Guest post: 10 things a special-needs mom learned (the hard way)
Laura Hatcher and her husband, Brian, have two children, Olivia, 10, and Simon, 7, and are parishioners at Church of the Nativity in Timonium, Md. As we look ahead to Mother’s Day, I invited her to write a guest blog sharing how raising Simon, who has cerebral palsy, epilepsy, and hydrocephalus, has changed her perspective as a mother. Thank you, Laura, for sharing your family’s story with us.
A few weeks before our second child was due we learned that our baby had "something seriously wrong" with his brain. In that moment I went from being a mom to being a special needs mother.
For me, becoming a special needs mother was a metamorphosis. From that moment to today, I have turned into a completely different person, as the lucky parent of a superhero child with challenges—and his amazing big sister. My priorities changed, my perspective on the outside world changed, and my hopes for the future have changed.
This was not an easy transition, and I really don't wish it on anyone. However, although every special needs mom I know would give anything to heal her child, I don't know one that would choose to go back to the person she was before experiencing special needs motherhood.
Because it's true that what doesn't kill you makes you stronger. It is also true that experience is the best teacher, and the experiences that come with parenting an extra-challenged kid can be intense, impactful, and inspiring. You learn fast because you have to. You filter out what is really important because you just don't have space for the other stuff. You find new ways to deal with stress and uncertainty and being overwhelmed, feelings certainly shared by all parents, because for you they are a constant. And, you learn how to see the rainbows on cloudy days, celebrate the small stuff, and find strength you did not know you had.
Here are 10 things I’ve learned as a special needs mom:
1. Give up the guilt.
Special needs parents elevate parental guilt to an art form. We cannot help but burn to know why our children suffer, and we constantly question if we are doing enough to help them. We interrogate the professionals, we yell at God (it's okay, God is big and can take it), and we wonder what we could have done to make bad things happen to our innocent babies. For many of us, it is a question that can never be answered. And for those of us that do know the reason (or think we do), knowing doesn't change the outcome one bit.
My son had a stroke in utero that led to myriad complications. But one of the most unnecessary complications was my deep-rooted fear that somehow what had happened to my baby during my healthy, uneventful pregnancy was my fault. Though many doctors have done many tests, and though I repeatedly asked what I could have done to cause the stroke, there have been no answers. Sometimes, said my OB, these things “just happen.”
That was an answer I found very hard to accept, and it took me years to realize what focusing on it was costing me. Spending so much time in that backwards-thinking headspace robbed me of the ability to be present or to truly move forward. It wasn’t until I stopped fixating on the "why" that I could finally fully focus on the amazing kid in front of me.
2. A little compassion goes a very, very long way.
When I am having a rough time, even a small kindness can give me the encouragement I need to keep going. A stranger sees my melting-down kid and lets me go in front of him in the check-out line (with an understanding smile). I'm anxiety ridden and vent on Facebook that I could use some cookies, and they appear (still warm) on my doorstep an hour later with a note that says my family is loved. A hospital tech doing a blood draw on my frightened young son takes her time with us and gives him a toy car from a stash she bought with her own money. A teacher has coffee with me on the weekend to brainstorm about how to make things better for my child. The school bus driver carries my son into the house because it is raining. A friend makes me dinner. A doctor discharges us quickly from the hospital because she has an autistic son and knows how important it is to get home soon....
I keep these kindnesses (and many others) like pearls on a necklace that I can take out and hold when the going is tough. Remember that some disabilities are invisible, that heartache can't be bandaged, and that we are all fighting a hard battle. Be kind whenever you can, and know how much even the smallest act can glow for a person through the gloom.
3. You're going to worry (a lot). So learn to do it constructively.
Part of parenthood is worry, and it is fair to say that the worrying is compounded exponentially when you have a child who is chronically ill, or has a disability. You hold onto hope, you try to focus on the positive, you tell yourself to stop worrying so much, maybe you even get some professional help. But—let's be real here—not worrying is just not going to happen.
So, learn to focus all that negative worry-energy into positive action. I first try to do everything I can to learn about it. Then, I make lists (lots of them) full of things to DO—places to learn more, people to talk to, plans of action to create and implement.
