Welcome to Our House - The Analogy ©

Having a baby is special. For some, it’s a lifelong dream, for others, a wonderful surprise. Either way, many of us have thought about taking this journey and whether it’s planned or a pleasant surprise, we all have preconceived ideas about what our child will look and be like. But what if it isn’t what we planned or expected? This is a short story I have written for parents who have or are expecting an exceptionally special child.

Welcome to our House – An analogy

After many months of dreaming, you finally decide it’s time. You are going to build that perfect house of your dreams. You have saved and saved, and now it’s time to put your plan into action. You find a wonderful, perfect piece of land in the city. It’s exactly what you are looking for – because it’s the plan that everyone talks about. You envision the all brick house sitting on luscious green grass, surrounded by a white picket fence. Inside is a marble foyer leading into a family room with beautiful oak hardwood floors. Granite lines the kitchen counter tops and there is an island sink in the middle. Upstairs has four perfect bedrooms and the master bedroom has an ensuite bathroom and an enormous walk-in closet, of course. It’s truly a dream come true, and it’s only a matter of time. You purchase the land and think to yourself, in nine short months, you will have it all.

But suddenly your agent calls to tell you, the land is not properly zoned, and the city has not approved it for building your perfect home. They have instead, given you land in the country, where an old country home sits. You are absolutely devastated, your dreams vanishing right before your eyes. You know you can’t back out now, you need a place to live, and despite it not being what you wanted, you know that somehow you will manage and that you can continue on.

You tell everyone what has happened, and everyone is disappointed, some even offering their condolences. You know that everyone else has a nice city home, and that was what you had planned, but you have to come to terms with the fact that you must learn to live in the country.

You go to see the property every month until closing and something funny happens. You start to fall in love with the place. The air is fresh, it’s peaceful and serene. There’s a pond on the land, and the house, though not a new all brick home, is quaint, and has lots of hidden potential. You soon realize it’s not a awful place, it’s just a different place. It’s slower paced than the city, less noisy and flamboyant, but it’s beautiful none the less. And in the process, you soon realize you may even get to meet some new and wonderful neighbours.

Its closing day and you suddenly find yourself full of anticipation, but you are still a little worried. After all, it isn’t what you had originally hoped for, and the house may need some repairs. But you are determined to accept it, and tackle everything one step at a time. You open the front door, and suddenly you are thrilled with what you see. The house is lovely, and has lots of character. The rooms are smaller but it’s decorated with beautiful attention and detail. The kitchen has marble instead of granite, and the bathroom has a soaker tub instead of a Jacuzzi. There isn’t a walk-in closet in sight, but the rooms all come with an indescribable view. Somehow, you just know that it was always meant to be and that this is now home.

This is my analogy of what it will be like for people who discover that they will be caring for a baby with Down syndrome. For us, it is not a terrible place to be, it is a journey full of surprises, milestones and discovery like any other child. And as the story suggests, sometimes it’s only a matter of ‘point of view’, and surprisingly, once you have been there, you don’t want to be anywhere else. The journey, like all others doesn’t come without some bumps in the road, but once you find your way, it’s all about the place you discovered, in most cases - quite by random chance
Author: Sandi Graham-McWade, Copyright

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Friday, October 1, 2010

My Journal - Week 58 (01Oct10)

Rash, Measles or Petechiae?

Evey parent of a child with Down syndrome knows they have to be aware of certain medical issues for their child simply because of the predisposition to the many different medical issues or heath concerns that can occur to a child with Down syndrome.  Some of these heath issues are common and are more of a daily heath care concern and less medically intrusive such as Hearing or Sight etc.  Of course some of the more concerning and sometimes more or less serious are Hypothyroidism, Diabetes, Celiac Disease or Gastrointestinal issues for example.  Then there are the more challenging and often serious concerns such as Heart Defects, Blood disorders, Leukemia or other Cancers.

As a parent one of the things I make sure I do, (I am sure as every parent does) is keep educated on the common medical issues but pay more attention, specifically to the potential concerns that could arise due to the Down syndrome.  For parents who have a child who is likely to be more predisposed to certain diseases or medical problems the best advantage that you can give yourself and your child is to be aware of the causes, signs and symptoms of those same medical concerns.

