To the New Moms of Kids With Down Syndrome: It Will Be OK

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During my third pregnancy we found at the 20-week ultrasound we would be adding another boy to our family! Everything was going smoothly until the ultrasound technician couldn’t see something on Charlie’s heart. As a mom of two children already, staring up at the screen trying to see our baby’s heart I knew something didn’t look right. The ultrasound tech was asking me questions I had never been asked in an ultrasound with my other children and things began to feel really awkward. The technician was cold and never smiled once. Briskly she said, “It looks like your baby might have Down syndrome.” She got up and left the room. I was trying hard to be brave, not cry and let those words sink into my heart.

Down syndrome? I knew nothing about Down syndrome.

The doctor came in and urged us to come back the following week for another ultrasound to see if we could see all of Charlie’s heart. He was a kind and compassionate doctor. I have thanked God so often for that man! The conclusion was that what we were looking for in Charlie’s heart couldn’t be found because it wasn’t there. Charlie had three chambers instead of four, along with a cleft valve. The technical name for his heart defect is called atrial septal defect (ASD), which is the most common heart defect among babies with Down syndrome. We were told if he survived he would need open-heart surgery.

A few weeks later we saw a pediatric cardiologist who confirmed Charlie would be born with a heart defect. I also took a blood test that confirmed Charlie would be born with Down syndrome. When the geneticist called with the blood test results she said, “Hello, Nichole, I am calling to give you the results of the DNA test that you took last week. Unfortunately, your son will be born with Down syndrome.”

Unfortunately? My son?

Oh the thoughts that were racing through my mind at that moment. Why do people presume Down syndrome is unfortunate? This is the mindset that scares people into thinking their child doesn’t have worth. This is the mindset that makes the abortion rate what it is in women who receive a prenatal Down syndrome diagnosis! The only thing unfortunate in this situation was the geneticist’s sorry attitude towards my son’s life!

From that point forward the pregnancy was considered a “High Risk Pregnancy.” We went to ultrasounds almost every week to monitor Charlie’s progress. We were told most babies with Down syndrome do not make it to full term, which could complicate the matters with Charlie’s heart. Our perinatal doctor and pediatric cardiologist were very gentle but honest in saying they could not guarantee our son would live after he was born. This was extremely difficult to bear.

Maybe you are reading this today and you have received a Down syndrome diagnosis and you are filled with fear or worry for what the future holds for your child. Perhaps you feel inadequate to take care of the needs of a child who will have medical complications or need extra help. Maybe you think you wont be “enough” for your child. Or maybe you are feeling guilty for being scared and overwhelmed by a lot of new information. Well, I’m here to tell you all of the above is completely OK and normal to feel! I believe I can safely say, most of us in this same situation have had similar thoughts and felt the same way.

Breathe.

There is a lot of “bad” and “outdated” information out there about Down syndrome. And not to mention, many doctors who present Down syndrome as “doom and gloom.” You would think by now this would not be the case…but it is.

 

Doctors and professionals can tell you a lot of statistics, numbers and facts — and a lot of it doesn’t sound very promising or pretty. But do you know what they won’t ever be able to tell you? They won’t ever be able to tell you what your child’s favorite color will be or describe their love for bananas or how on their 1st birthday they will cry because they were afraid of the candle. They won’t be able to describe how music makes your child’s face come to life! They won’t be able to describe the love you feel the first time you see your sweet baby’s face and kiss their fingers and toes!

They won’t be able to tell you your child, who is born with a disability, will impact their siblings in a profound way, instilling compassion, patience and love for others.

And they definitely won’t be able to tell you this child — although born with a broken heart or medically fragile and an extra 21st chromosome — this child, the one chosen for you, will teach you how to love deeper and stronger than you could have ever known was possible. Your child will teach you the meaning of real, true, deep love. The kind of love that fights for what is right, stands up for the truth, no matter the cost, and helps you to reach down and become resilient like no Mother or Father has ever been. This child, this sweet babe, will teach you to see love in a different light. The kind that keeps hoping and never giving up for the good things in the world! This child, although different from the rest, will be the one who teaches you what humanity and kindness is all about.

