Category: Health

Once again I have been asked by several people to repost this article.  If it helps one parent get through the tough times of having an unexpected premature baby, a child with special needs or another tough circumstance then it is worth the few minutes for me to post.

Are you on a “Trip to Holland?”

The poem written by Emily Perl Kingsley was cut out and pasted on the 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 be 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 secondborn 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 our son arrived via emergency c-section. Not breathing right. Sugar is too low.  His heartbeat is 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 as 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 being a “liver problem” – not yet determined – but possibly very serious and could lead to severe developmental delays. . 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 this type of scenario- the 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 to 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 into 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-fledged, certified School Psychologist that is trained to help parents and children with special needs. HOWEVER… 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 every day and I am still wading through it because my head is so full of grief and confusion. The team helps me. Every day gets a little better. Clarity arrives with every meeting or visits from a team member. Family members come on board to help. We get through it.

Now fast- forward, our son improves with therapy and 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 to 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 fridge and I read Welcome to Holland. As I do, I imagine my own fears, but also I 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”, well 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 teams 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 I 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 our wildest dreams at Michigan State University- with acceptance into 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.

Update: February 2022

The little fella isn’t so little. In fact, he is quite an adult and this mom couldn’t be prouder.  He works diligently to help keep this world a safer and kinder place in ways that I couldn’t explain to you as his job is both complicated and needs much discretion.   And in the 30 years since his birth, he has allowed me to share his story to help others.  Plus, he has become a homeowner, a super attentive boyfriend to the amazing “S”, an awesome brother, and just a really groovy guy.  Yes, this mom sits in awe of how the little fella who barely survived now teaches others so many lessons.  Most of all – just keep breathing.

The author and her son when he was only 5 months old. Keep in mind we are at the beach, hence the “bad hair day!”

The premature “baby”, Seth, on his HS graduation day, 2010!