Grieving A Diagnosis Of Down Syndrome: Helpful Tips For Parents
First, let me be very clear, I am not an expert on grief. I am simply a Mom who received a prenatal diagnosis of Down Syndrome and it rocked my world. Through the years I’ve managed to cope with the grief of having a special needs child and dare I say we’ve even thrived?
It hasn’t been an easy journey and it’s certainly ongoing but if I can help other parents by sharing what I’ve learned then I’m here for it.
Hey Mama Bears, before you read more, full disclosure here. There are affiliate links in this post so if you click on the link and buy the product I will earn a small commission. Now that we’re clear on that let’s get back to rocking life with special needs!
Down Syndrome changed my entire life in a matter of a few seconds. I was a young Mom to be, hopeful and excited for the future that lay before me and my unborn child and then I wasn’t.
We believe your baby has Down Syndrome. An amniocentesis will confirm our suspicions.
A few words from the doctor, pats on the shoulder, and looks of pity from the nurses and my world was irrevocably changed.
I wish I could say I handled the news with grit, grace, and a little faith. I would totally be lying if I did though and Mama Bears, I try to keep it real with you. I was devastated. It was like the doctor had dropped a nuclear bomb right on top of my life.
Everything and I mean EVERYTHING changed.
I went from hopeful and excited to devastated and terrified. I could barely eat, I wasn’t sleeping well, and I was having trouble thinking about anything other than the now very scary future that stretched before me. Oh and all of a sudden there were new Mommies everywhere with their seemingly perfect babies mocking me.
At first I held out hope that the doctor was mistaken. I mean doctors DO make mistakes but then I received the phone call with the amniocentesis results confirming a diagnosis of Down Syndrome. After the phone call the tears began and I thought they’d never stop.
I cried in the shower, I cried while getting dressed, I cried while drying my hair, I cried while driving. I tried to hold it together while working but remember having an epic grief fest in my manager’s office. I cried while making dinner, I cried while loading the dishwasher and doing the laundry, I cried as I attempted to sleep at night. I basically cried for an entire week. You get the idea.
I grieved my child’s diagnosis of Down Syndrome. I grieved the fact that he would be born with special needs. I mourned the child and life that I thought we would have. I grieved hard and to this day I still have moments of grief.
This doesn’t make me a bad Mom or mean that I can’t handle being a special needs Mom. It makes me human.
Max is a teenager. By our society’s standards I should be “over it” by now but just the other day I was waiting in the car to pick him up from bocce practice and as I watched a few high school students climb into their cars and drive away a wave of overwhelming grief hit me. Max can’t do that and it’s unlikely he’ll ever get to that point.
Grief is tricky. Everyone grieves differently and every situation is unique. There is no right or wrong way to grieve and there’s no endpoint. Grief will sneak up on you at the weirdest times.
It’s OK to grieve and feel moments of grief. Sit in the moment, acknowledge it, and then move on. That’s the great thing about emotions…they’re transient.
In fact after watching the teens drive away and acknowledging the wave of grief that rolled over me it was time to go into the school to collect Max from practice. As soon as he saw me he lit up, yelled “Mom” and ran to me giving me the biggest hug ever.
Grief? What grief? I only felt pure joy at the love being shown in that moment.
The simple truth is it’s not all rainbows and unicorns as a special needs parent. There are moments of raw grief that are so gut wrenching it stops you in your tracks. I can’t take away those moments Mama Bear, but I can tell you I have them too.
You are not alone. We are in this together.
We’re a community of strong Mama Bears but we all need a little help sometimes. So, if you need some ideas on how to navigate the grief you feel, let me help you by sharing what I’ve found helpful.
These tips are not a magic pill and will not take your grief away but perhaps you’ll find you can navigate your grief better.
What works for me may not work for you and I’ve told you before and I’ll tell you now, you are the expert on you, your child, and your life. Read the post, take away what works for you and don’t worry about the rest!
Max finally coming home after two weeks in the NICU! I’m exhausted but so happy in this picture.
