Dear New Mom in the Down Syndrome World,

Dear New Mom in the Down Syndrome World,

Congratulations! Welcome to our community. If you’re anything like I was, that comment probably just evoked an eye roll. I wasn’t much of a joiner in the beginning and you don’t have to be either. Maybe you are a joiner and want to dive in. Do what’s best for you. No matter what, we will always be here.

You can do this. Maybe, you are devastated. Maybe, you don’t know what you are feeling. Either way, process your own emotions. Allow yourself to be disappointed. Allow yourself to be joyful. I promise there will be so many joys. This baby is more alike than different. Don’t feel guilty. You didn’t expect this, and you can’t be expected to accept it overnight. It will take time, and that’s okay. I promise you, that if you put one foot in front of the other, you will get to the other side. Some people get there quickly, while others arrive later.

People are going to overwhelm you with information. Do not put too much pressure on yourself to know everything. You have time to figure it out. Contact your local Down syndrome organization and listen to them. They will provide you with the local resources you need. If you are a social media person, join a DSDN (Down Syndrome Diagnosis Network) birth group. They will connect you with other moms who recently had babies with Down syndrome. You can go there and know it’s a safe place to ask questions. There will be questions.

Doctors will not have all of the answers. I hope your child’s diagnosis was delivered in a positive manner. The perinatologist who delivered the news to me did so in a negative way. He painted a very bleak picture of life with a child with Down syndrome. He was misinformed. There are amazing doctors out there, but you will meet doctors who don’t realize our kids’ worth. It is now your job to shout their worth right alongside us.

Our doctor told us that Sienna would be delayed in talking, walking, and all of her milestones. She just turned 2 years old. She can identify and say 10-15 letters. She can count to 5. She is speaking in 2-3 word phrases. She is not walking, but she is on the go. I celebrate every movement and it has made our days full of joy, laughter, and shouting.

If you want to breastfeed, we have the resources to help. You can do it. It might not be easy, but it absolutely can be done. Here is a link to my breastfeeding journey. I can help and get you connected to other moms who can help as well.

There are lots of unknowns and the medical protocol can overwhelm a new parent. Do not look too far ahead. Celebrate each day. You will learn to slow down and it will be a welcome change in pace. The dreams you have for your family do not need to change. You will have bigger obstacles to overcome, but you will have bigger celebrations. Life’s most ordinary moments will become extraordinary.

Below is one of our favorite essays about this journey you find yourself on. We hope you enjoy it as much as we do. We have been to Italy and Holland and we adore them both for different reasons.

Written by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

 

 

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You Meant Well

I don’t want this post to come off the wrong way. We all love our friends and family. They have surrounded us with love and support, and we are grateful. But sometimes, even the most well meaning comment can hurt someone. This month is about educating and advocating, and that is why I am posting this. I opened a group discussion in my DSDN Mom group. I wanted to know what well meaning comments moms were hearing. I decided to share them below.

She doesn’t look Downs. Are you sure?

So, number one, it isn’t Downs. It’s never plural. It is always Down. It’s named after Dr. Langdon Down, the physician who first described its features in 1866. Number two, she isn’t downs or a downie. She is a child with Down syndrome. We use people first language. I will have more on that in another post this month. And finally, the features of Down syndrome become more obvious over time. Just because a newborn doesn’t exhibit those features prominently doesn’t mean they won’t reveal themselves eventually. And p.s. I think most of those features are pretty darn adorable.

Comedian Rob Snow put it best with his response to this comment, “I’m not sure what you mean. Would you mind describing what you think “downs” looks like? I think once you get to your second or third description you’ll realize what a mistake it was to say that to me.” Or my personal favorite comeback, “She must not have it today.”

God doesn’t give you more than you can handle.

Do me a favor. Picture one of the worst moments of your life, then imagine someone saying this to you. How do you feel? Did it bring you comfort? It doesn’t bring me comfort. In fact, it made me pretty pissed off at God. I thought he had given me way more than I could handle. When I was in the emotional trenches, what helped me the most was hearing people validate my feelings and telling me that my disappointment was allowed. I am sorry you are struggling and this doesn’t seem fair, but you are strong and you will fight for this baby. My in laws frequently said to me, “If anyone can do this, you can.” Sentiments like that gave me the will power to forge on. Those are the words that help.

