Mother’s Day is a holiday filled with joy and love for many families, not excluding families that don’t fit society’s definition of “normal” or “Typical.” I’m talking about Moms that have lost a child or Moms that have children with special needs.
I fit into the second category, although I have friends and people I deeply care about that fit into the first category. I can’t speak to their truths, which I’m certain are filled with both love and pain, but I can speak to mine.
You see, in 2003 we found out that we were going to have a baby. We were elated! Living in a very small town with a small hospital we did opt for more extensive testing because we just wanted to plan ahead and if there was any sort of complication we wanted to be near a hospital that could handle it. Back then it was the alpha-fetal-protein test, or the AFP that determined a probability of chromosomal abnormalities. Ours came back with a slim chance that our baby had Trisomy 21. We were told then that we could go ahead and do amniocentesis to find out for sure, but there was some risk to the baby. When we asked why we would risk the baby for testing, we were told it was so that we could decide whether or not we wanted to continue the pregnancy. Continue the pregnancy? That was never an option for us. Looking back, I should have known that was just my first experience as a special needs mom.
When he was born, he was early and we did end up having him at a bigger hospital and we had Doctors that didn’t know us or our family. He had a heart murmur and struggled to latch on when I tried to nurse him so we just asked the pediatrician that was on call if he had Down Syndrome, how would we know? She told us he did have some of the markers, but that she didn’t recommend testing. We were just to “take him home and love him.” Those words still haunt me. I wish I would have been armed with some sarcasm that quickly post-partum. I would have asked her what the alternative was to loving our beautiful baby boy. I’m curious now, 13 years later, to know what her response would have been. Was she really thinking she was saving us from thinking about sending him to what… an institution? In 2003???? So that was experience number two….
A few days later we found out that he was completely unable to nurse due to hypotonia, a common symptom of Trisomy 21. In fact, he was incredibly dehydrated and had severe jaundice. So we went back to the hospital to meet another doctor who treated us like we were idiots because we couldn’t tell this baby had Down Syndrome. We just thought he was beautiful. Lesson number three….
I wish it all got better from there. In many cases it has, but when people say they admire “Special Needs Moms” because of their strength, I want to talk about that. Every human on this earth is who they are because of their life experience. Unfortunately, it’s often rising above adversity that ends up making people stronger. I wish there was less adversity in raising a child with a disability.
Looking back at my very first experience that I mentioned, that was the first time that it was communicated to me that my child’s life was viewed as less valuable than other children. It was no fault to my doctor, who was following medical protocol. That was communication from society.
Lesson number two was a doctor who thought equality was about not talking about the disability. What happened from that? He almost died. We almost lost our child because a doctor didn’t have the knowledge or the emotional strength to tell us that our child wasn’t physically able to nurse like other newborns. Not talking about disability doesn’t help. Being “aware” of disability isn’t enough. Knowledge, understanding and empathy have to happen for equality and for us to share knowledge we have to talk about the hard stuff.
Lesson number three was that in the four days we had been parents that doctor was expecting for us to just know all the things about a diagnosis that we hadn’t even been given yet. That’s an awful lot to expect from brand new parents.
There are so many other lessons, but that first week was a real trial by fire. Many times, it has been communicated to us that he’s not enough. “He’s just not going to be able to_______.”
“He isn’t able to______.”
“He can’t do_____ because of _____.”
“Let’s be realistic.” (I particularly detest the word “realistic.” I mean, really, who decides what’s realistic or not?)
“Maybe you shouldn’t push him so hard.”
Then there are the real doosies, like the time that my husband and I sat in a parent teacher conference and the teacher looked us in the eyes and said, “Your son knows nothing.” When my husband asked her what she was doing about it she became angry and asked us to leave. (At that particular moment, I was speechless that those words could possibly come out of the mouth of a professional. It was like I had been hit in the gut. I honestly felt like I was going to be sick it hurt so badly and so deeply. I was so grateful to have my husband there with me.)
Sometimes it’s more of a subtle thing, like Mother’s Day gifts from school that were made by the teacher because he doesn’t color in the lines.
The thing is that I love that he doesn’t color in the lines. I love his silly drawings and the crazy stories he tells. He is enough. I know he doesn’t fit into society’s mold of “normal.” Not only is that ok, but I think it’s beautiful.
Think about your kids for a minute. Think about how you love them with every single fiber of your being. Imagine being told how inadequate he or she is at hospitals, daycares, schools, and yes, even church.
I work hard as an advocate. I blog, I create teaching resources and most recently I’ve started public speaking about inclusive education and equality. People ask me how I have the energy and the time to do all that I do.
The truth is that I don’t. I’m tired. I hurt.
But I look at my son and I see a young man who has more love in his heart than I could ever dream of having. I see a young man who has already overcome immense obstacles. I see a young man who gives me hope that there is unconditional love and who brings me so much joy. That is my fuel. That keeps me going.
What keeps me focused and driven is those little comments about his inadequacy. The Mother’s Day gifts made by adults, the comments about how his needs are just “too much.” No, his needs are not too much. He doesn’t fit your mold, and that’s ok. I know the truth, that the mold should be broken and I’m driven to prove my point.
I am so grateful for the Moms who came before me, before us. It was not long ago that it would have been a typical conversation for a doctor to tell us to send him to an institution, as our family would be “better off” without those “extensive needs.” It’s better now, but, my experience says we aren’t there yet. Kids and adults with special needs are among the most marginalized population in the world. There is no reason for that to continue. I am driven to change that for future generations of families.
My family has been immensely blessed by Trisomy 21. I never cry because my son has Down Syndrome. I have cried because people fail to see beauty after a diagnosis. It’s easier to see what he can’t do than what he can do, for some reason. I cry for other people because it’s so sad to not see him for who he really is. I cry for him because he has so much to offer the world. He just needs to be given a chance. He is a young man who will someday be the perfect husband. I know because he takes care of me when I’m sick. He tells me I’m a beautiful princess when I roll out of bed with no makeup and bed head. He always asks me how my day was because he cares, not out of obligation. He tells me I’m the “best in the Universe” and that I have his whole heart. He loves animals, he is very creative and he is an absolute comedian. (Someday I’ll tell the story of why there is a frying pan and a boxing glove floating in our lagoon. It’s a good one!)
My daughter has said for years that she wants to adopt a baby with Down Syndrome when she grows up. I hope she does. I hope and pray our generation helps to break the mold of what society dictates as normal.
Happy Mother’s Day, to all the Moms out there with the daily struggle of being fueled by love and driven by pain. The struggle to take on the world for your child one moment, coupled with crippling feelings of defeat when you think you are making progress and then the next person tells you something else isn’t good enough. Your child is beautiful and valuable.
You are not alone.
If you love this post, be sure to sign up for our newsletter to get updates! Share with your friends on social media!