Diagnosis Day

From Nancy, describing life with her daughter Gabby and her daughter’s fun personality:

I would say so many things. “She will breastfeed. Just be patient. She will be home from open heart surgery in three days, and at some point, you will barely think of it. Personality — she will be the easiest of all the kids. She will be so funny. She’ll have all of you in stitches laughing. She will love music, and dancing, and karate. You will peek in on her every night before you go to bed and be so thankful she is here. And every night she’ll make her way to your bed while you are sleeping, so the first thing you see in the morning is her sweet little face. She will be an original person, with her own personality: energetic, engaging, really excited about all of the many experiences life has to offer. You will love her – adore her- as much as the other kids. This feeling – this intense time after diagnosis – is temporary. This feeling will fade. It is not part of your present.”

From Megan, talking about the joy her daughter brings:

“Joy returns. And she will be beautiful. And capture your heart. And not need a feeding tube after GI surgery. And be a miracle.

She will make you a better person.”

From Missy, explaining all her fears and why she was wrong:

I’d have to have a good talking to myself to set things straight!

“You worry she will be a burden.
You are wrong – she is going to be funny, fun, and a joy.

You think this will be difficult for the other two kids.
You are wrong – they will be better, more compassionate people because of her. She will be their sister – they will fight and make-up just like the other girls. She will also unify them – they both have a favorite sister, and she is their favorite.

You think you might not be able to handle this, that mom’s of kids with Down syndrome are ‘special’ themselves somehow in a way you aren’t
You are wrong – you have what you need, and those moms aren’t super moms either.

You think you might have to quit your job and totally change your life.
You are wrong – your life will be pretty much the same – busier and harder that first year, but you’ll adjust just fine to your new normal.

You think maybe it would be better if you miscarried her – then you think you are a terrible mother for thinking that.
You are wrong. That would not be better. And you aren’t a terrible mother, just ignorant and really, really, really afraid. Forgive yourself and move on.

You think you are all alone.
You are wrong – you will have more friends and more Down syndrome family than you ever imagined. And they will be amazing!

You think having a child with intellectually disability will be terribly hard for you to adjust to and that seeing her struggle will make you sad.
You are wrong – you will learn that the value and worth a child is much richer and deeper than that, and that that sometimes what is being measured isn’t the most important thing. She will inspire you with her strength.

You think that she will never enjoy a book or basic literacy, and you feel sorry for her.
You are wrong. She will know her letters, colors and shapes when she is three. Then you will know she will read someday.

You think she will never be able to communicate with you.
You are wrong – she will learn sign language, with your assistance, and she will learn to talk.

You think you will never stop crying.
You are wrong – every tear you shed will be rewarded with 30 laughs that she inspires – on purpose – within the first 2 years.

You think having a child with Down syndrome will ruin your marriage.
You are wrong – you married him for a reason – he will not miss a step in loving her, and he will never see any meaningful differences in her.

You think being the 1 in the 1 in 16 odds will be the unlucky thing to happen.
You are wrong – you are lucky.”

From Jennifer, covering a range of concerns and what she learned:

There are a lot of things I wish I could say.

“It’s not the end of the world. He won’t look like Quasimoto. Don’t worry about “what if.” It’s okay to feel the way you do. It’s okay to hurt. Don’t feel guilty. Meredith will love him no matter what. You will adjust. You don’t have to make excuses to anyone about how you feel or what your intentions are. He’ll be okay.

You won’t feel about him the way you felt about M. It will be a different love, but what you feel will be just as intense and just as passionate.

Your marriage will survive. You’ll even enjoy sex & intimacy again.

Rob (husband) will love him just as much as any son he “would’ve” had if not more.

The surgeon is fabulous & he will make it through his heart surgery like a rock star!

I had so many thoughts swirling around. I would’ve loved to have been able to just sit back and enjoy the pregnancy.”

From Pam, describing what she would say to her past self about the teen and adult years with her son:

If I could travel back in time…

“Those early days you read so much about Down syndrome, but he was writing his own story from the start. That extra chromosome is one of his own, not one that is shared by any other baby with Down syndrome. Maybe some of that is what makes him such a whiz at figuring out electronic gadgets – I know you don’t see that one coming.
His baby years will fly by just as fast as his sister’s did – get those cuddles in before he gets too interested in life outside your arms. You think you could not be prouder of his sister or him – but wait until you know them as adults! They are amazing.

