We all have those times in life when we look back at an event or moment and wish we had a picture of it. Sometimes there are moments that you just wish you had something to look back on.

Angela Conrad.2-001

I am so thankful someone captured this picture for me. Many people would look at this picture of my son, Trenton, and me embracing and think nothing of it. To most parents, it’s just a simple mother/son moment. However, to me, it’s much more than that.

My son has severe autism. On most days, he’s unable to even look me in my eye. Therefore, a simple gesture of giving me a hug is a very rare occasion. I can count the times on one hand he has put both of his arms around me and embrace me like he did in this picture. 

A simple gesture most parents take for granted is nothing less than a miracle in our house. There are days when I long for a hug, a moment of eye contact, a kiss, a simple touch or even just a smile. My motherly body craves those simple gestures from my children like a newborn baby craves his mother shortly after birth.

In that moment in the photo, I am truly taking it all in. I wanted to hold him forever. My eyes were closed as I tried to hold back the happy tears. I never want those moments to stop because the next moment could be months away.

A simple hug is what gets me through my days as I anticipate when the next one will come. A simple, rare hug makes all the sleepless nights, tears and daily challenges worth it.

This picture is much more than a rare moment; it’s a symbol of my love to my son with severe needs. It doesn’t matter how hard things can be from time to time, I’m right there by his side each step of the way. We embrace his challenges together and we always will.

This picture speaks a thousand words, but, at the same, it hides so much. No one would know from looking at it that Trenton and I were both up the entire night before. I was chasing Trenton around our house while he displayed his night-time behavior due to his autism. The picture doesn’t reveal that he’s a nonverbal child with severe sensory problems and has been in therapy since he was 18 months old. No one would know that behind this picture is a true fighter and a little boy with a lifetime of challenges ahead of him.

We are true warriors in our house. We embrace each moment, live minute by minute and do what needs to be done daily. Behind our struggles and tears are amazing moments. We thank the good Lord for the good times and welcome the bad times with open arms. Somewhere in between those times are moments captured in time forever like a simple hug that comes from nowhere.

Follow this journey on Two Brothers, One Journey.


Illinois is well on its way to becoming the first state to allow autism as a qualifying condition for medical marijuana use.

On Wednesday, Oct. 7, the Illinois Medical Cannabis Advisory Board recommended eight conditions and diseases be added to the list of 39 that are already approved under the Illinois Compassionate Use of Medical Cannabis Pilot Program Act. Those conditions are chronic pain due to trauma, chronic pain syndrome, chronic post-operative pain, intractable pain, osteoarthritis, irritable bowel syndrome, post-traumatic stress disorder (PTSD) and autism. Two board members voted against recommending cannabis for people with irritable bowel syndrome or autism, according to the Chicago Tribune.

The director of the Illinois Department of Public Health (IDPH) must still approve the recommendations. If approved, Illinois would be the first state to allow medical marijuana use for autism, The Associated Press reported. To use cannabis, children must have signatures from two doctors in Illinois, and adults must have one.

“It would give clinicians and families another option to manage the symptoms of autism,” board chair Dr. Leslie Mendoza Temple told the AP.

The 39 conditions and diseases that have already been approved to qualify a patient to use medical marijuana in Illinois, with a doctor’s signature, include cancer, glaucoma, HIV, hepatitis C and multiple sclerosis.

Last month, the state health department rejected 11 new conditions recommended, including PTSD, with Governor Bruce Rauner’s office saying it was premature to expand the pilot program before the drug goes on the market in the coming months, according to the Chicago Tribune.

The state has reported that about 3,100 patients have already been approved to buy the drug under state law, and they will begin receiving their patient ID cards by the end of this month. People with the newly recommended conditions need to await approval before they can submit applications to participate in the program.

I’ve always garnered strength (and the best info!) from a community of dedicated moms. Noticing a void amongst the fathers who must crave that same sense of community, I asked for a dad to submit his perspective of parenting a child with special needs. No one was more surprised than me when my own husband sent this.

Whether by choice, influence of society or just by the sheer fact that I am a handy fellow, I’m often posed with the question, “Can you fix it, Daddy?”

