“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Tuesday, March 20, 2012

What We Want You To Know (World Down Syndrome Day Version)

3/21. Otherwise known in the Down Syndrome community as World Down Syndrome Day, now an officially UN sanctioned day of worldwide awareness. The day was chosen as the perfect date since those with Down Syndrome have 3 copies of the 21st chromosome.
Now, more than ever, I find that we, the parents of these amazing, awe inspiring kids have something important to say to others facing the life or death decision about whether to continue a pregnancy when faced with a diagnosis of DS........

I asked 25 moms what they would say to a parent who is on the cusp of standing in our well travelled shoes. Here are their replies......

"I'd tell them it’s ok. It’s ok to be frustrated, to be mad, to be angry, and to feel sad. But I can assure that as soon as that little one comes out everything just disappears!!! They keep on saying special kids are send to special parents, I think those special kids make the parents special. We are not alone. There are many parents like us, new and old parents who had been through this and I really haven’t meet anyone who has complained about their life. Being a parent of a special baby makes us special as well and makes us a better person. There are a lot of resources, a lot of support and lots of people like us that have gone through this that are out there to help. And the last thing I would say is “Welcome to our Family”. That’s one thing they told me and I just can’t forget it. "~Adriana

Adriana and Eugenio

"It might be hard to imagine now, but looking back in a few years, if someone asks if you would take the DS out of your child, you won't want to. It won't always be easy, but the highs are higher. You will be amazed at the joy one little person can bring to everyone around them. No, they aren't always happy. But they are loving, and forgiving, and curious, and fun, and stubborn, and funny, and determined, and just a kiddo more like the others in your family than you can imagine. It's a baby, not a diagnosis. They need love and food and diaper changes, just like any other baby. My favorite DS quote by a fellow blogger - "We often think that having a child with T21 {Trisomy 21, aka Down syndrome} is like gaining membership to a secret club, a club you never knew you wanted to be in or even existed, but once you are in, you are so thankful that you were chosen."  Don't freak about the what if's. Take one day at a time. Join a support group. Local or facebook, or whatever. It's so helpful to know other mom's have the same feelings about the initial diagnosis. And it's helpful to have playgroups with kiddos who have DS so you can see first hand all the things they CAN do and will do. And it's helpful to ask the 'did your kid do this?" questions that your neighbors can't relate to ;) Most of all, enjoy your baby!!"~Kristin

Kristin, Steve, Piper, and Max

"That is is going to be harder then raising a child without DS, but ten times as rewarding. That it is going to be painful, but also incredibly joyful. That they will think they can't, its too hard, its too much, but its not. That you don't have to be a superhero to raise a child with DS, you just have to love them. And oh, they are too irresistible not to love. That their baby's smile and laughter will be the sweetest thing in the whole word, and they will experience a whole lot more of that then anything bad or negative. I wish I could give comfort about the adult years, but we ourselves are not there yet so I do not truly know what it is like to have an older child with DS. I, however, do know how much love I have for my daughter and how she amazes me every day, so I can only imagine that that love will over ride any future struggle."~Shannon

Fiona

 "We didn't find out until the day after our daughter was born, so it is difficult for me to know what I would have wanted to hear if we had a prenatal dx.  I know what I'd tell someone who just had a baby with DS though --- Don't be afraid to love your precious baby!!  Don't let worries about the future rob you of this precious time.  Also, this is difficult to express, but your baby is still YOUR baby.  Unless you adopted or chose a surrogate or sperm donor your baby is still made from parts of mommy and parts of daddy.  She will be more like you  than different."~Lisa

Lisa and Elly

  "Get ready to love and to be loved more than you ever have before."~Robin 

Lydia

 "I would tell a new parent that it is not so scary as you think. That the love is divine, that we meet the BEST group of people in the world through our kids. People we would never have met otherwise. That yes, sometimes it is hard, sometimes it hurts when you get a look or someone says something ugly, but it is usually their problem, not ours. That our kids do all the same things as other kids, they just take some extra time. That they grow up a bit slower, so you appreciate the stages a bit more. They are a gift from God himself, so you will learn to take the extra time, and actually SEE everything. To SEE miracles happen, on a small and huge scale. You have no idea how your life will be blessed...yes, some things will be different. Some of your dreams will be different. BUT THERE WILL STILL BE DREAMS...THERE WILL STILL BE JOY UNLIKE YOU EVER THOUGHT THERE WOULD BE. This journey is not one you thought you wanted...but when it is given to you...it is so magical. Treasure it, don't fear it! Your baby will be a teacher, unlike any you ever knew. He or she will teach you who you really are. Who you always wanted to be...and had no idea! Be blessed!"~Kimberly

Kimberly and Grace
 "It's OK to be scared.  No one knows how or what their child will grow up to be.  But kids with DS do grow up and they do the same things as their peers.  I know kids that love books, swimming, riding bikes, and taking care of animals.  

