.  You began to see Das’ ability to love everyone unconditionally.  You began to personally experience Das’ very real forgiveness whenever you messed up.  You found that Das resembled God more than any other person you had ever met.  It was then that you realized that you were the one born with one chromosome too few, and Das was born with just the right amount.  You realized that God’s version of perfection was different than your own!

Hang in there, Kishore!  God’s got quite a roller coaster ahead of you, and the exhilarating time is on the way!  You are going to get a dream job where you will be able to indirectly give back to Das by directing a clinic for thousands of children with Down syndrome.  You are going to impact the lives of not only those children but also their families and siblings, in ways that you could never have dreamed.  And after some struggles of your own along the way, you will hear yourself say, “I did it, Das!”

Sincerely,

Your Self

Paul, James, Kathleen, and Liz

By Paul (age 8), James (age 11), Kathleen (age 13), and Liz (age 17)

Dear selves,

Almost six years ago, your sister was born. She was an adorable baby, and from the moment you held her in the hospital she stole everyone’s heart. You knew people from school who had Down syndrome, but there was still a lot left unanswered about how Down syndrome would affect your family’s future- will it change the family dynamic? Don’t worry- every time a child is born it changes the family dynamic, and Annie will be no different. Don’t imagine her as being like the other children you’ve known with Down syndrome- you’ll watch her blossom and come into her own unique personality. Soon, she’ll become the center of your family life.

There are many things which you might have heard about Down syndrome. Technically, you understand the diagnosis- an extra copy of the twenty first chromosome. What you don’t understand is how that will change her life and yours. Although it affects her speed at learning, it does not affect her personality, which remains as unique and vibrant as ever. People who only understand her as someone who has Down syndrome miss what makes our sister unique. So we would like to tell you why Annie is the cutest little girl ever.

Annie loves music. Her favorite movie is Frozen, and she knows every scene. We once saw her enact the entire scene of “Let It Go”, keeping time to the music and reenacting what Elsa was doing on screen. She also loves Sofia the First and Tangled. She hates getting her hair combed unless mom sings a song from the Disney movie Tangled.

Down syndrome has made talking a challenge for our sister, but she has a strong ability to communicate nonetheless through a combination of speaking and sign language. She is often heard standing at the bottom of the stairway and yelling “Ma! Ma!” until our mother comes down and helps her with whatever she needs. Recently, her favorite words have become “hockey”, “cup”, and “Crosby,” in honor of the Penguins. Whether she is asking for gravy (her favorite food) or searching for ice cream, she always makes her demands known. Often, if no one is in the kitchen, she can be seen searching the countertops and the freezer for the chocolate chips that mom keeps for cookies.

Our younger sister has a strong sense of compassion. She is always the first to help others (including her older siblings) or cheer them up when something goes wrong. She has a keen understanding of when people need help, and since she was young we have often noted how she would go out of her way to make friends with the elderly, sick, or children younger than herself. One of the girls on our high school lacrosse team tore her ACL and was in a wheelchair. When mom came over to talk to the team after the game, all of the girls were fawning over Annie, but she only looked at the girl in the wheelchair. Annie seemed to know that that girl had gone through a lot lately, and as we were leaving, our then two year-old sister blew her a kiss.

Our sister has many friends at her grade school, including many children in the St. Anthony’s program, a program for students with special needs. She loves to go to school and learn with her friends and teachers. She rides the bus and will often run to get to the bus (even though she is asleep for most of the ride). She will be in first grade this fall and is growing up so fast. She loves to count and to sing her ABCs. She is even excited to do her homework and pack her snack for the coming day.

Our sister Annie also loves to play with a toy ferris wheel and lots of stuffed animals and dolls. As we mentioned before, she loves music and will often borrow mom’s phone to play her favorite Disney songs. When she has the phone, she will also take pictures or go onto Snapchat.  She enjoys looking at pictures of her friends from school on Class Dojo, the internet page for the St Anthony program – we call it her Facebook.  She loves playing hockey and Frisbee with her brothers, swinging on swings, and playing soccer and lacrosse with everyone.

At Annie’s Christmas play, she was the star – literally.  She played the star of Bethlehem, and stole the show.  At the end, when it was time to bow, she dabbed. At her end of the year kindergarten performance, she counted out loud by herself for all to see.

