Welcome To Holland

Welcome To Holland
by
Emily Perl Kingsley

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.

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©1987 by Emily Perl Kingsley. All rights reserved.  

The Evolution of Leaf Raking

2008

 

2009

2010

2011

The Power of "MINE!"

When Ellie was a baby in the early-moving stages of baby-hood and toddler-hood, my cousin-in-law (who had two boys) would often remark at how she would just sit and play with the toys around her while her boys would roam while they played. We would chuckle and move on, enjoying the moment with our little ones. Now that I have a boy, however, I realize there is most deffinately a difference between the way boys play and the way girls play! Before Baby Will started to move, I would only have to clean up the toys once a week - things honestly didn't get that bad. Now that he's on the move, I am constantly tripping over or stepping on various items he spreads around the house.

My conclusion - this is one of the innate features of little boy's.

I have enjoyed watching both my kids grow and learn and explore the world around them. When Will came along, I worked hard to make sure there wasn't sibling rejection by making sure all the "new" baby stuff wasn't always referred to as "that's Will's". Of course everything was Ellie's - not only did she come first and everything was bought for her or given to her, but loving Auntie's bought a TON of stuff in pink, so the pink Play Gym and accessories was deffinately NOT Will's.

Fast forward to a very mobile boy who will be 8 months on Saturday. He loves following his big sister around and she loves running and saying "come on Will!" as if he's chasing her on his chubby little hands and knees. Will has figured out what is most precious to Ellie and like any good younger sibling, has already started to squeeze his way in and bug her. I find it amusing to watch him make a beeline over to Ellie's Dora doll as soon as it is dropped - he has no idea who Dora is, just that this little doll is one of Ellie's most prized possessions!

I have concluded this as another innate characteristic of children.

Providence

One of my favourite songs from my youth was performed by Michael W. Smith on the album called "I 2 (EYE)" released in 1988. This record (as they were called back then) was likely the first one I ever bought, so it's imprinted in my history as a pretty huge deal, and I love all the songs on the album. My favourite song is called "Hand of Providence" and starts out with a really cool harmonica intro - to which my Dad loved too, and we'd listen to it over and over.

Last week, I had the opportunity to experience the "Hand of Providence" in our life and this song kept coming back to me and thanks to my iPhone, I listened to it many, many times without having to waste walkman battey-life on rewind!

Monday: Ellie and I went for a follow-up speech assessment as part of her whole-body review the pediatrician has ordered. Her Speech Pathologist assessed her a year ago and said there was a speech delay but nothing significant. This day, however, the Speech Pathologist did some testing and said that Ellie was border-line severe language delays. She sent me home with a 300-question test to assist us in obtaining PUF Funding for Ellie - which stands for Program Unit Funding which would pay for special programs that would be available to her.

Tuesday: As I was mentally drafting an email to close family to update them on this and ask for prayer for funding and a programming spot, the Speech Pathologist called and said that Ellie had qualified for PUF Funding! She then gave me a list of six agencies to contact immediately to see if there was a programming spot available for Ellie - programs run on the school year and can be hard to come by as there is more need than programs available.

I called the first three places, was put on a wait list, left two voice mails and one called me back and booked us in for a tour the following day. The lady said that a spot had just opened up the previous day - my mind was reeling with the speed this was taking.

Wednesday: Mark, Ellie, Will and I toured this school and made the decision to place Ellie there. We completed the paperwork and she started the following day! The name of the school? Providence...

I had to look up what the word "providence" meant, and according to Mr. Webster, it means "divine guidance or care" - how true! We were living out the definition of the word! I then had to look up the words to the Michael W. Smith song that came coming back to me, and the words just overwhelmed the emotions in my heart:

Providence, Providence

See it laying down the cornerstone

The Hand of Providence – it’s evident

For we could never make it on our own

Apportioning the power

Weighing all that it entails

Giving us the fulcrum

And a balance to the scales

Oh, the Hand of Providence

Is guiding us through choices that we make

Oh, the Hand of Providence

Is reaching out to help us on our way

Providence, ever since

Any thesis ever entered man

The Hand of Providence

Has been our best defense

Tho’ his ways are sometimes hard to understand

From the dying of a heartbeat

To another soul reborn

From in between and circling

Our thoughts of love and war

Oh, the Hand of Providence

Is guiding us through choices that we make

Oh, the Hand of Providence

Is reaching out to help us on our way

A new road to travel

Copy of an email I sent to family on September 23, 2011.

