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.

Dear Air Canada....

Dear Air Canada,

Please don't take this personally but my husband hates you. This is one case where the "It's not you, it's me" speech will not work. It is you...all you! Where do we even begin to explain.

Perhaps it is the plethora of fees you charge for nothing. The fees should stay the same...but sadly no. We think you make the figures up as you go.

Sometimes two bags can be checked for no additional cost. Other times it is a $20 Canadian surcharge, other times it is $75 or even as much as $100, the other times it is nothing at all.

Then there are your change fees. Sometimes no change fee sometimes it costs $90 others $200 or $250 BEFORE the fare difference and is never what was quoted at the time of booking.

Then we move to your lovely "food". Which on the international flight you still provide "free" is at best, inedible. You get what you pay for I suppose although with increasing fares and decreasing cabin space, "edible" food does not really seem like an unreasonable request. Alas this is not where our disappointment in your high quality "service" ends. On other flights where I can purchase food that may be slightly more appetizing WE MUST use a credit card. No other option exists. Charging a pitiful sandwich and can of Pringles on my credit card is the last thing I want to do however you leave us no choice.

While we respect the fact that for our own security we can no longer transport more than a drop of liquid through security, questioning us what my husband will do with the "large" bottle of water he requested of you in flight seems a bit rude. What did you think he was going to do with it?? Maybe take it to the lavatory and make some sort of "shower" out of it? Really??

Then we move to perhaps what has become the deal breaker. Notification of flight changes, or the blatant lack there of. Most times I am anal enough to catch whatever flight change you try to slip past us however in the last month you have gotten away with it 3 times! Not just to my husband by my father and daughter too. Really calling my father as the plane is ready to pull away from the gate really isn't proper notification. Nor is emailing us that you have moved my husband to another flight at YOUR discretion when we asked changes be called in to us. Paying for three airline tickets to get my husband back to the UK and to work because of your stupidity and lack of customer service is not okay, EVER. While I understand economic times are tough, you are in the customer service business. Telling us the best you can do for us is to purchase a new ticket sooner than later is really not customer service on any planet.

There are so many other things I could mention that have caused our relationship to go south. Losing my suitcase for over a month, then once finding it shipping it to some random address, running out of "free" meals on the aircraft and flying planes with only one functioning lavatory in economy come to mind, but I digress.

Please consider this letter a termination of our association.

Sincerely,

Former Air Canada Passengers.

It's 2am...

...and I can't sleep...or rather you aren't allowed to sleep in this place.

Someone is always in the hallway making noise, one of Ben's machines alarm, or someone decides to come in and ask you something stupid and pointless that could have waited until morning...

UGH....I soooo need a few hours sleep!!1

I hate that beeping machine!!!!!!!!!

It is impossible to sleep in this place...I am getting so tired.

All night long some thing was going BEEP!

First it was the kangaroo feeding pump.

Then Ben kicked off his SPO2 monitor.

This continued ALL night long!!! One would beep then the other.

All this has done is increase my anxiety levels and prevent me from getting any rest at all. Perhaps if the parade of people isn't too bad I will try and rest once my husband gets back.....

Somehow I wouldn't hold my breath on that one ***SIGH***

Somedays I feel like giving up!!!

Today Ben went for a follow up appointment with Dr.Cogswell. Ben has been doing well (in my opinion). He is eating and sleeping well. We haven`t had any problems managing his airway or caring for him. We have all kinds of appointments set up for him and I thought things were going well.

When Ben was weighed...his weight is down...again. I don`t know what else to do! I am already staying awake most nights so I can wake and feed him. I may order a scale to have at the house so I can monitor his weight a bit better. Obviously I am not doing so well at it at the moment. The doctor mentioned supplementing the pumped breast milk with formula.

While we will supplement his feeds, I honestly just want to cry. It is bad enough I can`t breastfeed ( in the true sense of the term breastfeeding anyway) but now to know the milk he is getting from me isn`t good enough just adds insult to injury.

I have nothing against formula and formula feeding. It just isn`t for me. Breastfeeding isn`t for everyone and that`s fine. I think it should be a choice made that is right for parent(s) and baby. I, however, did not get a choice this time and I am having a hard time getting past it.

