Our “Trip to Holland” – the Next Chapter

Photos from  ASL SIGNS

More than three  years ago  I wrote a blog post that has since gone “viral”.   It is about our son, Seth and his premature birth story.   I originally wrote the blog as a letter to other parents and as a way to share with  our son about the “back story” of the early months and years of his life. Since then I have written updates and now I write another.

Seth will be graduating next week  with honors from Michigan State with a degree in Criminal Justice.  In 1992 the only request I made of our our son was to keep breathing.  Now we know he is has added much more to his repertoire of skills.

Below you will find the original post and updates.  Feel free to share as I wish that our story will give hope to others who are just starting on their trips to Holland.

So, as we head out to the MSU December 2013 graduation, we hope that our “little fella” will be adding yet another chapter to his already amazing life!

Are You on a Trip to Holland?

The poem written by Emily Perl Kingsley was cut out and pasted on refrigerator from February of 1992 until we moved to a new home in 1995. It was titled, “ Welcome to Holland”. In essence, it was a snapshot of what it is like to being unprepared when you give birth to a child who has challenges, such as medical or cognitive disabilities.

There is one section of the poem that I read over and over again, “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.”

My husband and I wanted to go to Italy and ended up in Holland on February 7, 1992. I should have known that our trip to second time parenthood would be bumpy as we were told that our second born was to be a girl. “Two girls, so nice”, my OB-GYN told me. Guess what? –  We had the first boy born in 28 years in my family when he arrived via emergency c-section! Not breathing right. Sugar too low, heartbeat too high. I could already feel the “plane veer” off course.

Days later we were allowed to go home only to notice that our little “fella” was turning the color of a Sunkist orange. Not good. Not good at all. Rushed back to the hospital to be told it was simple “jaundice”. Nope, nothing in the child’s life would be simple, I found out. Days go on and before the first actual tulip bloomed that year we were in intensive care with our young guy. Jaundice ended up to be a “liver problem” – not yet determined, but possibly very serious and could lead to severe retardation. Respiratory syncytial virus/ RSV nearly claimed his life. Reflux choked him every third breath. Our nightmare continued. You know you have a very sick baby when you can’t find room in the isolated PICU suite because of the number of doctors, nurses and respiratory therapists working with your child to keep him alive. You also know your baby is very ill when the nurses come and ask you questions such as, ‘Is there anyone we can call for you?”

Does God have a hotline, I wonder?

For any new parent who has a baby you know this is the worst part of the scenario- waiting. You wait to see if the tests are positive for illnesses that are unimaginable. You wait to see if the insurance will cover the rare and complicated blood work, machines that are helping your child stay alive or special therapy sessions ordered. You wait to see if you will ever have a “normal” life again for yourself, your family, your work, etc. Will your child walk, talk, eat normally, have friends, etc.? You begin truly HATE Holland.

Then little by little the waiting ends. Test results come back. Therapies begin. Hospitalizations end and you go home. But, for many of us, this is when you start a new journey in to the realm of Special Education. Here is the most ironic part of this story and the reason I am writing it for this blog. I am a special educator. I am a full fledge, certified School Psychologist that is trained with helping parents and children with special needs. All my training flies out the window as my mind is trying to process the months of evaluations, reports and recommendations from specialists. Ironic indeed. I have now changed teams! Instead of being the intervention specialist I now am the one calling our local school district asking for help from the Early Intervention Team! And I am so grateful when they appear at my door. But, I still have problems with paperwork and understanding all the information. How can this be? I do this job everyday and I am still wading through it because my head is so full of grief and confusion. The team helps me. Everyday gets a little better. Clarity arrives with every meeting or visit from a team member. Family members come on board to help. We get  through it.

Now fast- forward, our son improves with therapy as he starts to talk, walk (actually run) and become quite sociable. He has more hospital visits but he is deemed fairly healthy. His liver has a benign disorder and we are told that he shouldn’t go without food or enter in to the military. We can live with those two stipulations to have a benign liver disorder vs. the alternatives.

I also become a much better psychologist. Often I went to our refrigerator and I read Welcome to Holland. As I do I imagine my own fears, but also  see the faces and hear the sad, confused and sometimes hopeful voices of countless parents and children I have worked with in the past.

I am a better person because I stopped in Holland  rather than Italy.

As for the little “fella”, he is off to Michigan State University in the Fall.  He wants to help others by joining law enforcement as a forensic criminologist.   He has had his challenges, but nothing we couldn’t handle thanks to the help of caring teachers, healthcare professionals and family.

And guess where he suggested we go on summer vacation this year? Holland. And,  what team does he predict will win the FIFA World Cup- you guessed it… The Netherlands!  Well, I’ll be!!

Follow-Up... It has been a YEAR since I wrote this original post and have received notes from many parents who thanked me for sharing our journey and giving hope to theirs.  As for the “little fella”- well he has excelled beyond out wildest dreams at Michigan State University- with acceptance in to the honors college and dorm.  He is an amazing kid and still remains to this day my hero…

Second Follow-Up … My son is now a junior and living the average life of a college aged student.  The fact that I typed AVERAGE makes my heart sing, as for many  this is the bar which to aim and one during his earlier years that we weren’t sure would ever be attained.  An interesting twist happened a year ago… my son was so touched that I wrote this blog that he tried to connect with Emily Kinglsley, the author of A TRIP TO HOLLAND.    Unfortunately his attempts were unsuccessful  which made his Mother’s Day gift a bit of a disappointment for him.  However, knowing that he tried was present enough for ME!  I grow prouder and prouder of both of my children on a daily basis as they are kind and generous people who are doing the world of good for “tourism” in Holland.  XO to all parents with children that are the tulips of generations to come.

4 thoughts on “Our “Trip to Holland” – the Next Chapter

  1. I just wrote this sappy reply and the system deleted it. So now here is my “in-control” reply. I don’t know why I didn’t read your post last year before we knew, but I am so glad I read it now that we know my little grandson Theo – in London is growing up with cerebral palsy. He was born 9 weeks premature in 2012. He apparently thinks this is all a hilarious and enjoyable adventure. He gets to go swimming regularly and meet all kinds of people who think he is so cool – so what’s not to like? But, like you, I jump in and out of my professional mind, sometimes seeing a sign as clear as day then trying to convince myself it’s all in my imagination. So much to learn! But, the important thing is that being unique is not the same as being sick. No surgeries, no hospitalizations. Theo’s out on public transport or being hugged by different people every day – and he rarely even gets a cold. So reading about the beginning of your journey and reading about how things are now have both meant a lot to me and put so many things in perspective. I will share with my daughter and son-in-law. Then I will go online an start planning my next trip to England!

    Thank you!
    Karen Nemeth

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