LIFE

my hardest post to write

(All names are fictitious.)
hard post to write

hard post to write

You’re out in your garden.  You’re anticipating an important phone call. You hear the phone ring inside the house and your husband comes to the door and yells, “They’re on their way to the hospital. We gotta’ get moving.”
 
You drop everything and rush in to quickly shower and grab your bag. It’s a three-hour trip to get to your destination. You and your husband are on your way in under thirty minutes. You get about half-way there and your cell phone rings. It’s your son-in-law.
 
“She’s had the baby already!”
 
“How’s everyone? How’s the baby? How much does he weigh?”
 
You don’t have to ask the gender. You’ve known early on unlike their first one, only two years old, for whom they kept you and themselves in suspense.
 
“I’ll call you back in a few with the details.”
 
“OK, “ you answer.  You know how hectic those first few minutes after a baby’s birth are so you think no more about it.
 
You and your husband excitedly talk about this new little one. Your husband gets a phone call and the lull in the conversation allows you to think back a few years. You remember how after about eight years of marriage there were still no children. You and your husband had talked about it often. You both agreed that if there were ever a couple that should have children, it’s the two of them. You always knew what great parents they would be.
 
You cautiously bring up the subject to your daughter. All you say is “If you’re planning on a family don’t let time decide for you. Make sure it’s your decision.”
 
That’s when you learn that indeed they had been trying. The very day your daughter has a doctor’s appointment to discuss lab results and further options for having children, she learns she is pregnant.
You and your husband are beside your selves with joy for answered prayer.
 
Jason is born perfect and the next two years prove that you were right. They are amazing parents. You watch in awe and only wish you had been half the mother the daughter is. What a surprise to learn child number two is on his way in little over a year.
 
Three months into the pregnancy and your daughter has the usual blood work done. A slight abnormality in the blood. The doctor assures your daughter there’s only a three percent chance there’s any problem.
 
Three percent.
 
That’s hardly a blip on a chart.  Your past job evaluating statistics reassures you. Your daughter decides not to have genetic testing. It wouldn’t make a difference. She would never have an abortion.
 
Three percent.
 
You and your husband agree there’s nothing to worry about and yet. ……You both start praying for a perfect baby. You pray singularly and then jointly.  Three times a day.
 
Three percent.
 
The closer the due date, the harder you are praying.
 
It’s been an hour now since your son-in-law called. Your husband tells you that they’re just busy getting everyone cleaned up.
 
You’re not so sure.
 
You feel your heart beating a little faster, a heightened sense of fear grips you.
 
Your heart is racing when your phone rings. It’s your son-in-law.
 
“It’s about time,” you mutter to yourself before you say more pleasantly than you were just thinking, “Hey, Kevin. It’s about time. Tell us everything.”
 
There is a pause and in an obviously swallowing back of tears  you hear, “There’s a problem. They’re running some tests.  The baby has markers for—–
 
Down syndrome. They’re taking him out for some testing.”
 
“Are you almost here?”
 
“We’re only about twenty minutes away,” you say.  You hang up and tell your husband while dissolving into shoulder-heaving, gulping tears.
 
Your husband tries to drive through his own pain.
 
You know you have to pull yourself together before you see your daughter. You think you’re heart is going to shatter into a thousand tiny pieces; you are hurting so much.
 
You choke back tears as you enter the hospital, get on the elevator, get off the elevator, and find her room.
 
“Keep it together”, you cite as a mantra to yourself over and over again. How do you walk into that room? What do you say?
 
But you do. You walk into the room.
 
The looks on their faces says it all. The grace and courage they show almost does you in.
 
How did your daughter get to be so courageous? Was she always like this? How did you miss it?
 
The baby is returned but there are no results yet. You hold him for the first time and something passes between the two of you that you can’t explain. It’s like he is looking into your soul through those beautiful slanted blue eyes. He’s so fragile looking.
 
You learn from your daughter more than you ever wanted to know about Down syndrome. How a large percentage of babies are born with serious heart defects. How many of them have hearing loss. How their low muscle tones not only cause walking and speech delays, but also acid reflux and bowel problems. It’s all too much.
 