Don’t worry too much about ignorant people — there are so many wonderful ones he will bring into your life, you will eventually just feel pity for the duds.

Just like every barber will tell you he needs a haircut, those who make their living providing segregated programs will tell you he needs their brand of ‘special’ education. Don’t take it personally, they are just trying to support their families and protect the status quo. He will find great teachers and fantastic classmates wherever he goes.
Stay connected with your mainstream friends — they will be strong advocates and supporters for your family, and they will appreciate your friendship through the best and worst times. I don’t know if I would tell you he develops diabetes when he is seven. You will admire how well he manages blood tests and insulin shots. He has the auto-immune kind; his body stopped making insulin. He continues to make good food choices and stays active, so he stays strong and healthy, but he has problems with unexpected lows. He isn’t supposed to lose skills after seizures brought on by hypoglycemia, but has to relearn cursive writing, math facts, tae kwon do forms, and a few other things several times. You will feel like a real complainer when all he says is “Here we go again” and starts over. Don’t worry about that. It’s a mom thing.
I would tell myself to suggest his speech therapists use his lines in acting class or plays years earlier than I did. It’s vocational education when his goal is to be an actor. Getting that into an IEP may cause a stir but they don’t see his future as he sees it. Guess what? He’s right and they are wrong.
He can do different chores at younger ages than you think – his sister has had him ‘helping out’ with hers for years and that’s why you think she has taken more care doing them.
I wish I could tell you that his first girlfriend will get angry with him if he keeps quoting Dr. Phil to her — just let them break up the day she makes disrespectful comments about Star Trek and WWE wrestling. His next girlfriend will be so sweet and kind to him!
He will spend just as much time in tux rental shops as your friend’s twin boys; start saving up for that now. He’s a good dancer and will teach any girl or woman who he asks to dance every step he learned in dance class. He will challenge any other guy to a hip hop competition dance-off. He learned those moves from mainstream friends at his high school, and, of course, developed more practicing what he sees on video and at dance clubs.
He will have a natural swing in golf and love tennis, baseball, and soccer. The evaluations he has throughout his schooling will show that he does not have the balance, motor planning, strength, eye hand coordination, and a few other skills to be good at all that he accomplishes in spite of those scores.
He will lose interest in swimming when as an adult he can float only an inch below the surface of the water, but he learns to stand on his hands in the pool when his sister and her best friend decided to learn that trick at age 6 or 7. I would tell myself to remember to breathe when they are underwater. They swim like fishes.
You will be as amazed by what he accomplishes in community college programs as you were when he was in mainstream kindergarten. He will always make use of any opportunities you find for him in ways you can’t imagine. Raise your expectations early and often but know you may never catch up to him. He’s a firecracker.

You are having a wonderful life. Enjoy it!”

From Leah, talking about what she’s learned just 3 months after her daughter’s birth:

“It’s only 3 months after her birth and diagnosis, so I’m sure that my response will be so different at time goes by.

But so far I would tell myself that I am blessed beyond belief with this wonderful child. She is the sweetest, most incredible gift, and she will amaze me again and again with her strength. She’ll come out of open heart surgery with flying colors, and be off her feeding tube and breastfeeding (for the first time!) within a week.

Everyone loves her beyond belief, and my life will be so much better for having her in it.”

From Cindie, reflecting on the early days with her firstborn son and having more children:

“It’s okay to feel sad, even mad. Your going to be happy again, so happy.

Your marriage will survive, and be stronger for everything your going through — just keep up communication.

Your going to love your son so much more than you realize, and you will both have more children later on so TJ will not be your only one. Your other chilren will love their big brother — and learn patience and gentleness through him .

He may get very behind and be slow meeting goals, but each one he meets will be a celebration.

Everyday your going to have something about your son to be thankful for, and everyday your going to celebrate how lucky you are to have him.”

From Caroline, describing how her son opened up her world:

“It’s not as bad as it seems! He is the same baby you have loved and waited for all this time!
It’s okay to feel angry, it’s okay to feel sad. You will get trough this and soon you’ll be feeling better!
This fact is going to make you a much better person.
You’re going to meet some amazing people and discover a new world out there that you didn’t know it existed. And you’re going to love it!”