You don't have to have all the answers right now either.  You will learn as you go, just as you would with a typically developing child.  All that baby will need is love."~Stephanie

Stephanie and Owen
 "They are a BABY first and they need love and cuddles just like another baby!!  Paige is the best thing that has happen to us!  I thought I was so alone in the beginning but soon found out that there are so many wonderful families out there with beautiful children with DS and it warms my heart that there are wonderful non-judgemental people in the world!"~Terra

Paige
 "Remember he is just a baby and needs love and attention just  like you do, he just happens to have an extra part, for extra love.
Love your child for who (s)he is and they can do anything any other child can do.
Also treat them like you would any other child. We discipline Rylan, he has to learn from all aspects of life even if he does not like it." ~Els

Rylan
 "To love their baby. To keep dreaming and hoping for their baby...because children with Down syndrome have so many strengths.  To expect some bumps but to also expect the ride of their lives.  And I would tell them that the first thing I learned from Camden was that he doesn't need me, I need him. "~Tonya

Camden
"I would explain to them that while there may be times that are tough, they are easily forgotten when mixed with the pure joy Ian has brought to our family.  I would share websites/books with them to provide them with information that will educate them on what it means to raise a child with DS.   If they live near a Gigi's playhouse or I know of a nearby support group I would encourage them to visit and get to know other parents...because one of the beautiful things about our kids is that their paths (while similar) can be very different.  I would explain to them how I went from being a Type A career person to a stay at home mom (and now more like a Type Z)...I have learned to stop and take the time to notice every little step along the way and appreciated them so much more so than when my other kids were little.  I would also tell them what a wonderful hero and role-model Ian is for his siblings (even though he is the youngest)...he has to try ten times harder to do things that came very easily to them..but yet he never gives up!  He even smiles while doing it.  Finally, I would explain to them that the best thing they can do for themselves and their child is to embrace the child like they had always planned to...but now they also have a little "extra" to embrace.   The road less taken is beautiful!"~Cathie

Lydia
" She is just a little girl who happens to have DS.  She is just like any other little girl.  There is nothing to be afraid of."~Kristi

Kristi and Piper
 "I would say congratulations on your pregnancy!  That I understand the worry that sets in when you start getting exposed to the what ifs and potential medical and financial issues of raising a child with Down syndrome.  While I have no other child to compare this experience to, I would say that we love being parents to Grace, and our lives are infinitely better because she is in our lives.  That God/the universe/life (whatever you are comfortable with) doesn't throw you anything more than you can handle, and that you are stronger and more prepared than you think.  That this child will show you the way when you are not sure of the way yourself.  I would say that you and this child were matched because you are perfect for each other, and that there is no one better to raise this child than you.  And yes, there will be challenges, and heartbreak, and worry, but there will also be celebrations and joy and normalcy.  Best of luck, and congratulations!"~Jenni

Jenni and Grace
"If I could speak to a parent who had a prenatal diagnosis, I would tell them that raising their baby with DS will be very much like raising their other children, or if it is their first, like raising a typical child. They will love their child fiercely, and their child will make their hearts melt. They will have that awesome baby scent, soft skin, and a warm little body you just want to hold in your arms. They will cry, smile, and later, belly laugh. They will nurse, (or drink their bottle) while they gaze into your eyes. You will fall in love, I promise! It will come so naturally to you, to do anything you can to protect and nurture and  give this child the absolute best you possibly can, not because your child has DS, but because it is your precious baby!"~Diana 

Kaleigh
"I would say to give yourself time to try and absorb the enormity of the diagnosis.  Talk to PARENTS, not doctors--us parents are in the trenches and can share the real story of a child with DS.  Try to find a doctor who is compassionate towards your child--he/she should love your child as much as you do.  Remember that your child WILL walk, talk, read, write, go to school--he/she may just take a little longer to do these things.  Don't worry about your child's future yet (high school, adulthood, etc)--take it one day at a time.  Right now, your child is a BABY who just needs love and for you to love him/her for what they are--not what they are not or what they could have been.  One thing our pediatrician told us that really sticks with us is that many families would love to have a diagnosis of "just" DS--that puts things in perspective!  The last thing is that DS is the best thing I didn't know I needed!"~Jill

Yes, Lydia AGAIN. :)