Hello to our lovely sisters!! (and parents)

I am sending you all a joint-email because it'll be easier for me to just keep you all informed in one fell swoop. (and I decided to add our parents as an after-thought even though I've had telephone conversations with parents)

To provide a quick bit of history, Ellie was in the hospital again in August for another asthma attack. As usual, we then went and made the rounds to her doctors to make sure everything was okay once we were discharged. She had lost a fair amount of weight (7% = 1.5 lbs) so I raised this as a concern from my perspective and her pediatrician decided to re-run some tests.

In Alberta, when a baby is born, they do a whole raft of genetic-type tests (don't even know them all) with a simple heel-prick blood test. She had these done again in fall of 2009 - Cystic Fybrosis and Failure to Thrive tests were part of the deal. Her pediatrician said he'd do them again just to see if anything had changed - he was pretty sure that this was highly unlikely, since they had already been done twice, but he was just being thorough. What he did order was a bone age test, which was a simple x-ray of her wrist to see how old her bones are. Ellie and I spent one afternoon last week at the Children's Hospital going from clinic to clinic to get all these tests done, and while it was just tiring, it was a lot of fun to hang out together and she did great.

So all the bloodwork came back fine - all organs are functioning well and there's no absorption deficiencies or issues. What he had wanted to see in the bone age x-ray was a bone age much younger than her chronological age. Ellie's developing as what he calls a "late bloomer" so on the slower side of "normal" - she's walked later, talked later, gotten teeth later etc. than her age-group. He's not been concerned about this at all because she seems to be developing fine - but what we were hoping was if her bone age was younger then we'd be able to benchmark her height, weight and developmental skills against kids that are that age instead of the kids that are 3 because she doesn't compare with kids that are 3.

Well her bones have come back at 3 years old, so he was disappointed in that (with the other news he gave us I forgot to ask any questions along this line of what does this mean, etc. so don't ask me anything about this because I have no answers!)

What her wrist x-ray did show was that her bone density is not where it should be. There are also marks on her wrist (he said similar to rings on a tree) that would suggest she has stopped growing during times of illness. He read the x-ray report and some big fancy word was said which I never wrote down and can't remember the ending but it started with "osteo-..." I asked if this means she's likely to develop osteoporosis as an adult and he said "well, this is sort of what we're saying she has now".

He's concerned as to why her bones aren't as dense as they should be and that is what we have to find out now. There are side-effects from being on inhaled steroids for long periods of time (her puffers) and she's had not an insignificant amount of oral-dosed steriods when she's had her trips to the ER for her asthma attacks, so this could be part of it even though her dosages are extremely low.

So we are now being referred to the Endocrine Clinic at the Alberta Children's Hospital, where he said they will likely do a bone density test and figure out what is going on with her bones. It will take a few months to get into this clinic, so until then, it's just life as normal for us.

Everyone keeps asking me "how are you feeling" - it's hard to say really. I don't think Mark and I are in shock - likely stunned is a better adjective to describe what we're feeling. I don't think either of us are overly worried at this point, just looking at this as another path in this world of Sick Kids that we have be travelling since Ellie was born. I think Mark put it very well yesterday when we came away from the appointment - he said "it would be really nice to go to one of these one day and have them say 'we didn't find anything wrong' ". True, true, true.

At this point, the information I have communicated in this email is all that we have to share. We are fine to field questions as people have them, but there's nothing more we can add to the above information. Her pediatrician said it'll take a couple months to get into the Endocrine Clinic, so we just wait. A blessing we have is that my cousin's husband is a doctor in the Endocrine Clinic at ACH, so I know if we have any questions or need someone go over things with us again and help us come up with questions, he'll be a good support for us. It's also tremendously less scary knowing we're going to his clinic!

I would like to just ask that you keep us in prayer and that Ellie stays safe. Her pediatrician said that she's more suseptible than the average kid to break a bone - her favourite toy is the playground and she's quite the dare-devil so while my response is to completely protect her, I know that is not the correct action to take!!

Thanks for all your prayers and support - for the local family, I may need Will-care when it comes to the next round of tests. We'll keep everyone informed as we have info to share.

