Down syndrome has transformed my world, but not in the way you might expect.
Sure there are the usual blessings that come with having a child with special needs (more patience, letting go, appreciating the small victories...cue the made for television Hallmark movie please). But I'm talking about the BIG STUFF here, people!
Because when it comes down to it, the simple fact is that the three most important changes of my life are a result of Emme and her elegant ability to close doors....when I was lost in a sea of overwhelming options.
The unfortunate reality is that you’ve got to keep it pretty simple with me, especially when it comes to a New Life Plan. I need small words, extra large print, and pared down choices (Ok...like actually just one choice is most helpful...otherwise I totally short-circuit and start rocking that sad little fetal position).
Sure there are the usual blessings that come with having a child with special needs (more patience, letting go, appreciating the small victories...cue the made for television Hallmark movie please). But I'm talking about the BIG STUFF here, people!
Because when it comes down to it, the simple fact is that the three most important changes of my life are a result of Emme and her elegant ability to close doors....when I was lost in a sea of overwhelming options.
The unfortunate reality is that you’ve got to keep it pretty simple with me, especially when it comes to a New Life Plan. I need small words, extra large print, and pared down choices (Ok...like actually just one choice is most helpful...otherwise I totally short-circuit and start rocking that sad little fetal position).
God knows me pretty well, and He’s working with what He’s got here. And what He’s got is one chick who understands closed doors much better than open ones. I’m talking VERY closed doors – the kind you can’t barge through no matter how hard you push down, kick over or try to sledge-hammer through.
Simply put, Emme is the rudder of our family’s ship, guiding us through the crucial decisions...leaving my nearly 10-year career job, moving to Africa and then moving back to America.
Let me back up…
Emme made quite the grand entrance into our life. To say the least.
I was a bit surprised, as a third-trimester pregnant mama, that they put me on “high risk. After measuring the baby’s development, they thought she seemed a wee bit small. Teeny-weeny, if you will.
I thought, “Oh you doctors….always so dramatic. Always so ‘someone’s gonna die’. Please. Keep your lab coats on.”
Overly confident with all my hard-earned medical knowledge from watching several seasons of Private Practice, I tried to hide my “non-compliance.”
(honestly...don't these look like people whose medical expertise should not be called in to question?)
My sister-in-law (who was a labor and delivery nurse and acutely familiar with my tendency to downplay - aka “ignore” - sound medical advice), warned me what happens when you don’t adhere to your doctor’s orders (apparently they really are “orders” and not “strong suggestions,” as I had presumed).
She told me that they label you as “Non-Compliant” in your chart. Seriously. Be forewarned. Do you know how hard it is to get that label removed? Even with a sudden rash of good behavior? Perhaps you remember the Seinfeld episode where Elaine was labelled as “difficult” in her medical chart and couldn’t get single doctor in town to see her? Not ideal, folks. Not ideal.
So all that to say…I was a very “good girl.” I went to all my extra “high risk” appointments so they could closely monitor the baby’s weight and heart.
I outwardly complied. But still, I continued to think the doctors, although amazing and among the best in the state, were a little overly cautious.
And of course I thought I knew THINGS. I can’t even tell you what these “things” were that I thought I knew. But I KNEW them.
One thing I did know without doubt…was that I was average. An average student, average driver, with average talent. So I presumed I would be having an average pregnancy and deliver a cute, but most likely average, child. This was fine with me.
One should never underestimate their own ability to defy the average.
So one day, after a delightful lunch at Boston Market with my hunk-of-a-husband, I toodled off to my 36 week doctor’s appointment.
This time, as they monitored her heart, they became VERY concerned. The heart-beat was not very strong.
Still…I thought “Really, people? Simmer down willya.”
After all, in my very weak defense, they had thought Jensen was a bit too small and induced me a week early, only to discover she was perfectly fine and not as “wee” as they presumed. I was feeling pretty high-and-mighty about that.
So there I was…at my little doctor’s appointment, trying to hurry to get back to work and all my Very Important Projects.