You may very well meet some people along the way who don’t understand these things. In fact, they may even be completely oblivious to them. Believe it or not, this is an opportunity to teach others about how our kids with Down syndrome are children first. Our children, if given the chance, can teach others some really good lessons. Our children can be lights in a world that so badly needs goodness and kindness.

And perhaps you are reading this thinking, “I’m not ready to conquer the world or put my kid out there to teach people nice things…I’m just trying to accept my life has been flipped upside down.” That’s OK. Take it one day at a time. It’s OK to be scared, nervous and fearful. Let all that emotion out. Find someone who you can confide in. Someone you can be real with. You are not alone.

I would be lying if I said our lives are easy-peasy-lemon-squeezy. There are things that are difficult about having a child with Down syndrome, but I would like to say equally, there are things that are difficult with my children who do not have a diagnosis. We work extremely hard to help Charlie accomplish small tasks, sometimes for months at a time. There have been plenty of days when I have felt defeated, scared and lonely simply because we have worked so hard and seen little progress. However, the joy that comes from all of us helping Charlie to accomplish something as simple as drinking out of a straw, far outweighs the difficult parts. Charlie’s life brings us together. Charlie’s life has been essential in teaching us all patience and acceptance for each other’s abilities, good or bad.

What I want others to know about Down syndrome is that it isn’t scary. My son and your children, they are so worthy. Worthy of love and affection and of any opportunity that comes along their way. They are world changers, if only given the chance. Are you willing to give them that chance?

So, my friend, welcome to this new journey called Down syndrome. You will experience ups and downs. You will have high-highs and low-lows. You will have hard days, just like anyone who is a parent. One day, any fear or worry you have will melt away. One day you might find yourself jumping and screaming, elated with joy, celebrating a milestone that perhaps you thought was never possible and yet here you are. You will realize you are now part of a secret world full of some of the best people you will ever meet. And I believe your life will be changed…for the better.

Follow this journey at Moberly Avebtures.

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13 Things I've Learned in 13 Years Parenting My Son With Down Syndrome

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My son, Alex, has Down syndrome. He recently celebrated his 13th birthday. Now officially a teenager, we’ve opened a new chapter in that non-existent parenting guide we wish we had. To commemorate our entrance into the teen years, here are 13 things I’ve learned in my first 13 years of parenting:

1. There are few guarantees in life.

After Alex was born and I was released from the hospital to visit him in the NICU at a different hospital, I was given time alone at his bedside to bond. I almost immediately became overwhelmed with sadness, envisioning what I thought his future would be: no prom, no driving, no college graduation — all because of his Down syndrome diagnosis and the misinformation I had received. Then, it sharply occurred to me there are no guarantees in life. None. It is what we make of it. And with that, I became an advocate. We’ve learned the importance of flexibility and celebrating every little milestone. It’s my goal to help him achieve whatever it is he wants to do. He’ll get there, eventually, with the proper support and encouragement. That is something I will guarantee.

2. I am an excellent hoop-jumper.

From the time Alex was just a few months old, and probably forever, I’ve been jumping through hoops to get what Alex needs. I’ve learned an initial “no” does not always remain a “no.” To get it to a “yes” though, sometimes requires jumping through endless hoops. Fortunately for Alex, his mother is pretty stubborn, and someday I do expect to earn a gold medal in hoop-jumping from the “Disability Parenting Hall of Fame.” If not that, then perhaps a bronze in Sarcastic Blogging?

3. I will make mistakes, I will stumble, I will lose, but I will never give up.

I’m constantly learning how to be a better parent for all three of my kids. Parenting Alex, so far anyway, has proven to be the most challenging. Fortunately, we have a lot of support and resources to help us along the way. That said, I am far from perfect, and I will screw up along the way. It has happened, and will happen again. The most important lesson I can take from that is to not give up.

4. The opportunities to educate others are endless.

Not many people know a lot about Down syndrome or the disability community in general. I didn’t before Alex was born. I will ashamedly admit I was an ignorant user of the “r-word,” and I wish someone had called me out. I should have known better, but I didn’t, and I contributed to the problem. There are so many opportunities to teach our peers about Down syndrome and inclusion, and while finding the best technique to do so is tricky, it’s worth it in the end.

