A Letter To My Son With Down Syndrome The Night Before His First Day Of Kindergarten

Noah, wow! I can’t believe you start your first day of elementary school tomorrow. I just finished putting you to bed and wanted to share a few things with you before your big day.

child down syndrome first day of school

The night before his first day of kindergarten

First, you need to know I’m a little scared. It takes a lot of trust in other people (and God) to let other people be responsible for you all day. Sure you’ve been in preschool before, but this is different. This is a big elementary school! At dinner tonight I thought about how the playground at your new school isn’t fenced in all the way, and you like to run away sometimes. I worry about the teacher not paying attention and you running to the street and getting hit by a car, or kidnapped. I worry about other kids making fun of you, or wondering why you’re still in diapers, or can’t talk as well as they probably can (yet!) I worry about you needing help with your lunch box, or name tag, or backpack, or shoes, or a million other things.

I wonder if you’re ready for this.

You are.

I’ve seen you cross so many milestones. I remember the moment you were born. I remember bringing you home from the hospital for the first time. The remember all of those physical therapy sessions on the treadmill to help you learn to walk. I remember when you sat up for the first time. I remember when you pulled yourself up for the first time. When you crawled for the first time. When you took your first steps, and countless other milestones. Tomorrow is just another one of those milestones for you, and it’s a big one.

I love you so much. So much. And I’m so proud to be your dad, more than you will probably ever know. I wouldn’t change one chromosome about you. From the second I lied eyes on you at the hospital I’ve been your biggest fan (your mom is a close 2nd…!) You’ve crushed so many of your milestones, you’ve worked as hard as any little boy I’ve ever know, and I know you will do well as you start kindergarten!

As you start the first day of what will be a long journey of your education I want to share a few thoughts with you. These thoughts not only apply for tomorrow, but for the rest of your life.

  1. You were created by God, in the Image of God, to do amazing things! Genesis 1:27 says that God made all people (including you) in His image. Psalm 139:13 says that God knitted you in your mother’s womb. And Ephesians 2:10 says that God created you to do good works! These are some of the most important things I can tell you. You were made specifically by the God of the universe and He loves and cares for you greatly. If you forget everything else, remember this. God loves you greatly, son.
  2. God is control. Nothing in this world is a surprise to God. He runs the show, and He runs it well. Even when things happen in life that we don’t understand (and the odds are they will) He understands. God doesn’t tell us we will always understand everything, but He does tell us to trust Him in everything that happens. This is a lesson that you’ll have to learn over the course of your life, but trust me son, You can trust God. He knows what He’s doing.
  3. Your parents love you greatly. We aren’t perfect parents by any means, but man, oh man, do we love you. We’re crazy about you.
  4. People can be mean. Don’t let this surprise you. And as much as you can, don’t let it bother you. This is really hard to do, especially when your young. But you’ve got to learn to shake the haters off, and there will be haters.
  5. Extend grace to people as much as you can. People are probably going to say things they don’t mean. People are probably going to make comments because they’ve never meet anyone with Down syndrome before. Some of these comments may be mean, some of them may be made out of ignorance. As hard as it can be, try to give people mountains and mountain of grace. (Even the mean people.)
  6. A lot of people have never met anyone with Down syndrome. You look different to others who do not have Down syndrome. You sound different than others you don’t have Down syndrome. It’s ok. You need to let people know it’s okay to ask questions. Let people know they don’t have to walk on egg shells around you. Give them the freedom to talk with you about Down syndrome. People can be afraid of what they don’t know, so help them to get to know you. (This will be hard to do tomorrow since you’re only in kindergarten, but I wanted to put this one on the list.)
  7. God has given you a personality that gives others joy. I love watching you give high-fives to others, or sing, or dance. You’re a fun little boy. I love the joy that you have. When people get around you, you help bring out their joy. That’s awesome. Keep doing that!
  8. Your mom and dad worry about you…your dad way more than your mom! 🙂 You’re our little boy, and so we worry about you. We worry about how other people will treat you. Or you doing something that you don’t know what your doing is unsafe (like running to the street when no one is watching.) We have to keep going back to number 2 on this list and remembering that God is in control and we can trust Him. He loves you even more than we do, and we trust Him. (But know, we’re still going to worry.)
  9. I’m proud of you. Like crazy, over the top, can’t even put it in words, proud.
  10. You have to keep your shoes on in school. Please.
  11. God is in control. He loves you. And you can trust Him.
  12. I’m only a phone call away. Seriously, if you want to come home, call me! I know, I probably shouldn’t say this, but I am. And I mean it. 🙂
  13. I’m going to be eating a lot of lunches with you. Get ready. (I also hope you’ll let me do that when it’s not so cool to have your dad come eat lunch with you.)
  14. Oh, and you rocked those Chuck Taylor’s today!