“Oh, God, this isn’t happening,”  you say to yourself.
 
Three percent.
 
You know what the testing will show. Your husband doesn’t see it but you do. You feel such a protective instinct towards this little guy. You know you’re always going to feel that way.
 
After a while your daughter asks if you want to take the baby for a walk in his wheeled bassinette.
The two of you head down the hall in a kind of daze. As you turn to walk down another corridor, you come across two of the custodial staff.
 
There’s a third young man off to the side. You don’t see him until he speaks and when he does, the events of the day come together in a kind of symphony whose tune never leaves your memory. It’s leaves an indelible impact that three years later, you’re still trying to understand.
 
You hear a thick-tongued voice say in childlike wonder, “He beautiful. He look just like me!”
 
Three years later and tears still come to your eyes when you remember that God-filled moment.
 
You are devastated but this young man sees only the beauty of someone like him. What are the chances this is a coincidence?  You look at your daughter and see she’s as dumbstruck as you, not knowing how to understand, feeling as though something “otherworldly” is going on.
 
What do you call it even now?  Vision? Dream? Miracle?
 
What you will never call it don’t call it is a coincidence.
 
Blinking your eyes hard, you tell him thank-you and give him a hug. Are you hugging an angel, you wonder? A messenger from God?
 
You’ll never know.
 
You and your daughter fight the tears as you walk away, not knowing what to say. Even now, almost three years later, neither of you can really discuss it without tearing up from the wonder of it, the mystery of it. You still don’t know exactly what happened but you know it was more than what it appeared to be.
 
When you return to the room, you learn that the baby has checked out OK physically and for right now there are no health concerns at all. He and your daughter will be coming home tomorrow.
 
You remember the day you came home from your daughter’s and how someone who has learned of your grandson’s diagnosis calls you. She is the mother of an adult child with the syndrome. Her child is older so her information is outdated. She meant well but after the conversation your husband has to hold you for a long time as you sob, hoping what she told you wasn’t true.
 
She called again months later and you make sure to point out how much has changed since her child was born and how the future is much brighter now for children with Down syndrome. (BTW, it’s Down syndrome without an “s”.) You throw away the books. Both you and your daughter have decided independently of each other that you will deal with things as they come up. That too much information right now is just that-too much information.
 
You start to write it all down. At this point you haven’t started “blogging”. Once you do, you wonder how much to tell your followers. Should you tell them that sometimes, even now, your heart breaks for the things your precious grandson might not experience.
 
But then you remind yourself that maybe some of what he won’t experience might be good, like over-analyzing, and thinking too much, like his nana. That in some ways, his life might even be better.
 
But still you project into the future and wonder if he’ll be bullied or made fun of, and you know you will feel murderously (yes, I mean that) towards whomever would dare. You know that you who has never wished anyone harm, will be close to losing all resolve where he’s concerned.
 
You start to write and it all comes crashing down. Your tears surprise you after all this time.
 
You love him so much it hurts. You are optimistic about his progress. You want to believe he’ll surpass every other child with this condition.
 
Three percent.
 
But mostly you wonder how you’ll explain to whomever reads this story, how he has changed your life. How your priorities (what an overused word) have been turned upside down. How other people’s drama doesn’t affect you the way it used to. How you’re willing to walk away from things you can do nothing about. How you are much more impatient with self-pity from anyone, including yourself. How you accept change so much better now.
 
How your little guy’s progress makes your heart do flip-flops. How when you hold him, he touches a very treasured and secret place in your heart that few ever have.
 
There’s something about grandsons and grandmothers, you decide.
 
You want people to be encouraged if they’re facing something similar. You want to tell them it will be OK.
 
You know there will be those who think your daughter should have had genetic testing and possibly an abortion. You know for their sake you hope they never cross your path.
 
To  meet this little guy whose smile captures the heart of everyone to whom he blesses it with, is a privilege. To not have him in your life is incomprehensible. You would pick him out over a thousand so-called “normal” babies if you had to choose.
 