They: Julie, we are concerned. Her heart beat does not look very strong.
Me: Really? (I tried to covertly shake my tummy a bit to “perk her up” and “help” her heart rate...that didn’t work at all. I probably looked more like a large pregnant lady with embarrassing gas issues).
They (kindly ignoring my gas issues): We would like you to go up to the hospital right away to have one of the perinatal doctors see you.
Me: Really? (then remembering the impossible-to-remove-taint of “non-compliance”) -“Ok, I’ll go.”
So I went up the hospital and was a bit shocked that they wanted to “check me in.” Then was more surprised that they wanted me to take off my office clothes, put on a hospital gown, start an IV and call my husband. Didn’t they realize I had projects due? It’s very hard to rush back to work when you are tethered by IV’s and whatnot.
I started to get the distinct impression they wanted me to stay.
They: We really think you should call your husband.
Me: Really? I should call Karl now? (still thinking I needed to get back to work for my projects - I know, I know…enough with the projects already).
They (my dear friend Sara Nylin, a labor and delivery nurse, showed up at this point): Yes, Julie!! Call Karl! Now!!
Me (calling Karl): Hey babe. “They” say you really should come up here (talking loudly and smiling to the nurses with a big thumbs up) – then very quietly off to the side “Everyone is being really dramatic. I’m SURE it’s all fine. No need to rush…if you have other things to do…
But of course Karl completely ignored my casualness and flew to my side. Once there, the doctor said we needed an immediate emergency c-section.
Huh. Now that caught my attention. They said her heart was very weak. She probably would not make it much longer and could not sustain a natural birth.
I was suddenly feeling VERY compliant.
Doctors know things too. And they know when people can die. And if we didn’t comply our little Emme would not have made it.
So there I was…moments later, sprawled out in the operating room for my emergency c-section…feeling vulnerable and shaken. And then they pulled her out. Sweet, perfect Emme. She had the cord wrapped around her neck several times, one leg was totally white and her heart was quite weak. So weak she wouldn’t be able to nurse or suck a bottle for several weeks.
The doctor said, “She has some facial features we are going to look into.”
And then I knew. I KNEW she had Down syndrome. I knew that the average I had been banking on was very, very far away.
Many of you have heard the story…it was shocking and hard, but I really did feel Jesus meeting us and we were enveloped in a “grace bubble” that allowed us to see Emme as a gift.
And she is a gift.
Not to romanticize Down syndrome. Emme is great because she is Emme. But Down syndrome isn’t easy. Awkward and inconvenient stages of childhood (like learning to crawl, walk, use the toilet, speak) don’t just take the usual months…but years. YEARS, people.
I sometimes look at other 7 year olds (communicating clearly with their family, dressing themselves, doing a simple chore, going on play dates, invited to parties, etc) and know we are a long way off from that.
BUT what I am deeply grateful for is how Emme has closed doors.
Again, let’s remember, I can’t handle a lot of choices.
Closed Door #1: Once Emme, in all her glorious Down syndromeness, took the stage, and I never went back to work. I was managing a little web site company I loved, where I had been employed just under 10 years. I was not going anywhere, or so I thought!
After maternity leave it became obvious I should not go back to work with this little love bundle – and that was that! I stayed on for a bit working part time from home till the owner could sell the company.
For me this was big stuff. Closed Door #1 was to the career where I had invested so many years.
Closed Door #2: When we first started dating and were all smoochy-smoochy, we knew we wanted to go into overseas missions. This dream carried into our marriage. Even as we started successful careers, we stayed in an apartment because we knew we could be leaving for the mission field at any point and didn’t want to bother with a house to sell.
After Emme was born, we began to think it wasn’t possible to live overseas. It seemed like there were so few countries that could provide any kind of support for children with special needs. So many closed doors.
I remember it distinctly - it was a Friday and we felt it was time to give up the dream to “be missionaries.” That day we had toured some new construction homes and picked out our floor plan to build our “dream home.” Interestingly enough, when we saw some friends at church that next Sunday, they mentioned that there was a couple serving with All Nations in Cape Town who also had a child with Down syndrome.