These are just a few reasons why Annie is a wonderful person, a great sister, and a blessing for all.  Without Annie, we would never have known what a joy it is to be around a person with Down syndrome.

You couldn’t have imagined who Annie would become. We’re sure that her future is bright, and that she will continue to be the center of our worlds. In the meantime, enjoy holding your baby sister while you can!

Joy

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Dear 2012 Self,

I remember you. You were utterly, purely delighted about being pregnant. You figured out creative ways to tell family and friends. You even started a Twitter feed for “Little Pierogi,” as your closest friends called the baby, posting cute updates like “My heartbeat is perfectly in time with ‘We Will Rock You.’ #NoCoincidence”

Then there was August 17.

You had just found out that you were having a boy. Your husband David had already started talking excitedly about Cub Scouts and soccer. You received a call at work from the OBGYN’s office. An intentionally perky voice informed you that your blood screenings had indicated an “elevated risk” of Down syndrome.

“What’s elevated?” you asked.

“Well, for your age it’s typically one in 1,000. With these results it’s 1 in 48.”

You hung up the phone in a fog. You called David and your mother in tears. To say this was unexpected was an understatement. You had had the “perfect” pregnancy so far—no throwing up, no weird cravings, no diabolical mood swings—and you, like any expectant mother, were certainly not “expecting” a child with Down syndrome.

That night was the first time you felt the baby kick.

The next week passed. Your blood was shipped off and tested. Results weren’t expected until after Labor Day weekend—the weekend of your family reunion, where second cousins you hadn’t seen in months would be excitedly asking all about the baby. What would you say?

And then there was August 30.

It was your first night of class for the fall term, a class you had been so excited to take. You almost didn’t go. The doctor called you that afternoon—the results had come back early, confirming that your Little Pierogi had three copies of his 21st chromosome. Your “elevated risk” had gone from 1 in 1,000 to 1 in 48… to 1 in 1.

Thoughts of nursery themes and diaper brands turned to questions of learning disabilities and life expectancy. All at once you were drowning in it, clinging to the unborn child you already loved and to the “normal” life you had assumed he would have. You felt bewildered and powerless, more deeply than you ever had in your life.

But here’s what happened next, Self.

You went to class that night. You pulled it together enough to sit in one of those molded plastic chairs and accept your classmates’ congratulations with a smile. You hoped that you had fixed your tear-streaked makeup enough that they wouldn’t think you were a weirdo.

That night his name came to you: “Joshua.” It wasn’t even on your list. But it was, simply, his.

The next day you and David drove to your mother’s house for the weekend. Did you still want to go to the reunion, they gently asked? Yes. Joshua was coming, and you wanted everyone to know it.

The reunion was full of congratulations and well-meaning questions. You told them his gender and his name. You didn’t mention Down syndrome yet, because you needed to wrap your head around it first. That was okay, Self. You knew you would get there.

And you did. With a humongous amount of love and support, you reclaimed the wonder and delight of expecting, not just any baby, but your Joshua. The Joshua who would be your firstborn, your amazing son, your “Goosie,” your “Honeybee,” your precious child. You were continually lifted up by your family, your friends, your church, amazing doctors and medical staff… and of course, the One who made Joshua—because He knew exactly how many chromosomes to give him.

And then there was January 3, 2013.

 You delivered Joshua at 11:13am, at the same hospital where his daddy was born. He was a pink, squirming baby with dark hair and alert eyes. Joshua tried to put his feet down and stand up at the ripe old age of ten minutes. He was perfect. And in the more-than-two years since, Joshua has amazed you at every turn with his abilities, his curious and insightful mind, his kind spirit, and his sense of humor. He’s still perfect to you, and (spoiler alert) he always will be.

I want to tell you one more thing, Self. It’s about that word you heard back in August 2012: “Risk.” The first (wholly inappropriate) synonym for “risk” in my thesaurus is “danger.”

You were never in danger of having a child with Down syndrome.

The only “risk” you faced in August was that, unlike most parents, you got to know about one of Joshua’s chromosomes early. That knowledge led you down an unexpected journey of fear, focus, peace, and (ultimately) excitement. Thank God that you didn’t get stuck at “fear.”

