“The heartbeat looks strong. The measurements are all within normal range. Um, I have to go get the doctor to discuss this with you…just a minute.”
You once asked me what I was going to do. You had just finished telling me that everything would almost certainly be fine, that a large number of people have these cysts as adults and have no problems. The cyst that was growing inside our baby’s head was no reason for concern.
So I replied that I would discuss today’s ultrasound results with my doctor the next time I saw her.
“There are other options.”
In one breath, you told me he was fine – there was no cause for concern. In the next breath, you gave me “options”. You reminded me that many people don’t want to be bothered with carrying a baby to term if there is the slightest possibility of a problem, though you said there was no cause for alarm. You told me this cyst would have to be accompanied by any number of other issues for there to be a “problem”.
You offered me options.
That child, the one who had a cyst and no other accompanying issues, is turning twelve. His health is amazing, just as you said it would be. He had a CT scan done in his first year of life and the cyst was gone, as you said it likely would be.
He’s my second child, well-loved by his father and me, and he was welcomed to this world by his big brother. A little over two years later, he would become the big brother welcoming a little sister to the world. We have three children now, each one so very loved!
This guy had a very different temperament than our first son. My goodness! He ate, filled his diaper, cried, ate and slept. Until he was 7 months old and the sleeping stopped. Two hours of sleep became a luxury – a labor of love for whichever parent was letting the other one sleep. We tag-teamed the overnight hours, exhaustion was our new companion. Five months later he had a slightly better sleep schedule.
He failed the hearing test they do for newborns. Twice. At age one, I once banged pots together to see if he’d turn his head because he would not answer when I called him. The loud noise jarred him; he could hear.
He seemed defiant. He would do the same things over and over, even when we said “no”. It would be five and a half years before we found out that he couldn’t understand language.
He attended preschool and pre-K, thought it was not smooth sailing. We didn’t realize how much he didn’t understand. He spoke so well, carried on fun conversations, yet he lacked an ability to understand the meaning of words spoken to him.
He was challenging. He’d run away at the store, he’d scream about being confined in the stroller, he’d work on a plan in his mind – you could see the wheels turning. But we could never get him to tell us his plan – until he was almost on top of the fridge. Or until after he drew in Sharpie all over the walls.
He’s got a strong will. I mean – S T R O N G. We wouldn’t make any hard and fast rules for him unless we were willing to battle it out with him. If we gave in once, we’d have to start all over again and draw the line in the sand. It just wasn’t worth it.
School has been interesting – full of ups and downs. Therapy became a part of our lives in Kindergarten. I learned about sensory issues, brain development and functions. Asperger syndrome was added into the mix a few months later. An IEP – and all the legalities – became second nature. We learned how to deal with a “twice exceptional” child. Today he is a 5th grader who does work at a 6th grade level. And for the record, he has all A’s.
The first few years of his life were…difficult.
But there was always something about him. Maybe the twinkle in his eye, or the corner of his mouth that turns up just perfectly when he’s being mysterious. The impulses that we worked so hard to control often were rooted in love. He loved his family…and he wanted to show us that by drawing our family in Sharpie inside the bathroom cabinet.
Because of his intellect, and due to the many adults in his life, he’s had some wonderful conversations with his therapists, with family and friends. He’s dug deeper into his faith than many adults I know. He’s openly shared his faith with each and every therapist.
He’s learned how to play with kids his age and has gained some wonderful friends as a result.
And next school year they will be bumping him up to 7th grade. He goes to classes with his peers through a cyber charter school. He participates, he writes reports, he interacts, he sometimes talks out of turn, and he says funny things – just like all his classmates.
This will signify a massive “catching up” for someone who once tested at a kindergarten and 12th grade level in various parts of Language Arts.
You gave us options that day. I’m pretty sure you felt that our life might be better spent without this potential problem, though you assured us that nothing was wrong.
I wonder how many moms have taken you up on various options. I wonder how many moms, years later, wonder if maybe they could have, should have, chosen differently. Chosen life.
Though our early years were so difficult, none of us would be the same without this child in our lives.
Our son turns 12 this week. I wish you could meet him. I wish for you the opportunity to look deep into the face of someone whose life could have been an option.
I’d love for you to see someone who might not be worth the struggle.
I’d love to know how you would explain to him, or to me, how his life isn’t worth it.
The struggles we’ve been through with him have stretched us. They’ve flat worn us out.
And then the next day, we got up and we did it all over again.
Because we believe in one choice – LIFE.
We believe that God gives and takes life as He wills. It is not ours to decide when a life ends. You probably believe differently, and that’s your choice.
But, oh, I wonder how many might have had an experience like ours – if only they had been given hope…
instead of “options”.
This week we celebrate our second son’s 12th year.
And he’s been worth it all!
Rebekah has been completely overwhelmed by the grace and mercy of the Lord in her life. He has proven His faithfulness in every area of her life, especially in her marriage. She has come to understand the power of redemption and God’s work in her own marriage. Her goal is to be Sharing Redemption’s Stories – encouraging wives who are praying for redemption in their marriage.
Debbie Kellermiee says
That was a goose-bump narrative. I love you. -Aunt Debbie
Thanks, Aunt Debbie! Love you, too!
She writes beautifully, doesn’t she? 🙂 I’m happy to have her partnership here!
Do you think the cysts have anything to do with your sons sensory issues? Some of my children had those cysts in utero and do t have any issues. One of my children who didn’t have the cysts sounds like your son. Is he able to manage the sensory issues now? Is he able to integrate with the rest of society? My daughter is only 3, so lots of questions for me now!
Hi Michelle! Sorry I’m just getting back to this – it’s been a hectic few days.
I often wonder if the cyst had anything to do with his sensory issues. According to the doctors, the cyst by itself meant nothing. At one point I was reading up on these cysts and they impact they may/may not have. It’s hard to tell.
Our son’s had many years of therapy and that has worked wonders to help deal with the sensory issues. He still deals with some – has definite preferences when it comes to types of clothing – the feel of them. And he will tell you when things are too loud, or when he needs quiet. So the combination of therapy, age, and us trying to be attentive to his needs really seems to be coming together well for him. It’s difficult to know just what’s going on, especially when they’re little. Praying for you all!
kinley pink says
Wow awesome! Faith, courage and obedience is doing the right thing when you have no idea how things will turn out, but you forge ahead anyway!! Praise God!!
Thank you – truly an opportunity to exercise our faith. Kids seem to do that to you, no matter what! 😉
Hannah @Sunshine and Spoons says
Love this!! I’m currently working on an open letter for my blog to the doctor who, during the hardest time with my medically complex son, asked me how I was handling everything. When I replied that I was surviving each day only by remembering that it wouldn’t always be this hard, he told me that I needed to face reality and that it probably would always be that way. It was completely soul crushing. Today, my son is a happy, adorable 2 year old who still has medical problems, but nothing that we can’t handle!
Hannah, I’m so pleased to hear that your son is thriving in spite of the doctor’s predictions! Thank you for sharing your story here.