Love & hugs,
Lori, Mark, Ellie and Will

Hospitals and Angels

We have been in and out of various ER's and hospital clinics with our children to know that there are angels among us with each trip. I mostly try to watch for the opportunities to encourage other parents but often times it is me who is being encouraged.

Last week we experienced two trips to the ER with an asthma flare-up for Miss Ellie. The second visit resulted in another over-night hospitalization and another pneumonia diagnosis (well at first anyway). The Children's Hospital was full, so Ellie and I experienced a new adventure - an ambulance ride across town in rush hour to the Peter Lougheed Hospital. Enter a set of angels -- our EMS guys.  It's difficult to pin-point exactly what they did, but Ellie bounced back during the ride and chatted away to them. They enjoyed her "cuteness" and her cheerful chatter and we had a wonderful visit while we sat in traffic.

The doctor we saw at PLC suggested that perhaps the pneumonia wasn't pneumonia after-all - he said that's a difficult diagnosis for asthmatic kids to begin with. It looked like we were only going to be in one night which was a relief.

The reason this hospital night was more difficult than the past ones was because Ellie knew she wasn't at home, and she knew things weren't right. Perhaps I've been naive to think that Ellie and her love of all things social wouldn't be affected by all these visits to the doctor. I remember being very upset that we had to be at a hospital across town in a district of the city where we knew no one and had no family. I had to constantly remind myself that we would be okay.

It was amazing to see our family and friends rally around us yet again as we charted through waters never traversed. My underlying thoughts rolling through my head was "how do I do this with a baby!" Yet we did, and we're stronger for it.

One of the most wonderful parts of this story is that of another angel. She was my best friend from Grade 3 to Grade 6, and while we likely tried to remain friends through the changes of schools and the inevitable growing up that Jr. High brings, time passed and we grew up. The cool thing with Facebook and other social networking sites is the ability to reconnect with friends gone by, and we had the privilege of "finding" each other in Facebook land. (In the interest of divulging our ages, I won't confess how long it has been since I've seen her, but it's been at least 20 years).

Well this friend of mine messaged me and was willing to help in whatever way I needed - what a blessing! Just knowing that she was nearby was comforting since my family and friends were on the other side of the city and I was feeling very alone. I asked her to bring me lunch so I wouldn't have to leave Ellie, and she said it would be no problem. It was phenomenal - we haven't seen each other since we were teenagers and in that ugly/akward stage of life. While we've both grown up, have straight teeth and (thankfully) straight hair, truly time had not passed.

I've heard people say that true friends are friends for life and until lunch on Friday, I don't think I ever really understood the meaning of that. I was so blessed by a simple act of my friend bringing me lunch and visiting with my daughter and I - I pray that we all have friends like this.

Adventures in Rolling

About three weeks ago, Will started the "I'm-about-to-roll-over" process, and it has been a lot of fun watching him learn this first momentous step of mobility . He would lift his legs straight up in the air and throw them down to the left, looking like the letter L. Eventually his shoulders caught on to the flip and there he'd be, stuck on his shoulders and shout till we helped him.

One night when I checked on him before going to bed, he was sleeping on his side - I pulled Mark in and we enjoyed watching our boy sleep. As we prepared for bed, we laughed at the thought of the potential reaction for when he actually did flip onto his tummy

July 1, 2011 - 1:35 a.m. I rushed into my shrieking baby's room to discover that indeed, he had flipped onto his tummy in his sleep. Oh the trauma!

The last two weeks have been a fun learning experience for me as much as for Will. He's progressed from taking several minutes to complete the roll-over to doing it in seconds - back-to-tummy. He's enjoying his belly time and tries to reach for things - already pulling his knees under his belly and pushing with his feet while pulling with his hands. For me, this experience has been completely amazing. Since my first baby was harnessed/braced until she was 6 months old because of her dislocated hips, she never did anything like this till she was 8-9 months old because she simply couldn't! I have no idea if Will is on target, ahead or behind in this, but I think he's brilliant.

Of course if he wasn't my second baby, I would be wondering if he was ever going to figure out how to roll towards the right or if he'll figure out how to roll from his tummy to his back. Mark assures me that he will figure out this rolling business by the time he gets married.

In the meantime, I have enjoyed going into his room in the morning to find the unique nooks and crannies of his crib he has jammed himself up into - his favourite is beneath his little aquarium.