shopping for chuck taylors child with down syndrome

I’m sure I could think of many other things to share with you, but these are some of the biggies. I love you son. A lot. I have this strange mix of fear, excitement, and love going on inside me right now, but I can sleep well tonight knowing that God holds the whole world in His hands, and that includes you.

I can’t wait to see what the future holds for you. You’re a special kid, Noah, and not just because you were born with Down syndrome. I know that God created you to do something amazing with your life, and I’m thankful I have a front row seat to watch it all unfold.

Sleep well tonight “little” man. You’ve got a big day tomorrow. (And so do I.)

Love,

Your Dad

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About Rick Smith

Hi, I'm Noah's Dad and I'm passionate about giving the world a window into our life as we raise our son who was born with Down syndrome. I also enjoy connecting with other families, so let's stay connected.

Comments

  1. Pauline Johnson says

    Noah is so blessed to have a father and mother who love him with such a LOVE! He will do just fine daddy…. God is truly watching over him. Your letter brought tears… It inspires me to show my love to my children more often. Thank you for that. Oh and I’m learning all about that extra chromosome. Our baby girl is 11 months old. We are so, so proud of her also!

  2. Praying for Noah and his Dad! Grateful for Noah’s Mom :).

  3. thanks great dad for very heart touching thoughts about your wonderful son i am very impressed this i pray for noah .

  4. Lacie Gaines says

    Go get Noah! You are and inspiration to us ! Thanks for your openness Dad! Our son Luke is 4 months and we (me mostly) worry about just about everything for him thank you for reminding God is in control- even over my heart on the outside!

  5. Charlie Layton says

    I Have Tears falling. I’m bawling here. Noah You Are In My Heart, In My Thoughts, and In My Prayers. I Pray You Have A Funfilled Amazing First Day Of Kindergarten Tomorrow Champ. May God Bless You Noah and Keep You In His Ever Loving Grace And Ever Strong Embrace.

  6. Katy McKuzes says

    I love reading what you have to say about Noah. It is so inspiring. As a parent to 2 special needs children, I know how hard some of these milestones can be with our children. But you are so amazing with Noah!

  7. shari pettry says

    Noah, is such an amazing boy, he has inspired the world , to others with Downs ~ he has a father and mother, that has opened so many doors, for so many achievements~the world has become such a better place because of you, Rick & Abby. Children, once forgotten, are now becoming~ Prom kings & Queens, driving, collage , jobs, Models, learning to be independent. My hat goes off to you Rick & Abby for you have opened a world, where acceptance and Love has made such a difference, for not only your son, Noah, but many other. God Bless you always, for the gift you have given~ acceptance, Love and futures, for all children, who will one day be successful,independent adults. Your family is such an inspiration to the world, to have dreams and to be able to achieve them, keep on being the parents you are and the voices you are. The greatest thing you have taught people is , all children deserve to be treated equally, loved and given respect.

  8. I had tears running all through as I read your letter to little nan Noah. You exude so much joy that encourages me to carry on with life. My little mushy was qalso born with DS but am great-uncle to God for all.
    Congratz Noah. Have a good day and a fulfilled destiny. Love u.

    • Grace Amos-Atuboyedia says

      Am so glad to see your little cutie and know my son has a brother who looks like him. I live in Nigeria and have had to answer so many questions about his looks but when I see your son i know my son will turn out handsome like the little man in the picture.