From Roxana, explaining her change in perspective 6 months after the birth of her daughter:

It has been a little bit over 6 months and things have changed so much, so I would say: “It’s okay to cry and grieve, but she will be okay. She will be loved by everyone in your family, she is ‘your’ baby who you will love over the limits, and when she smiles at you, she will make you feel so amazing and fill your heart with happiness. Every single accomplishment will make you be so proud to be her mother. You are so lucky to have her!”

From Dawn, talking about how she would tell herself that the diagnosis phase can be painful, but her life will ultimately be beautiful:

“This is not the end. As bad as it may hurt now, and you feel like you’re spinning out of control and that your life as you know it is over, there is another side that’s even better than you could have ever imagined. Your marriage will be fine; your older child will be fine; and she will see her little sister for exactly what she is: a beautiful little girl. You will see a change in your family and gain friends you otherwise would have never known. You will become a stronger person. Say goodbye to that quiet, subdued mother who goes along with the flow.

It will get better, and you will experience a love like nothing else you’ve ever experienced before. She will be beautiful, and she will earn a smile from every person she happens to come in contact with.

Your feelings are okay. Have them, experience them, and then move on. It’s okay to be mad. It’s okay to be sad. It’s okay to feel like some mistake was made.

As painful as this is, it will make you a stronger person.”

From Heather, describing how she would sit down and comfort herself as a scared pregnant woman:

If I could go back I’d sit down with that scared pregnant woman and I would listen to all she had to say. I’d pass her as many tissues as she needed. And when she was quiet I would remind her of every challenge she had ever faced and how with God’s strength, she succeeded. And if she could do all that then she could surely do this (parenting a child with Down syndrome) with equal success. I would remind her of what she already knows … that no pain lasts forever and that even though she may be hurting unbearably right now, just stay the course. Don’t skip over this part. The corner will turn soon enough and the end result will be worth it.

And then I would smile at that scared pregnant woman, and I would let her in on a little secret … this little baby girl will be a musician like her parents, have hair like her mother, and have the laid back personality of her father. In other words, this little girl will be just. like. you.

From Sasha, explaining how her faith gave her strength to accept the diagnosis and work through her fears:

“It’s okay to cry, crying can be healing. It’s okay to feel a little sad, even though you know you’re okay. Your baby will be just as adorable as your first three ,and you’ll enjoy dressing her up and putting bows in her hair. Others will find her adorable and comment all the time. Your hubby will work through it and by the time she’s born, he’ll accept her and love her just like the others! (I wasn’t sure on his feelings, and he doesn’t express them)

I’m just so grateful that I have God to talk to — I completely depended on him through that initally “shock” of finding out. He provided great comfort to me … and most important He gave me the fourth child, a second girl, that I always wanted! I am blessed!”

From Diana, talking about her fears as an “older” mother and how she discovered a beautiful and happy life with her daughter:

“She will be so beautiful. Make space on the wall, because you’ll definitely want to hang her pictures up!

Nobody is going to look at you and think, “Look at that old hag. That is why she has a baby with Down syndrome.” They will just look at her and see an adorable baby, and think how lucky her mom is.

Brittany and Nicholas’ lives will not be ruined. They are just going to have a new baby sister to love.

You will be happy again someday very soon, and Kayleigh will be one of the major contributors to that happiness.

Mike will get over it. Kayleigh will be Dady’s girl just like Brittany, maybe even more so, if that’s even possible.

She will not die in utero, or during delivery, or during or after her heart surgery, so stop obsessing!

After her heart surgery, she will be so much less fragile, and she will turn out to be one bad-ass little girl! You will laugh so much, because she will be so feisty!

God didn’t punish you for being greedy and wanting a third child. You didn’t tempt fate, and you weren’t wrong to try, just because you were 40. God decided to do something really nice for you. He gave you a precious gift, a beautiful new soul that you will love beyond measure, and one that the entire family will fall in love with as well. And all you had to do was try one time!”