God only gives special children to special people.

While I appreciate the sentiment here, because Sienna is certainly special, you are implying that typically developing children are not special. You are also assuming that I will get some comfort from God’s role in this process. When Sienna first arrived and people said this to me, it didn’t help. I was so angry at God. I kept trying to figure out why he was punishing me.

I don’t know how you do it. 

Stop. Just stop. How do you do it? How do we all do it? We are mothers. We love our children. We get up every day and do what we have to do. I have no secret recipe for being a mom. My biggest piece of mom advice is to seek out advice from other moms. That’s where all of my best information comes from. I am in awe of single moms, working moms, stay at home moms, part time working moms, special needs moms, and all moms busting their asses to provide the best possible life for their kids. Who rules the world? Moms.

   

Didn’t you do the genetics screening? 

This one really hurts. First of all, maybe I did and maybe I decided to keep this perfectly healthy baby who happens to have Down syndrome. In my case, I didn’t do the genetics screening. Whenever someone made this comment to me, I felt the need to justify my reasoning for not doing the screening. I usually would make the person feel uncomfortable by saying, “Well, not that it’s any of your business, but I had 4 miscarriages and I knew that I would never risk anything with an amnio. The screenings are just odds. The actual tests are invasive and can cause miscarriage. For the record, we had 7 ultrasounds and not one showed any abnormalities, including Sienna’s heart defect. I know many women who did all of the testing, even the NIPT test, and still went on to have a birth diagnosis. It happens. Don’t assume things and don’t open up this dialogue unless you want to get really personal. People I barely knew said this to me.

I am ending all my blog posts during Down syndrome Awareness month with quotes from great women.

“Every now and then it helps to be a little deaf…That advice has stood me in good stead. Not simply in dealing with my marriage, but in dealing with my colleagues.” -Ruth Bader Ginsburg

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Sienna’s First Advocate

If anyone ever wonders how to treat Sienna, they should look no further than her sister.

When Sienna rocked our world with her diagnosis, some of my immediate concerns were in regards to Haley. I never want her to feel like her needs are not important. Those first few months of Sienna’s life were challenging. We had therapists, lactation consultants, and a plethora of specialists coming in and out of our home. Haley happily went along without complaining. She just wanted to hold her sister and love on her.

When Sienna was 6 weeks old, we had her first Early Intervention evaluation. There were 3 therapists, our coordinator, my cousin and myself all making goals for this tiny 6 week old baby. I watched Haley playing by herself in the next room, and I began to cry. No one in the room knew what I was feeling. I looked at this meeting as some great metaphor for the future. I pictured Haley pushed to the side for years through meetings like this. You have to remember that up until now, it had just been Haley and me. She was my world. I thought Sienna’s diagnosis was going to ruin that. I was wrong.

What I soon came to realize was the inherent depth of the sibling bond. Haley was Sienna’s first advocate. She was the first one to accept her, all of her, while us adults still struggled. But what does it mean for the future? Will Haley always feel this deep connection or will she resent her sister? These are actual outcomes from a study done on 822 adults with siblings with Down syndrome. More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with Down syndrome; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without Down syndrome. Among older siblings, 88% felt that they were better people because of their siblings with Down syndrome, and more than 90% plan to remain involved in their sibling’s lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with Down syndrome as positive and enriching. What a gift!

Haley is learning empathy at an early age. The more I watch her grow into this role, the more I realize how inherent it is to her nature. I had the pleasure of watching Haley advocate on behalf of her sister this past weekend. It made my Mom heart sing. I watched her talk to our neighbors about her sister, and her diagnosis. She may not understand the concept of DNA, but she knows that her sister is her best friend. She knows that we will have to fight for her rights, and it is something that she is more than happy to participate in.

I am going to end each of my posts this month with an inspiring quote.

“I raise up my voice not so I can shout, but so that those without a voice can be heard. We cannot succeed when half of us are held back.” – Malala Yousafzai

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