  9. Prayers for Noah as he takes this big step and prayers for all of you sometimes it’s just hard being a parent and letting go but hanging on tight as well . May Noah be loved, protected and appreciated in his new shool.

  10. Diane Manley says

    aweee bless i have been following Noahs story for a long time, and this has brought happy tears to my eyes, and what a great mum and dad yous both are and an noahs lil brother! may all noahs hopes and dreams come to him . have fun lil man . thinking of you all .
    all my thoughts and love from Diane ….. Australia xx

  11. Carlos Davila says

    Wow, you go and rock them, Noah!!! Gotta tell you, I am crying my heart out. A month ago, we were told that our baby Carlos has Down Syndrome; and our whole world changed. He will be born in November. We just saw a sonogram and he was sticking his tongue out, like making funny faces. I am so happy for Noah and know he will be fine. Our oldest son, Danny, started pre-kinder two weeks ago; and we had many of the same concerns. We as parents worry for our children with or without an extra chromosome. This is the first time I write regarding our little Carlos. I want to send out a big hug to you, your family and Noah! All is good.
    Carlos

    • Erin Kelly says

      Congratulations on your new baby! The DS community is so supportive and loving. Read lots of blogs and join some Facebook groups! They will help you so much as you prepare. You will see that these kids can do amazing things. Your Baby Carlos is going to change your world for the BETTER! He will be an amazing light as my baby boy Jack is too! Big hugs to you and your family!

      • Carlos Davila says

        Wow Erin, many thanks for your kind words and congratulations. Support is greatly appreciated. My wife is almost 27 weeks in; and we are dealing with a roller coaster of emotions. Following Noah’s FB page has been great. You have a beautiful baby boy! We wish Jack all the best. I will be sure to pass your message to my wife. Again, many thanks…wishing you and your family the best…Carlos

  12. Ellen Sefransky says

    Thanks Rick! I can relate! One thing I have started doing was praying for teachers, bus drivers, principals, and coaches. This came to my attention because of what you mentioned- the trusting! So far so good, I have had no issues with the adults in my son’s life. (He’s 4) I pray, but I can’t help but have a very watchful eye.
    Thanks again for sharing!
    Ellen

    • Brenda Norton says

      How awesome.
      Prayer is my medication for pain, hurt, fear, and everything thing that may arise in any day of my life. Our daughter was born with facial features that resembled DS. physically challenged in both arms, hands, legs, and all 10 fingers. Legs were completely rotated as well as folded upward and her feet, also misshaped , laid on her shoulders. The only thing she could move was her head. She could not move anything else nor could we. She looked like half of a baby.
      When we were finally able to take her out, people staired and whispered. Some even had the gall and stupidity to follow us around trying to get a better look at her. She did look like half of a baby so guess they were very curious. No matter what she looked like, how her little body was twisted, we loved her and love her with all of her heart. She was challenged in many ways and suffered many trials everyday of her life. Through many trials, surgeries, physical and occupational therapy, many talks about why she was like she was , the pain only she could know as others: adults and children , made fun of her, She always knew the strong love and commitment of her parents and most of all the love of Jesus and she learned she could always go to him when there was no one else. Yes we were told she would never do anything but we loved and love her with all our hearts, we prayed and many others prayed. We still pray.
      Today she’s in her mid 30’s. She didn’t have downs but the severe physical challenges. She’s now married and very happy. She works everyday. She’s still can’t raise her arms , no muscle in hands so they are drawn but she works everyday. She wedges a pencil between fingers on both hands and uses the eraser end of the pencil to type with. The movement she has comes from her shoulders. They were right, no muscles in her arms. After transplanting muscle , she still can’t raise her arms, her knees don’t bend. but she manages although has to have a little help here and thre. We thank God for her everday and the blessings he bestows on her. Her hubby also has physical challenges but their challenges accommodate each other’s. With no siblings and such a small family I have always been so scared what would happen to her when God calls us home. Now He has shown us he has and will provide for her and blessed her with the most wonderful Mother in Law anyone could ever have and wonderful inlaws period.!! I love her other mother with all my heart. She’s more like the sister I never had and she’s an awesome child of God.
      I pray for all the little children for Gods love and mercy. I pray for all of us as parents and for our children they will be loved and have Gods help as each new day unfolds. In Lori”s wedding pic her other mother is in the darker dress and the shorter of us 2 moms?