What Can Parents Do To Manage The Grief Of Having A Special Needs Child
Grieving A Diagnosis Of Down Syndrome Helpful Tip #1: Don’t Ignore Your Feelings Of Grief
Sometimes you just have to sit in your feelings. Set a timer for 5 minutes and go ahead and feel whatever it is you’re feeling. Cry. Yell. Feel.
It’s OK to feel mad or sad. It’s OK to acknowledge the fact that you didn’t sign up to be a special needs parent. Don’t fall into the trap of toxic positivity where we tell ourselves everything is wonderful and fine because sometimes it just isn’t.
There are times I love being a special needs Mom and times I hate it. That’s life. That’s normal. It’s not all rainbows and unicorns but it’s not all doom and gloom either.
Once your 5 minutes is up, wipe your tears, and get on with living your life.
Grieving A Diagnosis Of Down Syndrome Helpful Tip #2: Nurture And Utilize Your Support Network
Your loved ones love you and your family. They’re going to want to help you so put your super Mama Bear cape away and let them.
If your Mom offers to take the kids for an afternoon count your lucky stars you have such a fabulous Mom and let her! Don’t feel guilty about it either. If a friend tells you she’s there for you if you need her, ask her if she’d be willing to come over and help you do your laundry.
People want to help but often they’re not quite sure how to go about it so don’t be afraid to speak up. If having a frozen casserole in the freezer to pull out on an especially tough day would be helpful, ask them to make you one!
In addition to your established friends and family you’re going to want to find other Mama Bears who have kids with special needs. These Mama Bears are gonna be part of your crew from here on out. They’ll get you in a way others will not because nobody truly understands what it’s like to have a child with special needs until you have one. These Mama Bears are going to be invaluable. You’ll find lots of Facebook groups and support online and that's great, but I do encourage you to connect in person with some local Mama Bears too.
Grieving A Diagnosis Of Down Syndrome Helpful Tip #3: Journal
I’ve journaled off and on throughout my entire life and have found it extremely helpful. In fact, I’ve found it so helpful I wrote a post about it!
5 Journaling Tips, Ideas, and Reasons To Journal For The Special Needs Mom.
Journaling helps me calm my anxiety and process my emotions. It also allows me to look back and see how far I’ve come as a Mom, how much progress Max has made, and how we’ve grown as a family. On days when I’m feeling a bit defeated I’ll flip back in my journal and remind myself.
Grieving A Diagnosis Of Down Syndrome Helpful Tip #4: Support Yourself
Some refer to this as self care but over the past few years it’s morphed into something I don’t connect with. I don’t know about you but when someone mentions self care I think of things like manicures and pedicures.
Right now, that is SO not where I’m at in life!
I can connect with the idea of supporting myself which means prioritizing things that help me fire on all cylinders.
I prioritize sleep. Mama Bears, I am in bed by 10pm most nights and that includes weekends! I am physically active most days whether it’s taking a walk with my family or doing a 30 minutes of lifting weights in the basement. I drink water during the day, I journal, and I try to eat healthy nutritious meals.
I don’t do these things because I’m trying to reach a certain number on the scale. If you’ve seen me you know I’m not thin. I do them because they help me feel better and do what I need to do day in and day out as a special needs Mom, soccer Mom, medical professional, wife, etc.
Grieving A Diagnosis Of Down Syndrome Helpful Tip #5: Practice Gratitude
Focusing on what you do have rather than what you don’t is a great way to get yourself out of a grief funk or any funk for that matter.
Gratitude fosters a positive mindset allowing us to cope with our grief and loss while celebrating the good. It allows us to expand our attention to acknowledge the goodness we are always receiving.
When I’m feeling especially down I remind myself of all the fabulous people I’ve met because of Max. It’s highly unlikely these people would have been in my life without him and all of them enriched our life in one way or the other.
A gratitude journal is another fabulous way to get in the habit of practicing gratitude every single day. There’s always something to be thankful for!
Grieving A Diagnosis Of Down Syndrome Helpful Tip #6: Read Books, Watch Movies, Or Listen To Music That Inspire You
Everyone has a book, song, or movie that inspires them. Whenever the song Eye of the Tiger by Survivor comes on I’m ready to go out there and win at life!
