In 1987, the year Rick and I got married, well before we had any children, Emily Perl Kingsley wrote ‘Welcome to Holland’. It’s a sweet essay from a parent’s perspective of what it’s like to discover you will be parenting a special needs child, when all along you had been anticipating a ‘normal’ child.
I read it 15 years later, when Josiah was first born. Having a child with a disability she says, is like going on a greatly anticipated vacation, but ending up in a different country than you had expected. You planned for Italy and could hardly wait for the splendor and wonder of Italy. You boarded the plane with great expectations and enthusiasm, only to find the pilot screwed up somehow (my words, not hers) and you ended up in Holland. Rather than mourn the loss of Italy, Emily suggests you embrace Holland for Holland has much to offer you hadn’t ever considered.
She makes a point. Life isn’t over simply because you ended up somewhere completely different than you had wanted. The point is to embrace the new place, looking for the wonder and splendor it too has to offer. She gives a good perspective and offers some comfort.
However and this is a HUGE however; if you were immediately loaded up on a tour bus with all the other parents realizing you were unexpectedly bamboozled, and would now, by no choice of your own be stuck living in Holland, you might just tuck your tail and run. If the tour guide showed you some of the difficult places you would have to visit during your lifetime in Holland, you might look for a quick escape. Holland may have windmills and tulips and Rembrandts, but Holland is not Italy, not even close.
Holland is foreign and scary and often times lonely. Holland can wreck families and break up marriages. Holland often times isn’t even the final stop for many of us. Just when we are adjusting to life there, making the best of our situation, we get railroaded off to Timbuktu. The road you were on sharply doglegs off to the side. You look around but don’t see many people on the path you are walking. Why would anyone want to live in Timbuktu? How are you going to thrive here?
This is what it feels like when the road you travel with a child with disabilities becomes less and less traveled. When additional diagnoses are added, when more road blocks pop up than you had ever envisioned were possible. When you feel like you are forging the course alone, when there are no answers and no promise things will ever get better. Timbuktu makes Holland look like Disney World. If only you could get back to Holland.
On those days or in those moments when all seems bleak, please remember, it isn’t. Yes, living in Holland sucks sometimes, there I’ve said it. Living in Timbuktu is far worse. If you focus on it, of course you will be discouraged.
Shift your focus.
You didn’t chose your situation, neither did your child. But you do choose your perspective. And perspective makes all the difference in the world. Start by thanking God for the path He has you on, even if you hate it. Thank Him for entrusting this precious child to you and ask for grace to do the job well. It is only by His grace any of us can get through this. Thank your child for being a blessing in your life because he is and savor the moments you have with him.
Ask for help if you need it. Others are waiting and willing to help. Do not travel in Holland or Timbuktu alone. We are all here for you. Sometimes you just need to let us know you need help.
Make a list if it helps. Get out a pencil and paper and write down everything you are grateful for. Are you alive? Write it down. #1. I’m grateful to be alive. Do you have food, clothes, a place to sleep? Write those down. Those are numbers 2, 3 and 4. Can you see, hear, smell, taste and touch? Write ’em down. Do you have transportation, friends, a job, heat and air conditioning? Write them all, by starting each sentence with, I am grateful for _____. Read the list out loud just before you go to bed at night. Read it again, first thing when your eyes open each morning. Try this for 30 days and let me know what happens.
Here’s the best advice I can offer. If that dadgum pilot who screwed up and dropped you off in Holland ever climbs back into the cockpit, do not and I repeat, do not even think about getting on that plane!
You fill my old heart with joy and am thankful that I have been privledged to know your super famil . Hugs Virginia.
Oh Virginia, what a sweet thing to say! We are the privileged ones!! Truly, I don’t know where we would be without your great wisdom, support and guidance over the years. Quite honestly, I think some of us in this family would have kicked some of the rest of us in this family out of Holland or Timbuktu, without your intervention and assistance. You are a saint. We love you dearly and can’t begin to thank you enough! I just wish everyone could know you!!
I remember this very tale because it was in the late 80’s early 90’s that Norine and Betty and Moonyeen went to Canada to do training on how to evaluate your values around the whole issue of developmental disabilities (mental retardation in those days). The training was based on concepts about how to bring folks into full participation in the community and how to tell when you were asking your self the right questions and how you listened and observed to understand the message that non verbal individuals were conveying by their behavior and how to evaluate the conduct of caregivers (expecially professional ones). It was intense week and was on the collage campus at Mississauge University and had lots of tests and hands on experiences with the Larch Communities (Group homes for 6-8 individuals scattered out in the town in a very planned way to encourage each individual to become part of the community, not just in the community. Canada had closed several “schools” for the “Retarded” (one of which had 5,000 residents and moved most into the community and into smaller “schools” of about 100 individuals. Based on the work produced by Wolf Wolfensberger that had been there for a number of years. The first implementation of this concept was in Holand. This was thinking beyone the concept of normalization that we implemented in the early 70’s. The training was not about process, although there certainly was alot of that so that there was good data, but about recognizing all the typical baggage you bring with you around values for every one, and expecially people with lables. And to realize that you can not make generalizations about “the…..” because each person has their own needs to be met and that these relationships will last a lifetime. Each one will, like all of us, need trusted allies through the whole of our life and those relationships are more like family. You may only see them occassionally. but you just pick up where you left off. I enjoy your wonderful stories so much because the love shines through. Hugs to all
Wow, Sandy, that was beautiful! Your words were encouraging, transparent, honest, well-written! This is one of your best in describing your journey. I am grateful for the answered prayers of hugs finally coming your way!