Having a Child with a Genetic Defect
“Heaven have mercy on us all–Presbyterians and pagans alike–for we are all somehow dreadfully cracked about the head, and sadly need mending.”
Herman Melville
A friend of mine in her 40’s (whom I love dearly!) is trying to carry her first pregnancy. It’s not that she didn’t want children earlier, but circumstances and an anti-child husband (whom she ended up divorcing) left her where she is today: aging and childless.
So, a new man and two implanted embryos later, she is crossing her fingers and hoping at least one of them sticks. I, of course, am hoping that both of those babies live!
It did get a little awkward when she told me she bought donated eggs instead of using her own. The doctor told her that at her age, she’d have like a 90% chance of having a baby with a genetic abnormality.
“Oh,” was about all I could say.
I have one of those children. And part of having one of “those” children is that it becomes fodder for others to excuse away having babies to add to their families. After all, you might have a defective baby. Like mine.
And, can we be honest here? Just because you or I have a baby that is perfectly normal (according to whatever standards) does not mean that baby is going to grow up and never become ill, disappoint you or get into some sort of horrific accident and die. Are we really that arrogant?
Methinks we ALL have some sort of “genetic abnormality”, and that some are just more socially acceptable or better hidden. Don’t ask your friends what’s wrong with you; ask the ones that annoy you to all smithereens about what they think those faults of yours are.
- how you would still love your child
- how you would find fire in your belly to defend and protect that child
- and how thankful you would be every minute for that child.
Here is a gentleman who has to live with his “choice” to abort his son with Down Syndrome:
It’s almost like a Jacob Marley-esque thing that I will drag around with me forever. If I could find some means of redemption I’d like to know how I could go about doing that.
Redemption comes with repentance, and was legally bought by the finished work of Jesus Christ on the cross as you believe and accept Him as your Lord and Savior. If you have to live with the decision of having aborted a challenging child, not going to Jesus is just living prematurely in hell on earth.
Accepting your challenging child, however….well, I can say that it is a taste of heaven.
Ruby’s Homeschool
A lady at a church I was attending began giving me the creeps. Every Sunday, she would saddle up next to me and inquire quite intensely about what programs I had signed Ruby up for. And, every Sunday, I would politely reply that we are working with her from home, using books and other adults who had knowledge of her condition. At one evening event, things got pretty heated because as much as I tried to change the subject, she got more animated and aggressive. I suppose she felt she had a stake in Ruby’s development; after all, she works for the school district, and I was just the mother, not an “expert”.
“Well,” I replied at one gathering, feigning interest. “Could you tell me what kinds of things Ruby would be doing there?”
“She would get complete attention and get lots of opportunities to play!”
“So…..you’re saying that there would be no difference, except that it wouldn’t be her family doing these things…?”
(looking at me hard) “She would get speech therapy.”
“Speech? You mean like my 7 year old gets, whom we’ve contracted privately?”
“Yes! But it would be free! And she’d get to ride the bus four times a week!” (side note to those trying to sell public schooling to homeschoolers: the bus is not a perk, and nothing is “free”).
“Hmmm. You know, at this point we are not only working on tongue control, but she is babbling nonstop. She’s just the same right now as our other babies. I see no reason to send my Ruby away from her home.”
“YOUR Ruby?” she scoffed.
At this point I was mentally recalling the young man I socked when I was a teen because I was ready for a repeat. Praise God for HIS self-controlling Spirit!
“Yes. Our Ruby. And, you know that’s not we’re all about. We HOMEschool.”
So, yes, Ruby is homeschooled. I’m not about to try to foresee the future and guess what kinds of care she will get later on, but right now, today, by God’s grace, we are keeping her home.
She has lots of activities to do, and none of them are too hard for any of us to do with her. The challenge is in working them into our everyday routines and schedule, which, of course, would be true about any new addition to the family whether it be baby or animal or activity.
Here is Ruby learning how to use her “pincher” fingers to eat (rather than her whole hand). We cut off the tips of orphan (that is, non matching) baby socks so that she can only use her two fingers.
She is doing well! Here, for your interest, is more of Ruby’s homework assignments. I am writing these down “in English” so you’ll understand them, but know that some are a bit more involved than what it sounds like:
baby massage
mouth stimulation
tummy time
following directions
looking at pictures
hand songs & fingerplays
face-to-face play
swinging
assisted cross crawling
reading to her
learning to use a straw
blowing activities
directed play (like cars or blocks)
socks for feeding (like photos)
stroller rides
We’re so proud of her! And she’s so proud of herself!
