Regina

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Note to Self

Don’t Panic! It’s all good and the future will be marvelous. Trying at times, but isn’t life trying in general?

You don’t want to go to a support group. It’s ok, you aren’t ready yet. Go when you’re ready, but don’t wait too long. It really is not a scary as you thought. You will learn so much from the other parents. You may not like large groups yet, but how about another parent or two that have a baby with Down syndrome around the same age as Nick. I think that would work well.

It’s a baby! Enjoy!!

It’s OK to take a day off from the many therapies and therapist that you welcome into your home. In fact…relax and take two days. Just playing with Nick will be a great learning experience for him (and you)! Don’t think that every move you make has to be with a “special” toy designed for a child with a disability. Or that it has to be a ‘teaching’ moment. It’s a baby! Enjoy!

Don’t look too far into the future. Let’s look at what we need to do right now and if you want, take a look at the next year or two. As Nick gets older and you get into a routine, looking ahead will definitely come naturally.

Everyone’s looking at my baby! Don’t people look at babies anyway? Smile at them and they will smile back. It’s not pity!

Go with your instinct! If you think something is not right, talk it out with the proper professional or call the Down syndrome center. A parent’s instinct is something that is invaluable.

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Christine

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Dear Self,

“Mommy, today is going to be awesome!”

“Why do you say that honey?”

(The expression on your daughter’s face indicates she thought that was a silly question.)

“Because it’s Thursday!”

Do you now your life would be filled with such positivity? Do you know your young child would teach you to greet each new day with a smile, model for you gentleness, and exemplify perseverance?

Maybe not yet…right now you are worried. You are worried that your daughter will be “bad.” You are worried that she won’t have friends. You are worried that she won’t learn. You are worried that you won’t be a good mother. After 12 years, I can tell you that these worries will very quickly turn into blessings. Let’s look at each of these fears that you are holding on to.

Are kids “bad?” No one is “good” all the time, and your daughter is just like everyone else in that regard. But she tries to obey and please others. She is kind, thoughtful, and respectful. Most importantly, she seems incapable of cruelty.

Friends? She has a very sweet bunch of friends who genuinely love her. She always seems to be planning the next sleepover and talking about the latest playground adventures. Her joyfulness makes others enjoy being around her.

Learning? Wow! This might be the area in which you will be the most surprised. She LOVES to learn! She is so much like her Daddy that way! Her favorite books to check out from the library are nonfiction. Presenting projects in front of her classmates is something she truly enjoys. (Don’t you wish you had that bravery when you were 12?) Others are always amazed by what she does. Hold fast to high expectations.

And you? You will be a fine mother. You will become a better mother…and a better person because of her. You are blessed.

God has a good plan for your daughter. Over the past 12 years, we’ve tried to make predications about what those plans may be. God is always revealing new facets of her giftedness. It is a joy to watch the ways He is growing her.

My advice to you now is to enjoy your daughter and learn from her.

Christine

Joan

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Dear Self:

 

I know that you find it hard to believe that, at 29 years old, you really would have a child with Down Syndrome.  All the apprehension that you feel right now will be turned into the greatest joy of your life.  Zachary is a kind, smart and well-adjusted young man.   It is the love you will show him and the fierceness which you will support him in his first years of life that will guide him to be the person he will become.  He will accomplish great things in the future!

 

Love,

Current Self

Heather

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Dear Self,

I know exactly what you are thinking. You are crushed. And stunned. And alternately scared and angry.

With Fern’s diagnosis, you feel like your dream of having a little girl has been ruined.  The words “Mother of a Child with Special Needs” feel heavy around your neck, and you wonder if you’ll ever feel like yourself again.  Will you still laugh easily and loud and often, as you are known to do?  Will your friends still think of you as a strong and capable mother? Will your husband still find you sexy? Will you still believe all things are possible? Will you ever truly be happy again?

And you worry about Fern. You don’t want to admit it, but you are wondering whether Fern might grow up to be ugly, or slow, or somehow lack personality.  You tell yourself it’s crazy to think such thoughts at a time like this, that it shouldn’t matter, that you should be able to rise above such trite concerns and focus on getting her out of the NICU. And yet, a hundred times a day you wonder, “Am I ever going to look at Fern and think she is beautiful the way I look at my boys and think they are beautiful?”

What you’re really asking is, “Will I be able to love Fern?”

I know you are thinking these things because I am you. It’s only been 20 months since the day Fern was born and I knew, just by looking at her, that she was not at all what I was expecting.  I was sickened by the news, absolutely certain that my life had taken a turn for the worse. I know that in a few minutes it will take everything you have to show up at Fern’s bedside and claim her as your own.  I remember making a promise to myself to “fake it ‘til I make it,” hiding my fear and shame from Fern and giving her only the best in my heart as she fought her way out of the NICU. I’m writing to assure you that you’re doing fine. Just keep going, keep showing up for Fern.