Despite “risk” being a pretty standard medical term, I do not think it fits into a discussion of Down syndrome itself. Down syndrome carries increased risks of medical complications throughout one’s life, yes, but Down syndrome itself is not a danger, a threat, or even a loss. It is a uniqueness, a genetic mutation that represents both shared traits and endless individuality.

That’s why you should use the second synonym for “risk” in the thesaurus: “Possibility.” By that definition, Joshua’s life will be full of risks, in the best ways. Let him take them.

Let him try. Lift him up. Cheer him on. Tell him he can do it. Tell him he’s smart. And never forget what you told your family when you announced that Joshua would be born with Down syndrome:

“We plan to raise Joshua with limitless expectations and limitless love.”

A life without limits is full of risks—possibilities. And you wouldn’t want anything less for Joshua. 

Terri

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Dear Self,

When Nicholas was born, and the doctors said that they suspected he may have Down syndrome, the sadness was suffocating.  The phone call from the genetic doctor two days before Christmas  with the words,  “I know this is not what you want to hear, but Nicholas has Down syndrome” – was a crushing blow.

Nick developed Jaundice and we had to take him back for additional blood work on Christmas Eve.  The happiness and joy of everybody getting ready for Christmas surrounded us, but all this did was add to my unhappiness.    All I could foresee in the future was bleakness, hopelessness, unhappiness.  I wish I could go back and show you how wrong you were.

Even though the blood work confirmed it, you held on to the hope that the diagnosis was wrong.   The final blow came when we had our appointment at the Down Syndrome Center.  You held fast to the belief that Dr. Cohen would examine Nick and declare that an error had been made.  This did not happen and it was devastating.

You spent almost a year either crying or feeling deep anger – “why did this happen to my child”?   I wish that you would have been able to find an active parent group, meet up with other families that had a child with Down syndrome – not even the many pages of Facebook were around then.

Then one day Nick giggled and reached his arms out for you to pick him up – this was the turning point.  The dark cloud that you had been living under suddenly lifted and you realized that this was your precious baby and he needed you – to be strong, to fight for him and to protect him.

The road has not always been easy, but it hasn’t been the bleak nightmare that you envisioned.  What you didn’t realize was that each and every accomplishment – no matter has big or small – has been celebrated as the gift that it is.  When Nick finally drank from a straw, (after years of working on this skill) – the celebration that took place in the middle of Bob Evan’s Restaurant had everybody clapping and congratulating him!  Speech continues to be one of his biggest struggles – but every sentence is like Christmas morning.  You take absolutely nothing for granted.

What you never imagined during those early days was the unbelievable joy that your son would bring to your family.  He has bonded your family in ways that you would never have thought possible.   His very presence has brought wonderful people into your lives – therapists, teachers and random people who engaged with Nick at various places.   Many of these people have become friends for life.

Nick is now a junior in High School.   He has friends in his classroom and is planning on going to the prom.   He loves music, dancing, football, hockey and basketball.   He works, through school, two days a week.  These are all things that you never imagined during those dark days.   Self, I wish you could have known some of this when he was a baby.  I wish that I could have told you that life was not over – just different.      Just keep putting one foot in front of the other and keep taking one day at a time.  Just like life is with any kid, not every day is going to be good – but some days are going to be awesome!

Somer

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Dear Self,

It’s okay to cry. It’s okay to cry really hard. You don’t know anything about Down syndrome. That perfect white fence you wanted so badly is now painted yellow or blue or purple and that’s okay. You hear the doctor say irregular heart, almond eyes, Down syndrome and what you were told at 20 weeks will be confirmed on her birthday. You’ll look at her and think, she looks like a baby. And you’ll smile because you’ve been told so many negative things during your pregnancy that you forgot that first and foremost, she is a baby. A beautiful, tiny little infant. She’ll conquer open heart surgery at 8 months, she’ll conquer walking and talking. She’ll beat RSV and pnemonia. She’s conquering the world every single day and she’s only three years old.

Ever will surprise you in the most profound ways. You’re future self will look back on this and realize you had it all wrong. Ever will still learn to walk and talk. She will still laugh at jokes and dance her little heart out. She’ll still love going to the zoo and having a sibling. She’ll give you big hugs and kisses and tell you “I love you.” She will still act like every other typical three old with her tantrums, and questions and curiosity. She’ll fill your heart with so much hope and love and excitement that you will forget that on the first day of seeing her, you were scared out of your mind. You will forget how sad you were. You will forget all the terrible things you thought you’d never get to share because those thoughts were in fact, false.

