Father and daughter spending time together outdoors.

The Small Moments of Advocacy Can Make a Big Difference

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I had a good advocacy moment recently. An equipment representative at work was in town, and we went out to lunch to discuss some new stuff he wanted to show me. During the course of lunch, we were chatting about our kids, and he began telling me a couple of stories about his 9-year-old son’s recent acts of compassion, and rightly bragging about his son.

As the conversation continued, he saw on the TV at the restaurant a story about a 10-year-old with terminal cancer who was featured during ESPN’s pre-game show for Monday Night Football. I don’t watch football, so I had not seen this story, but he was telling me about it, and it’s pretty much your standard inspiration porn story. He started going into his analysis of the situation/story, and said, “Can you imagine that? Can you imagine being his parent? Having to watch your kid go through that many surgeries? Having to answer the tough questions that kid no doubt has? Having to watch your kid struggle to live a normal life?”

I was instantly transported back to February 2014, when my daughter Lucy had to have heart surgery at 2 months old to fix her patent ductus arteriosus, to the several procedures she has had since then, to all of the therapy sessions, to the meetings with the Children’s Developmental Services Agency, to our recent IEP evaluation meetings. For about five minutes, I let him continue on his track, answering a quiet “Yes” to each of his questions, but saying nothing more. Finally, I could be quiet no longer, both because I think he was thinking I had zoned out and wasn’t interested in his story, and because I started feeling like had to stop him before he said something unintentionally offensive.

I dropped the bomb on him. “Yes, I can imagine that. All of that. My daughter has Down syndrome, and had to have heart surgery at 2 months old.”
He instantly started the routine I and many parents of special kids are familiar with: He knows someone with Down syndrome, they’re doing great, they’re always so happy, it takes special parents, etc.

Then the questions came: Is she doing OK now? Do you know if she’ll have any more health problems? Do you know what she’ll be able to do? How do you and your wife do it; how do you deal with her disability?

Yes, she’s doing great now. She will probably have more health problems in the future, but I don’t know for sure what will and will not happen. Do you know what health problems your kid will have in a year, five years, 15 years? I don’t know what she will ultimately be able to do and not do, but we encourage her to work on what she is not good at, so that she can get better at it, just like any good parent.

Did you know when your boy was 3 what he would be able to do at 9 years old? Do you know what job he will ultimately hold? We treat her like a typical kid, but get her the help she needs, and just like any other parent, there are things we do great, and things we look back on and say, “We could have done better with that.”

She is more like any other kid in her class than she is different, and we are just like every other parents on the planet.

In the end, I felt like I had expanded his mind just a little bit, given him something to think about, and done my part as a proud dadvocate. Every day can present an opportunity for advocacy. My kid is awesome and so is yours. Take the little opportunities to change the minds of the people around you — friends, family, co-workers, random people in the grocery store. With the support of these people, bigger changes can be made in the world our kids are growing up in.

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Facing the Reality of My Daughter’s Heart Surgery This Year

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2017 will be the year for my youngest daughter’s heart surgery. Honestly, I won’t allow myself to think about it much because my mind goes into too much detail. I’m the kind of person who deals with the situation when it’s time, then I tend to repress those emotions because they’re too overwhelming. Fear is not reflective of my faith and can taunt me at times. My fear is “I don’t want my children to suffer in any way.” I would gladly take it for them.

As strong and positive as I try to be, reality hits me in moments. I wonder how my daughter’s life will be in reality, not just in the positive fantasy I try to maintain. Every time she has an appointment with her cardiologist, I hold my breath and my stomach is in knots wondering if the doctor will say it’s time for her inevitable heart surgery.

What I have to remind myself is that after the heart surgery to repair the AV defect she has, it will be a new beginning for her. Her heart and lungs will not have to work as hard. As much as I do not want any of my children to suffer or be in any pain, I have to face the reality of a necessary event for a stronger future for my daughter. In life, we often have to go through the fire to become stronger.

As parents, we see our children fall as they try to walk. We see our children cry when they are afraid or frustrated, but give them comfort while in our arms. We encourage them to keep going and begin again as many times as it takes to accomplish the goal. Not only are we seeing our sweet children grow, but we are growing and learning as much as they are. I know as a mama of a 12-year-old, a 10-year-old, and a 9-month-old, I certainly continue to gain wisdom daily.

Among the fears we might have as parents, I believe we should try not to fear change. Change can mean we are developing, growing and learning. Whether we are facing a new chapter of our lives, seeing a new stage our child is entering, or even facing a new beginning after our child’s heart surgery, I believe we can learn from them and be stronger for it! In my experience, it is never too late to begin again until we accomplish our goals.

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6 Steps I Took to Reach Peace With My Daughter's Down Syndrome Diagnosis

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It took me a long time to be fully at peace with my daughter’s Down syndrome — 11 years to be exact. I hope you don’t judge me, but it really did take me a while. The road to serenity is full of dips, turns, and sometimes treacherous curves.

I have thoughts as to why it took so long for me. I had no idea at the age of 22 that my daughter would be born with Down syndrome. Did the unexpected affect my ability to find peace? I don’t think so. If I had known before her birth, I feel as though my journey would have been the same. Receiving a diagnosis of Down syndrome, or any unexpected diagnosis can be metamorphic. It’s as if one’s brain must race to catch up to an impeding, befuddled uncertainty. Medical professionals are required to give patients knowledge, or the “reality” if you will. It’s up to the patient to determine what he or she will do with this knowledge.

