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, December 8, 2010

My Journal - Week 68 (08Dec10)

He's a growing boy... there's now proof!

Today I was going to blog about my prenatal appointment I had on Monday which was my level one prenatal screening ultrasound and blood screening for our current pregnancy... but I decided that at the moment, Hunter's newest accomplishment is much more exciting and reportable!  And, I will be having the ultrasound redone this Friday so I can blog about it then.

It's not to say that our new pregnancy isn't exciting because that would be the furthest from the truth but I just received a call today from my Obstetrician that said I must come back in to have my high level prenatal ultrasound redone due to some obscured measurements that were taken on Monday.  The test that is done called IPS or Integrated Prenatal Screening (which detects for Down syndrome and other issues such as Spina Bifida or Neural Tube Defects) has two components, blood testing and also a high level ultrasound which specially takes a measurement of an area called the Nuchal Fold (Translucency).  This fluid filled area is located behind the neck during weeks 11-14 of gestation and can only be accurately measured during these weeks specifically because after week 15 the fluid will begin to dissipate and not reflect a proper measurement that can be correlated with the "RISK" of Down syndrome.  Now, it's very important to note that this measurement alone is not indicative of Down syndrome, or even the increased risk without the various other tests that it is correlated against.  Even then, the test only can statistically show risk and odds of the possibility of Down syndrome.  There are ranges to indicate being within normal limits - and more importantly this range is very different for each area, country, state or province.  It is very important that expectant mothers who have this measurement taken do not compare to other women for many reasons, one being that location has a lot to do with the acceptable ranges of normal and also simply for the reason that I experienced myself - measurements are very hard to obtain properly which are strictly monitored by process and protocol.  For example, if the fetus is not lying transverse, a measurement is NOT supposed to be obtained.  Also, in Ontario; three measurements minimum must be obtained in order to calculate an accurate reading.  There are also formula which are used to also assist and streamline the fact that every technician who performs this measurement will take into consideration the fact that there are minute differences to how each person measures.  Simply put, the process, the results and the then correlated odds are far from simple.  The more important factor which I believe is the most important item to remember is that after all is said and done, a normal measurement (while very reassuring) doesn't always mean normal and a high or abnormal measurement out side of the range (which is often distressing for many parents) doesn't always mean there is any problem at all.  (High measurements can often lower in time and correct in utero).  Myself as an example (or Hunter rather) who had a completely "normal" NT scan measurement of 2.3mm (where 3mm to 3.5 in Canada is considered the high end range of normal) ended up having Down syndrome.  And due to his "normal" or typical measurement, had I not requested to have an Amniocentesis, I would probably not have ever realised that there lay a possibility that Hunter had Ds.  The NT measurement is a tool to help doctors refer parents to the next stage or level of prenatal testing.  As I mentioned in itself it is not a diagnostic test to determine Ds, but rather a diagnostic tool for screening.  Testing and screening are two different things.  If anyone is or has more interest specifically on this topic, it is one of the very important topics that is in my new website under the references area.  (The site is still under construction and I hope to have it up soon....).

So, back to the important information....  Hunter GREW!  He not only grew but he also gained weight!  For a long time, Hunter has been a featherweight.  It's not to say that he was underweight by a whole lot, in fact - he still measures on the typically developing child's growth charts although has been teetering near the 10 percentile on them.  For parents of children with Ds, we are told through research and reference that we should be utilizing growth charts more specifically designed and targeted toward our children simply because it isn't really appropriate for them to be classified on a chart that is designed for typically sized children when children with Ds heights and weights are simply much lower then a typical child.  For example a person with Ds, average height for adult males is 5 ft 3 inches and adult females is 4ft 11 inches.  This is not the average height for a typical adult - male or female.  But the reality is, these averages (whether for Down syndrome or typical) are averages only and do not always represent the majority.  Just like the general population, anyone can be taller, shorter or completely off from the averages.  So, while it is important for parents to be aware the other charts exist I also believe it is very important to not necessarily segregate everything in every case just because the child has Ds.  If the child can exist in a typical world, fit into a typical chart, typical feeding, learning or whatever is out there, there really is no need to create segregation just because.  The motto, "more alike then different" should apply in every aspect of a child's life, no matter how their chromosomes are arranged.  And it is for that reason alone that I try my best to have Hunter do and use what ever things typical are out there unless he needs something "special" to accommodate him.  Until then, everything typical - charts, food, his world, everything.  This goes back to expectations.