Not yet two years have passed, and so, so much has happened. All I can say is prepare to be amazed.

You are about to find out just how much your friends and family love you.  And you are going to be surprised by how much the community loves and accepts Fern for exactly who she is.  When you get home from the hospital, you are going to have a steady stream of visitors. Over 100 people are going to bring you food, diapers, gifts and good conversation. Even more will call, or email, or write to you on Facebook with messages of love and encouragement. You are going to fully appreciate what it means to be overwhelmed with gratitude.

Over the next several months, you are going to learn so much about who you want to be in the world, and you will gain a sense of purpose you never imagined would be yours.  It’s hard to explain to someone who is grieving as deeply as you are, but one day you are going to realize that almost nothing upsets you anymore. You will suddenly realize that, outside of loving the people you are lucky enough to have in your life, including Fern, very little truly matters.

Life is going to be so much more amazing than you can imagine. Your eyes are too puffy with tears to see this now, but I promise you that you will be happy again. In fact, before you even check out of the hospital you will surprise yourself by whistling a little tune while you walk. Really, you are a very resilient person. I know that is hardly a comfort in the early days, and you resent it when people say, “If anyone can do it, you can.”  It’s a stupid thing to say. But it is also true. You are the perfect mother for Fern, and she thrives as a result.

Soon, very soon, you are going to look at Fern and think, “My God, this child is gorgeous.” Not a day goes by that I don’t stop and wonder at the beauty and wit of our baby girl. She is funny, and engaging, and very pretty.  I’ll stop short of saying she’s an angel or a gift from heaven. I mean, she’s almost two after all and she’s quite the spit-fire. But her passion is just one more thing you are going to love about her.

And loving Fern will come easily. I don’t remember when you stopped faking it, but there’s absolutely nothing dishonest about your feelings for Fern now. You. Are. In. Love.

Listen, I’d love to know what my future self would say to me. I still grieve for the little girl I feel I lost almost two years ago. I’m still frustrated and disappointed that Fern has Down syndrome. And I still find myself wondering what it would be like to have a “normal” daughter. I don’t know how long these feelings will last, or if they will ever go away. But I promise you that these are not the feelings that get most of my energy.  Life, as they say, is good. I am happy. YOU are happy. Fern is a wonderful, loving daughter and being her mother is one of the most fulfilling things about your life. You only have to give it a little time.

With all the compassion of 20/20 hindsight,

Your Future Self

Jen

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Dear Self,

I know that you were worried about this baby having Hirschsprung’s disease because Jarod was born with it and it was such a scary time after he was born. I know that you just decided to trust God that this time, it would be ok.
And yet, here you are, having this baby 2 months early and you are scared again…and now you are hearing the words, “We believe your daughter may have Down Syndrome” and you feel blindsided.
They took her away so fast, you didn’t even get to hold her or REALLY see her. The nurses don’t seem to want to look you in the eye and everyone just seems to feel sorry for you…
You’ve had so much information thrown at you, you just can’t seem to process it all, you just know that something is very wrong and you can’t “fix it”.
You hear and see the other new mothers with their babies – holding them, feeding them, snuggling, taking them home, pso happy…and yet yours is in the NICU and you can’t even hold her or feed her and all you seem to do is cry and worry over so much that is unknown. And you feel so guilty over grieving for a little girl you’re now never going to meet. And you feel that God has left you on your own in this one…

I wish I could tell you it’s ok. That all those feelings are normal – and even  necessary – to move on.
I would tell you that, yes, even though you are scared right now, you are going to be blessed beyond measure! That when you finally get to bring your baby girl home and “normal” life begins, it is going to be an awesome life. You will learn to adapt and overcome.
You are going to meet so many wonderful families over the years  that are going through all that you are going through. You will realize that you and your family are not alone.

Your son is going to grow up being such a protector of his sister with so much patience and compassion in him. And your little girl will think he hangs the moon.

You are going to get to do so many things that you probably never would have even given a second thought to if Down Syndrome hadn’t touched your life. (Buddy Walks, Special Olympics, Polar Plunges, World Down Syndrome Days!!)

You will see your daughter wrap everyone she meets around her little finger. She will light up a room with her smile.
She will cheer, dance, bowl, play baseball, ride a bike, ride a horse, love music, and learn to read and write as she goes to school. She will laugh and joke and have friends. She will show others what it is like to truly love unconditionally, forgive easily, and to always try your best. She will never give up even when something is hard for her.
Yes, she will struggle – and so will you – but oh, how you will celebrate every milestone, big or small!  And you  will learn to appreciate the little things and never take anything for granted.