From Lori, describing how community was a tremendous source of strength for her after her son was born:

“The birth of my son was a joyous occasion. He was born exactly as he was intended to be, perfect in every way. If I had anxiety, it was about how other people would treat him, and that was erased almost immediately as stranger after stranger has stopped to comment what a beautiful child he is. We are not on this journey alone; we share this path with our families, friends and the special needs community, which have been generous, welcoming and supportive. I am blessed to have this beautiful, shining light in my life, and he continues to amaze me each day.

From Sarah, explaining that it’s important to keep the big picture in mind and that life with Down syndrome is more normal than she expected:

“I would tell myself that it will be okay. No, not okay. It will be so much better than okay. It will be wonderful and challenging, just as raising any child is wonderful and challenging. And I would tell myself that raising Adam won’t be all that different, only the details will change. You will still go to parent teacher conferences and doctor appointments. You will still teach safety and independence. You will still read and play together. You just might do these things at a slightly different time or in a slightly different way. But the big picture is not so different after all.”

From Ingrid, talking about how her 10-month-old has defied her initial expectations but that it was okay to feel sorrow when she first received the diagnosis:

“It is okay to feel scared, scared of the uncertainty that comes with the diagnosis; especially for me, who likes to “plan” everything. It is okay to feel sorrow … for the plan you thought you had has changed. It is okay to worry for what medical issues will come about. Eventually, as you learn more about Down Syndrome and you read other people’s experiences, you understand that this is not a “death sentence.”

You begin to realize that Alex will be like any other baby … that he needs love, nurturing, and care — just like his sister did. He may surprise you later on … he has already. He is his own individual and the “statistics” you read about may not have any relevance to him. At 10 months, he has been lucky to be very healthy and meeting all the “milestones” expected … who could have predicted that?

Day 2 of his life we thought he would never eat with a tube….he was breastfeeding well just after 2 months! Now, at 10 months, he starting to crawl and has began potty training. Yes, for 2 months I have not changed a poopy diaper. Not even my “typical” kid was able to do that He has beaten the “statistics” now, and I suspect he will beat them again and again. Our main attitude is to encourage his abilities and not over emphasize what others may see as a disability. Alex brings me joy beyond what I can express. We have been blessed.”

From Kim, explaining how life with 6-month old Kaylen Grace is both ordinary and wonderful and how a prenatal diagnosis was difficult but helped her prepare:

“She will not die before birth, during labor, or after delivery. She will have a joyous entrance into the world.

You’re having a baby – a new, wonderful life is growing inside you. You will not deliver a syndrome loaded down with medical problems. She is your child, and she is adorable.

Instead of that horrible hush of “something’s wrong” at her delivery, you will know her diagnosis and have some peace about it. The nurses will sing Happy Birthday to her (remember to get the video camera out, dangit!).

Her smile will melt your heart more than the smiles of the other children did. You will cry and wonder how it’s possible to love someone so much.

She will breastfeed. It will take multiple cries for help to multiple lactation consultants, but you will find a nipple shield and she will nurse.

The older children will adore her. You will have to make them take turns holding her. They will be her biggest advocates.

Your husband will not just “tolerate” her. She will have him wrapped around her little, pudgy pinkie finger before she’s even born. He will not think you’re “defective” for bearing a child with a disability. Your marriage will be stronger for it.

She will get off the oxygen. It was just high altitude, there’s nothing medically wrong – it has nothing to do with Down syndrome. You will cry and cover her face with kisses the first time you get to see her chubby cheeks without her tubes.

God will heal the hole in her heart before birth.

She will be born at just the right time.

People at the grocery store will smile at her cuteness instead of asking if something is wrong.

Your life will be amazingly ordinary.

Your life will not be overrun with medical appointments.

Your finances will not be overwhelmed.

God will lighten your daycare schedule so you can take on your most important job yet – mommy to Kaylen. You will be thankful every day for the opportunity to spend every day with her.

Forgive yourself for thinking that it would be a worse tragedy if she were “normal” and miscarried due to the amnio, than if she had Down syndrome and miscarried. You were scared because off all you didn’t know then. You’re a good mom and you won’t be able to imagine your life without her.

You will get to a point where you just see the Down syndrome as just part of the pattern God used to knit her together instead of something “wrong”.

She will be beautiful.

There are many other families of children with Down syndrome in town. You will not be the only one.