  13. Judy Deans says

    Thank you for sharing, I will save this for 2 more years to share with my son and daughter -in-law when they send our Ryan off to Kindergarten. You are such an amazing dad and Noah will grow up with a strong will to accomplish what ever his heart and Gods leads him to be. We are all blessed to have you share this journey with us. Have a GREAT year with new beginnings.

  14. Awesome! Good luck kindergartener! Tears filled my eyes reading, it was beautiful! Thanks for helping this mom! Fallon ( they were in mommy and me together in Dallas, now we are in NY) is starting in September – general Ed with a 3-1 teacher’s aide, so nervous about all the same things! I hope I can keep it together because I know she is going to be fine! Let us know how it goes, yeah Noah!!

  15. I loved this. It made me tear up a little. I remember dropping off our little blessing, Riley, on his first day of kindergarten…so many emotions. Just as much as today…his first day of ninth grade. You are so blessed!

  16. You are an awesome dad and I think I felt the same way each time one of my children started school. Always those fears and concerns! I pray for Noah’s safety and adjustments to this new step in his life.

    I started following you when my grandson Forrest was born. He is now 1 yr old and getting stronger every day. Seeing Noah’s path had calmed many of the concerns I have for Forrest as he goes through life. Even though I am not his parent, Forrest has a special place in my heart. God Bless you and your wife as you start a new chapter with Noah. I don’t think anything is going to hold your little guy down 🙂

  17. Lindasudmeier says

    I think we have all had these feelings and fears.My oldest child with DS sat under the table at school his first few days.I always picked him up after school.It was a week or so before the teacher told me he doesn’t come out from under the table and just cries.Well, my little boy who started school with no speech until 7 is now a whirlwind of ideas.He writes constantly and is always looking up info.He was very upset they only gave him a certificate of completion from high school so he advocated for himself to go to the adult school and get into the program for his high school diploma not settling for a GED.The math is hard but he is doing it one problem at a time.It may take years but I really think he has a chance to get it.Noah is a beautiful boy.My kids too were beautiful.The first time we had to get a babysitter,it was a woman from our church we thought we could trust.She babysat our three with DS ages 5,6 and 7 for 9 hours.My husband had two finals for his Masters and I had to fly from Missouri where we raised our kids,to California to get our last child.The womans 17 year old son came to our house and raped our children many times over 9 hours while she left to get her car repaired with the 200. we paid her for babysitting.Our children are very vulnerable,especially the good looking ones.I had thanked God every night since we got our first child that they were not molested or treated unfairly .My children kept the rapes from me for 12 years.When I found out I dropped my whole life to get back and forth to Missouri to get this pig imprisoned.He got 21 years but the judge who was no good made it consecutive to 7 years.He still has 2 years.We have moved from there back to my home in California.We still have a farm on 20 acres and a house of 5 bedrooms and 2 baths in town we are selling.I don’t know why God did not watch after my children when I asked him everyday,when I trusted him so much.I’ve spent my whole life in church.Why do I tell you this?
    So you know,get nosey,ask anything you need to about your child,don’t let time pass when you feel something is wrong.Our kids are so vulnerable.Linda

  18. Sara Perez says

    Rick, that is such a great post/letter to Noah!! He’ll be just fine. And it’s the start of something wonderful. You and your family are so blessed and I pray that God gives you the strength to get through this day. 🙂

  19. Erin Kelly says

    Congratulations on your big day Noah!!

    Rick – Does Noah need orthotics? Just wondering if the Converse shoes accommodate them!

  20. Thanks for sharing. My son with DS is 4months old. Every time I dear for his future I come to your blog or Facebook page and I get filled with hope. Will save this for wine he goes to school. God bless you Noah dad!

  21. Greetings from St. Lucia Noah and congratulations on your journey.
    My grandson Liam suppose to go to pre school this September, I am already thinking will people take advantage of him since he is downs. I love him so much and would be hurt knowing he is not safe at school.