Every bath, diaper change or clothing change I am extremely hypervilligent when it comes to my observations about Hunter and his body.  Today while changing Hunter I noticed something that definitely didn't require me to be hypervilligent.  I noticed a bunch (40 or so) red spots all over Hunter's tummy, chest and back.  As soon as I took off his shirt to get a better look, what looked like angry red spots seemed to fade or become less noticeable.  The first thing that comes to mind for me (out of sheer fear) is Leukemia.  I wanted to go over everything in my mind to make sure the spots or rash wasn't from a possible allergy.  I thought back to foods, clothing detergent or static dryer sheet, soaps or creams - anything that could be responsible but nothing was different or out of the ordinary.  When I noticed the rash, it was about 20 minutes after his dinner (usual organic baby food which he eats on a regular basis, nothing new) and it was about an hour after his bath (same Baby Aveno wash and cream, along with his usual baby powder).  His clothes were out of the same laundry bin with all his other clean clothes he has been wearing all week long (same Ivory Snow detergent and dryer sheets).  I think I ruled out pretty well any possible reason for an allergy.  At that point (it was 7:00 pm) I was concerned but since the spots seemed to be fading I figured it could be some allergy to something.  Anyone can get hives or rashes and never ever figure out or know why.

We took Hunter out with us to go shopping for his huge Toy box at Toy's R' Us (desperately needed to replace the Knob Hill Farms basket we had been using....) and by the time we got home 2 hours later I figured the fading rash should be gone.   No such luck.  I changed his pampers and put him into his sleeping clothes and there were those crazy darn red angry spots again.  This time brighter red.  I immediately took pictures but the shots I took don't do any justice or show the spots at all the way they look.  I put some more diaper rash cream on the spots (hoping that rash cream would help in case they were itchy or bothersome) and then hoped onto the Internet to research this mysterious rash.

I didn't like the answers I got.  Anything from a plain old rash, to Celiac Disease to Measles and then Leukemia.  Unfortunately there is no real way to determine the possibility of any of these without the doctor testing for them.  I did however come across some interesting information regarding Measles.  Upon reading a news release that a huge outbreak of Measles occurred back in May of this year in Vancouver Canada, I was intrigued to learn more.  (My cousins recently visited us for one week and had come directly from Vancouver....)  Knowing this I read on about Measles.  (I knew that there were two types of Measles but what I don't know for sure is that Hunter's vaccination for MMR - Measles, Mumps, Rubella) consists of both viral strains.  The literature I read suggests that most vaccinations don't carry both.  Something I will have to ask my doctor.  What makes me think that Hunter may have Measles is the coincidental symptoms that he has that are associated with Measles.
  • The early phase begins with these symptoms:
    • Fever
    • A run-down feeling
    • Cough
    • Red eyes (conjunctivitis)
    • Runny nose
    • Loss of appetite
  • The red measles rash develops from two to four days later.  
The actual Measles rash usually lasts about 3-4 days and is not usually itchy.  It is one of THE most contagious virus known to man - according to: http://www.emedicinehealth.com/measles/page2_em.htm#Measles%20Causes

Hunter has suspiciously had red eyes last week which prompted me to take him to the doctor, where my doctor figured he might only have an allergy (which was confirmed by my cousin who is an Optometrist).  Then this past week Hunter started coughing with nasal congestion.  Another allergy symptom we thought....  And then this past couple of days, Hunter didn't want to eat all of his food.  Something that I attributed to his age and as all the articles I have read say, his new found interest in mobility and fun, along with needing less food as his growth at 12 months will now slow down.

Is this all co-incidence or are these the actual symptoms that are linked to this mysterious rash?  So, since the virus lasts only about 4 days (with a 10-14 day incubation period), by the time we would get him to see the doctor, it would likely be gone.  The research I have done indicates that the incidence of Measles is not emergent and doesn't usually need medical treatment unless fever or other serious symptoms occur.

I am at a loss!  I have taken some photos but as I mentioned they certainly don't do any justice to the actual look and quantity of spots on him.  I would have been happy if the photos actually looked like what was on his body, but sadly it is worse then these photos show.  At this very moment the best I can do is call my Doctor and ask him what I should do.  Hopefully (imagine I am actually saying this...) the spots are Measles as opposed to Leukemia.  No one wants a serious medical situation to happen to their child.  I will certainly keep everyone posted.

Spots, Rash or Petechiae?  Mommy is worried but I feel okay!
These darn spots are hard to see from this photo Mommy says!
They are on my belly, my back and my neck!
There are so many on my neck!  But they don't itch!

Now, I figured that I should post some of the other photos I took yesterday - just for fun!  No reason to keep cute photos out of a serious post, right?

Mommy and I are talking!  I am telling her about my day!
I have to give my Mommy a big kissy, she listened to my whole story!
I will just sit here and be a good boy.  Mommy is usually busy with her computer!
I love to stand up and cruise furniture now!
If only I could walk by myself... I just need a bit more balance!
But sometimes Mommy wont come and get me... I just want to sit with her!
(Who says Hunter never gets cranky!!)  Don't worry, Mommy rescued me - so no more pictures.

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