If you’re feeling a little low, listen to a song that gets you pumped, throw on a movie that motivates you, or read an encouraging book. Sometimes we just have to be inspired to keep going and get out there!
You may already have a favorite but if you’re looking for inspiration or to expand your repertoire I like these movies that happen to be about people with disabilities…
These books touch my heart…
Chicken Noodle Soup For The Soul
These songs get me going and remember…I’m a product of the 80s!
Eye of a Tiger by Survivor
I Will Survive by Gloria Gaynor
We Are The Champions by Queen
Roar By Katy Perry
Grieving A Diagnosis Of Down Syndrome Helpful Tip #7: Educate Yourself
When we first learned of Max’s diagnosis we were scared. I knew a little bit about Down Syndrome from my training but it was mostly medical stuff. So I knew a little bit about all the medical challenges we could be facing with Max and that was it. Obviously not stuff that brings on a warm and fuzzy feeling!
When managing my grief I found it extremely helpful to educate myself about his diagnosis. I read all the books I could get my hands on about Down Syndrome and we joined a local parent group.
BEST DECISION EVER.
The parent support group was our LIFELINE for a really long time. They understood the grief we were feeling and didn’t judge us for it. They offered support, love, and shared all the knowledge they had. I truly don’t think we would’ve thrived like we did if we had not found this group as quickly as we did.
Check out The 10 Best Books For A New Mom Of A Young Child With Down Syndrome to learn which books helped me through that time.
This was the memoir I read during that time too…
Grieving A Diagnosis Of Down Syndrome Helpful Tip #8: Don’t Compare
I believe Theodore Roosevelt is the one who said “Comparison is the thief of joy” and he’s right.
Do not compare yourself, your situation, or your child to others. Mama Bear, I know this is super hard. I’ve been trying to avoid comparison for years now and I STILL catch myself doing it!
When I catch myself comparing I repeat Teddy’s famous quote to myself and then think of three things that I’m thankful for. It seems to do the trick to get me out of that joy sapping comparison cycle.
Max as a newborn. We had a prenatal diagnosis of Down Syndrome but once he was born my new role as a special needs Mom became very real. It was TERRIFYING.
Grieving A Diagnosis Of Down Syndrome Helpful Tip #9: Give Back
Volunteering and giving back are powerful ways to manage grief. Helping others redirects your energy and emotions. It allows you the ability to step back and see the world as bigger than just your little slice of it.
Volunteering as a family is a great way to foster a sense of accomplishment and make a positive impact on your community. You may find a support network that you never imagined.
Grieving A Diagnosis Of Down Syndrome Helpful Tip #10: Find A Creative Outlet
This is along the lines of supporting yourself but I think it gets lost in the other important stuff like getting enough sleep and deserves its own platform.
As Moms it’s so easy to get caught up in being a Mom and doing Mom things. Yes, we’re Moms and that’s a big part of who we are but it’s not ALL that we are. As Moms we’re going to be in a healthier mindset and more resilient if we are able to explore creative outlets.
Creative outlets can be anything that interests or inspires you. It can be knitting, baking, painting, writing, coloring, dancing, or playing music. The possibilities are endless as long as it allows you an outlet to express yourself creatively and fills your cup.
There you have it Mama Bears! 10 helpful tips to help you cope with the grief of having a child with special needs. If you found this post helpful then you’ll want to check out…
3 Tips For The New Mom Of A Child With Special Needs
Dandelion Tribe Takeaway: 10 tips to help parents grieve a diagnosis of Down Syndrome. #1 Don’t Ignore Your Feelings #2 Nurture And Utilize Your Support Network #3 Journal #4 Support Yourself #5 Practice Gratitude #6 Read Books, Watch Movies, And Listen To Music That Inspire You #7 Educate Yourself #8 Don’t Compare #9 Give Back #10 Find A Creative Outlet
Mama Bear Share: What helps you cope with the grief of having a child with special needs?