How will you respond?
Another busy month and we are that much closer to spring! Yahoo! Being from Minnesota, by February, I am ready for a change in season!
I had the opportunity to share our story with a few groups that included future nurses, business men and women at our alma mater’s alumni breakfast, and moms from my MOPs group that were ready and willing to serve others. Besides the mission of Jack’s Basket, I explained in each of those talks that Jack is like your typical toddler…throws food on the floor to feed the dog, doesn’t like his veggies, and wrestles with his brother. Along with other unique things including that his therapists have become like family to us, he gets more attention when out and about than any of us, and he works twice as hard at things that many of us take for granted. I pointed out that the reality of our journey is that our unexpected news came at birth with a diagnosis of Down syndrome…but many of you have also received or will receive unexpected news. How will you respond? What sustains you, guides you, and carries you through these times?
I recently read in one of my devotionals, Heart of my Heart by Kristin Armstrong:
I urge you to live a life worthy of the calling you have received. Be completely humble and gentle; be patient, bearing with one another in love. Make every effort to keep the unity of the Spirit through the bond of peace.
Ephesians 4:1-3
Living a life worthy of the calling that you have received.
Living a life of purpose.
We had a choice when we got Jack’s diagnosis. Would we be stuck on what we wanted with our lives, or surrender our plan to what God wanted for us. Would we miss out on all the things He would teach us (challenging and joyful times) through this extra special chromosome or refuse to grow? What story did we want to tell? How many times we take the reins and refuse to see the beauty in trial. The beauty in struggle.
So we continue to pray for the blessings. We pray for the easy life. But what if we are missing so much of life when we pray for what is comfortable? When have we learned the most? In the easy moments?
Every day my newsfeed is filled with articles of people that are commended for their brave decision to terminate their child with Down syndrome. Specifically the one I read today talked about a women’s reaction to finding out the gender of her child and that the baby did indeed have Down syndrome.
“Only then, after I’d gotten to know my baby as well as I possibly could, did I feel I was ready to make the hardest decision of my life — terminate the pregnancy. And I would make it as a mother who wanted to do the best for her child.”
As she states in the article that after all her and her husband are very healthy vegans, she mediates semi-regularly, and that they tried very hard for years to get pregnant…as if this is all very important information and makes this diagnosis and decision that much easier or harder because clearly a life is not a life unless it’s perfect according to certain standards. So glad she added she is doing what is best for her child.
And that is how she responded:
“Thank you Yahoo Parenting for publishing another ignorant view, how others perceive what it’s actually like to raise a child with Down syndrome.
And so I respond to my calling. I think it’s time to change the way the diagnosis is given, how biased, misinformation needs to stop being given out to new and expectant parents. How each life should be celebrated. I share the truth about what it’s like to raise a child with Down syndrome. Is it easy? No. Parenting is hard and daunting. But as I stated many times before, what child doesn’t come with challenges and hardships? Why do we feel like we can share examples of stories of kids with Down syndrome running down the hallways, across the street, or out of control, and think that ALL people with Down syndrome do that? Should I assume because I am having a baby girl that she will want to be a cheerleader? That her life will be filled with drama and mean girls? That she will fit the stereotype that girls have been labeled by society? Doesn’t anything have to do with how you choose to nurture, love, and discipline your own child? Isn’t that the best thing for your child? Don’t you have a choice in how you choose to parent your child? Don’t blame society for your decisions, take ownership and respond to your calling.“
But…how will you respond?
In the verse noted above, it states that we should be patient, bearing with one another…I have to admit that these types of articles just frustrate me and ultimately make me angry at times. This part of the calling is emotionally exhausting. I have a hard time being gentle with my words, being patient, and loving. Please forgive me. I’m feisty, I rarely stay silent when these types of things are shared and downright pissed when these ‘parents’ are congratulated on being heroic.
Along with that, when I share the news that we are expecting our third child in June I am often asked, “Are you doing testing?” Now, I could interpret this as a common question as I am within a year of the magic age of 35…or the possible fact that I have a child with a chromosomal abnormality…I’m going with my bets on the latter…
“Wow, you’re brave to have another child.”
“Aren’t you scared you could have another child with Down syndrome?”
“Are you sure you don’t want to do testing?”
These are comments I am asked and I calmly filter them. What was the intent of the comment? What was the impact?
How will I respond?
“My husband and I decided (since that’s our choice) that we wouldn’t do testing unless something came up at our 20 week ultrasound that needed more attention (i.e., heart). Our chances of having another child with an extra special chromosome is 1%, 1 in a 100…but we also know that if God wants us to have another child with Ds, it’s a 1 in 1 chance and we think He has a pretty amazing plan for us.”
and my other response…
“Well, if this baby has Down syndrome and we find that out at birth….guess what…she’ll get a JACK’S BASKET!” Woop, woop!
My current version of being loving and gentle…I’m a work in progress. 🙂
*photos by Vick Photography
5 Comments
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Gonne Asser
Beautiful. Simply. Beautiful.
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Mary Smith
As always you are an inspiration and your blog is awesome! Jack is such an amazing little boy,I enjoy watching him grow through the pictures you & his auntie Jen share!
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edi
CONGRATS FOR YOUR FAMILY !!
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Carrie
What a wonderful ministry. I heard your story on Joni and Friends. I am the mom to a 25yr old young man with severe CP and is Micro cephalic.How wonderful it would have been to receive a congratulations basket when he was born. I also had so many questions when he was a baby and got not much "good" news from the medical community. My Mitchell is such a blessing to my entire family—as I know your Jack is. My daughter and I love to sew in our free time(she has 3 kids and I have Mitchell)..but we always find time—I think we will be making some burp clothes and quilts to send your way for these precious families. If you are ever near Cedarville,Ohio I would love to meet you and your family.
Jen Hines
Beautifully written. Thank you for your inspiring words.