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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Wednesday, March 9, 2011

My Journal - Week 80 (09Mar11)

Down syndrome Awareness & the Durham Down syndrome Association....
And why I want to be apart of it!

This month of March (precisely the 21st day) is World Down syndrome Day.  The date was chosen because of it's relevancy to Down syndrome.  "3-21".  Three of the 21st Chromosome is Down syndrome.  While it isn't the 21st of the month yet, I thought it was appropriate to talk about a meeting I was able to attend just yesterday.  The Durham Down syndrome Association or DDSA hosted it's Annual General Meeting meeting and I decided to attend.  Of all the associations around me, I was not yet a member of the DDSA.  The reason this is ironic is because I live in Durham!  It's hard to get out to all the associations let alone be a part of them all, but I wanted very much to become part of this one so I attended the meeting.  The DDSA had a wonderful meeting which included information that was constructive for me as a parent and also relevant for Hunter.  Examples included a speech Pathologist who was there to present information on the topic (this is currently of interest for us now with Hunter using and signing words), a financial investment specialist who spoke about the new Registered Disability Savings Plan and much more.  Along with all the presentations and information the current Chairman announced that the DDSA was in need of some new and willing people to help run the executive and the board of directors.  Interestingly, I had already planned on asking the association if I could become part of their organization in a more involved way such as being a part of their executive/board of directors.  It seemed almost "fate" that there were openings within the organization and that they were looking.  (I have about 10 years experience with being all the different parts to Executive's committees in my past).  Who would have guessed that it would be possible for me to become involved in such a useful way that is specific to Ds and where better then in my own area.  My mission to educate, advocate and support is on its way to being even better then I could have ever imagined.  So as it stands, I have volunteered and will subsequently be attending the next meeting this coming 22nd of March where the determination of the Board of Directors and planning for 2011 will take place.  I am very excited for this opportunity and endeavour.

I was able to introduce myself to the key people of the association while also reacquainting myself with the DDSA's co-chair (who is also the president of the Down syndrome Association of Ontario), and also to several families and members who already are a part of the DDSA.  It was a great evening altogether.  I had my family with me including my mother who is an integral part in helping me with Ds advocacy.  I am so excited to have a chance to become involved in this way with this association and more over to be a member with a purpose.  If I could volunteer for every aspect or position within or of the association, I probably would have but I would be happy with whatever position I am able to do in order to help.

Speaking of helping and presentations, just a few weeks ago I had the wonderful opportunity to speak and present about Down syndrome to the Kiwanis Club of Riverdale.  This is the volunteer charity organization my mother is an executive member of (and has been for about 15 years).  Helping seems to run in our family!  I was asked by the organization to attend one of their meetings and educate their members about Ds.  I was so very pleased to do so.  The comments I received afterwards is also part of what made it so special.  The members had some preconceived ideas (as most people generally do before hearing anything about Ds) and they were completely in awe and so attentive, literally hanging on to every word I spoke.  Regarding their enjoyment with my presentation, I was probably just as surprised and amazed by their reactions as they were about my presentation.  It was definitely a success.  I also have another presentation to do in May at the request of my Family Doctor.  Simply put, speaking and presenting is something that I love to do, that I am comfortable doing (as if it were like second nature) and want so very badly to continue doing.  I believe I may have more presentations in the near future, based upon some connections I had recently made and of course ones I am currently making.  Ultimately, I hope if I am able to become part of the DDSA's executive committee and or Board of Directors, that I can further help and expand in this area and do what I do best.  Help, Educate, Support and Advocate about Down sydnrome.

Ultimately what is nice is that I am able to help educate about Ds but more amazing is the many connections I was able to make from the meeting (all the wonderful families) and new friends!  I learned from this meeting that there are over 200 (known) people in the Durham area alone who have Down syndrome.  While this number sounds large, it doesn't surprise me.  According to the World Wide Web, in 2008 the "total population" for the Durham Region was quoted as being 590,000 with an average of 10,000 new residents per year.  (That ratio would be about 1:3000 which makes the actual number of people with Ds small in comparison) In the past, before Hunter - that number would have completely blown me away.  The reality is, there are more people with Ds in our community then anyone might have guessed and it is my/our job to help find these families and be there - whether to help provide resources, support, information, opportunity or even just friendship.  This is my goal - besides plain old advocacy.  Which will in turn make it a much better world for my son and anyone who has Ds.

And back to "Hunter", it's official.... Next week Friday (18th Mar) will mark his first actual swimming lesson with the B & C  Aquatics swimming club!  It will also mark the first time I "hand" over my son (to a person he doesn't know) for a period of time.  While having a baby/child is full of milestones and discovery for the child, so is it also for the parent.  I know I have already rambled on and on in past posts about how it will likely affect me more than him, I can't help but stress about the upcoming separation.  Clearly, it's why they call it "separation anxiety".  Hopefully it wont be as bad as I am feeling it might be (the separation, that is).  Perhaps I will get it all out of my system before the 18th.... Of course the reality is "then again, probably not". 
  • Reminder to self:  "Hunter is/will greatly benefiting by learning to swim and this is more important than my separation anxiety".  
  • Repeat reminder every so often up to 100 times a day.
  • If repeat fails to hinder anxiety, cry and eat an Oreo Cookie and blame current pregnancy hormones.
Updates (as always) to come!

1 comment:

  1. It's good to hear that there has this association in which built to help the affected by Down syndrome. It also provide good education yourself.


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