Dear self, you now know that you would not change a single thing about her. She is absolutely perfect. Her clear blue almond eyes, her button nose, her petite frame, her perfect little fingers and sweet little ears. You’ve fallen madly in love with her. She will hold your hand and caress your hair and snuggle right in, so perfectly. She’ll make you laugh with her “snapping” fingers while making clicking noises with her mouth. She’ll make you laugh with her sassy ways. You’ll be in awe of her sign language and her “reading”. So don’t worry, she’s doing it and you’re just along for the ride…and it’s a wild one.

Parletta

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Dear Self,

Thirty years ago today you were barely expecting.  You knew there would be a third child but in those days there was no advance notice of gender or deformity or anything else.   It was not a problematic pregnancy and your son arrived on a Sunday morning.   Already named Jonathan in the hopes that the baby would be a boy, he was beautiful and alert.

 On day one you noticed a strange attitude in the nurses and the pediatrician.  They gave you pamphlets from the March of Dimes with titles like “This Baby Needs You Even More”.  They would not answer any questions about why Jonathan would not suckle, just taught you how to enlarge the nipple hole so he could drink better.   A loving mother and dad do not notice anything unusual in their newborn son unless it is specifically pointed out to them, so you and your family took Jonathan home along with pamphlets and questions and just proceeded on with life.

 At his six week checkup, you and your husband were the last people in the waiting room, even though your appointment had been scheduled.   The pediatrician slowly went about showing outward features of Jonathan that were different from normal babies.  You were very slow to absorb what was being said. Sure, he had big lips and sure he had some difficulty sucking.  But yet, until she said the words Down Syndrome, and showed you the genetic chart, did you realize what was being told to you.

The doctor told you and your husband that Jonathan was lucky to have two parents who were teachers and that he would get lots of help from us.    She said that her son had juvenile diabetes and was lucky to have two parents that were doctors.   You did not see the similarity at all.   You left the office in tears.  You went home and started to phone family members.

 Fast forward a decade, for there is too much uncertainty and grief in the early years to recall it all.   It is just too painful to relive all those emotions.   So fast forward a decade to the days when your mentally challenged son dumped wood ashes all over himself while seated on the new sofa.  To the days when your delayed son learned to ride a two wheeler because his older sister just would not give up on him.   To the days when your son with Down Syndrome won a prize at the Science Fair for a project he really did do all by himself.  Pride is the only emotion that follow love for this child who works so hard to accomplish each task he does.   You now laugh and cry over his antics, not over his lack of them.   You speak in public and in private to those doctors and nurses who were afraid to tell you the truth when he was born.  You start support groups where there were none.  You travel to Hershey and Pittsburgh and State College for the advice of experts for specials glasses , for equipment like a standing box and special toys.   You wish you could put him on the big blue farm tractor, which he now drives in the fields, take him down the PA Turnpike and right up into the office suite of the psychologist that told you he would never drive a tractor.

 It is now 2015.  Your son will turn 30 years old in September.   He lives independently in a lovely group home with supportive staff and peers.   He has a job site that he attends every day.   He goes to dances, drumming, horse riding, swim aerobics, church, bowling, movies and makes the most amazing latch hook rugs which he gives away to his friends.    You would not give him back for a “normal” son in a million years.   The road has been tough but you have been assertive and determine that he grow up to be a responsible and independent adult in whatever way is possible.    He never misses sending a birthday card and called to sing Happy Birthday to all family, however extended.   He never misses buying his monthly DVD with his paycheck.  And he never misses baking bread and splitting firewood with Dad when he is home.   Here’s to many more decades of memories and good living.  You certainly can make it from here on.

 

Love, 2015 Self

Megan

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Dear Self,

I knew about Down Syndrome, even had some friends who had it. It never quite struck me like the day when my very best friend in the entire world called to tell me that she had her miracle; her baby girl that we long awaited after many trials, disappointments and tribulations. It was May 25th and I had just left my son’s preschool graduation. I was so excited to learn about the news, I barely recognized the tremble in my dear friend’s voice….”they think she might have downs” she said with a tearful voice,  “I don’t know what I’m going to do”.

