This post is dedicated to all the brand new parents of babies with Down syndrome who happen across this blog...A few days ago I was so excited to receive a comment on my blog from a brand new mom Rachel, who had just given birth to her sweet little son Stockton, three weeks prior. Stockton was born with Down syndrome as well as a heart defect. She and her husband did not know until he was born...and so of course her search began to find as much information as possible. Gosh, I so remember being there. I am still there actually, but I can remember so vividly the early weeks and months...fraught with so much emotion. Rachel had been searching for information on raising a child with Down syndrome and happened across my blog, from thousands of miles away. I am honored that after perusing a little while and learning about Reid she decided to leave a comment...one which completely impressed me. She was wondering what I wish I had known when I was at the place she is at...being 3 weeks new into mothering a child with Down syndrome. Wow, I thought that was such a wise thing to ask!! Below is my response to her in an email, but I would LOVE it if anyone reading this blog wouldn't mind adding your 2 cents in as well, as to what you wish you had known back then whether from the perspective of a mom, dad, grandparent, aunt, friend, or however you have been touched by the diagnosis. No matter how many months or years we are away from those initial words, "Your child has Down syndrome" we all remember the blow we felt and the heaviness those words brought at first, so I am hoping that those of us who have walked a few steps ahead in these shoes can bring encouragement to Rachel and to Lisa who also just gave birth to her first child, baby Nolan, and to any other new mom who has been told about their child's extra 21st chromosome!
What I wish I had known when Reid was just a few weeks old...That he would be invited to birthday parties!!! That honestly was one of my first thoughts..."What if no one wants to invite him over to a birthday party?" Well... our little guy has already been invited to 8 and he's not even 2 years old yet!! :)
That my days won't always consist of Dr. appointments (seems I was always carting him to Dr. appointments and specialists and I was overwhelmed. But, it does slow down in that regard)
How well received he would be in the community. He melts people...I won't even know he's been flirting with someone and I look up and he's already engaged someone in some sort of contact (He won't let anyone walk by him without a wave and he'll keep waving until he's satisfied that he's gotten eye contact with them)
How NORMAL life would be with him
That he is more like a typical child than not
That his brother wouldn't care that he has Down syndrome, that Luke would absolutely adore him!
What an adorable personality he would have...it would of helped me to relax and look forward to the future rather than worry about what he would be like
That I didn't need to be sad...he has so much to look forward to in his life
How much he would help us to put things/life into perspective
I wish I knew of the photo montages featured on the Gifts website http://giftsds.segullah.org I just found these videos this past summer...Scroll to the bottom of the homepage and on the left you will see photo montages. These videos, that families made of their children with Down syndrome, have been fuel to my soul!
How much I would regret that I did not take more pictures and video of him early on. This is hard for me to admit but I grieved for quite awhile and I suppose felt a little bit in denial and when I would see pictures it would remind me that he had Down syndrome, I kept trying to get the "perfect picture" where it didn't show the features of Ds. Of course I no longer feel that way...which is why I share with you, so you'll take oodles and oodles of pictures if you aren't already!! :) Actually I must inject a side comment here...I have a friend who also has a son with Down syndrome and she was trying to enter his picture into a contest and she too wrestled with trying to find the perfect picture that didn't look too "Down syndrome"...she got a comment back from the company stating that they were sorry but they wouldn't be able to feature her son because he didn't look Down syndrome enough. The lesson I learned from that was...embrace him as he is, he is beautiful just as he is!!
How much I would fall in love with the Down syndrome community. You are in good company...I know that sounds weird, but what I have found is that the families who have been BLESSED with a little one with Down syndrome... are amazing.
What an adorable personality he would have...it would of helped me to relax and look forward to the future rather than worry about what he would be like
That I didn't need to be sad...he has so much to look forward to in his life
How much he would help us to put things/life into perspective
I wish I knew of the photo montages featured on the Gifts website http://giftsds.segullah.org I just found these videos this past summer...Scroll to the bottom of the homepage and on the left you will see photo montages. These videos, that families made of their children with Down syndrome, have been fuel to my soul!
How much I would regret that I did not take more pictures and video of him early on. This is hard for me to admit but I grieved for quite awhile and I suppose felt a little bit in denial and when I would see pictures it would remind me that he had Down syndrome, I kept trying to get the "perfect picture" where it didn't show the features of Ds. Of course I no longer feel that way...which is why I share with you, so you'll take oodles and oodles of pictures if you aren't already!! :) Actually I must inject a side comment here...I have a friend who also has a son with Down syndrome and she was trying to enter his picture into a contest and she too wrestled with trying to find the perfect picture that didn't look too "Down syndrome"...she got a comment back from the company stating that they were sorry but they wouldn't be able to feature her son because he didn't look Down syndrome enough. The lesson I learned from that was...embrace him as he is, he is beautiful just as he is!!
How much I would fall in love with the Down syndrome community. You are in good company...I know that sounds weird, but what I have found is that the families who have been BLESSED with a little one with Down syndrome... are amazing.
10 comments:
I would like to add, from my own perspective:
The absolute, pure, complete love I feel for Cathal. I think that this is due not only because I am experiencing Grand-motherhood for the first time, but also because he is "special".
The immense joy every time he does something new, every time he shows progress. Every achievement is a major cause for celebration, a victory of his determination, and that of the whole family behind him.
The incredible energy and courage that his parents have found in themselves because of him, and that I found in me.