5. Finding your tribe is important.

Parenting takes up a lot of time, and often, we find ourselves distanced from our friends just because there aren’t enough hours in the day. This is especially difficult for parents in the disability community, as we can endure extra challenges on a daily basis. Having someone — or even a group of people — who truly understand why it takes four days to return a text, are supportive when you have to cancel plans at the last minute and who don’t judge you when you look like a zombie more often than not, are so important to have in your corner. If you have a tribe, be thankful. If you can bring someone into your tribe, do it. We need each other.

6. Introverts make pretty good advocates.

I am an introvert — I do not like confrontations, speaking in front of people or being the center of attention. I’ve learned though, that when I do have to do any of these things, I can handle it. I never thought I would have to speak up the way I have, and I know I have a lot to learn, but I’m proud of the advocate I’m becoming.

 

7. Not everyone advocates the same way, and that’s OK.

Just like we all have different parenting styles, parents in the disability community have different advocacy styles. I often feel like I’m falling short as an advocate, and catch myself comparing my actions and philosophies against others. We are the experts on our own kids, and we’re trying to do the best we can. I am trying to remember that as I continue to learn the best ways to advocate for my son.

8. Siblings are awesome.

Alex is fortunate to have two younger siblings, both of whom are becoming terrific advocates for their brother. I am always impressed to hear them stand up for their brother when he’s not being included and they are confident enough to do this without prompting. While it’s not always easy being the sibling of someone with disabilities, they do know the importance of advocacy and inclusion. They are both amazing kids and I am very proud of them.

9. Nothing is as picture-perfect as it seems.

With social media being such a driving force in our daily lives, it’s difficult to avoid feeling the pressure of presenting the “perfect family.” While I’ll be the first to tell you my household is a hot mess, I feel bad my photos and posts on social media give an illusion that everything is sunshine and unicorns. That is just not true. Each day brings many challenges, and I’m just trying to get through it all with a little humor and grace.

10. Kids are gross.

This has nothing to do with disability parenting — it’s just a fact. If I never find a booger smeared on a window again, I would be a happy lady.

11. Rest is important and that is annoying.

Caregiver fatigue is a real thing. Parents of kids with disabilities are often running on high levels of stress and exhaustion. I can’t tell you how many times, in the last 13 years, I’ve been encouraged to “relax” or “just breathe.” Sorry, but it doesn’t work like that. Even if I had the time, I don’t have the staff to cover all of the daily responsibilities which would allow me the relaxation I need. Although he is 13 years old and is growing to be more independent each day, I still can’t leave Alex unattended as I would a typical 13-year-old. It is what it is. That said, I can always tell when I’m ready to hit a wall. Aside from the obvious crankiness and exhaustion, I will earn myself a nice migraine when I’m not careful to take a break. This is also something I need to work on: more breaks and not feeling guilty for taking them.

12. The laundry will never be done, so don’t even try.

I’m constantly trying to conquer Mount Washmore, and it just never gets any smaller. At this point, as long as everyone has clean underwear for the next day, I consider it a success.

13. Being a mom is by far the best thing I have done in my life.

As frustrating and exhausting as it may be, there is always a joyous moment in my day. I wouldn’t trade being my kids’ mom for anything, not even for someone who could contain Mount Washmore. And that says a lot.

As my kids continue to learn and grow, I will do the same as a parent. They are teaching me far more than I could ever teach them. Here’s to the next 13 years!

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When It's OK to Stare at My Daughter Who Has Down Syndrome

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I wince when I catch someone staring at my youngest daughter, Willow. That’s because it hurts me. It physically hurts me. I imagine horrible things that a person might be thinking while looking at my daughter and it causes my heart to break, hence the pain. I want to just yell back, “It’s only an extra chromosome!”

But, I don’t.

Instead, I usually just snatch my littlest love up in my arms, snuggle her in tight and whisper in her ear that I love her.

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I hate it when people stare.

Hate.

Yet, I do it all the time — stare at Willow. I just can’t take my eyes off of her. But, I stare for different reasons.

For starters, Willow is beautiful; an absolute stunner. From her almond shaped eyes to her little sausage toes. From her wavy brownish, blondish, not-sure-what-color-it-even-is hair to the tiny little mole on her ring finger. From her squishy little nose to her pudgy knees. Even the scars on her chest and stomach are gorgeous in my book. They tell the story of her life, after all.

