I have to be honest and tell you up front that I am writing this while nursing some sore feelings. One too many times over the last month or so I’ve had to fight for my girl. I have had to hear hurtful words. So my heart is tender and a little broken so be patient with me as I write about our daughter.
Every so often someone will post on the advocacy pages that they are looking for a certain type of child. “Show me all your girls 5 and under” or “Either gender under 3”. That type of thing. And every now and then I see a list of needs someone is open to with the caveat of “No cognitive delays”.
And I get it. I really do. Three years ago I probably would have said the same thing.
But if I’m honest I’ll tell you that little caveat hurts my feelings. Because that’s my little girl.
Our little girl will be eight years old this month but she is in every way much more like a three year old. She is also non-verbal. As she gets older the gap between she and her peers widens.
She’s also amazing and brave and smart in her own way. She is utterly adored by her people and she knows it. Her file stated mild cerebral palsy and if you read between the lines you might have come up with non-verbal. We knew from talking to an American pediatrician that had seen her on an agency trip that cognitive delays were likely.
We had no idea what to expect or what that would look like for our family. We didn’t know how to be special needs parents or siblings, we just knew we wanted this child to be part of our family.
When she came to us she was five years old but was in every single way a baby. In hindsight we probably should have been scared to death. We knew she was significantly delayed but I think we just so happy to have her that we didn’t see the full picture.
But even as the delays unfolded after we got home – even as we met with doctors and teachers and heard over and over how delayed she was – we still saw the potential she had.
She will never be able to catch up academically with her peers. We don’t know if she will ever have full verbal language. What we do know is that she is our daughter. And she fits perfectly in the niche carved out for her right here in our home.
So in the almost three years since she has been home what has Sarah learned?
She has learned her name. I truly don’t believe she had any idea that she had a name.
She has learned how to write an “S” and we are working diligently on the rest of her name. She has learned to match colors and pictures. She can cut while following a straight line. She can sit in a Sunday school class and listen to a story. She has learned to run and climb and once the weather cools of I’m determined we are going to conquer the bike!
When Sarah came to us she had absolutely no language at all. Now she can tell us when she is hungry or thirsty, when she wants to go to bed or take a bath. She can tell us the names of different pictures in a book. Sometimes with a sign, sometimes with a sound or word approximation, but either way it is communication!
She loves to help with the laundry and has recently discovered a love of washing dishes – YEA! She adores her siblings who return the adoration in full. And every afternoon she loves to curl up next to me and take a nap.
She has learned that she is safe and loved. She has also learned that when she needs to be reminded that those things are true we will tell her again and again and again.
What have we learned since becoming the parents of a child with lifelong cognitive delays?
We have learned that what seems scary is not so scary when it has a face and a name. We have learned that adjusting expectations is a good thing, that it helps us keep our priorities right.
We’ve discovered that sometimes there are better things in life than an empty nest. We have learned that having a front row seat to watching a child learn to love and be loved is the greatest privilege.
We have seen how very real trauma is and how hard that is to work through when you have no words. We have learned to be more patient than we thought we could be. We’ve learned what to make a big deal about and what is really not worth worrying about. We have learned that words can hurt or that words can heal.
And we have relearned the truth that every single life has value. Every single person has something to offer. And every single child deserves the love of family.
Every. Single. One.
Some days are hard. I wouldn’t be telling the truth if I said they weren’t. Some days are exciting. Most days are just days, with ups and downs like everyone else. Sometimes I have to fight for her. Some days I hear words that hurt.
Some days I jump and shout for joy as she learns a new skill or a new word. Some days I shudder that we almost said no out of fear. Fear for ourselves – selfish fears. If we had had any idea of what a blessing this child would be we would have yelled, “YES!” at the top of our lungs.
I know “cognitive delay” is scary and full of unknowns. Our society’s gold standard for parenting is always that children grow up and become independent and the reality of parenting a child that will never be independent requires some rethinking.
Some kids will take off and catch up once home. Some kids, like my Sarah, will take off but still not ever catch up. And that is ok.
She’s not scary. And thankfully now she’s not unknown.
She’s a precious child who at least once a day takes my face in her hands and whispers “mamma” because she knows that word, and she knows it means she’s safe and loved.
And every child deserves that.
– guest post by Stacy
This is beautiful. I have three kids with autism and a baby who likely has cerebral palsy. It’s strange to stop and think that so many would consider my life some kind of worst case scenario when our family is so full of love and joy. I do worry what will happen to them when I’m gone or if I became too disabled to care for them, but my husband and I are making big financial sacrifices today so that hopefully there will be enough money for them to survive later.
I am also the parent of a sweet girl with cognitive delays and a file that listed mild CP. Once we saw her picture, no amount of warning could have kept us from our girl 🙂
What lucky Mamas we are!
Beautiful post and a powerful love story. Thanks for sharing Sarah with us.
!Let the little children come to me,and do not forbid them ; for such is the kingdom of God.
Another CP mama here with a little girl who has cognitive delays. We cannot imagine our life without our sweet girl. Blessed beyond measure indeed. She leaves sparkles of her precious JOY in the heart of everyone she meets. She amazes us more and more every single day.
This story is beautiful but what is even more beautiful is watching it unfold. I have had the joy of seeing this family almost weekly since Sara came home. She has blossomed and made huge strides and the only explanation is God and love. I have been blessed by just being a witness to what love can do.
This brings tears to my eyes as my baby has autism, is nonverbal, and will never leave us. She has been one of the greatest blessings God has bestowed upon us in this life. The lessons that we have learned while loving her are so priceless. Thanks for sharing this!
Heaven’s very special child
Her progress may seem very slow. Accomplishments she may not know. In many ways she won’t adapt, and she’ll be known as handicapped. So we’ll be careful where she’s sent. We want her life to be content. Please Lord, find parents who will do, A very special job for you. They may not realize right away, The leading part they’re asked to play. But with this child sent from above, Comes stronger faith and richer love. Soon they’ll know the privilege given, In caring for this gift from Heaven. Their precious charge, so meek and mild, Is Heaven’s very special child.