It took 11 years before I was able to merge “reality” with my “hopes and prayers” to deliver my current level of peace. Here are the nonlinear, six steps I took to reach peace with my daughter’s diagnosis.

1. I cried. A whole lot. In the many hospitals. At the doctor’s office. After birthday parties. After IEP meetings. I hurt not because of lack of love, but because I worried what her life would be like as someone who is different. I was well aware of how the world often treats those who are different.

I thought the tears were defeatist and showed my weakness as a mom. I didn’t know their healing power. Those tears were a release, a salve to my wounded heart.

2. I read. A lot. Anything I could find related to sign language, hypothyroidism, and Down syndrome. I read every book on sensory integration I could find.  I researched therapies. I even did the medical Google searches, trying to understand the cause of Down syndrome and what therapies were available. The more I read, the more I learned that no one could really define my daughter, because every child with Down syndrome is different.

3. I acknowledged my fear. Deep down, I was very afraid. How could my nonverbal child (now a teen) survive in a world that thrives on verbal communication? Was she angry because she couldn’t express herself? How would she ever work? Would she ever be truly independent? Back to number 1. I acknowledged my fear with the clause to do something about it. Then…

4. I started writing. Tucked on a dusty bookshelf are the beginnings of my memoir. I’m an introvert. My home is my sanctuary. I’m not naturally “peoplely.” Joining a Down syndrome support group was somewhat counterintuitive for me because of my personality. So I started writing. Writing was my release and my therapy. I was able to express and share my story, so other parents could have confirmation.

5. I found love. As cliché as it sounds, it was my happy beginning. I met my husband seven years ago. He represented the epitome of calm and peace, from my somewhat chaotic, unpredictable life. He promised to love my sweet daughter as his own, and he still does. And when 1 and 2 occur, I have his support and advice. Or if there is no advice, I at least have a hug.

6. I let go of guilt. Nothing I did “caused” my daughter’s Down syndrome. I wanted and prayed for a healthy baby throughout my pregnancy, and I received a healthy baby, even though it took us longer to reach health. She may not be seen as “perfect” by the world’s definition, but she is wonderfully made to me.

So how can other moms and dads find peace with a medical diagnosis? Here are my humble suggestions:

Cry when you must.

Feel what you feel. Let your tears fuel your fire to advocate and fight for your child.

Fight fear with research and exploration.

Ask questions. Don’t accept every answer. Use your intuition. Get a second and third opinion. Then make a plan. And if that plan doesn’t work, create a new one. Every child is different and no doctor can predict a child’s outcome with 100 percent certainty.

Discover what motivates you and gives you release.

Take time for you. Find a hobby or something you enjoy doing. Take care of yourself. Laugh. A lot. Even when it hurts.

Use support.

Find someone who loves your child just as much as you do. It doesn’t have to be a spouse. It can be a friend or trusted neighbor. Even if they can’t “fix” the challenges you’re facing at a particular moment, at least open up and talk to someone. And if words don’t come, just try a hug. It really is powerful.

Avoid negativity.

I mean those who speak “gloom and doom,” such as, “How will you make it with a child with special needs?” Yeah, those types. It’s OK to hope and dream.

Throw guilt out the window.

Life isn’t perfect. Things happen outside our control sometimes. Embrace the here and now and resolve to be guilt-free. Even if finding peace takes you 11 years, it can happen.

A version of this post originally appeared on KeliGooch.com.

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Behind the Scenes With the World's Most Famous Model With Down Syndrome

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A Letter to My Son With Down Syndrome on His 2nd Birthday

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Dear Anderson,

The first year of your life was a whirlwind. It was the year of new: a new baby, a new diagnosis, a new heart, new terminology, new weekly appointments, new looks from strangers, new sorrows and new hope.

The second year of your life, well, wasn’t.

mom holding son with down syndrome on birthday

We settled into our new title of special needs parents. We took dozens of classes to learn how to help you best. We got used to the weekly appointments and now even look forward to them. We return inquisitive stares with inviting smiles — open to conversation if it should come.

Your first year we learned a lot about you. The second year of your life was one where we got to know you.

baby with down syndrome in football jersey

Most moms could do without taking their 1-and-a-half-year-old on multiple errands, but not me. I like bringing you wherever I can because you, my love, are a joy-spreader. You have a wave and a beaming smile to all you come across. You make the days brighter and hearts grow wider.

And I’m not saying you don’t have an opinion about things. You most certainly do. You’ve perfected the head shake when your answer is “no.” You certainly don’t like that I won’t let you crawl on waiting room floors or when your food doesn’t come out fast enough.

I like that you’ve got spunk in that gorgeous heart of yours.

If you’re in your teenage years reading this, and maybe you don’t like how your extra chromosome makes you different from your peers, I want you to remember this: I wouldn’t change a thing about you.

Maybe that doesn’t mean much coming from your mom, but hear me out. When we first learned you had Down syndrome I was determined that it would just be a part of you, that it wouldn’t define you. Let it. Because here’s the thing — that extra 21st chromosome is what makes you, you.

mom holding son

This year my son, I have fallen in love with you for all that you are. I hope you always see in yourself what I see in you: a guy who is truly unique, who has an abounding capacity for fun, a love for learning, who has fierce love in his heart, and who has endless possibilities in front of him.

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