Which brings me to another reason I find myself always staring at my daughter. I’m in awe of her bravery. Not even 4 years old and Willow has had heart surgery, bowel hernia surgery, neutropenia and a cancer scare. Recent blood tests showed she has celiac disease. What a brave knight, yet I don’t see any armor! How does she do it? She’s so tiny, yet so giant. Look at her.

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Look at her!

Seriously. It’s OK this time. It’s OK to stare this time. I want you to look at my daughter the way I do. I want you to see what I see.

Yes, I know you can see Down syndrome. And yes, I know it makes Willow different. But, can you see how amazingly stunning different can be?

Do you see how you can feel her smile?

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Do you see how she dances even when there isn’t any music?

Do you see how she pushes forward when life keeps trying to drag her backwards?

Do you see how she laughs with her entire body?

Do you see how she loves? Fully and completely.

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Do you see how she lives while many of us just go through the motions?

Do you see what I see?

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If you do, I’ll be able to tell in the way you’re staring at my daughter. I’ll know. I can always spot the difference. That is, when I choose to take my eyes off of my beautiful daughter.

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5 Ways You Know You've Become Your Child's Advocate

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Five years ago, my biggest worry was buying the cutest matching outfits for my unborn twin boys. All that changed when one of our boys was born with Down syndrome.

Troy (in the back) and Hunter (in the front)

Troy completely changed our family’s perspective and set me down a path of advocacy that has changed my life forever.

An outsider may believe these changes were negative, but I continue to be amazed at how many new, unique doors have opened for me because of Troy. I continue to be amazed at how “normal” and happy our family continues to be amongst the messiness of a seemingly “scary” diagnosis. We truly are the #luckyfew!

Everyone’s path is different, even in the small world of the Down syndrome community. But I’ve found some shared characteristics amongst many of the parents of children with disabilities I’ve met.

Most parents possess that innate strength to do anything to protect their child. Parents of kids with disabilities just have to flex that muscle more often.

In five short years, I’ve become a champion for my son and his right to a life of self-determination and choice. And I realize I’m not alone. Many disability advocates can identify with the following actions, or something similar to them.

1. Your child’s personal file is larger than your own.

Troy is a healthy, smart fellow. Still, Down syndrome automatically comes with a long list of doctor appointments, therapy sessions and Individualized Education Plans. All of this has been compiled on hundreds of pages in two giant 3-ring binders.

Experience has taught me you don’t know where you’re going unless you know where you’ve been. Troy’s records help me quickly reference what’s happened in the past, so I can advocate for the best future possible.

 

2. You can recite federal, state and local laws that impact your child, and you often know more about these policies than some experts do.

You can recite the meaning of countless acronyms: IDEA, IFSP, IEP, FAPE, LRE, SSI, BIP, ADA, ABA, UDL, ASL.

You know your child’s rights under the law, and realize in many situations it’s up to you to see that laws are enforced. Personally, I’m working with my Ohio state legislator, Niraj Antani, to introduce a bill that would end organ transplant wait list discrimination for individuals with disabilities. Rep. Antani seeks advice from disability advocates on this subject, because he realizes we are the experts.

In terms of the recent Senate health care bill, Better Care Reconciliation Act (BCRA), I’ve been advocating tirelessly alongside fellow disability advocates to see that Medicaid is not cut. Many legislators are unaware of the important impact of Community and Home Based services Troy and other individuals with Down syndrome receive through Medicaid. It’s our job to educate those in power on the power of legislation and how it’s revolutionized the disability community in the past generation.

3. You’ve likely become fast, close friends with complete strangers.

Social media is a powerful force in the disability community. It’s brought together like-minded advocates from around the country to rally for a common cause. I have dozens of friends I’ve never met in person, but feel a special bond with because of Troy. When I meet these fellow parents at conferences or advocacy meetings, it’s like meeting a distant loved one. There’s an instant connection and a desire to share your path with others like you. It’s what makes us the #luckyfew.

4. Your hobby or new career path includes advocating for your child.

I have interviewed and spoken with many amazing parents, siblings and family members who have transformed a seemingly scary diagnosis into an opportunity to change people’s perceptions and create opportunities for their loved ones. Everything from volunteering for their local Down syndrome association to blogging about their experience to starting a business that specializes in special needs planning and marching on Capitol Hill.

