Welcome to Holland

I had been thinking about this "essay" last week and then my Mom mentioned it to me in an email this morning so I thought I would share it. I think sometimes if Sarah had been born a typical child what I would have missed that I now have experienced and I wouldn't make the trade. But it still makes me sad to think of the girl I will never meet. I can't stay in that thought for long though because then I hear a little delightful squeal from the girl I DO know and it no longer matters. Maybe this is all too cryptic. That is not my intent. I am trying to focus on the blessing Sarah brings. She has touched so many lives. She brings the experience of loving and caring for a disabled individual to lives that may not have been touched by disability otherwise. In spite of the challenges that come along with it I am enjoying raising Sarah more than I could ever have imagined. One of the points I am touched by from the poem is that it takes a while and you have to catch your breath in order to start enjoying the change in plans. Very true. Sometimes I still forget that and also if I spend too much time mourning the loss of what I thought I would have I will not have time to enjoy what I do have.
Enjoy the essay.....


WELCOME TO HOLLAND

byEmily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Should we settle for a new "normal"? Do we even have a choice?

We have been struggling with Sarah's seizures here in the Piszar family for over a week now. A change seems to have been precipitated by a prolonged tonic-clonic seizure on Thursday morning and she has had daily seizures since. We are working with the Dr. to find a remedy for this. Her medications have been increased and an additional one has been added. For several days after she was groggy and out of it. Then slowly we saw the return of the perky little girl we know and love. Finally, yesterday, she blessed me with one of her precious hugs. She had not given me any spontaneous ones for over a week. I couldn't help but think--"Oh yeah! My little girl is returned to me!" The seizures still persist. She's had 2 already this morning/afternoon and we (Sandor and I) can't help wonder to ourselves if we are settling into a new norm for Sarah. The Dr. explains that children with epilepsy sometimes go through periods where their seizures are difficult to control. And I actually don't want her medicated to the point that she has none. I am OK with some break through activity but it shouldn't be THIS frequent. So with each day that goes by and we continue to have seizure activity I find myself become more and more accustomed to it. I guess if this is to be the new norm we need to rest in God's wisdom and trust that He will work this out for us and for Sarah according to His will. I can find peace in that and trust that in time weather the seizures are resolved or not He will carry me. I continue to be amazed at this path my life has taken. I never imagined what it would be like to care for and love a special needs child. I never really believed I would have one. It is not without pleasure and pain.

Verse for the Day

He Giveth More Grace

He giveth more grace when the burdens grow greater;
He sendeth more strength when the labors increase.
To added affliction He addeth His mercy;
To multiplied trials His multiplied peace.

His love has no limit,
His grace has no measure,
His power has no boundary known unto men;
For out of His infinite riches in Jesus,
He giveth, and giveth, and giveth again.

When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we've reached the end of our hoarded resources,
Our Father's full giving has only begun.

Annie Johnson Flint
1866-1932


These are special words that a woman shared with me after Sarah's initial diagnosis back in 2004. Many times I have run back to them for reminding. But I have to ask myself why I wait till my strength is gone, my endurance is spent, and my resources emptied. Why don't I run into my Father's open arms long before I reach the end of myself?? I wish I knew and I can only hope and pray I learn to run to Him sooner and sooner. He is the only source of true PEACE.

Saying "I Love You" Without Words

As we approach Valentine's Day love seems to be everywhere. I've been thinking about it quite a bit. There are lots of ways to say, "I love you." There is the traditional method of just saying it and then of course there are the methods we use to say, "I love you" without words. I imagine many things come to mind. Perhaps its in doing something nice for someone, giving them a back rub or gazing into their eyes. Sometimes its just listening while they vent. There are many, many ways.

But how do you communicate "I LOVE YOU" to someone who doesn't speak? You can say it but do they grasp it? And can they reply in kind? Of course I am thinking of my Sarah. Today she is FOUR YEARS OLD!! I look at her and Timothy and just can't understand where the time went. Yet here we are. She and her twin are so very different. Sometimes the differences are painful to note but as time goes by they are becoming less painful and just apparent. However one thing I have often longed for is to hear her sweet voice. And I do have that pleasure as she babbles away making all kinds of chattering noises. We do not converse in the traditional sense. But we DO communicate. And lately she has begun saying, "I love you."

She has often been rather coy. She turns her head away when you ask for a kiss or when you offer one. She frequently pushes back when we dole out hugs. She does have her affectionate moments. I just think she wants them in her own way. She will often pat someone's back as they hold her--saying in her language, "Its good to see you and I am glad you are here." She will sit by you and pat your leg or arm. She will come to you and climb into your lap or if you are on the floor already, well look out, because she will just back right into your lap. She will often greet people by walking up to them excitedly and patting them. Lately she has begun dispensing hugs on her own. When it first happened I had to stop in the middle of what I was doing and stand in awe. Sandor and I couldn't believe it! And we said to each other, "She's saying I love you." She has taken to coming up to me, usually when I am busy at a task, and squeezing my leg. She wraps her small arms around my leg and hugs it with all her might. Its precious. No one ever taught her to do this. Its so spontaneous and sweet. And I truly believe she is demonstrating her affection. Of course I reciprocate because I want to encourage this communication and keep it coming---I enjoy it.

So my Sarah, always my teacher, has shown me how SHE expresses love without ever saying a word. I do like to hear those 3 little words too and Timothy showers me with them all the time along with a face full of kisses and that's cool too.