A simple question on the face of it. Glue this, bend that, reattach (insert random doll appendage here). But in reality, it’s a much deeper question for a dad. Being a dad is more than just fixing toys. It means being caring, tough, loving, stern, thoughtful, funny and strong all the time, and sometimes all at once. It means being a good role model in your thoughts and actions, a role model of how to love and treat your family and significant other. It means losing sleep and adding (or in my case losing) gray hairs when you realize you slipped up and didn’t have all the right answers. When you let your family feel pain or worry. When you failed to “fix it” whatever today’s “it” happened to be.

This is the daily struggle for a dad. How to keep his family happy, healthy and provided for. How to balance demands from work, home and family — again, all the time and sometimes all at once. You learn to be a master of multi-tasking, hoping you’ve remembered everything, only to realize you forgot to grab bread and milk on the way home. You internally curse yourself and vow to try harder tomorrow.

A dad’s work is never done. If you’re like me — a dad to a child with special needs — the pain and struggle are always front and center. You quietly burn inside watching your child experience relentless seizures. You feel you heart shatter when you watch their siblings cry and feel helpless. You feel like failure when you see sadness in your wife’s eyes. But these pains only strengthen your commitment to try harder, to stay strong, to love more. If we seem distant or quiet, we’re not. We’re thinking a thousand different things a thousand different ways. Ways to help, ways to love, ways to fix the troubles we face. When something needs fixing, we want to be the one you turn to.

To feel true joy as a dad, you learn it must come from your family. It comes from seeing your children discover new talents. The school play, a band concert, or even a homemade volcano. It comes from watching them set and achieve their own goals. Joy comes from watching your spouse’s hobbies and talents take off. The light in your child’s eyes when you glued their favorite figurine. A family day at the beach filled with laughter and fun is the fuel that dads run on. Every day you search for these moments. When you find them, you grab onto them fiercely. Because you know there are some days that are just plain awful. You need to tap these memories to keep yourself moving and maintain a positive outlook for yourself and family.

We often get caught up in making things perfect. In reality, when your child asks you to fix something, the expectation is only that you are there to help. To lend a hand, an ear to listen, a shoulder to cry on. It doesn’t need to be made whole or perfectly like new. They just want to know their problem is important to you and that you are there for them. Which of course, as a dad, you always will be. “Can you fix it Daddy?” I hope so, sweetheart. I hope so.

Follow this journey on Seizing Hope.

On a Monday morning, after another night of experiencing contractions off and on again, I was ready for a pedicure to distract me from the pain that was coming, and because I probably wouldn’t be getting one anytime soon after the baby arrived. My mom and I arrived there at 11 a.m., and I picked out the best OPI color, Pink Flamenco. As my toes dried, I started to feel the contractions coming on stronger.

I paced the back of the salon and took some deep breaths. I noticed a woman getting a manicure who kept looking over at me and smiling. This is not unusual when you are pregnant. A pregnant belly is a magnet for older woman to smile and ask questions. After meeting eyes with this woman, I told her I couldn’t have my baby in the nail salon. She said, “Actually, you could. I am a labor and delivery nurse. Where are you delivering at?” I responded with the name of the hospital, and she said she had just finished her shift there. She told me if I had the baby that week (and she confirmed I looked close at that point), she would be there. She just had foot surgery and said she probably wouldn’t be my nurse, but she would definitely look for my name when she was working.

Now fast forward to Tuesday at noon after my son, Jack, was born. The morning was filled with a doctor’s visit and family visits, and the news of Jack having Down syndrome was settling in. We still didn’t have much information on his physical condition. Jack was still in the baby warmer in our room. I asked my husband, Chris, what his emotional state was at that point, and he said he was so unsure of what he was feeling, if our baby was going to be OK, if he was not going to make it — just a sense of confusion.

Diane, the nurse from the nail salon, saw my name on the list and came down to visit our new baby boy. She came in knowing Jack had Down syndrome and said, “You grieve the baby you thought, and you love the baby you were given. I came down to meet your beautiful baby.” At that moment, as we looked over him in the warmer, Jack started choking. He started gagging for air. Diane immediately asked who our nurse was, told Chris to push the nurse button, turned Jack downward and started firmly patting his back, then paged the NICU and said the word STAT. She told us to pull the cord, and her firm pats turned into forceful blows. 