God will bring you an amazing support system – a perinatologist who has a sister with Down syndrome, a church who feels a mission to reach out to people with all kinds of disabilities, family members who adore her, an online friend who happens to also have a daughter with Down syndrome and live just a few hours away, an Early Intervention educator who is amazing, and a new Down syndrome clinic just a couple of hours away with national experts will be opened a month after she’s born.

Just sit and hold her without guilt. The housekeeping can wait. She’ll grow so amazingly fast.

She’ll be your favorite. But don’t tell the other kids.

God’s plan is so much more beautiful than your former plan for your life. Kaylen will bring colors, music, textures, and joy to your life that you never even imagined possible. It’s a different journey than what you had envisioned for yourself, but it’s so much better (and I’m not just saying that because I’m making the best of a bad situation that I’ve been stuck with). You will understand and your heart will overflow.

When you look at her, you will see your daughter first, not her diagnosis. There will be some days when you don’t even see it or think about Down syndrome.

You have been truly blessed.”

From Lisa, describing how her daughter is an individual and loved as part of their family:

“You are worried she will ‘look’ like she has DS because you don’t know any better. Don’t be, you will not see Down syndrome when you look at your baby – you will see the sun and the moon. She will look exactly like her daddy, sing off key like her mommy, she’ll wave to every person she meets, and they will love it. She will have a smile that lights up a room. No child could be loved more and love you more – and that is what is important.

From Dolores, talking about how Down syndrome redefined her life in wonderful ways and opened up new possibilities:

In a short time, you will wonder what you worried about. Down syndrome may redefine your life, yes, but in ways that you never dreamed of. Once you open your heart, you will find that it opens for more than just your own dear child, but to all kinds of possibilities, to a more blessed life, and to other people.

You will find a network of kindness that is full of laughter and surprises. You will find that you have a child who means something much more than a child with developmental disabilities.

From Heather, describing the fear she felt when first learning about the diagnosis and the joy she has experienced with her son since his birth:

I was sitting in church today volunteering at vacation bible school and I remembered that it was last year at this time I was given 1:12 odds that my baby would have Down syndrome.

The perinatologists were putting on the pressure for an amnio. They were trying to scare me with all kinds of things. I was terrified of losing my baby. I was terrified of him being born still. I was terrified of his having Down syndrome. I was terrified that a child with special needs would rip apart my family. I was terrified.

I spent that week at vacation bible school in tears, all the time. It was horrible.

And now my baby is happily playing on the floor, rolling all over, trying to get onto all fours. He has Down syndrome and a smile the melts hearts. He is such an angel and is adored by his siblings. God has surely blessed me.

I would love to go back in time and sit next to my pregnant self sobbing in the pew, begging God to help me get through. I’d love to lean over and whisper, “It’s going to be fine. It’s going to be great. Down syndrome is nothing to be scared of. He will be perfect. Just as God made him.”

From Carey, talking about how her 2-year-old daughter with Down syndrome confirms her faith in God:

“She is exactly who God intended her to be. God makes no mistakes. He knows our family is yearning for something more, something greater than all of us can imagine. She will strengthen your marriage. She will make your children better little people that are accepting and welcoming to all differences of others. She will change the way people
look at others with different abilities. She will be the change in your life you never knew you needed.”

From Heather, describing the importance of finding support networks:

I’d tell myself to please, please, please find safe people with whom you can really share your heart. Online or preferably in real life. The journey through this time requires connection not isolation.

From Holly, explaining that her son with Down syndrome changed her life in meaningful ways:

“You don’t know it right now, but your life has just changed in the best and greatest way possible!

The birth of your son is bringing you, practically on a silver platter, your calling in all ways that matter: as a mother, as a professional, as an advocate, as a believer, as a person.

Cherish this moment because there are not many people who know the exact moment that their mission in life begins. You are lucky to have it.”

From Julie, saying what she would like to go back and tell herself after receiving inaccurate and outdated information from her medical provider:

“The doctor standing there, trying to stop you from loving your baby is wrong.  This is not your fault! Go over there and tell him how wrong he is, she will walk, she will talk, and will not be a cabbage for the rest of her life. She will be a beautiful young lady, and she will shine hearts into the people she meets. Hug her tightly, she needs your love, acceptance, courage and encouragement! She will be the light of your life. She will make the world a better place.”

