Welcome to Holland

Welcome to Holland. Yup that's right Holland. Today's post is a rant or vent if you will on exactly what my husband and I have been going through. We were planning on Italy and got Holland.




Confused??? Yes?? I thought so. Let me explain.

There is a fantastic poem that sums up life with a special needs child.  The metaphor in the poem is what I am referring to. The poem is written by Emily Perl Kingsley. She is a writer for Sesame Street and her own son Jason was featured on the show many times. 


Emily wrote the fantastic poem "Welcome to Holland" to try and allow others to understand what it was like to have a child with special needs, in her case Downs syndrome. She writes the poem to give a very strong metaphor about preparing for a trip to Italy (having a baby) and getting off the plane unknown to her in Holland ( having a baby with special needs). I would encourage you all to read the poem. Go to Google and type in Welcome to Holland or you can watch the video of it being read below that I found on YouTube:







This is the closest thing I have found to explain how overwhelming the December night was for us. Everything went from the highest of high to the lowest of lows.

I will never forget the sound of the air being shut off at Valley Regional so that the LifeFlight Helicopter could land.  To continue with the metaphor of Emily's poem, when we arrived at the IWK hospital it felt like Ashley and I had been thrown from a plane somewhere in the middle of Holland with no map and limited Dutch speaking skills. What Dutch we had only made us worry and that much more afraid.

The journey has been very overwhelming thus far. It is something you can't comprehend totally unless you have been through. There is a quiet unspoken language between parents in the NICU/PICU. It's an understanding. The quiet smile and nod as you sit there by your little one, things beeping, flashing or respiring. It is the simple understanding of someone who knows how you hurt, how you want things to be okay, how you want to do something but there isn't anything you can do.

Holland for us was uncharted territory. Pierre Robin wasn't something we were familiar with. We didn't know anything about it. The more we found out, the more afraid we were. Then there was anger and some days there still is. I won't deny it. I was angry. I am angry. Why? Well for numerous reasons really.

First there was the finality of everything.The phrases that started "Your baby will never..." or "Like a normal baby" infuriated me and still do. It was like these medical professionals had a magic ball and decided to tell me our future. In a number of cases they were wrong. As a parent you feel like saying "See what do you know?" but you realized that wouldn't do any good. Yes, the medical profession does this so we as parents don't hold out false hope. So we don't hang onto a dream that will never be realized. Still my husband and I kept trying on many fronts and won.

 Next was how impersonal everything was. It was always cold and clinical. I hated being anywhere near when rounds were going on. I hated how they turned Ben from a baby into a case...not even a patient really. It was always "This is the Pierre Robin baby, baby male Floyd (eventually Benjamin Floyd)...born blah blah blah. I hated it. I know clinically that is how it is done. As a parent, however, it isn't easy. When we were admitted in January I think it was worse. I know the clinically correct term for the reason for admission was failure to thrive, this doesn't make it easier to hear as a parent. Especially every morning for 30+ days. There are only so many times you can hear the team come in and say "This is the Pierre Robin baby, Benjamin Floyd, 6 weeks, readmitted for failure to thrive"....blah blah blah without feeling like you are the failure. That somehow there is more you could have done, something you should have done, or thought of that you didn't that would have prevented the admission and problem. Even though deep down you know there wasn't anything more to be done.

Finally the very few who have decided to be nonsupporting in our unplanned trip into Holland make me frustrated and a bit angry. They meet us with attitudes that somehow imply that this is our "mess" to get out of.
I'm sorry but there wasn't a form to fill in that included a box as to if we wanted a child with special needs or not. Would I change Ben?? NO NOT FOR ANYONE OR ANYTHING, to me he is perfect.
Being thrown into the middle of this kind of a situation takes a very large toll emotionally, physically, financially and psychologically. To be honest and blunt about the situation, the only way to cope is to accept help and in some cases ask for it when needed.

Help comes in many forms from picking up the phone and calling/texting,  helping arrange care for the other kids, making a meal or helping cover financial costs among many other things. In some cases support has come from family and in other cases complete strangers. By accepting this help we are doing NOTHING wrong.

Please do not feel we are looking for handouts and please try and find out the whole story before passing judgement on us. We are NOT out for someone else to pay our tab or deal with the unpleasantness so we don't have to. We want understanding and support.

To answer the questions I have had about the pay pal donate button on the right (namely why is it there), it is there because we have had offers from friends to help us cover the costs of Ben's care in the city. This gave them a way to help without us giving our financial information out. It was an offer and we accepted. That is it.

Now I am sure this has raised the question of  "Isn't health care free in Canada?" well yes...to a point. What people don't seem to remember is that Ben is the patient. While I roomed in with him, I was NOT a patient. While this seems obvious and trivial it makes how you view the situation totally different. Ben was able to stay for free in the hospital. I was allowed to stay with him. Ashley, however, was not able to since he had Harrison with him. This means that in order for Ashley to be close by to emotionally support Ben and I during all the procedures he needs to PAY to stay somewhere. Then there is that matter of meals. Ben was able to get breast milk or formula. That was the patient meal. This means for Ashley, Harrison and I we needed to pay for all of our meals. Three a day for 30+ days. That is a LARGE chunk of change. Then there is the fact we had to buy a van to get Ben's car bed in. The gas for a van isn't cheep either, especially driving 100+ Km each way to and from the IWK. With the van came the registration and insurance and all of those little extras. Lets not forget parking fees too. Plus there was Christmas. Then there were Ben's medications and medical supplies he was discharged on/with. They cost money too. Even though I have a drug plan we were still left paying a hefty bill. Then there are the follow up appointments. Driving back and forth means more wear and tear on the van (repair bills like the brake line), fuel cost, parking and meals. As you can guess things add up quickly. This is without taking into consideration the airfare for Ashley, the fact he was here on unpaid leave for a long time and lets not forget the "Chevy Aveo" Chronicles that preceded this whole mess. Oh and we have the "normal" bills for not one but two households. I am sorry but this is why when someone OFFERS to help us financially I don't turn them down. I certainly do not expect ANYONE to help pay for these things, and I am not asking ANYONE to do so but when the offer is made to us (no matter how large/small) and I accept this does NOT make me a bad person. It will not make me "stronger in the end" to turn the help down and find another way.

I would also like to point out that I am now here on my own without my main emotional, physical and psychological support, since Ashley had to return to the UK and go back to work. Holland is NOT an easy place. It is lovely but it can still be overwhelming.

Now for the UP part of the post. I want to thank a few of the people who have been our supporters.The ones who have followed us into Holland and are there with us to stay no matter what. THANK YOU. To my parents, our other children (Victoria and Harrison), my grandmother, several of my aunts and my uncles as well as my great Aunts and Uncles, Emelie ( my cousin or rather my sister since she is the closest I will ever have to a sister) her husband Jonny and son Parker, many many  more of my cousins, my friend Laurie and his mom Lucy, my husbands friend John, our church family, the entire Gaspereau Elementary School Family, my father in law, all my sister in laws and brother in law, my nieces and nephews, as well as our friends who follow us on Facebook and the blog ( Sara, Carolyn, Louise and Bill, Marcia, Erdeena/George, Marjory, Barb and Dave, Andy, Guy, Mark and Pam, Judy, Connie, Tiffany, Margaret, Andrea, Ashley, Pat, Sherry, Melissa, Marlee, Charlyn and too many more to name) THANK YOU!!!! You have all given us so much support in every possible way. We would not be surviving in Holland without you. The little things mean so much.

We are adjusting to life in Holland. Even though it is different, I think we are going to like it here.