Moving on after a Down Syndrome Diagnosis
I have had lot of moms reach out to me since I began this blog. It happens weekly most times, and I love it because it means that all the hours I spend on this blog are not in vain. Information about Down Syndrome is getting out there and people that need it are finding it. There is one question that comes up more than any other, it comes in many forms but it always boils down to the same thing. When you get a Down Syndrome Diagnosis…
How do you get past the initial emotions?
How do you move on?
We are past the 1 year mark into our journey and I can joyfully say that I have moved forward. But, in the beginning, it is so hard to imagine that one day, you too will be past the initial shock that hits you like a lightning bolt and you will move on to a better place. The process is different for all of us, it takes time because all of our situations are different.
For some you are first-time moms, some are single moms, some are dealing with a partner who can’t accept the diagnosis, some are dealing with cultural norms that do not accept Down Syndrome, some of you can’t get past seeing Down Syndrome instead of seeing the beautiful creature you have been given. It’s okay, there are so many life circumstances but they all have one thing in common, you will eventually get over it and move on.
I can share what worked for me, I have shared this with most mothers who ask me these questions and if you can do it, it will likely help you immensely.
Are you ready for the sage advice?
It is only this…live in the moment.
The part that gave me the most trouble in the beginning when we received Cedar’s diagnosis was the “what if’s” and the “what’s going to happen?” Those questions and the subsequent future thoughts are what kills most of our joy. We inherently do it, we look 20 years into the future and worry that our child won’t ever be independent, won’t ever have a spouse, won’t have children, won’t have a job, won’t do (fill in the blank). The thing is, I never did this with any of my other children. I have 5 other children and never once when they were babies did I worry about their future. I discovered (actually my husband clearly pointed it out) that this was what was creating all my salty tears and tearing me up inside daily in those first few weeks.
I had to let it go and begin living in the moment.
That meant I had to force myself to not think more than a few months into the future. I had to stop the thoughts that would creep in about our future and what it may or may not look like. The truth is, not only do I have no idea what it will look like, but I also have no control over it. In a situation like a Down Syndrome diagnosis, the hardest thing is the lack of power and control that many of us feel. If I have learned one thing it is that there are some things that are completely and totally out of my control, but what I can control is my response to the circumstances that come my way.
Once my husband pointed this out to me (more than once as it took me some time to listen to him) I realized that the days that I felt were “good days” in the beginning were the ones in which I just enjoyed my baby. I enjoyed his smell, his soft skin, his warm hands, and the feeling that I got when I held him close. The days that were hard were the ones that I began fretting over a future I have no control over. That is when I consciously made myself stop. I would take a deep breath and when the fears started to creep in, I would push them away and just focus on the here and now. I found that with a little practice, this became easier by the day.
So, here we are, over 1 year in, and it is pretty rare that I worry too much about the future. I find so much more joy in the day to day life we are living that I push out the worries of a future heart catheter surgery, the worries of what Cedar will or won’t be able to do, the years that are still far off can stay that way for now and that is how I can get over it and move on.
What have you found helpful in moving on after your diagnosis? Leave me a comment to let me know.
One thing that has helped so many is seeing other children with Down Syndrome leading normal lives and acting like normal children. Here is a great resource for just that, a NEW children’s picture book, Down on the Farm
Need more encouragement? Grab your free download copy of the Ebook “Dear Mama” featuring letters to you from a number of other blogging moms who have also “gotten over it” and have kind words to share. Simply sign up for the email list and you will immediately receive a link to this free download.
My son is almost 4, and I just recently started following you on Instagram. I am meeting with a new momma on Friday and have been stewing on the right words to tell her. After reading this, I know exactly what to say! You put into words exactly what we have done but just didn’t realize it. Our happiest moments are those we live in…no matter the worries about feeding and development and future. Those things will come.
Love your posts and enjoy the blog. Thanks!
Jessica, Thank you so much for taking the time to comment and let me know that this was helpful! Best of luck Friday, and let that new mama know about this site too! Tell her I said Congratulations!
xoxo
Thank you for the helpful encouragement and blog posts! My little guy is only 2 1/2 weeks old, but a prenatal diagnosis gave me plenty of time to “fret” over the unknowns! I too have found it robs my joy when trying to figure out what the future holds. So, as negative thoughts and worry creep in I remind myself of the truths found in God’s word…He already holds the future, our children, and us in the palm of His loving hand!
Congratulations on your new babe!!! How is he doing? You will find, as the months go on, that all the tears will seem like such a waste. I certainly feel that way now. Much love to you and your new babe!