From Megan, describing the importance of connecting with other families and finding the humor:

“Talk to other special needs families, find the humor, tell your story as often as possible.
This child will change the course of your life, your motivation, your career. You will be a better, more involved person because of this child. She will blow your mind every chance she gets.”

From Kecia, talking about she wishes she had spent more time enjoying her baby rather than worrying:

“Don’t waste precious time feeling sorry for myself and being mad at the world. Enjoy every moment because before you know it you will look back and wish that little man were a baby again and it went so fast you feel like you missed it. Every situation is a learning experience don’t miss the lesson but have fun.”

From Denise, describing how her son amazed her with his charm and compassion after he was born:

“He will flip your life upside down, which in fact is the right side up! He will be everything you hoped he would be and more. He can light up a room with just a smile. He’s so charismatic — and those eyes, those beautiful blue eyes! He will be so loving, so caring, so compassionate and empathetic to all that he meets. He will stun and amaze you over and over again. And the love you will have for him will be so strong that others will see it, and they will stop you just to say “thanks.”

From Steph, saying that life won’t always be easy when caring for a child with special needs, but her child has been a joy:

“Your emotions are real. Allow yourself to feel them and move forward.

It will be okay. You will be the parent this child needs. This child will be the child you need and love – like your heart has never loved before. He or she will be the joy of your life.

I don’t want to leave you with the idea that it will all be peaches and cream. There will be tough times. There will be doubts and fears. You may fight with people. You will have obstacles. Some unfounded and some real. But it will be okay.

I have 6 children. My youngest is the one with DS. She has only made my family a better group of people.”

From Shannon, explaining that the unknown is always scary, but life got better after she met her child:

“You are going to be okay. I know you don’t believe me – but you will. You don’t need to be devastated or scared. Your life is going to change – but it’s for the better. One day you will wonder why you shed so many tears, were so anxious and scared. You will soon meet one of the most fabulous people ever. But in the meantime – give yourself a break – it’s okay to be scared. The unknown is always scary.”

From Melissa, describing how she would tell herself that her child strengthened her faith and made their family complete:

“She will survive. Those fears and doubts about her heart, while justified, will fade with time, and she will become the warm, fat, loving and cuddly baby you dreamed about.

I would tell myself that while patience is not your virtue, you will find peace in your faith in God and your faith will grow immeasurably during the next year. The friends you will cultivate will see you, your family, and your beautiful daughter for who you are on the inside and will acknowledge the tenderness and warmth of your soul.

Your daughter and your journey will make a difference in the lives of those around you and even those you don’t know. By writing about your struggles and your faith through those struggles, you will help change the way others see their children and help make life better for those families.

You daughter with all of her medical issues will become part of the family and not the center of it. Life will change and be more complete than it was before. That person who you felt was missing will be there now and your ability to love will increase exponentially. Your other children will learn acceptance in ways that you could never have taught them without her, and they will love her just as passionately as you do.

Your marriage will become stronger and your family unit, more united. You will still have struggles and conflict, but life will be better. You will be able to stay in the moment so much more.

You will love this child and will cherish all the “Ah-ha” moments because they will be so hard fought for. That first smile will bring you to tears, and those hands when searching for your face, will feel like velvet when she turns your head towards her.

Overall, the struggle to get her here will be more than worth it and the life lessons you learn along the way, while tough, will make you a better person and an even more awesome mom. Enjoy the moments and seize the day!”

From Stacey, saying that her 2-year-old daughter is a joy even though she initially grieved the child she thought she was going to have:

“I wish something had shown up on the pre-screen, just so I would have been prepared. The first 6 momtjs were a blur, but the best advice I can give is to grieve the child you thought you were going to have and then get on with it! Now 2 yrs old, she is the best thing that has happened to me. She made me take a look at how strong I can be and appreciate all the little things.

The first year is the hardest, but she will sit up, crawl, walk, learn sign language … everything! She will mimic everything you do … I mean absolutely everything! She will be a absolute joy and always have a smile for you … and every other stranger she sees. Her big brother will love her and always think she is perfect just the way she is! Your life will change, but in the best way you could ever imagine. You will meet many great new friends that you never would have known before. You are not alone, just reach out and you will be surprised! There are still days when the future is a big question mark, but we take one day at a time and consider ourselves blessed!”