I am talking with Stephanie Hanrahan today on the podcast, and it is an incredible conversation because she is so vulnerable and unafraid to talk about the hard areas of her life. She shares the personal story of having a husband with a chronic illness, what it’s really been like being a mom of two kids on the spectrum, and how she achieved success by opening up and unashamedly sharing her truth through her website Tinkles Her Pants.
How She Found Her Bravery to Be Vulnerable
It all goes back to the day her daughter Campbell was diagnosed with autism. She came home, put her down for a nap, put her head in a pillow, and screamed and cried. She had a visceral reaction to how their lives were completely changing. Her husband wasn’t home and she felt like she had no space to release what she was really feeling, which was an intense amount of grief.
Stephanie pulled out her phone and downloaded Instagram. She didn’t even have an account at that point. She went ahead and started journaling and just wanted a space to be herself. So she poured it out onto the pages. Nobody knew about it. She was still living this perfect profile life publicly. One day, she posted a family picture on her “real page” and began reading comments about how her family was so “perfect”. It was that word that completely gutted her. People were only seeing half of her life, and not the real her. She decided maybe there was somebody else out there feeling the same things. So she made her private story public.
The Response
Stephanie’s husband has a really serious medical condition that they didn’t know about and she has the alphabet soup of issues between anxiety, infertility, and abuse. But the beautiful thing is that women began saying, “me too” after reading her blogs, but for different reasons. And it encouraged her to be more transparent because she knows she only has one voice but is speaking and representing many.
“You are not always going to get the response you want. They may not be ready to see your vulnerability. It’s not my responsibility to manage response, it’s only my responsibility to release my truth.”
Discovering a Chronic Illness
One Saturday morning, Stephanie’s husband Shawn was getting out of bed when she heard a huge thud, as he fell to the ground and hit their nightstand, which utterly shattered his spine. This incident led them to find out that he has a very rare heart condition that is chronic and will eventually require a transplant to keep living.
The doctor said that the only reason she is not a widow now is that when he broke his back, it restarted his heart.
It was a surreal moment. They didn’t expect to hear that he had an incurable heart condition. Plus, she was six weeks out from a c-section. They had to call a friend to stay with her children, and she returned two or three weeks later, forever changed.
Stephanie initially disconnected because it was the defense mechanism due to the fear that he would leave her. A wall went up and she told herself not to let anyone get closer because she’d get hurt even more. Shawn was the provider and the steady. So, many things changed. He had to learn to walk again and for a time, she had to feed and bathe him.
How Her Children Were Diagnosed
Stephanie began thinking it was autism when at a Christmas party, her daughter Campbell started flapping when she was opening her presents. She was becoming more rigid and having massive breakdowns to little things like a lost happy meal toy or her favorite episode of sesame street getting erased.
She is extremely verbal but a lot of it is scripted. So, if Stephanie said, “I love you, Campbell,” she would say it back verbatim. Her daughter would apply her scripting to get by, so there was no free thought.
Her pediatrician dismissed her for a while, but by the time she was three, there was a huge gap between Campbell and her peers socially, and that’s when she received her diagnosis.
With Eli, Stephanie’s antennas were already up because of Campbell and she knew autism could run in families. So, by the time Eli was like 12 or 13 months old, she knew he had it. He was having sensory issues with food, his speech began to become more delayed, so he was easier to diagnose. He got his official diagnosis at two.
How To Know If Your Children Are In a Good Place
If you don’t know what to do, that’s completely normal because you are navigating through uncharted territories. It might be some trial and error. Stephanie started her son at a typically developing preschool, but the same one that worked wonderfully for her daughter Campbell did not fit him at all.
You have to trust your gut, trust the people, and gauge how they are progressing. Stephanie’s kids get out of her car for school and come back in with smiles on their faces. You have to ask if your child is receiving love and feeling good and secure in these places.
“Parenthood is having a plan but being prepared to throw that plan out the window. Any new, especially new diagnosis, needs to be able to trade expectation for appreciation because the plan is going to look so different.”
Grieving Both of Her Children’s Diagnosis
Grief was an evolving experience. Stephanie has diagnosed depression and anxiety, so her grief presented as a lot of internal conflicts. She didn’t want to go to play-dates for her kids or have dinner with her husband. She wanted to watch TV in bed and block out the beauty of the word.
Grief would come in spurts, and she worried that if she was happy, that she would be dismissing her husband and children’s’ pain, so she attached shame to her feelings too.
Eventually, she realized that she was given a diagnosis for her children that they can still live with. This autism isn’t going to kill them or her. It was an invitation to live again. And her life is so much more beautiful with it now.
What Autism Has Taught Her
Most days Stephanie is thankful for autism. But it is incredibly hard. The grief still comes in waves when she thinks about her son and how she has still never had a real conversation with him.
But then she thinks about the fact that because of her kids’ autism, she has built a community with people all over the world, who are praying for them and cheering them on and celebrating their wins. What other people can say that? Their lives are already so purposeful and that is what makes her say that it is a blessing and she is happy about it.
“Don’t shame away the feelings. If you’re mad it’s okay. It doesn’t make you less of a mother. Two feelings can coexist. You can accept a diagnosis and still be really angry about it. You can be grieving your child and believe the best is yet to come. It doesn’t mean you love your child or yourself any less because you say that it’s hard. Let yourself be real about that.”
Important Takeaways
- Write down or document daily or weekly progress. Our milestones and our children’s will look different than anyone else’s, so looking back at the growth is what will help pull you through.
- Find your “I get it” people. It may not be the people in your life right now. Don’t discount the value of a virtual village. Find people who can relate to you and give yourself space to be your realist self.
- It is okay to be mad or sad. It doesn’t make you less of a mother or a person. Feelings of love for your child and sadness about a diagnosis can coexist. Don’t shame away the feelings.
- Trust your gut with your children’s happiness. Do they seem happy? Are they progressing? You have to follow your instinct and make sure that they are feeling love and acceptance in these places. Sometimes it is trial and error to find the right fit, but that is normal and it is okay.
- It can be so therapeutic to share your feelings and to communicate them. Sometimes you won’t always get the response you want, but that is okay. It is a process of growing and learning, and what is most important is that you are working on yourself and giving yourself a space to express your emotions and thoughts.