Lacing Up My Shoes For The Road Ahead
Isaiah 35:4 Say to them that are of a fearful heart, Be strong, fear not…
Ruby had her first appointment with Cyndi Ringoen of Can-Do. Cyndi’s a certified neuroeducational developmentalist (say that five times fast!) who I met at a homeschooling conference last April. The woman is a wealth of knowledge and encouragement, and so we made the three hour trek to meet with her.
Ruby’s evaluation took about 90 minutes. It was mostly observation (of Ruby) and interview (of us); it was very thorough. After about a twenty minute wait, we were trained on how to do all of the activities that Ruby needs to be on this program, which took another 90 minutes or so. I could hardly keep up with the massive amount of information, and so allowed the video recorder to just think for me.
When I got home, I let the pile of papers I brought home sit on the counter for a good two days. Day three I dared to pick at it. How? How am I going to do no less than twenty-five activities with my Ruby multiple times a day? None of them are hard; after all, she’s only 15 months old. And many of them, we already do intuitively. And yet, when there is a checklist involved, and a time and frequency set, “mommy inadequacy” rears her ugly head (followed closely on the heels by “mommy guilt”).
Slowly, I’ve been working at it. I ordered some toys (tools), taught my olders how to keep her on her tummy, and substituted my classical mornings with solo Mozart. I put together a list of activities each child could do with Ruby during “their” play time with her. The main thing is, and this was the biggie: I chose (and choose) to remember that God knew what He was doing when He gave her to us, and so I must just plod along in faith the few steps ahead I can see, and not allow for the anxiety of mapping out the mountain ahead.
It’s going to be an interesting journey.
Watch your way, then, as a cautious traveller; and don’t be gazing at that mountain or river in the distance, and saying, “How shall I ever get over them?” but keep to the present little inch that is before you, and accomplish that in the little moment that belongs to it. The mountain and the river can only be passed in the same way; and, when you come to them, you will come to the light and strength that belong to them.
Mary Anne Kelty
In Her Own Time
Back in early spring I got some green bean starts from a neighbor, already vigorously growing in their peat pots. I remember being impressed by the head start, but wary of whether or not they would actually produce. Well, so far, I’ve gotten a handful of green beans and they are looking like they’re already spent. And this is how the plants look:
Not so well, as you can see. Bug eaten, and not very pretty either.
Now, on the other side of the rocky aisle, about two feet away, are the beans I planted from seed at the proper time. At this point I have a crazy amount of beans ripening on the plants. Plus they are all healthy and beautiful! I’m amazed at the difference!
_ I’ve been thinking of Ruby with this object lesson. She has down syndrome and is now 13 months old. The list of activities she cannot do is long, especially when I compare her to the other three babies of the same age that belong to friends of mine. But today, she creeped! She wiggled and squirmed and propelled herself forward to get the toy she wanted. This was a great milestone! She may not be sitting up yet, but I’ve learned that cross-crawling is more important, so I was thrilled to celebrate!
It just makes me wonder how much we push our children to learn things or to know things before they are ready for it. At the swimming pool last week I witnessed an angry and exasperated mother whose child would not enter into the water (and she had “wasted two months on this already”.) She belittled her child and walked off in a huff. I remember thinking that the wee child was being forced into a peat pot instead of growing roots in her own time. She just didn’t seem ready.
And I also think of how I push myself to learn *everything* all at once. I feel, and rightly so, obligated to know how to raise our children in the nurture and admonition of the Lord, what books and curriculum to use for homeschooling, how to properly prepare meals and care for the health of our family, all (and I mean ALL) about down syndrome, etc, etc, ETC. It can be overwhelming because I want to know these things now! But I, too, need time to grow, time to learn, time to recover from the mistakes I make. I can’t just barrel through. I need patience and persistence and sometimes, just simple plodding forward.
Ruby will do things in her own time. And she has been a good teacher to me in this, that my other children will do the same. And so, by God’s grace, will I.
Ecclesiastes 3:11 He hath made everything beautiful in his time.
P.S. If you’d like a really great book on this topic to share with your own blessings, check out Ruby in Her Own Time (and isn’t that an appropriate title?)
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