You will realize that you are stronger and more courageous than you ever thought you could be. Your family will be strong and stick together no matter what and you will realize that God is even bigger than you thought and He has walked with you every step of your journey. You will realize that God also gave you so many people to be a support system – to encourage and support you, to laugh, cry, and celebrate with you. He never left you on your own.

So, it’s ok if you are scared and confused right now. Just know that it will pass and in the future, you will look back at these days and realize there was a purpose, God knew exactly what he was doing when He gave you your precious angel. She completed your family and filled a hole in your heart that you didn’t even know needed filled. Her life will be beautiful. She is a miracle. And you are a better person because of her.

You…you will be just fine!

Love,
Me

Kathy and Jody

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Dear Kathy and Jody,

How are you doing?  It is hard to believe that 6 years ago you were blessed with the birth of your beautiful daughter. It seemed like yesterday when you were worried about her health and how you would be able to secure all those resources for her development. Little did you know that she would teach you more about life, hers and yours too!  In fact, what she taught you was to prepare you even more for the birth of her little sister who also has Down Syndrome. Together, these two wonderful children along with your two wonderful older children have shown you just how important everyday is. They taught you how to celebrate with more passion, including life’s milestones.

And you thought that having two little girls with Down Syndrome might take time away from your two older children. Well you were wrong. They love being a part of everything, including cheering loudly for their older sister and brother at basketball games, football games, softball games, and baseball games. What they bring to your lives can never be replaced. How surprised were you when you realized how hard they work to learn and thrive?  You shouldn’t be, that is who they are. Hard workers. And finally, look at what they have provided your two older children. What you’ll notice is your older children being kind, compassionate, caring, strong, protective, and interested in helping others to make a difference. Just imagine what they will do with their lives to make the world a better place. It sounds like you two have a pretty good life. Take care and cherish every day.

Sincerely,

Kathy and Jody

Sonya

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Dear Sonya,

Well it has been 3 short years since the diagnosis of Down’s Syndrome for baby Rachel and what a ride!  It all started on that rainy day when we had our 20 week sonogram.  Yes, you were 41 years old and knew there were risks but after that sonogram you were told the risk was greater due to an abnormality at Rachel’s heart.  Remember how Shawn, my hubby, rushed you out of that office as you cried.  Being the amazing salesman that your husband is, he told you the stats of how Rachel should be fine and that we were going to not overreact.  He truly had you believing that she was just fine, he is really good!  You know Shawn did that to calm your nerves since you had enough stress, Rachel was your 8th child and your oldest child already had special needs.

I remember telling people that Rachel was either going to be my most laid back child or something was wrong because she barely moved in the womb.  Little did you know about poor muscle tone.  Anyways, birth day arrived.  Rachel was induced and came quickly.  She felt very floppy when they handed her to me and Daddy followed Rachel to the warming bed.  He asked lots of questions about Downs Syndrome but the nurses pointed out all the things that were normal about Rachel and didn’t give us a hint.  About 24 hours later, the pediatrician came and confirmed that she was 95% sure that Rachel had Downs Syndrome.

We weren’t worried about loving Rachel, we already did!  We weren’t worried about taking care of her, we would just need to do some research on that.  Yet, I cried for 24 hours after this news.  I knew the Dr. was right because Rachel was just different than her other siblings.  I cried, mostly because I felt badly that Rachel would have to work harder than a normal child.  I knew the hard work that therapies and early intervention required and I didn’t want her to have to do it all.

Our first visit to the Down Syndrome Center was really such a pivotal visit.  Dr. Vellody took so much time with my husband and myself.  His sharing of personal life experience with Downs was just so touching.  He seemed to be the first professional that was so positive about Rachel.  We also got books from the library before we met so that we could learn and also read books to Rachel’s siblings to help them along.  I just have to say that the initial visit was therapeutic, enlightening and just such a comfort.  It truly was a God sent for us to have access to the office.  The work there is more than just a job, it is a ministry to families.

Here we are, Rachel is 3 1/2 yrs old.  Early intervention has ended and I don’t think we could have asked for a better team of therapists.  I guess the advice I would give you the day after Rachel’s birth would be, to not second guess God.  He knew that Rachel could handle all the work involved, he designed her to be exactly as she is.  Just Rachel!  Oh yeah, with this little disability.  Rachel has brought such joy to your family, her smile and enthusiasm melts everyones heart!  She surprises you with all that she is capable of, all that she understands.  She just fits perfectly in your family.  I guess I would say, don’t cry for Rachel.  Rachel will love life!  Instead, celebrate Rachel!  God entrusted you with this angel so just sit back and enjoy the ride.  There is a time for crying and a time for celebrating and this was a time for both!  Just enjoy Rachel’s sweet moments and cherish her.  Your life will never be the same and you wouldn’t want it any other way!!