That couple in South Africa graciously video skyped with us (I’m sure we seemed like crazy Americans with all our incessant questions) – and they told us all about their positive experience for their family in Cape Town and with All Nations.
(here we are with that family at Emme's last birthday party)
After realizing Cape Town offered some of the needed services for Down syndrome, especially for that development stage before school, we began to look more closely at All Nations and fell in love with their mission of using the simple church model to bring Jesus to others.
Without realizing it, Emme one again synched the deal. She in effect closed the door to all the seemingly endless possible places where we could go that lacked services for special needs, and flung the doors wide open to South Africa.
Just for extra fun and more confirmation, God also anonymously provided $1200 in cash in the mail after Karl had a dream about it (read that story here). Who does that?? Who sends 12 one hundred dollar bills IN THE MAIL IN CASH? I guess God does…in your dreams and then makes it happen in real life, if you’re one of those tough-to-convince cases like us.
(Emme's first year living in South Africa)
Anyhoo…fast forward six years, and enter Closed Door #3: This year it became clear that South Africa had served Emme well, but she was at a new stage in her development and needed the services that America could offer.
We tried everything we could to make “Africa work for Emme” (horse therapy, physical therapy, speech therapy, school facilitator, etc.)…we desperately wanted to stay and did EVERYTHING we could think of. But once again those big doors slammed shut and America swung wide open.
(Emme and her Horse Therapist)
(She misses her horses! She loves to ride them bare back)
So here we are…having traversed across the globe, moved to another country, started over with new friends, new jobs, new projects, new culture – to move back again at exactly the right time for us.
After being here 3 months, it’s obvious how well both Jensen and Emme are doing in school. Their teachers are nothing short of God's Biggest Blessing Ever! The girls are growing leaps and bounds. Settling in. Thriving.
It’s clear we are exactly where we need to be.
So when you really get down to it, one of the biggest blessing of Down syndrome has been those heavy, rusted closed - doors locked so tightly that after we pushed and pushed as hard as we could…our only other choice was to look over our shoulder reluctantly to see what other door might swing open.
So my encouragement to you – when the “average” life you have come to love suddenly becomes very “un-average” and you are thrown into something that has rocked your world…embrace it.
When everything is crashing down and what you envisioned for your life seems lost, press in!
It’s possible that the only way God can put you exactly where He wants you…is to take away your comfortable averageness and close some big, fat ugly doors.
Down syndrome is the most tiring, amazing, frustrating, incredible blessing of our lives. It’s what it took for us to follow Jesus to Africa and follow him back to America. It’s ripped away our average and slammed doors hard in our face.
My take-away? It’s not about going to Africa or staying in America. It’s about embracing the non-average path and falling in love with those big, ugly doors – all the while deeply trusting, as if your life depended on it, a God who loves you enough to allow both of those things to rock your world to its very core, then shape your life into something stunningly beautiful.
In closing…one of Emme’s favorite things to say to just about everything is, “No! All done!” And I pretty much want to say this to God all the time. But I want to change that to “Yes! More!” More of what you have for us. No matter what that is. No matter where. No matter when.
So don’t shake your fist at that closed door too long. Look over your shoulder, just to catch a glimpse...and notice the new door, open just a tiny crack, waiting for you to nudge it open.
Video of Emme saying, "No! All Done!" (after I tell her I love her) - 10 seconds
Can't get enough of Emme? Here's more Emme Fun! - 31 seconds
Emme at Dinner
One of Emme's most amazing accomplishments since she started attending school in the US is her ability to answer questions in the negative or affirmative. Here she telling me about school (she went to one of those bouncy jump places for a field trip) and is saying "OK" to more pizza and "No! All Done!" to more grapes first. Good job, Emme!
One of Emme's most amazing accomplishments since she started attending school in the US is her ability to answer questions in the negative or affirmative. Here she telling me about school (she went to one of those bouncy jump places for a field trip) and is saying "OK" to more pizza and "No! All Done!" to more grapes first. Good job, Emme!
