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the ups of down (part 1)

Okay.  So I think that I am going to have to post my thoughts on Down syndrome in a series.  There are too many questions to make it one long post. 

This will be the first post.  Please understand that as I share, these are my thoughts, my experiences, and our journey with Down syndrome.  In no way am I implying that our experiences will be the same for everyone. We all have unique situations that we have to deal with. I am by no means an expert on the condition–after all, we have only been parents to our children for one year.  We’re learning as we go.  Also, I totally understand that we all have different journeys to walk–mine will never be the same as yours.  These are my experiences that I share–no judgment on anyone else and where they’re at in life.  Ever!

Yesterday I received a question that I thought I would address first as it is a very real thing for anyone journeying the road to adopting a child with any special need really.  I thought I would share my heart on this subject first, as it lays a good foundation for the rest of the questions regarding Down syndrome and my perspective on things.

Personally, I would never adopt a child with an intellectual disability because I don’t feel I’d have the patience necessary to raise them, particularly as they get a bit older. (It’s easy to be more forgiving to a small child; I think many people are more apt to get frustrated when the child is older, and intellectual delays are more pronounced.)

I have a close friend with 3 adopted kids with T21, all teens now. So I’ve seen first-hand the amount of patience that’s required. They are all moderate-low functioning and they have many behavioral issues — tantrums, an inability to complete simple tasks like removing and replacing clothing when they go to the bathroom, and now that hormones have emerged, sexual issues (e.g. one son simply cannot understand that it’s unacceptable to fondle himself in public.) All this, despite a lifetime of early intervention, therapy, etc.

What’s even worse is the public’s reaction. When a child throws a tantrum or walks out of the bathroom with his pants at his ankles, it’s not a big deal. But when they look like adults, it’s a different story.

I see this, and I realize I could never do it. Never. I simply wouldn’t have the patience. Do you ever worry about these things? How do you plan to cope with the frustration? Do you ever fear that Hailee or Harper will be adults who are beyond your control? (I look at my friend’s kids and they were all very well behaved as youngsters…the problems arose when they reached the pre-teen/teenage years.)  Thoughts?

Thanks for the question.  Here goes my story.

I’m sure that there is a point when we all have to consider how we would ever deal with these situations, even when we’re pregnant with our biological children the thoughts cross our minds. I remember being pregnant and praying with all my heart that my kids would be born “normal.”  I remember wanting to know their Agpar score before they had even taken twenty breathes, and breathed a huge sigh of relief when they scored high. Whew!  I remember counting fingers and toes and scrutinizing my newborn’s wrinkly bodies to make sure that everything was in its place, where it was meant to be. 

Would I have the patience, the stamina, and the ability to love a child not born healthy, I wondered?

As my babies grew, I kept a very watchful eye (to the point of being obsessed) on their development.  Were they hitting the normal milestones on time?  Could they do the things they were meant to do at any given age?  I learned very quickly how to compare my babies (I only had two at the time) with other kids.  Any area that I noticed them lagging in sent me into a tailspin.  I was a mama on a mission–bought the latest and greatest educational toys, fed them a natural diet for increased brain power, and Baby Einstein became my new BFF. Yup, more than anything I wanted my boys to be “typical.”

Growing up in South Africa I remember so clearly when my Mom used to pick me up from school.  On our way home we would drive past a school for special-needs kids.  These kids all had profound needs.  Each afternoon as we drove home, all the kids had recess and would be out on the playground.  They always caught my eye.  Some would be getting assistance to finally reach the other end of the monkey bars.  Others would be off to one corner of the playground laughing about something.  They always looked so happy.  That really stood out for me. 

But I always looked at those sweet kids and thought to myself, “I could just never do that!  Ever!”  I even told my Mom that on more than one occasion.

And so when my own kids developed on target and there were no concerns about autism or any kind of cognitive delays, I really did feel incredibly relieved.  After all, I felt that I just could never, ever deal with “issues” that so many children are born with.

It’s just as well God only reveals His plans and purposes for our lives one little baby step at a time.  Had I known what was in my future back then…oh my word!  But God in His infinite wisdom equips us as we journey along the road He calls us to walk.

Then, in 2004, God led us specifically to the world of “special-needs adoption.” You can read my story here and here. Heck, we never even knew what that meant when we started out.  What was “special needs?”  A missing finger?  CP?  Something more?  We were clueless.  “Special needs” was always something other people dealt with…not us.

You know, the God of the universe is just so AWEsome.  It is truly only because of Him and what He has done in my heart over the years that I can share this stuff with you.  It is only because of the journey He has taken me on personally that I can sit here and testify to the incredible things He has done in my heart regarding what I can and cannot handle in my life. 

I am so thankful that He knows me better than I know myself.

When I started researching adoption back in 2004, the Lord started doing something in me. A shift started happening.  After filling out an application with an adoption agency, we received the welcome packet.  Enclosed was a long list of many, many special needs.  We were required to put a check next to the ones we felt like we could handle.  I remember Anthony and I looking at that list (and not even knowing what half of them were), and instead of thinking to myself, “Nope, can’t do that…or that…or that….or that, ” something changed in me.  I began to feel open and more yielded to the Lord’s will for my life than I ever had been. I read the words Cerebral Palsy, Down syndrome, developmental delays, and autism…and for the first time in my life I started wondering, “What if?”