    May God take you in his care and keep you safe.

  22. I have the incredible honor to claim Ricky and little Noah as family. You are such an incredible father Ricky, i am so proud of you and to Noah you have family out here that will ALWAYS have your back!!!! You are such an awesome little boy and your cousin Angel and Aunt Elsie love you

  23. Email address is correct. parenthood@candw.lc

  24. Éilísmckillop says

    Hi Noah hope you had a great time at kindergarten. I love to follow your story. And I’m sure you brought your own joy with you to share with all your new friends. My son Michael is 45 years old a young man the joy of my life. The world would be poorer place without you. God bless you now and always all the very best for the future. Best wishes to you from us in Ireland xxx

  25. Love this!! My son started 1st grade this year, and amazes me EVERY day! God doesn’t make mistakes, and I am thankful for your blog to help raise awareness for our kids!

  26. Hi Rick & Noah and family ? Our youngest son Aidan is 8 now and also blessed with DS. The fears are real and the trust required to hand over our child to another person who doesn’t know them is immense, but as you say, God has a plan. We live in New Zealand and the Special Education services are in a state of change, not necessarily a good change, but we carry on. Aidan is a bit of a runner, so fortunately the Education Dept fenced the school, he also wears a GPS tracker watch, it’s fantastic because he can push a button and ring me or vice versa and hearing his voice is enough to lift my heart and carry on until school pick up, where we greet each other every day with a big hug ?? Rick, you are inspirational and Noah will carry on in your footsteps. Last week Aidan’s friend from school (Noah), mother rang to say how much joy Aidan gives to others and that Noah loves being Aidan’s friend because he makes him happy, what else can we ask for? ? Good luck for your big day xx Vanessa

  27. Amanda Sue says

    Im reading this sitting in my car waiting on my little girl to come out of Kindergarten today (Got here like 45 minutes early) it made me cry. Your words were very touching and very similar to how we all feel. Thanks for sharing.

  28. karen k hawkins says

    Rick, what a great author, as well as father you are. You wrote how everyone feels with a little more anxiety. My nephew had down syndrome and spina bifida. Doctors only know so much. The Almighty Father and parents know so much more. Keep Giving all of us joy and God’s Blessings.

  29. Great way to express your fear and feeling.Its true nobody can do anything except God.So God bless Noah and my little Muhammad.

  30. Rashida Donaldson says

    I love your blog…it gives me such hope and inspiration for my son who is only 6 weeks old and diagnosed with DS. I know Noah will do great in school because he has such great parents!

  31. Thank you for being willing to share your love and inmost fears about your son Noah. You and Mom are doing such a great job of raising your boys with total trust in the Lord. God bless you. Rest in his love and let go of your fears regarding your/his child.

  32. What an amazing letter! I am sitting here with tears in my eyes, such powerful feelings that you are sharing! My Liam starts his journey as well at school in a few weeks. I have very similar feelings. Noah will do amazing at school! He will make friends and be a leader! He will be the teacher and teach many people on his educational journey! Some will learn and others will miss the lesson, and that’s ok. Noah has been blessed with amazing, loving, supportive parents who have and will continue to show him the way. All the best is wished for him and for you on his next phase in life. Have an awesome first day Noah!!

  33. This was so touching. What a wonderful idea and beautiful sentiment. I love this. My son is only 6 months and I sometimes think about what that moment will feel like for me & my husband. You are all very blessed to have each other. Have a wonderful first day Noah.

  34. Andrew Garcia says

    Such A great read! Your letter is so encouraging to me and my family, as we get ready to send our son with DS to his first pre-school class. It is so reassuring to year from another Christian family navigating life with similar Challenges. Good luck Noah, you will do Great things in Life!

  35. Anna Thornton says

    Great post!! My son, Jacob, has his first day of Kindergarten tomorrow!! YEA for Noah and Jacob!! How did it go?