I couldn’t help but shake with her. Though we were miles and states apart, it was like we were in the same room, sharing the same thought. It was scary, it was sad, it was a rush of emotions. Quickly, ration set in and we talked through tests, next steps, and how to handle the situation. I left the next next morning and went to Pittsburgh to meet this beautiful baby that my best friend and her husband brought into the world. She was precious –perfect in every way.

Zoe is now going to be 3 years old. In the last three years, my godchild has grown to be funny, tough, and stubborn. She is smart beyond belief and has the most caring, patient, loving parents any child could ask for. I know that not every day is easy for them. I know that they worry, cry, and push on for what is right and deserved for their child. But I also know that God put Zoe here on earth for them. To teach them, and me what unconditional love is all about. She is an inspiration. Her family is an inspiration and I am honored each and every day to say that I was able to stand by my best friend’s side the day she married and will be able to stand by her daughter’s side for the rest of her life.

I love Zoe as if she were my own and I would do anything for her. I love the fact that my young children have never once asks about Zoe or if she’s different. They don’t know her any other way and don’t even notice a difference. It’s their pretty girl…it’s their “cousin” and they are also blessed to experience and witness her strength, courage and love.

I am a better person today than I was three years ago. I know that and would have never known what i was missing if Zoe didn’t enter our lives.

Karen

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Dear Younger (by 23 years) Self,

Relax.  Breathe.  Yes, parenting Charlie Walker will have its challenges, and some of them seemingly insurmountable.  But be calm, because in spite of those hurdles, there will be great – yes, GREAT – experiences with him and for him in this life.

And there will be amazing experiences for you too.  Yes, you will have more children.  Yes, your husband will love you whether you’re a special needs mom or not.  And, yes, you will raise a wonderful family that is special and not because someone in it has special needs.

Still, don’t sugarcoat the special needs experience or dismiss the reality that those special needs, that Down syndrome diagnosis, will affect you, all your children, your family and your friendships.  It will.

Yes, Charlie will have physical characteristics of an individual with Down syndrome.  But at times he will look just like his Dad, and mostly he will look just like Charlie.  Yes, no matter what you do, your other kids will still complain that you love Charlie more.  But whatever, ‘cause seriously, living with 3 teenagers was way more difficult than anything ever anyway, and everyone is lucky we made it through whole (heads up on that, by the way).  And, yes, people in your family, community and random strangers will say the most ridiculous things to you.  But, what truly matters is how you, your children and your hubby feel about each other and frankly, there’s always been a whole lot of love there within you all.

So my suggestion is that you accept, as soon as you can, that this diagnosis is now a part of your life and a part of your baby.  Don’t let the diagnosis get in the way of seeing Charlie for who he is though, and who he will be (hint:  he’s AWESOME, like his siblings J). I mean, those baby blues with the Brushfield spots:  heart-stoppingly gorgeous, right?  Breathe him in, Karen, breathe it all in and soak in that joy and love. You are one lucky mama, and Charlie is one lucky son.

Love, Older (by 23 years) Self

Jill

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Dear Self,

First off remember to breathe, there will be so many times you feel like you can’t breathe but force yourself to take deep breaths.  Also, it’s alright to be scared and to worry.  You cannot even imagine how your life will change in the next almost 3 years.  Your journey is just beginning and it will be an amazing ride and worth every second.

You had it rough, two rounds of IVF and preterm labor but all looked great on the sonogram and doctor visits are going well.  You are 38 weeks along and it is finally time to meet your baby girl! Labor was easy and Zoe Armene is finally here.  Then your world came crashing down. The words just ring in your ears, Trisomy 21, possible heart defect, hearing issues, infection, jaundice, low muscle tone, PT, OT, DV, Speech and the list went on and on.

This can’t be happening, I can’t lose her, not your miracle baby! The next 6 days will be the hardest days of your life.  This is supposed to be the most exciting time in your life and they have rushed your baby across town to Children’s Hospital and you have to be apart from her.   It’s ok to cry and it’s ok to rely on Patrick (your amazing husband) to be with our daughter while you can’t be there.  You will live at Children’s while Zoe is there, you will need to rely on your parents, your mother-in-law, your brother and his family, your friends, and extended family and they are there to help.  It’s ok to cry, be mad, and question.  Ask as many questions as you can and get as much information as possible.  There are so many resources (the Downs Clinic, support groups, parent to parent, Early Intervention) and use them and your family and friends for support.