Now, back to what was the real reason for this post - aside from the moral and learning objectives that go along with this detail, Hunter (in literally one month and three days) has gained 3.6 pounds and also 2 inches!  This might not sound surprising to some (simply because he is spending the largest time of his life putting in the most growth that he will in one short period of time) or sound completely surprising (as it did to me) since after one year of age, many, many references and medical literature suggest that growth and weight will rapidly taper off since his largest growing spurt of his life should be ending or pausing at this time.  So, while I know that every child is different, I don't think that ever in 33 days did Hunter EVER gain 3.6 pounds or two inches.  What I would like to say that I do know is, in the last three months I have actively been giving Hunter "real" table family foods for dinner with very few exceptions (being if we have to go out and a jar of baby food must do in a pinch).  So with a grand total of Hunter being 23.6 pounds and 30 inches tall, I would love for Hunter's body to take the credit for gaining weight!  But realistically I believe Grandma's cooking has been a great influence (hopefully not in eventually making him overweight...) in helping him to get to the medical average weight (for 1 year 3 months and some odd amount of days) being 24.8 pounds.  Noting too, that his height being  30 inches where the referenced average was 31 inches.  Oddly enough he is literally right on target for head circumference and has always been in the 50th percentile and higher, in that area.  I am pleased to say, that with his weight now in the 40th percentile for typical kids, and height being near the 20th percentile, I am very pleased.  I only hope that (and this is the sign of a worry wart mother) that he doesn't have any medical issues such as the typical Under-active Thyroid which often accompanies people who have Ds.  Weight gain can often be one of the first signs of Hypothyroid as well as fatigue.  Thankfully, "fatigue" as a symptom is not one of Hunter's.  So that more then weight would bother me, especially when his weight is still a teeny tiny bit under the average.  We will know for sure the results regarding his thyroid and other health issues on the 28th of December when he has his next well visit check up, since we had his blood drawn just after his 12 month checkup - Refer to my blog back a few months ago to read about the blood testing adventure... or torture, rather.

While it seems that blogging about weight and height might be really the least significant things to blog about, they are achievements for Hunter even if he wasn't making a conscience effort or attempt to get to these specific milestones.  It's yet again one of those small things that often we would have or likely taken for granted if he didn't have Ds.  Relishing in things that often we would dismiss as something that just normally happens allows us to really take in every little thing that comes along throughout Hunter's development and this journey.  I hope this makes sense to those of you out there who do not have a child with any specific needs but I certainly know that parents who journey right along with us can appreciate this ever so much.  So, for those of you who are waiting for their child to hit a specific milestone, just know - even if they seem to be delayed for whatever reason (time or development) they do come, just sometimes when we least expect them to or maybe we didn't take the time to notice other ones that they did meet!


1 comment:

  1. Dear Sandi,

    I’ve been following your blog and have noticed you write about being a mother and are in the process of writing a book. This blog is great!

    The reason I'm leaving you a comment is that I'm the intern for StageofLife.com, and I am looking for bloggers who might be interested in guest writing on our site. Could we feature you? We work with talented writers and bloggers to build a network of stories, crossing all stages of life, that will help make the world a better place, and I think our readers would gain a lot from your life perspective.

    Thank you in advance for your time and consideration and I look forward to hearing from you if you are interested. My email is megan.colyer@stageoflife.com. Thanks!

    Megan

    ReplyDelete

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