  36. Maryam mother says

    I like what did you wrote about your son My daughter with DS she will start school on Sunday in grade 2 i hope that this year will be a happy year for all kids with DS and

  37. Reena Purohit says

    I am so so touched with your letter..I can even express. Noah has everything in life, he is blessed with a great father. Yes, you are absolutely correct that people don’t know what is down syndrome, even I never knew until we had a baby girl with down syndrome. The moment she was born we dint knew as we should be happy or sad. They were extremely mixed feeling. We named baby as “DRISHA” means answer to all prayers.
    As you said Noah is a joy kid, same is DRISHA. A lovely child.

    And yes just an extra chromosome won’t change our love from them, and hope they get same amount of love from the entire world.

  38. I started following you after you posted on Reddit a few years ago. I’m not a religious person myself but I do believe in love and it is clear that Noah is growing up with love in abundance. I wish him all the best for his first day in school – such a big step but with you and his mum behind him, and your faith, I know he will take it in his stride!

  39. Hi, my name is Graciana.. I Live in mauritius.. I have a son With down syndrome.. Lucas 7 years old. I am her mum and also his dad… It’ s difficult for me alone to look after him but with the help of god and my family I have the courage needed.. Noah is blessed with a great father.. and also mom Who loves him.. Thank you for your letter It gives me lots of hopes and courage for my son.

  40. Grace Amos-Atuboyedia says

    Hi Rick,
    I shed tears reading your letter to Noah because I have a little boy who was 8 months on Monday and who looks just like Noah. I have followed everything about Noah because it encourages to see my little boy in another light and your family has been a source of encouragement to me. I pray to God that He will see Noah through kindergarten and he will reach all his milestones.

    GRACE

  41. What a wonderful post! Love this. I write one to my daughter for every birthday, but I will also do this when she starts kindergarten next year. I am totally terrified and worried about how she will do. Thank you for sharing your thoughts and dreams for Noah, it brought tears to my eyes! I share many of the same things for daughter. 🙂

  42. Noah is such a blessed baby to have parents that love and adore him this much. Its rare to get this. From where i come from children with DS are literally hid from the society as they are considered as a bad omen (can you imagine) worse is that most of the fathers leave the wives or mothers of these children and you find that its the mothers who take the burden of taking care of these children. Such an inspiration…I will be honoured if you could do a guest post on my blog..i know so many will be reached from this side of my world. Thanks for such a inspiring letter.

  43. Tara Pigorsh says

    What a wonderful letter to Noah! It made me cry! We have a 10 month old son and already I am wondering how I will ever let him go to school! 🙂
    I will be so worried, like you mentioned, of others watching him.
    However, like you also said, God is in control!
    Blessings to you and your family.
    I hope Noah’s kindergarten year is awesome!

  44. I really enjoyed to read this because I am a mum has a five year old son with down syndrome and my little one starting his primary school in September and I have the same feeling and worries .

  45. Rick,

    You and your wife are doing a fine job at raising an amazing young man. I have identical twin girls with Down Syndrome, and I do honestly do believe these kids have a very special purpose on this earth. I believe it is to create balance…to remind us what pure love and kindness are…to show us that hard work and dedication can pay off…never to give up…And my favorite, to give the best hugs ever!

    Good-luck to you all on your new adenture!

  46. gail olsen says

    Rick that letter was the most touching letter I have ever read.Yes God sent you Noah knowing that you and your wife would accept him even though he was Down Syndrome.You are special parents and Noah has developed so well because the love and devotion you as parents gave him.Having Jaxten who is the best and most loving brother Noah could have.I will be thinking of you all and know Noah will do fine as he has so much exposure to many things.God will Bless you always.

  47. Rick,

    Never before has a blog post brought me to tears. The emotion running through your post takes what I think every parent feels and 10Xs it.

    Beautifully written and I can’t wait to hear how he got on.

    Sarah.

    P.S – the little man really rocks those Chucks!

  48. Not only was I gripped by your post, I was gripped by the comments. You’ve bought together a community of parents and people through sharing your milestones.

    Absolutely amazing!

  49. Valerie Sims says

    This is a Beautiful story. I am the GrandParent of a child born with Down Syndrome with some of the same concerns as you.

    However, Your words were really touching and has left us more encouraged and hopeful.

    Thank You!

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