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

Kelly

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Dear Self,

April 20th, 2014. That Morning and days in the hospital were such a blur to you. All you heard from your doctor’s mouth the day your baby was born was “Your daughter has signs that are consistent with Down syndrome.” I wish I were there to comfort you and tell you, it would be ok.  You cried yourself to sleep for nights, with your husband by your side as your rock. I still wish I could have reassured you that everything would be ok. You questioned, why us? I wish I was there to tell you, why not us! You were so worried about her future, you actually fixated yourself on her future for the next several weeks. I wish I could have told you not to worry and to take life day by day. You were so oblivious to the word Down syndrome. I wish I was there to educate you. I wish I was there to tell you about the wonderful community of Fathers/Mothers and their children with Down syndrome. You didn’t realize how common it really was. I wish I was able to tell that these families would help you, comfort you and answer any questions you needed. You were also so worried about acceptance from your family and friends. Your family and friends are so awesome, and accepted her Down syndrome from day one. They also just love her so much!  I wish I could have been there to tell you that Down syndrome is something that children accept more now than they did in the past, because they see a child, and not the diagnosis. There were many delays you didn’t know about, but I wish I could have told you about all the free therapies and help there is out there. You are strong and will be the best advocate for you daughter. Please remember to take life day by day, and that things will be ok.

From,

Current self (Kelly)

Brandon

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Dear Self,

If you remember, it was about a year ago when you got the phone call.  It was 5:08am and no good phone calls are made in the middle of the night.   You had been on cloud nine.  You were well under way of creating that perfect family you had always dreamed about.  You had one beautiful kiddo at home and another one on the way.   What happened after that phone call changed everything.

You wife was calling as she was leaving work and was on her way to the hospital.  She started to bleed and have cramps.  You guys were only 13 weeks pregnant and given that you are a physician, you knew to expect the worse.  Panicked, you found a babysitter for your daughter.  You couldn’t let a 15 month old see you this way.  You ran into the ER and you found your wife with that terrified look on her face.  Your world was falling apart.

Thump, thump, thump, thump . . .

They found the heart beat!  It was 150.  Your baby was fine.

Crisis averted . . . you thought.

Then the ultrsasound tech said it.

Cystic hygroma! Heart defect!

With those two findings your ‘doctor brain’ knew your baby had Down Syndrome.

Self, I want you to know that I forgive you.  I was mad at you for so long for things you thought and the places you let your mind wonder.   You were devastated.  But that was pure ignorance.  You had this idea of ‘perfect’  in your head, and when it didn’t turn out that way you got mad.  When you found out it was a boy you even thought, “we can’t use the ‘good’ name on him”.  You saw all of your hopes and dreams as you built them in your mind just crash down all around you in the blaze of one silly extra chromosome.

But as the dust settled you started to see life more clearly then you ever did.    Those were your hopes and dreams that had dissolved.  And you quickly realized that what was left was yours baby’s hopes and dreams, and those were the ones that truly mattered.

You got the life lesson earlier than most parents do.

Above all else a parent is to support their children and meet their needs.  That’s it, nothing else.

So what, your little champion has Down Syndrome.  He has needs and you have met them.   In fact, you and your wife are quite good at it! (If I don’t say so myself).  Keep up the great work.

Self, I am proud of you.  For the first time in your life you can look in the mirror and see a man, a real man.  You have grown up. The ignorance is gone!   Your life up until this point has been about you.  (Become a doctor, focus on you, and you will succeed.)  Your little champion and his silly extra chromosome have made you realize that life is about so much more.  You’ve found strength in community and you still can’t believe the support of the Down Syndrome community.  They get it.  Their priorities are in order.

I am so proud that you used the ‘good’ name on him.   It is perfect.  NOLAN; to the Irish, it means Champion.  He is all that and so much more.  Because of Nolan you are a better husband; a better father; and even a better doctor.  Because of Nolan you now appreciate true beauty and true success.  You realize that perfect might not be what you think it is; but if you get out of your own way and take a step back and look; you just might have perfect right in front of you.  Just keep your eyes open so you don’t miss it.

You saw a video on-line of a girl with Down Syndrome singing the John Legend song ‘All of Me’ and the lyrics really hit home.  Don’t ever forget them.

“All of Me, Loves All of You.  I Love your curves and all your edges, all your perfect imperfections.  You’re my end and my beginning.  Even when I lose I’m winning.”

The thing is, you never lost anything . . . except ignorance and selfishness.

Keep winning.

Keep dreaming.

Only this time dream WITH Nolan; not FOR Nolan.

Take everything a single step at a time.

Your medical brain will always be there and you can’t turn it off no matter how hard you try.  Just know that the Down Syndrome may delay some of those milestones and may even prevent him from reaching some of them . . . that’s ok.  Enjoy the ride instead of worrying about the destination.  Your wife says you are just taking the scenic route.   You haven’t tried that until Nolan.

Kinda nice huh?