Cathal has changed our lives for the better, he has enriched them, and will for always.
Oh Cheri, I have tears streaming down my face right now! But absolutely the happiest of tears. I had so many of the same thoughts and fears that you did when we first found out through the amnio. What I was able to learn before he was born is what an amazing community of mommies I was going to be blessed to be involved with! I absolutely cannot wait to meet you and your family at The Buddy Walk! Every time I look at my sweet Nolan's face I am filled with hope and dreams for him and not sadness or fear like I thought I would. My husband and I are so proud of every little thing he does, like lift his head while on his belly (he has even been able to roll over onto his back!) and hold onto our fingers when he's eating! It's through blogs like yours that I have learned that his life will be a beautiful and incredible one, and not much different than any other little boy's! Thanks for the inspiration Cheri. xoxoxo-Lisa Doherty
Beautiful post and beautiful comments.
In the name of honesty, I will add my perspective:
I wish I wouldn't have wasted any time thinking we were 'freaks'. Seriously, I always thought Mike and I were somewhat 'privileged', we did well monetarily, had two perfect children, had much to be thankful for and we always felt like one of the 'beautiful' ones... Does this sound conceited or big headed? I hope not, but truly, we felt like our life was one to be envied. When Presley came along, I all of a sudden felt like we were going to be the 'freaks from the carnival', sounds horrible, I know. I just longed to see other 'normal, lovely' families with our own fate, I knew I would find comfort in that. Something about that is probably shallow but it is true. And now, I look around and I see how lovely the familes we have met are, how they would be people Mike and I would of hung out with in college, had we crossed their paths then.
I hope this comment doesn't offend or make me sound superficial. I just know we all run the gamete of emotions and I will never, ever lie about it, because somewhere, someone will have felt the same way and perhaps my words will comfort them. I would love to visit with both Rachel and Lisa if either of you read this, please come by and visit!!
And Cheri, you and Toby are two of the many that have made me know just what a waste of time it was to worry about feeling so different and freakish about our fate! I can't think of anyone I would rather have as in laws once Reid and Pres marry!! LOL!
I too have tears from reading this post. I never know when those tears will surface. They are definately tears of hope and joy though because we feel exactly the same way. Thank you for this post and please send my regards and hugs to the newest and blessed families of Stockton and Nolan.
Beautiful Cheri and what a wonderful thing you are doing ... a pay it forward in some ways.And I embroiled in the magnitude of medical issues still come back to the piece of advice I was given by Sam's mom and that was this "If I knew then,what I know now,I wouldn't have shed a tear."
Hi Cheri!
Yep - birthday parties, check! And I agree with what else you said too! :)
Have a great day and nice to meet ya!
What beautiful and insightful comments! I remember shortly after Sadie was born, my parent mentor through DSAOC (and now my friend) said, "If I only knew then what I know now... there would have been a lot less tears shed". How true this statement is. I'm so glad you were able to reach out and help a new mother. Those first days are so hard and overwhelming. Just a sidenote... I remind my friend of what she said now that her daughter has started elementary school. There will always be new hurdles to jump and new forks in road; but, with a little faith it is amazing what our kids can teach us.
Your boys are beautiful. Thank you for sharing them and thank you for visiting my blog. I'm going to link your blog so I can follow your beautiful family. Looking forward to meeting you at the buddy walk!!!
Gideon is 16 months old! And I wish I had known just how much I would love him and how proud I would be of him.
Today when I put him in his highchair - he signed eat and he also pulled himself up for the very first time! Each accomplishment is met with my much joy - I am not sad for the things he doesn't do yet - I am excited for all the possible things he can and will do!
This is my 2 cents, although I hope it's worth a little more than that :)---
I did not know Devon would be born with Down syndrome, and was told in the hospital when he was about 2 days old. I was devastated. My "idea" of the perfect family and the "perfect" life was shattered.
My...how things have changed!!!
At that time, instead of all the medical jargon--mumble, jumble all the doctors, geneticists, specialists, were telling me, I WISH I would have known what a charming and infectious personality Devon would have. These are things that are not apparent when your baby is days or even months old.
Now at almost 3 yrs old, he has become quite the Mr. Personality, but I would have never known way back when. Devon has changed my life for the better. He has a connection with people--even strangers--that I can only describe as magical. He wakes up happy everyday (almost:)) and goes to sleep the same. Devon loves, loves, LOVES his big brother, and now has a little sister to watch over.
Had I known back then what I know now, I would have thrown out all those stupid books that tell you what problems your child may or will have and do research on a need-to-know basis only, instead choosing the time to spend getting to know your child.
When Devon was born, I realized that many of my emotions were guided by fear of the unknown. I took some time to heal, grieve, and then got to know my son.
Today I feel so lucky, blessed and privileged to be his mom and to have him in our lives. I could not imagine life without him.
We didn't know that our baby, Julianna, had Down syndrome until she was born. Needless to say, we were shocked and so sad that what we expected to be a wonderful and happy occasion as we left the hospital was anything but. Now, our little sweetie is 2&1/2 years old and what I wish we would have known during those early, scary first days was....
...that you will love your baby more than you can imagine
...that what you thought was such a curse, you will realize is really a blessing
...that your baby will be such a loving, wonderful, funny, adorable little person -- you will be so amazed and proud of them
...that, oddly enough, you will feel like one of the 'lucky ones' who were chosen to be part of this very special circle of families, and to be given your precious little child.
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