" Congratulations!! Having a child with DS is an awesome experience, it can be scary at times because of different medical issues but it is very fulfilling, and you will find that DS doesn’t really matter a whole heck of a lot in the big picture and your child will make your life better." ~Toni
"Please, please don't terminate! I'm not going to lie to you and tell have a child with special needs is easy by any means but I will tell you it's worth it! My daughter even with all her "stuff"is so much more...I'll say manageable for lack of a better word, than my typical three year old haha she's such a joy and a doll. People have this preconceived notion that a healthy child is easier, better, or even preferred to a child with special needs but the truth is parenting isn't easy no matter what and no one's child is perfect, special needs or not!" ~Melissa
 " I would ( and have already to pregnant moms in our local group ), give them my website and recommended reading list.  Tell them there are a lot of resources for them and to investigate this themselves before they allow a medical professional to advise them that their child will amount to nothing. We are so lucky to only have DS, there are so many other families who deal with much more in regards to special needs.    We won the lottery with Gage!"~Shanna
Shanna and Gage
 "They CAN do it.  Yes, it is scary to face the unknown, but isn't life with children unknown anyway?  The moment your eyes meet your child with designer genes, their chromosome count won't matter.  You will just feel love.  And as far as worry - of course I worry about Ollie's future & what she will accomplish, but I have those same fears with my older children.  I just hold very different fears.  For example - teen pregnancy, drunk driving, addiction, divorce - those are all things you fear with raising children - I don't hold those fears for Ollie.  Instead the thought of Ollie getting married & moving out from my house terrifies me.  Each child is different and we raise them all the best we can.  Take what God gives you with open hands & enjoy every minute because they all grow up to fast."~Annie
Annie and Ollie
 "To a parent who has just been given a pre-natal diagnosis of DS I'd say that this child will change your whole world. They will change how you view the world and they will change how the world views you."~Adrienne
Adrienne and Steph
 "All kids are challenging & have issues & need support– kids with DS aren’t the 'different' and 'handicapped' kids the world portrays them as. These kids are also happy with who they are – it is only us who may have a problem which is only societal – if they don’t see themselves as 'handicapped' why should we?"~Gaby
Gaby and Hallel
 "We're only 9 months in. I think the biggest thing to remember is that milestones happen on a spectrum of time for all children. My first son was a late crawler and walker. So, I don't expect that Andy will be on any milestone timeline except for his own."~Katherine
"Raising a child with DS feels so much like raising a typical child.  Yes, milestones may take just a bit longer to reach, but the love and pride you feel for you child is indescribable." ~Amber 

  " I think I'd be excited for anyone who had a prenatal diagnosis.  It's great news to have a baby."~Deborah
 "The first thing I would tell a parent facing the diagnosis of DS is that it is okay to grieve. Your life isn't going to be the life you planned. This is not the child you envisioned when you learned of the pregnancy. It is normal to mourn that loss, but don't lose yourself in it. Spend a healthy amount of time mourning what might have been and then realize that you have been given the most amazing gift. Your life will never be the same. It will be the most amazing journey of your life. No, it might not be as exciting as some of your friends, but if you open yourself up, you will meet the most amazing people on this journey. Don't be afraid to ask questions. Don't be afraid to say "hey, I am scared". There isn't a single one of us that haven't had those same fears or questions. We won't laugh at you. We will most likely sit down with you and cry and vent. We will tell you our stories (we all LOVE to talk about our angels) and let you know that while this is the beginning of what seems a scary journey, it is one you will never once regret taking.

I would tell them about handing my world over to a stranger so they could stop her heart. I would tell them there is no other fear greater than that. I would tell them that that fragile little 10 pound 8 month old with a broken heart is now 5 and a healthy weight, growing like a weed. I would tell them to never discount the things your child will accomplish. They will do as much or as little as expected, so expect the moon and the stars and watch them surpass even that. I would tell them that with that extra chromosome their child was given extra abilities to wow all that meet her. That I have discovered that this is an amazing club that no one knows they want to be a part of until their little one recruits them.

Lastly I would let them know that if you open yourself up to this community, you will meet some of the most amazing women. Some will become your very best friends and you will feel as though each of these children are your own. Here is your guidebook for Holland, we are thrilled to have you."~Ange
Ange and Emily
 There isn't much that I personally can say that these wonderful mamas haven't already said.....
This journey may not be the one you had planned, but it is well worth the extra effort to take the road less travelled. While the path is often winding, there is breathtaking beauty at every single turn. Welcome to the family. We're so glad you're here! :) 
From us to you....Happy World Down Syndrome Day!
Heidi and Lydia
 



 

9 comments:

  1. Replies
    1. I'm so glad you liked it! :) I happen to know some pretty amazing mommies!

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  2. such an awesome post, and wonderful pictures !!

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  3. What a wonderful post, and I love all the pictures! :)

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  4. Great post and GREAT pictures! Happy WDSD!

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  5. Another beautiful post! I am in tears! Thank you for all the beautiful reminders of how truly blessed we are to be a part of this community!

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  6. What an amazing post Heidi, absolutely beautiful to read!

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  7. Love this post! Thanks for sharing the beauty of being the mom!

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