For example, a little over a year ago I was terrified that my little guy would have a dangerous seizure in his sleep. I worried about this so much that I didn't sleep. So, I used some of this sleepless worry time to research and quickly found out that there aren't any FDA-approved seizure detection devices (shocking, I KNOW!). More research led to phone calls which led learning about seizure-response service dogs, and through continued conversations with doctors, nurses, and engineering students, I discovered that a pulse oximeter worn to bed would let us know if Simon was having a seizure or was in distress. This system—combined with a video monitor—works like a charm and now I can sleep (most) nights.
4. You can choose to not be alone.
When you feel small and frightened, do what you did when you were small and frightened. Reach out your hand for someone to hold.
Your spouse is called your partner for a reason. That friend who offered to help, she means it. Your family wants to be bothered. It is what families do for each other. The truth is that many good people would love to help you, they just don't know how because you haven't told them yet.
When I first decided to pursue getting a service dog for our son, I was simultaneously overwhelmed by the cost and excited at the prospect of what a dog could do for our son—and our family. As soon as I started telling people about it, they literally jumped at the chance to help us. Without my ever asking, the money for the dog was raised by people who knew and loved us, as well as people who had never met us but were inspired by our story. A year later I am still getting letters from people inspired to do good things (like hold fundraisers for children's hospitals, epilepsy research, and service dogs) in my son's name.
5. Recognize that sometimes it IS all about you.
In order to be a healthy parent you literally have to be a healthy parent. We special needs parents know we have to live forever in order to take care of our kids, and you can't do that if you don't take care of yourself. Find things that you can do to take care of yourself, just for yourself, to stay or get healthy and sane. I go to power yoga and I get my nails done. You figure out what works for you and then keep doing it because you need it, like oxygen.
6. Be present. Now. Didn't work? That's okay. You can try again. Now.
Now is what matters. It is what you can impact. It is what the past and the future are made of. To those of us that have spent time in the NICU and the PICU and have seen how fragile life is, this simple truth is profound. Stop regretting and fearing. Save the reminiscing and planning for when you are not holding your beautiful child, and try to just breathe life in. The best part is, if you have trouble doing this (in yoga we call it "monkey mind"), it's okay because now is a new moment and you can try again.
7. You are the expert on your child. End. Of. Story.
8. Being a part of a solution makes the problem more manageable.
Life is full of problems, for all of us. Some are small (like the irritating way my toilet won't stop running without jiggling the handle multiple times), and some are big (like an insanely low rate of funding for epilepsy and rare disease research and education). Problems get smaller when you choose to do something about them.
For example, I could choose to learn a little about plumbing and fix the toilet issue more effectively. Or, I could spend several months working with a team of neurologists from two different hospitals to create a system of patient-friendly epilepsy information materials to put a dent into the widespread lack of education provided to newly diagnosed epileptics and their families. (It's funny how that second one seemed easier at the time. I can always call a plumber.)
9. Forget winning. Celebrate progress, because it is progress.
We live in a culture that celebrates achievers. When your child has missed every milestone in the book, you have to find a new approach. You have to learn that your definition of achievement isn't reflective of anyone else's. That is something that can only be defined by the individual. And, just maybe, your definition is better. So work towards finding it—however slowly and however many steps forward (or backwards) it takes—and then celebrate it all along the way.
Because even slow progress is progress. Because the first word is that much sweeter when you have waited so many years to hear it. Because every game played by the special needs baseball league is as joyful and emotional as the world series.
10. Your strength does not have limits.
Nothing surprises me more than when another mom tells me that she couldn't do what I do. (And it is worth noting that not wanting to do something is different from not being able to do something). If it is your child who needs you, you can—and will—do whatever is necessary.
You can stay awake in an intensive care unit for three days straight because you are waiting for your child to wake up from a coma and you want to be the first thing he sees. You can sell the business you put your whole life and passion into so you can be closer to the medical center your child needs to be treated at for his rare disease. You can yell sternly at your very sick child to take their medicine "or else," even though there is nothing more you want to do than scoop them up and take them away from everything that hurts them.
The things I have done myself, and the things I have seen other parents do because it was what their child needed can be impressive; but they are not at all astonishing.
You can endure almost anything physically, mentally, financially, or emotionally if it is the best thing for your child. You should just know that, and be confident in it. Because that is what unconditional love is.
That is being a mother.
How has raising a child with special needs changed your perspective as a parent?
5/7/2013 10:13:39 AM
By Rita Buettner