Environments of Grace: what do they look like {for the mother of a special needs child}?

Ann Ehlert is a new friend. We find ourselves connected through Jesus, blogging and our sweet friend Courtney. Ann and her husband, Greg, live an intentional life of ministry within their family and a broader community. Her story is one that teaches us how to receive and respond to the realities of others in ways that bless and encourage. And ultimately, sometimes our environment of grace comes when we, ourselves, extend grace to the people we need it from.

Slowly but surely I have been learning how my black and white thinking is not loving or accepting. As children, we learn many unspoken rules, and you either abide by them or break them. The goody-two-shoes I have been most of my life has created these boxes to put people in, lines for people to live up to, and dark bold shades of either black or white.

My whole life I longed for a community of people who loved each other. In my heart I desired a community that truly shared everything. I don’t just mean borrowing someone’s mixing bowl or lawn mower, but bearing one another’s burdens. When someone is struggling, the whole community is there in the struggle helping them through it.

When my youngest (and third) daughter, Ada, was born with Down Syndrome, I refused to let her birth, and first weeks of life, to be a time of grief. I didn’t want to look back on her precious beginning and think we were sad that she had arrived. And, deep down, I really was content with her having Down syndrome. And I still am.

Upon the news of our daughter having Down Syndrome. people encouraged me to grieve, and even gave me permission to grieve later if I needed. I was okay hearing this. What I wasn’t fine with was the grief of others. It was hard to watch people cry or give me a look of pity when they found out Ada was different.

As I struggled with people’s reactions, I found myself keeping more and more of my baby’s life to myself — a life that looks different than the infant months of the average child. Ada could not nurse and had a hard time drinking from a bottle. I was pumping several times a day with two other children running around…and then I would have to watch the precious milk I had pumped slowly dribble down her face. There were many doctor appointments at the beginning of her life, and still now I have to take her to several doctor appointments for various issues related to Down syndrome. But Ada is healthy! She has had two echo-cardiograms. One when she was first born where they found a valve that had not closed after birth. Fortunately, a few months later when tested again, it was closed. Every child with Down syndrome has to be checked every six months by an ENT (she had tubes put in her ears at 8 months), an ophthalmologist (She’ll need glasses in the future), and blood drawn for thyroid and leukemia testing. As their life moves forward more doctors are added or subtracted.  So far, Ada has checked out well, but these appointments still fill our time. I pray for those mothers whose child doesn’t check out well during these visits — for their plate is beyond full.

The reality and shock of my child being different wasn’t new to me. Our second daughter, June, was born deaf. Those witnessing our new reality wanted me to share my feelings about her deafness. I felt as if I were being bombarded with a whole new world and possibly a new language to learn. We had a lot of choices to make, and the pressure of choosing the right path for June was overwhelming. It felt like if we didn’t choose the right one, she may never talk. When Ada was born I decided to take what I had learned from our experience with June and let it shape our new reality with Ada.

In this journey, I’ve had to let go of the expectations I once had of my community. I had already begun this process when I struggled with support during infertility. I do not do well with pity eyes or certain tones of voices. I like to be strong and independent and the idea that you think my life sucks makes me want to punch you. Slowly but surely the Lord is teaching me who I can share this “burden” of raising these children with, and how to offer grace to those who just don’t get it.

Ada, at times, is a harder child to raise. Even though she is super cute and lovable she has been stuck in baby stages much longer, and this can be wearisome. In general, I have become used to our more challenging routine withAda, and sometimes I don’t even know how to communicate with others about it because I have forgotten that it is hard. Sometimes it makes me sad that I don’t share these things with everyone because this journey is rich and at times I actually do need the support. I used to think others had to be everything to everyone…but I’m realizing that some things we need to ponder in our hearts and not everyone needs to know or be a part of it.

The Lord has shown me that some people only need to know bits and pieces of our story, and others need to know more. And that is okay. I have met some really amazing people through my children’s disabilities, and I have been able to add them to my community — a place where I can be vulnerable and weak. The funny thing is, not all of these people have special needs children or even know people who are “considered less in the eyes of the world.” But these people, who have blessed me, understand and love me in ways that I need.

I did not find this safe place in just one person or a certain group, but the Lord has given me several parts of His body to be supported by.

People often ask how they can support me, and some even ask what are good questions to ask of a parent whose child has special needs. This is different for every person. Even for myself I can’t give you a nice formula to go by. Two different people can ask the same question and I might receive one well, and I won’t the other. I pray that I will give grace to the latter.

It’s always good to congratulate someone on their new baby, no matter the reality that comes with the child. It’s also good to offer support for doctor appointments and to make connections with friends who have been through similar situations. It’s good to ask how the parents would like to be supported, and I always love the moms who give me no pressure for a play date knowing we experience four therapies a week.

Here’s what can be hard: when every positive article on your child’s disability or every new piece of information on how to help your child reach their full potential is sent to you. Sometimes I love these articles, but on hard days, not so much. I pray often that I will educate lovingly and when I don’t do this lovingly, I hope that grace is given to me for not responding the best I could have.

Ironically, my name means “full of grace” and grace is what I continue to learn to give. I am slowly learning to open the top of my box, fade the stark lines of expectations and mix those black and white colors to make lots of pretty gray. I hope this means I am growing more and more into my name’s sake.

Feel free to respond to Ann here. Let’s encourage each other in our stories!