Ben will be seen again on Tuesday for a weight check. Hopefully his weight will be up a bit. Today has been a bad day....I am trying to keep optimistic but I think my optimistic meter is broken. All I see is this ending in poor Ben having the NG tube again and even worse ending up back in hospital.

*SIGH* Here is to tomorrow being a better day!

Another Fine Example of Customer Service....

I am totally convinced the customer service industry is dead. Obviously since it is winter and I live in Canada having snow tires is a necessity. Last week my father gave me some coupons to get tires. My husband and I went to the tire place and had 4 winter tires in the correct size put aside for us and said we would be back the next day to have them put on. When we went back to have them put on the gentleman told my husband there were only 2 left!! Okay...now I know math has supposedly "changed" since I was a child but 2 is still less that 4! We ended up ordering the tires in...we were told they would be here by Monday. Well we decided that wasn't going to be acceptable since the tires on my car were...well...bald. We managed to get tires else where and have them put on the car. Good thing too. Today is Tuesday. Around 10 am I got a call from the tire place where we ordered the tires to apologise for another little mix up. Apparently my tires arrived yesterday as expected HOWEVER the stupid numb nuts didn't save the 4 tires for me. Should I still want them he MAY be able to get me some by next week. Now it was really a non issue since I had already found tires elsewhere but had I waited I would have been up the river without a paddle!
How do stupid people keep jobs anyway???

What Would You Do??

Really there isn't much of anything I can do other than vent. I am super ticked off!!! As you all know I bought a car about two months ago. My father and a guy we know who works at our local garage checked the car out, including the tires, top to bottom before I bought it. I needed to get new snow tires for the car. Obviously the car tires weren't the same size as the snow tires I had for the van. In October Dad wasn't able to get me four snow tires at all, the place we deal with didn't have them. ( I should note we ALWAYS go to this place because dad works for Michelin and this place takes the coupons he gets from work). He was able to get me two but that was it. We had snow a few weeks ago and I still didn't have all 4 tires. Dad decided that he was going to call and try to get me the other two tires and if he couldn't get them we would leave 2 of the all seasons on and put on the 2 snow tires we had. Not a good idea but better than nothing. Dad went out and checked the tire size before he called to see if the tire place had my brand and size in stock yet. Dad noticed that no two tires on my car were the same AND they were bald and cracking!!!! I was miffed but thought maybe it wasn't as bad as he was trying to make it out to be. I mean he works for a tire plant, in safety no less, so that is his business. What isn't safe in his opinion may not even to be noticeable to anyone else. BUT when we took my car in to have the snow tires on the old tires were worse than even dad thought. Luckily the guy who had checked the car prior to my buying the car was working and said there was NO WAY the tires could have the tread worn down that much in less than two months. Especially given we know the exact amount of Kilometers I have put on the car since I bought it! I am so mad!! I am so lucky I didn't have an accident and kill myself or someone else!! I am VERY pleased to say I have 4 excellent tires on the car now. *SIGH* That's my vent for the week lol :P

Monday Madness Vent....

Today sucked. Let me just start by saying that much. I am sore. I spent the day doing alot of heaving lifting/moving at work. I apparently did too much and I am paying for it now. I had a coding assignment due tonight and my stupid email decided to be a pain in the rear and not work right. I did manage to get it to work but I won't share with you some of the choice phrases I was saying while trying to get it to send. But the worst part of the day started before I ever left the house. I THOUGHT I was doing well. I was up, showered dressed, hair AND makeup done (impressed so far aren't you...don't be) Victoria had eaten and was in the bathroom getting ready. Her clothes were laid out, her backpack packed all that was left was to pack her lunch. This is where it all went horribly wrong. I had everything packed except an orange. Victoria likes it when I slice them into wedges for her so being a good mom I decided to slice one for her. I had not had coffee to this point and was still a little on the groggy side. Victoria yelled to me asking me where something was...I turned my head WHILE slicing the orange and sliced my finger instead..it hurt but i tried to ignore it. I threw the orange slice in the container and went to find Victoria. I put her hair in a pony tail then noticed her shirt was COVERED in blood. MY blood. My finger was bleeding and I got it on her shirt...she had to go change I went to the bathroom to try and clean my finger up and noticed i had gotten blood all over my scrubs too! I had to change...we almost missed the bus....we didn't but it was close. I was still bleeding when I got to work...Shannon fixed me up....thank goodness Monday is over for another week....