Before I had Troy, I taught middle school history and assumed I would go back to teaching once my twin boys were in school. Now I’m applying for the Council of Parent Attorneys and Advocates Special Education Advocacy Training to become an advocacy expert. My number one priority in doing this training is ensuring Troy gets the education he needs and deserves, but I would also love to help other families along their journey. I’ve always wanted a job that serve others, and I’m proud to say Troy has helped me continue on this career path in a new and surprising way.

5. Your vacations include meetings with your legislator or advocacy calls.


#PureMichigan

We just spent a week in Michigan with family and I really wanted to turn off all things advocacy. I was feeling disability advocacy fatigue big time, especially with the endless fight to #SaveMedicaid. I did a fairly good job of this with trips to the lake, shopping and running a race with my mom. Still, I couldn’t help but call a fellow disability advocate friend to find out about an important advocacy meeting she had while I was gone.

Even my vacations have been planned around advocating for Troy. We coordinated a trip to see family in California with the National Down Syndrome Convention. I visited my favorite city, the District of Columbia, this past spring to advocate on Capitol Hill.

Of course, you can take a totally different path and still be your child’s best advocate.

I have friends who purposely disconnect from any disability-related advocacy efforts. I can respect and understand their choice to do so. In the end, it’s about loving your children for who they are and supporting their path to a life of self-determination and choice. There’s many ways to get there. Which path have you chosen?

And learn more about our advocacy journey and how you can advocate at www.inclusionevolution.com

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To My Childhood Self, From a Doctor Whose Brother Has Down Syndrome

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Dr. Kishore Vellody is a pediatrician and medical director of the Down Syndrome Center of Western Pennsylvania. He is also on the Executive Committee of the Board of the National Down Syndrome Congress. In March 2015, he created the Dear Self About Down Syndrome blog where families can share their personal experiences with their loved ones with Down syndrome. The blog has been viewed in over 40 countries, including many where there is limited access to care for children with Down syndrome. You can contribute your story here. Below is Dr. Vellody’s letter to himself.

Dear Childhood Self,

You remember so well growing up with your brother Das. You and he were so close in age, and you both always seemed to enjoy being together. You didn’t realize there was anything different about Das at all until someone else pointed it out. You didn’t know what to do with that information – it didn’t make sense!

You spoke with your parents, and they confirmed that Das indeed had some special challenges you did not have. You became so upset because you never realized that was why Das struggled so much more to learn things than you did. You just thought that’s how all brothers were! It just always seemed to take Das a little bit longer to be able to pick up the games you were playing, but he always did. All through his education, you learned patience by watching him struggle, persevere, and then ultimately accomplish what he wanted to do. And then you saw the unbridled joy in his face when he finally got to say “I did it, ‘Kis-ow!’”

As you got older, you started to wonder about the fairness of it all. Why did Das have to struggle with so many things that came so much easier to you? Why would God make a child have to go through all that? Your struggles reached deep into your core and rocked you spiritually. You began to doubt God’s existence altogether for so many years.

Then, in what you can only describe as a miracle, you began to see all his qualities that were always there but taken for granted. You began to see Das’ ability to love everyone unconditionally. You began to personally experience Das’ very real forgiveness whenever you messed up. You found that Das resembled your view of God more than any other person you had ever met. It was then that you realized you were the one born with one chromosome too few, and Das was born with just the right amount. You came to believe God’s version of perfection was different than your own.

Hang in there, Kishore! God’s got quite a roller coaster ahead of you, and the exhilarating time is on the way. You are going to get a dream job as medical director of a busy Down Syndrome Center, where you will be able to indirectly give back to Das by caring for thousands of children with Down syndrome. You will be invited to join the board of the National Down Syndrome Congress and get opportunities to share your medical and personal knowledge about Down syndrome with families all over the world. You will have tears in your eyes when meeting new parents who say that nobody else had yet congratulated them on the birth of their beautiful baby.

You are going to bring hope into the lives of not only those parents, but also to siblings in ways you could never have dreamed. And after many struggles of your own along the way, you will hear yourself exclaim, “I did it, Das!”

