Why that name

Just a quick note - I chose this title for my blog because if any of you have tried to actually go up the down escalator it is a lot of work. When my son Simon was born, I was figuratively transported to the basement. I was struggling to find out what this meant for our family, and our future. I began a journey on that day, to go up the down escalator. I know it will always be a lot of work to keep going up, but that is what I have to do now to stay out of the basement. Simon has Down Syndrome, but I am choosing every day to make life normal for him and to help us get back to the ground floor. Anytime I forget the joy and stop moving forward, I find myself rapidly descending into the basement again. Thankfully I also have an emergency stop button. He is my Creator and my Father. The One who brings the despair to a standstill when I call on Him. He is my Rock and Refuge. The One I can run to when no one else understands. It may sound cliche, but it's true, I couldn't do any of this without God. He is the reason that some days I can still smile when things are ridiculous inside. That is why the name.

Tuesday, March 22, 2011

The good stuff

Okay, so I was all emotionally inspired after reading another blog, but I realize that I should also stick to the plans that I have made.  It's just that kind of day.  I did promise in my last post to inform about the joy I've expressed (among other things).

So about the news items.  It still make me giggle to think that I had several TV crews at my house, and one of them even took video footage of me pumping.   (Covered appropriately)

 It all started with Simon being allergic to Cow's milk protein. When we found that out, we had to make some radical changes.I had to completely cut out anything containing any type of cow's milk protein in my diet.  I was still pumping at the time, and that meant that anything that I ate would potentially be passed on in my milk to Simon.  This left us with a HUGE surplus of milk.  What was I supposed to do with several gallons of breast milk?  Any mother who has tried pumping for any length of time knows just how valuable this milk is.  We also ran into another awkward problem.  We ran out of freezer space.  Good grief, no room for food, too much milk.  This problem was solved by billeting my bags of milk to other freezers.  Andrew's cousin was kind enough to make room in the freezer for several grocery bags, as was someone from our small group. 

I guess our friend from Bible Study, was tired of having to listen to me complain about how to get rid of this perfectly good milk, or he was tired of moving milk around to find his cookies in the freezer.  Either way, he went online and posted an ad on Kijiji on my behalf, and used his e-mail as the contact point.  Thankfully he screened the creepy and rude people for me, and just forwarded the sincere and interesting inquiries. 

One of those interesting inquiries was from Global news.  One place I never thought I would be ten years ago.  On public television talking about breast milk.  After the first interview, I started to get better at talking in front of a camera.  I did an interview for Global, CBC radio, CBC news, French CBC, the Winnipeg Sun, and Steve Lampert (?)  

It was pretty interesting to be in the public eye.  After the first few interview I was a bit afraid to go out in public.  What if people recognized me and started pointing and calling me a freak?  I did actually get one person who had seen me on the news and complimented me on trying to help someone else out. 

My publicity has been met with varying opinions.  But, whatever.  Simon has taught me to have thicker skin, and that came in handy at this point in my life.  I had seen too many babies in the NICU who were preemies.  They needed milk, and sometimes there moms just couldn't produce it.  Why not give them a fighting chance by boosting their immune systems, and giving them something to drink that is easier to digest than formula?

If you are interested in the news reports, just google Sara Wiens - breastmilk.  The first five pages are decent, after that they get a bit shady. 

One more little snippet in my defense.  (I'm not on trial, why do I have to defend?)  To those people who think that I am freakish and gross and dangerous - if I were concerned about the safety of my breastmilk, why would I continue pumping for nine months!  I still can't believe that I pumped until July from October.  After finally giving away the milk that Simon couldn't use to a family that adopted, I did find out that he still could have used it.  He had an allergy appointment and after going back on cow's milk myself, we found out that he could tolerate what was coming through in my milk.  After giving away about 54 lbs of milk (or more)  I still had enough to last him beyond a year, with supplementing a little soy milk.

Really, if I had sold it for $8 an ounce, I would be rich.  Ridiculously rich.

Too bad I wasn't in it for the profit.

Until next time,

Friday, March 18, 2011

Time to keep up

I have been trying to keep up with Simon.  It is incredibly difficult to catch up from a year ago, especially in the first year of a baby's life.  They grow so fast, and the develop their personalities before your very eyes.  The thing about Simon though, is that he doesn't.  A wise person once told me a story about another mother of a child with a disability.  This mother heard a woman say she wished that her children wouldn't grow up so fast.  The mother very adamantly advised her to never wish for that. 

To have a child grow up slowly is a blessing in some respects, but still a burden in others.  It makes if harder not to compare to children of a similar age.  To hear of a friend's baby who is a mere nine months and walking, and to celebrate that with her, meanwhile in the back of your mind trying to quiet the voice of the therapist that says that your child may be walking by next Easter.  It is a fine line between joy and jealousy. One that I have toed on many occasions.  Thankfully, I like to think that though jealousy may win out for a moment, I do try to take the high road most of the time.

I look back at some of my notes on Simon and I see a whole lot of appointments.  Sheesh!  It was a very crowded time for all of us.  Then it got even more crowded when we added solid food.  It still makes me shudder somewhat when I think of starting him on food at four months.  I am one of those people that does not tell that they are pregnant until 12 weeks, when the risk of miscarriage is over.  Ironically that still didn't help with my first miscarriage.  I firmly believe that unless a doctor advises it, an infant should not be started on solid food until six months.  I am very impressed with Dr. Rempel and her team.  She knew me well enough to lay all the cards on the table, knowing that unless she did so, I would balk at the idea of starting Simon so early on food.  When faced with the risk of allergies versus esophageal something, and septal deterioration, I decided food was a good option.  I knew enough big words to figure out that those were very bad things to have to deal with.  Which brings me to another random point.

There is a whole new language that I have had to learn.  (I am also trying to teach Elizabeth this language as well.)  It involves words like hypotonic, rectal prolapse, atrium ventricular septum defect.  There are some things that people just shouldn't have to know about.  It made me laugh, in a sad kind of way, to think that I might someday have to warn a babysitter, "If you see a part of his bum sticking out that wasn't there when you changed his diaper before, don't worry.  It should go back in on it's own." 

I was looking at pictures today of the time when Simon was born.  Elizabeth has grown up so much since then (as expected) and so has Simon.  He is almost a year and a half old.  I marvel at how he has changed our family and stretched us individually in so many ways.  What a blessing he has been to us.  I have come to realize that this new test that they are talking about will affect our world in a very negative way.  For those of you who don't know, there is a less invasive  test that may soon be available to determine whether or not a pregnant woman is carrying a child with Down Syndrome.  When I first heard about the test, I tried to make light of it and suggest that it would show who either had not taken the test or who still had morals.  Now as I think about it, I feel sick.  It would mean countless babies being aborted because their parents wouldn't be willing to have a flawed child.  It would mean less acceptance of people with Down Syndrome.  It would mean potentially that Down Syndrome would be almost eradicated.  The thought of losing this new dynamic that we have just blows me away.  I can't imagine how life would be if Simon were "normal".  When instead of having gone through all of the medical experiences that we have, our biggest concern would be lack of sleep.  (I do that to myself so that Simon doesn't have to pick up the slack.) 

I want to tell you all about how wonderful Simon is, and how he is growing and learning new things.  But I do have this perfectionist need to do so in a chronological fashion.  So, on that note, I will leave you with a teaser for next time.  What do you call a woman who spends nine months expressing herself, and then expressing herself some more?  Me.