What if God wanted me to take on a child with that special need?

What if my own child had been born with one of these disabilities?

What if God thinks I can handle it…even though I think I cannot?

What if He chooses my family?

What if all this is NOT about me and what I think I can handle?

What if?

Almost overnight, I was different.  God had opened my eyes and my heart to a whole new world I hardly even knew existed.  The world of adopting a child who, in the eyes of many, was less-than-perfect.

That night, as Anthony and I looked at the list in our hands, we didn’t check any particular box, or purposefully leave any unchecked.  We left the questionnaire untouched…and at the bottom we wrote a note…

“We’re trusting the Lord to show us OUR child, no matter what is “wrong” with her.  He’ll show us the ONE.”

And yes, He sure did.  If you’ve read my story, you’ll understand.  Hannah-Claire was the one He chose for us, since before the foundation of the earth.

From that night onwards, we knew in our hearts that life as we knew it would never be the same again.

Boy, were we right.  If you had asked me even six years ago if I would ever have opened my heart to a child with Down syndrome I would probably have said a resounding, “No way!”  Like many, I honestly never thought that I had what it takes to parent a child who would always struggle in life.

Then…I surrendered.  I gave up my desires, my will, my fears, my shortcomings, and my life completely to my God.  “Have your way in my life, Lord Jesus,” I prayed.

But here’s the thing–and not everyone will agree with me (which is perfectly fine).  I believe with all my heart that when God calls us to do something, He gives us EVERYTHING we need to fulfill the call.  With excellence.  If we give birth to a son who has Down syndrome, or if we welcome a child into our home through adoption….it’s ALL by His hand.  It’s all part of His plans and purposes not only for that child, but for us too.  He knows best–even when I think I do.

Was I prepared to parent a child with Down syndrome?  Heck, no!  We were clueless.  When we committed to Hailee (we only committed to one child when we began our journey) I got into some seriously researching.  I scoured books and the internet for resources that would help me feel equipped to face any challenges that we may have along the way.  You know what happened?  It overwhelmed me!  I read hundreds of scenarios about what may or may not happen to my daughter.  I got to a place where all the what ifs and maybes started taking priority over the one thing I knew was most important….to love my daughter with everything that I had.  I knew that things would fall into place.  I knew that God would lead and guide us daily as we learned how to parent our new daughter.  I just couldn’t live my life on high alert for the gazillion things that could possibly go wrong in Hailee’s life.  Now I’m not for a single second suggesting that people should not educate themselves.  Education is a good thing.  Mine was just a little too obsessive.

I decided in those early days that we were going to love every minute that God blessed us with Hailee–whether it be three years, ten years, or a lifetime.  That’s what mattered most.

That attitude is pretty much how we live, and how we raise our children.  Yes, we are fully aware that things do go wrong and that the stresses of parenting these children will come.  We know that as Hailee and Harper grow up we will face unique situations. They too may come walking out of public restrooms with their knickers around their knees.  But you know, we will face issues with our “typical” kids too–they’ll just be different. Keeping children on the narrow road these days takes strength, courage, and whole lot of faith. 

Will I have the patience?  God being my helper, yes, I will. 

Am I patient now?  Not always.  Like everyone, I have my moments when situations get on top of me and unkind words come out of my mouth.  I have such a long way to go.

Anthony and I are very realistic about what lies in our future.  We know our trials will come.  Trials will always come, friends–no matter what age our children are, no matter what labels they carry, no matter how rosey things are when they are little.  We know that fully well.  We don’t live in la-la land.

Will we be able to handle things?

How will we deal with adolescent children who have delays?

Honestly, I have absolutely no idea–because we’re not there yet.  I can’t even think that far ahead. Although,  I am starting to think that we’d better start stocking up on duct tape so that we can tape our girls clothes to their bodies should they have the urge to get naked in public.  Just kidding.

Seriously though, the only thing I know and believe to be truth is that God’s promises are for me and my family.  And when He tells me that I CAN do ALL things through Christ who gives me strength (Phil. 4:13), well, I believe it.  I believe that when we face the issues the commentor above mentioned, we WILL be able to deal with them.  Simply because God said so.

And that’s good enough for me.

Oh, and about what the public thinks about my children? I couldn’t care less! We have vowed that our children with Down syndrome will live normal, healthy lives just like our other children.  They will go where we go, do what we do.  They will always be a part of our daily lives.  No matter what anyone thinks. And that includes as they grow up.  They are precious, treasured, valued and amazing members of our family….just the way they are.  Period.  I pity anyone who disagrees with that.

I believe with all my heart that God never gives us more that we can handle.  And from experience I can totally say that God never, ever gives us the easy road in life, no matter what we’re called to do.  It’s when the trials come and the road gets long and winding that we see His faithfulness, His glory. That, my friends, is what I live for.

Our future?  Our girls future?  I’m so thankful that it is NOT my concern…because my Father in heaven has already got it.