Flashes of my first-aid training came flooding through. If you have ever been trained in it and then see it done, it can be frightening. Jack was turning blue and a hue of purple. We stood there in silence as three people from the NICU ran into our room and tried to get Jack to breathe.

He was taken to the NICU for monitoring and for some tests. They brought both Chris and I back to sit with him. I was emotionally numb and felt like I was going to throw up. I remember sitting in the rocking chair and thinking to myself, I don’t want to be here. I can’t do this. I said to Chris, “I just need to go lie down. Are you OK if I go back to the room?” Again, Chris stayed with our baby and watched as they stuck tubes down his throat and did numerous tests on him. When he came back, I could see it in his body he was broken. Tears streamed down his face.

After a couple hours in the NICU, the neonatologist came and talked to us about Jack’s abdominal scan. It was confirmed that everything was perfect, that he was choking on fluid from being in the womb and could not breathe. His echocardiogram came back normal, like a typical newborn. Some children with Down syndrome are born with congenital heart defects.  Jack was a healthy newborn with an extra chromosome.

Diane was not our nurse. Diane was just coming to say hello. Diane met me the day before because she saw I was in labor. I talked to her for 10 minutes, and now she saved my baby’s life. This was not by chance; I believe she was an angel. How I am thankful my parents taught us to be personable, acknowledge others, make a new friend and realize God can speak to you through others even when you aren’t expecting it. I believe God taught me something really big that day never to underestimate when and where God can show up… and that I need to get more pedicures!

So who are you going to acknowledge today that you might not have taken the time to before?

Follow this journey on Jack’s Basket.

Hey Sarah, it’s me! I mean, it’s you. The older, wiser you from 14 years in your future. I have a few things to share with you, things you really need to know. I’m not trying to change your destiny, just trying to make the next 14 years a smoother, safer ride.

It’s September of 2001. You’re 23 years old. You just graduated from college, bought your first car and are working at your first job. You’re not a fan of your new job, but don’t worry. A better job is not far away. You’re in love, but the relationship is kind of rocky. I wish I had better news, but he’s not “the one” for you. The road you’re on leads to disappointment, depression and heartache. Get off it as soon as you can — the longer you wait, the harder it’ll be.

The real reason I’m writing is to discuss your depression. I know exactly how much it sucks. And unless you make some changes, you’re going to experience it over and over again for the next 14 years. It will be overwhelming and at times you’ll be a danger to yourself. But I’m here to tell you that you will survive — it gets better. Even when you’re at your lowest, you have friends and family who care about you. Reach out to them and let them help you. No matter what, know your life is worth living. I’m counting on you to not give up.

And I’m so proud of you. After 11 years of suffering in silence, tomorrow is your first appointment with a psychiatrist. Your new doctor is going to diagnose you with major depression and put you on a selective serotonin reuptake inhibitor (SSRI). That would be an excellent choice…if you actually had major depression.

Let me save you years of misdiagnosis and mistreatment.

You don’t have unipolar depression. You have bipolar depression. The depressive symptoms are the same, so it’s hard to distinguish between the two. And you haven’t yet experienced mania. But trust me, it’s right around the corner.

Like many people with bipolar, traditional SSRI antidepressants can trigger manic episodes. And as soon as you start taking that drug, mania will rear its lovely head. Your manic episodes are periods of euphoria, recklessness and impulsivity. You’re incredibly creative and productive during these periods even though you don’t sleep. Your mania looks different from the typical mania because to most it appears like you’re in a really good mood. Out of habit you hide the reckless and impulsive decisions you make. Unfortunately, this is going to make proper diagnosis much more challenging.

Mania makes you feel immune to consequences, and to be honest, you’re going to do some pretty stupid things while you’re manic. All your choices are going to seem like a good idea at the time. Trust me, they weren’t.

I know you won’t believe this right away. You’re probably in denial.

So far your only personal experience with bipolar is your sister’s high school friend. She was fun to be with when she was manic, but dangerous when she was depressed. That’s not you; your bipolar is different. Everyone’s is a little different, and it’s nothing to be afraid of. You’ll probably have to figure it out the hard way.

