What’s it like to be a special needs parent? We’ve been on this parenting journey for almost two and half years now. And we started out the gate as special needs parents. Very few people choose the special needs world. For the rest of us we are thrust into this place we didn’t expect to be.
Special needs parenting feels a little like you got a bucket of craft supplies, while everyone else got a neat craft project kit complete with directions and everything you need to complete your masterpiece.
Or as Emily Perl Kingsley wrote in her well-known essay Welcome to Holland, special needs parenting is akin to planning a trip to Italy, but ending up in Holland instead. This one-pager was printed off in one of the folders I received shortly after getting Harper’s Down syndrome diagnosis.
Welcome to Holland
It paints the story of welcoming a child into your life as if you are planning a trip to Italy. You get on the plane excited about your trip to Italy. When you land the flight attendant welcomes you to Holland instead. It’s not what you planned at all and you aren’t prepared. You read all the books on Italy and now you are in Holland. It’s different and everyone else is talking about Italy, but you aren’t there and you won’t be going.
But the longer you stay in Holland, you realize there is beauty and joy there too!
I found this story helpful to put words into what I was feeling in those early days. Even to this day I find it helpful. But it’s kind of a love it or hate it in the special needs world.
More alike than different
I’ve read some critiques that say we are all in Italy, but are just having different experiences. Like some people arrived on-time, some late, while others lost their bags and missed some plans. I like this viewpoint as well.
Yes, there are still some very unique challenges as we parent a child with different needs. But what I’m realizing is that every parent feels like they are thrown a bucket of supplies and they are supposed to craft something from it.
We are more alike than different.
It’s just a little extra
So, what’s it like to be a special needs parent? Speaking from my own experience of parenting a child with Down syndrome. It’s just parenting with a little extra thrown in there.
Sometimes it’s extra appointments and therapies or waiting for her to meet her milestones. But other times it’s extra joy, love and cuddles – Harper is the best snuggler still!
But most of all it is extra perspective on what truly matters in life.
Acceptance for just being you
When we heard those words, “Your daughter has Down syndrome” it immediately sent us into the unknown. It took courage to face our pain and grief, our new reality. But I’m so glad that God gave us the strength to keep moving forward.
Each day we discover more and more the radiant joy, love, kindness and acceptance for just being you Harper brings not only into our lives, but also into the world.
Photo credit: Laura Agaba
“But most of all it is extra perspective on what truly matters in life. ”
This is such an important life lesson. As I’ve moved into adulthood and taken on the roles of wife and mother, God has used specific life circumstances to grow me exponentially. Now that I’m (hopefully) on the back end of that circumstance I’m thrilled to share with others how God has used it and continues to use it for my sanctification and despite the pain of what I’ve been through I have the clarity now to thank God for the opportunity to go through it. You’ve had a unique priviledge given to you and you do a beautiful job of using the blog to share your heart and wisdom for others’ benefit. We are overjoyed to have Harper in our lives!
Its a balance between seeing all of life as unique to our situation (trip to Holland instead of Italy) and understanding that the human experience is one journey we are all on. It can be cliche in christian circles to quote the following verses as well as to say them in very inconsequential moments:
As for you, you meant evil against me; but God meant it for good, to bring it about that many people should be kept alive, as they are today. (gen 50:20)
and
We know that in everything God works for good[d] with those who love him,[e] who are called according to his purpose. (rom 8:28)
But the context of theses verses teach that no mater what our life circumstances are, God is there with us working all things in his providence to bring not only our own salvation, but of many around us.