Over and over, I hear parents who have a child with disabilities talk about their feelings of isolation. Many say that friends and family seem to disappear, just when they’re needed the most. While we’ve had family and friends who have drifted away, unwilling or unable to be drawn into our unique circumstances, we’ve had many, many more who have stuck by us.When Julia was a newborn and I was really struggling to find my footing, my dad realized that I needed some extra support. At the time, he was working part-time near my home. Nearly every weekday during my maternity leave, he stopped over to visit us after he was done with work. Even when we started to regain our footing and his visits were no longer daily, he continued to be a steady and frequent visitor.
Whether he knew it or not, his visits were sometimes the only thing that kept me standing. Because I knew he would likely be stopping by, I felt like I needed to pull myself together and at least get dressed each day. Instead of retreating into myself with fear and sadness, I dug deeper, wiped away the tears and got myself ready to face the day.
I was not the only one who looked forward to his visits. My then 2-year-old son, who already had a very special relationship with Poppa, loved to see one of his favorite people nearly every day.
My dad often arrived with a project that needed to be done. Sometimes it was planting flowers in our yard, other times he brought rhubarb from his garden and we all baked together. Those projects gave me a sense of purpose, and I learned the value of keeping my hands busy when my heart was heavy.
It’s not uncommon for friends and family to feel like they don’t know what to say, especially when the diagnosis is still new and has left fresh wounds. But, sometimes there’s no need to find just the right words. I don’t remember my dad providing me with the perfect advice that helped me figure out how to navigate parenthood with a child who had profound disabilities and frightening medical conditions.
But, what he did was even more important – he showed up. Day in and day out, he was a steady presence during a very challenging time. He helped provide a sense of normalcy when things felt anything but normal. We created some happy memories during a time of my life that was really scary and overwhelming. Even years later, I still smile every spring when my crocuses poke through the snow, remembering my dad and my son planting the bulbs together.
If you have family and friends who are willing to show up, let them. They may not always say the right things. They may visit at a time when you don’t feel like having company.
You may be filled with fear and anger and grief, feeling like you just want to be left alone so you can manage your emotions behind closed doors. But, whenever you can, throw open your door and let others in. If someone is showing up for you with the right intentions, wanting to surround you with love and support, don’t push them away. Plant flowers, bake rhubarb bread, regain a little bit of normalcy, create happy memories – even if you feel like your heart is broken.
Even if they don’t show up with the exact support you think you need or they don’t always say just the right thing, keep your heart open to what they’re able to give. You may find that it’s just what you needed after all.