My wife gave birth to a beautiful baby boy a week ago. We had signs at birth that he potentially had Downs. We did have his genetics tested and her does. I have already “gotten passed” the diagnosis but mama is still looking into the future I’m going to read this to her each and every day. Thank you for this blog.
Dave, the thing that helped me the most, in the beginning, is when my husband kept reminding me that our son was a baby. I didn’t need to look so far into the future and worry about when he was a teenager or an adult, he’s just a baby and I needed to just enjoy the moment. It was then that I realized that the fear for me was the worst when I let my mind wander more than a few months into our future. There are also a few dad stories here on the blog that you might relate well to. If you type “Dad perspective” into the search box you should find two of them. Reach out whenever you need to!
Hello Everyone!
My name is Tami. I have a beautiful young woman (age 16) who lives with Down Syndrome.
I can say I have experienced ALL the emotions, wondering, worrying, “futuring” for my daughter Kaylee Ann.
I love how Dawn@cedarsstory speaks to living in “the moment”! Outstanding Dawn 😍. I would also like to add that as much therapy and tools and time teaching our beautiful littles they will learn on their own time frame. We can provide the tools and time, however do not be dicouraged that “goals” aren’t being met on some random time continuum. Who figured out those stats anyway? Besides that your little one will grow, thrive blossom and meet their individual abilities as they do and can.
So TRY to enjoy as much as you can those in-between waiting times. I have never talked to anyone who has a child with Down Syndrome that was ever discouraged about what their child couldn’t accomplish. We focus on what our babes are doing and how they are moving forward.
Meanwhile enjoy the lots of extra time you get to experience through each phase of your child’s growing forward. Appreciate you get a whole year or more to have the time to watch your kiddos walk, or hold a cup, or sign their first word, or smile or say mamma.
What will come will come. Only time will know how your sweet little grows and blossoms. Remember it’s ok to not be ok (for the care providers), because there will be days of feeling very discouraged.
NEVER GIVE UP teaching and guiding your child. After 16 years of day in and day out skill buliding, emotional coaching, encouraging, and everything else, I can say your child will learn and move forward.
So for now, try and relax and enjoy the ride. Each new day is a mile stone for our specials 🤗.
Be encouraged and of a happy heart. This child has been given to you, because you can care and nuture only the way you can.
I was 40 when I had Kaylee. I had two older children, now a 27 year old son and a 22 year daughter. Kaylee was a surprise. We did choose an amniocentisis. At the time there were 5 sibblings total and we wanted to be prepared.
So take care of yourself. Date your partner. Give special attention and care to all the other siblings and enlist help. Remember, you do not have to do this alone. There is a community somewhere close to you. Reach out and belong. These people will be your forever friends.
Best Always,
Tamidlifewith3ntrisonomy
Instagram, Tami B Slack
Tami, wow, thank you for all of the encouragement!!! Your words are important for all of us to read, especially those of us who are newer to our walk with Down Syndrome.
Hey Everybody,
I have a 30 year old daughter with Down Syndrome. She is amazing.
None of the bad things that I just knew would happen, ever happened! At 6 months she went to a school for special needs infants and children. She started speech therapy there. At age 2 she started speech-oral motor therapy , OT , and PT every day for a year.
She never had trouble at school, and I kept her in Resource , not Sp Ed. We kept her back in first grade when her reg teacher said she would have her reading with everyone else with one more year, and she did. She advocated for herself at school, and was NEVER shy in making her needs known, or anything else. She went to senior prom and homecoming dances. She went to college at Eastern New Mexico U in Roswell for a year. She was just like any other college freshman at 19 ( I did not keep her in HS til 22), she had a messy dorm room, lots of dirty clothes, and came home with lots of bad habits😀.
Now she works at our church cafe, she sings in the choir, she goes to Camp Blessing annually, she has a boyfriend that she is crazy about, lots of friends, and she attends a day program once a week at her request – because they have a drama class. She is a happy human being and inspires others every day.
Kay Gates
I love this so much, Kay, thank you for taking the time to share this with all of us newer on the path!
I love your advice of “live in the moment”. It’s so true, isn’t it?! It takes time for the initial shock of things to wear off but then you find yourself walking down a road far more beautiful than you ever could have imagined.
Isn’t that the truth??? The road is far different than what I expected, and yes, far more beautiful.
What great advice! I have tried really hard to do that too. In fact, six weeks before his first birthday it suddenly occurred to me that we’d get to celebrate that birthday and we should throw a party. I started planning a huge party for 300 people. My mom laughed at me and said, “Shouldn’t you have started planning this when he was 9 months old?” I should have, but at 9 months old I couldn’t imagine that we’d actually make it to a year. I was living in the moment, trying not to think too much about the future. It has gotten me through.
300 people??? WOW! What an amazing celebration.