I know that you will always worry about Zoe and be scared but you and Patrick are strong and you got this! Follow your gut and instincts.  When you feel that you need help its ok to ask for it and to reach out.  Remember it takes a village to raise children and you have lots of village people on your side.

By the way, Zoe Armene Dunlap is amazing!  You will be proud of her every second of everyday! She is strong willed, determined, ornery, smart, sweet, hardworking, beautiful, loving, and the strongest person you will ever meet! She will teach you and her family more in these almost 3 years than you could ever learn in any textbook, seminar, or doctorate course.  Continue to push her and have high expectations for her.  God knew what he was doing when he picked you as Zoe’s parents and her as your daughter. You’re great parents and it shows in your beautiful miracle baby!!!

Love,

Your Current Self

Rachel

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Dear Self,

Your precious angel face has made it to her third birthday, which happens to be World Down Syndrome Day. One of 4 babies born across the country 3/21/12 with Down Syndrome!  You thought why are these people so happy about this statistic?  How can I celebrate when my poor baby has a broken heart and god knows what else will be in store for her.  Will she live, walk, or talk?  Will she ever get married or get to have her own family….her kids could have Down Syndrome.  Her precious little body has to be so strong when it shouldn’t have to because that is what mommy was supposed to be for.

Now you know why they came into to greet you with such enthusiasm and happiness for our precious gift…a baby girl that is absolutely perfect for us!  She has taught you to be stronger than you can even imagine and the “true meaning” of admiration!  Recently, you looked at the hospital picture before your scheduled C-section and you had tears stream down your face because you had no clue….no clue what you and your precious little girl were going to endure.  Oh how you watched her yo-yo in and out of the Children’s Hospital …..pack the bag in a hurry before that ambulance or Life Flight arrives!  You thank god she is finally home way more than she is admitted.

You think now she can walk and is taking 20-30 steps independently…go MY HERO!  You are proud of her ever growing vocabulary and signs.  Rachel, you see your daughter that you will raise to meet her full potential and push her to accomplish her dreams!  You say my little angel with Down Syndrome might just come to me and say she wants to get married and have a baby…yea she might have a baby with Down Syndrome and so did I;>)!

Happy Birthday Angel Face!!!

Mommy Loves you! XOXOXO

Jim

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Dear Self: On this wonderful day full of excitement waiting for the birth of our child things were going so smoothly. But, looking back things were not right from the time we arrived  at the hospital. The delivery room was dark and quiet. As our son was born the delivery nurse stated very directly without an ounce of compassion ” Your son has trisomy 21″ and she walked away. We were then left in that quiet, dark room alone without any idea what just happened. Quietly we sobbed and mourned for our child who will live forever handicapped in a world already tough on the “normal” children. My wife never let my son leave her grasp as she protected him like a strong mother would. Me, I had thoughts racing through my mind..can we care for him…do I want to care for him..this is life changing. Yes negative thoughts entered my mind. My oldest son was heart broken his brother had Down’s syndrome…why his brother. Well, this is where you circle the wagons and do what normal parents do…we raise our children..give them all of the tools we can so that they can be successful. We had 3 therapist a day 3 times a week. We battled sinus infections caused by small ear canals. We had 2 surgeries to insert tubes and to widen ear canals. He needs a hip replacement in the future. But. Looking back to those first days after my son Matthew was born I couldn’t have been more wrong and am so proud of my strong wife to get us through the hardest parts. Make no mistakes. It is hard. But so much worth it.I am Matthews best friend and main caregiver…although our family circle is very strong. As for Matthew himself…he has a wonderful personality, he speaks clearly,he spells and reads, he is religious and wants to be a priest. He is also ornery and a comic. He is very well known in the community and has touched so many hearts. I am so proud of him! Yes..it was a hard thing to understand in the beginning, but, I can see it very clearly now why God gave us Matthew. Thank you Lord for the strength….and yes…Thank you for Matthew.