Sincerely,

Your Adult Self

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To My Friend Who Just Received a Diagnosis for Their Child, I Will Be 'That Friend'

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My dear and blessed friend,

As you go through this incredible journey, I want to let you know two things: first, I am so thrilled for you and so happy you get to experience motherhood right along with me; and second, I will be “that friend” for you. I will be that friend who knows what feels like complete darkness, who understands irrational fear, who has had the unspeakable thoughts, who can celebrate arbitrary milestones because the “baby book” ones don’t really apply.

Right now, you might be a scared mamma. You’re trying to make sense of a diagnosis and to anticipate what this new, unexpected life will bring. Here is what I can tell you:

You might go through days when you are scared out of your mind. Not in a typical “new parent” kind of way, but in a heart-wrenching, panicky, gut-splitting way. I will be the friend who understands. I’ve been there. I’ve shared those thoughts. I’ve cried those tears.

You might spend an unplanned amount of time in a hospital. You will stand in the tiny shower with tears streaming down your face because you don’t know what to do next. You will question your ability to be a good mother because you forgot to write down the name of every doctor you talked to. You will rub endless amounts of hand lotion into your chapped skin, dry and bleeding from so much hand-washing. I will be the friend who understands, the one you can message while the baby finally sleeps. Because I know what your other mom friends don’t. I know the feelings of inadequacy, the sting of having to wait another day before discharge. I’ve felt the physical pain of my child being stuck for the umpteenth time in a tiny vein, or being wheeled off to another lab for another procedure. I’ve been engulfed by the loneliness known to moms like us, forgotten just a little bit by our counterparts with their healthy kids sleeping comfortably in their beds, with baby monitors instead of heart monitors and penguin-shaped humidifiers instead of oxygen tanks.

You will become your child’s greatest advocate. But that might come after what feels like a very dangerous learning curve. You might feel stupid and question yourself more times than you can count. And then you will rise. I will be the friend who recognizes that path to knowledge. I’ve searched online till my contacts fell out because they dried up from hours spent behind a screen. I’ve called hospitals around the country for second and third opinions, even though our hospital is nationally ranked in the top three. I’ve stood my ground against doctors and specialists and nurses who assured me they knew best. And I was right. And I learned. And you will, too. But as you do, you will need support from someone who has learned and risen, and I will be that friend.

 

People will say, “every child has special needs,” and you might want to play that game. You might want to compare, but the tears won’t let you get the words out. You might want to throat punch them, but you will know they mean well and are trying to “normalize” your situation. You will hold in a hundred thoughts and tidy little inoffensive comebacks, but you will want to let them out later. And I will be there. I will be that friend. And you can one-up me all day long, and I won’t bat an eye.

And please hear me, nervous mama, you will have things in your head that most of your friends can’t relate to — acronyms to fill a three-ring-binder, helpful tips you may never get to share (make sure to tell the power company you have an oxygen tank; the surgery waiting room has the best coffee; when a lineup of docs follow you into the family update room, it’s probably not good news), terms that shouldn’t apply to children, much less your own (life expectancy, mortality rate, special needs trust, experimental treatment/drugs), smells that never go away. You will want to toss these into daily conversations because some days they’re all you think about. But you know you can’t. I will be that friend. I’ve heard those words, I’ve kept those records. I’ve looked around for people who need to know my vast wealth of information on one diagnosis and a bunch of complications. You don’t have to start from zero with me, and you won’t have to wonder if I can relate. I can, and I will. I will hold your hand, and I will listen to your trivia and to your fears. You can unload them on me, and I won’t be afraid.

This baby you’re carrying will change you. You will keep your friends and your support system, and you will have celebrations and fears that all parents have. We will all be there for those. But this baby will change your circle. You will feel isolated, you will cry, you might be ashamed of your thoughts. You will need someone who understands that without judgment. Let me be that friend. Let me get your three page text, and rub your slumped shoulders, and hold your cracked hands, and hear your broken sobs. I can do that. I will be strong for you. I will cherish the smallest triumphs with you because I know you fought for them. I will see beauty in all of it, and I will delight in your miracle.

I will be “that friend” that few will be able to be. I won’t minimize, judge or recoil. I will understand, from the very depth of my soul, how this journey goes.

And I will be there.

I will be that friend.

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