Be open to an alternative diagnosis when it happens. When you finally accept you have bipolar disorder, see your doctor and start on the path towards stability. If you do these things, your next 14 years will be a joy. If you don’t, I’m pretty confident you’ll end up right where I am, this time writing a sharper, more strongly worded letter to your younger self.

Wishing you a happier and healthier future.

Follow this journey on Bipolar Bytes.

There are moments in your life that are seared in your mind. Even though some of the finer details may fade with time, your heart is permanently branded with the memory. This is the story of one of those encounters.

In early 2003, my husband, Matt, underwent a stem cell transplant to eradicate the mutant white blood cells coursing through his veins, aka leukemia. For those who are blissfully unaware of the process, let me provide you with a brief timeline of our experience:

What you don’t know will hurt you: The presentation of the 150-plus-page quick reference guide describing the ins and outs of a transplant.

Getting to know you: There’s test after test to prepare the candidate for the procedure, including, but by no means limited to, multiple scans, blood work, full-body measurements and psychological evaluations.

End of the world as you know it: A combination of total body irradiation and chemotherapy to exterminate the diseased bone marrow. The patient’s native immune system is severely weakened.

Knowing what’s good for you: Harvesting and transplanting of the donor’s stem cells. In Matt’s case, his sister was the gracious benefactor.

Don’t know what hit you: While waiting for the donor cells to graft into the recipient’s immune system, the patient is extremely vulnerable to life-threatening infections. He or she is moved to an isolation room for protection. My story takes place during this precarious time.

Not knowing whether to laugh or cry: Matt was given a 60 percent chance of not making it through the ordeal. It took eight weeks to see if he would overcome the odds.

During Matt’s entire hospital stay, he was never left alone. I would arrive each morning by 6:30 to catch his doctor on his early rounds. One or both of his parents would come each evening to relieve me and spend the night. The nurses at his facility were some of the best in their field, but with an entire ward of critical patients, they were stretched thin. Our devoted trio strove to pick up some of the slack. There was always someone there to hold Matt’s hand, fetch the vomit bucket or help him to the bathroom.

The days in isolation were some of the darkest. The patient can feel like they’re dying. All traces of their original bone marrow have been annihilated. This grueling prep must be completed in order for the donor stem cells to seize control. It’s the medical equivalent of a hostile takeover.

Waiting for the new cells to take root and multiply is like trying to make an industrial vat boil using only a birthday candle. Slow and tedious, you are constantly worried the candle might burn itself out before the water even reaches a simmer.

I would usually grab a light lunch to eat back in Matt’s room. Outside food, however, was not allowed in the isolation wards. Stubbornly glued to Matt’s bedside during this perilous phase, I skipped nearly every meal. When this absence of nourishment was combined with my lack of sleep and constant worry, I was in danger of needing my own hospital bed.

Whenever you spend any length of time in a medical facility, it doesn’t take long to know most of the nursing staff on a first-name basis. Most of them will take care of your loved one up to a week at a stretch. There are a few, however, that only appear for a day or two. These fleeting engagements can prevent you from ever learning the names of these particular providers of mercy. Such is the case of the nurse with kind eyes.

She came in one morning, introduced herself (again, can’t recall her name) and tended to Matt. She popped back in each hour just like every other nurse had been doing for the past week. After about five hours, she asked if I was going to lunch. “No,” I replied, “I’m afraid to leave.” The nurse looked a little concerned, but nodded as she left. I had been asked that question many times and thought nothing of it.

An hour or so later, she returned with a small paperback book in her hands. “Go eat. You need your strength,” she instructed. “I’m taking my lunch in here. He won’t be alone.”

She was of Asian descent and her gaze was sympathetic. Beyond that, I’m unable to recall her appearance. Nevertheless, I will never forget the effect she had upon me. My mind had been hissing with incessant anxiety. In the short amount of time it took to reach the cafeteria, I was able to settle my fears down to a steady purr. The kind-eyed nurse took on my “burden” for less than an hour, just long enough for me to rejuvenate my stamina for the weeks and months ahead. Her act of compassion still resonates more than a decade later.


The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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