You want to be worthy of being his grandmother. You are ashamed whenever you tell yourself something is too hard for you to do. You pull yourself up on those days you want to have a pity-party about anything.
 
You have never been more proud of your daughter and her husband.
 
Today my little guy starts preschool. As I think about it, my eyes tears up and the lump in my throat gets bigger. I can just see him in his little backpack just like every other preschooler. As I think about it I wonder if down deep I thought this day might not come.
 
But it has. He tested out of one level because he’s doing so well. You see, no one knows what he might be able to do.
 
No one.
 
I believe in miracles.  I pray everyday that he will become all he can be. That he will surprise us all.  I will as long as I have breath.
 
What does “disabled” mean anyway? Aren’t we all? Especially those who keep their disability hidden: mental health issues, abuse, insecurity, secrets deep within.
 
disabilites

disabilites

 
I have a specific  prayer only for him. I pray that his relationship with God is very special. That he has a faith that few can comprehend. He probably won’t have to “filter” everything the way I do. He will have that faith that Jesus said only a child can have. I think I’m even a little jealous.
 
Three percent.
 
But my heart is one hundred percent full of joy because of him. Never has three percent meant so little.
 
Happy first day of preschool, my precious one. Your nana is so proud of you.
preschool

preschool

 
my hardest post to write

my hardest post to write

 
 
 

 

10 replies »

  1. Thank you so much for your honesty, for sharing your precious grandson with us. I feel much the same for my Sarah who is autistic. All the unanswered questions. We are blessed to watch the changes she makes, the new things she learns and her constant peaceful, loving, funny girl who shows us the beauty of “different” I cannot ever imagine not having her in my world. Everyday is a new adventure for us all, Sarah gives me extra bright stars to wonder over and ponder God’s great blessings.

    May your sweet grandson be greatly blessed and all those who will have the honor of meeting him.

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  2. He is a brilliant burst of sunshine in an otherwise mediocre world! Thank you for posting your heart, Becky. It has, once again, done my heart good. I’m very sure you understand what I’m going through with my son, Nick- thanks. Thank you, Jesus, for special kids! Nick responded with a smile when he got to see his cousin, Bobby, yesterday. I hadn’t seen that smile in 2 weeks. God doesn’t make mistakes!

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  3. Wonderful story, Nana. I was involved with The Little Lighthouse for years and many children with Downs Syndrome are there. They are so sweet and Precious. You have a special blessing and thank God for him everyday. He’s a little treasure!!! Thanks for sharing!!😀

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  4. I was breathless as I read this, going through the journey with you in the only way one can, just by reading. No one can know what this journey is like until they’ve lived it, and I haven’t. But I can hear the beautiful blessings that your grandson has brought to your lives, how he’s enabled you to grow, to leave negativity behind as you may not have been able to do before he came along to teach you a better way to live, to rise above the things that we worry over that don’t matter and to live in the glorious path of joy. God bless you and each one of your precious family…..Thank you for sharing. And for reminding me that we never know when we’re in the presence of an angel…

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    • Thank you for reading my post. Even this morning as I reviewed it, the memory of that experience brought years to my eyes. No, we never know when an angel may be present. I’ve had a couple of similar experiences I post about in the future. Just don’t want people to think I go around seeing angels all the time. 🙂 But the way I look at it, God may have decided I have so little faith, I need lots if signs. Thanks again. Did you see the pic of my little guy? Is he cute or what?

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    • What an amazing and beautiful story. Thank you so much for sharing it. He is an adorable boy and so lucky to have the parents and grandparents he does. This life is full of beauty and tragedy both. We must acknowledge the tragedy and do what we can to alleviate suffering, but we can’t stay there. We must turn our minds and hearts to the beauty and the wonder of this mysterious thing we call life. Today you turned my mind and heart to wonder! Blessings!

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      • Thank you so much. I just wrote last week about how life always contains the good and the bad (I think it’s called “walking down the middle of railroad tracks” Looks like we’re on the same page. Thanks again and God bless.

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