Yearly Archives: 2013

7 Quick Takes – taking a moment to write

It’s been quite a while since I’ve written here.  The “7 Quick Takes” idea from conversiondiary.com inspired me to finally take a few minutes to write, so here goes…

— 1 —

Cute baby alert!     ~G is officially a thumb sucker…

 

— 2 —

I’m reading St. Augustine’s Confessions and though it was written in 397 AD by a man, I am finding we have a lot in common.  I’m kind of “confessing” right there beside him.  Something I LOVE about books, humanity, and God:  being able to relate to the thoughts of someone who lived 1616 years before me, being reminded by those thoughts of the unchanging steadiness of God, and amazement over the many lives spent preserving and then translating those thoughts for me today.

— 3 —

I need to stop complaining to people about how busy it has been this spring.  It’s not that people don’t care, but the general vibe is: “Well, you have 6 kids…”.  I need to remind myself that we all have our trials (6 kids or not) and remember that complaining about stuff never really seems to help me.

— 4 —

I’ve been eating gluten free for a year now in hopes of keeping this crazy rash I have had at bay.  After a big break out last week and my decision to finally make an appointment to see a dermatologist (next week) I decided to try eating gluten again this week (so far so good).  Tonight will be my first Friday night pizza night in a year where I actually get to eat the pizza!

— 5 —

I’ve had a few awkward Down syndrome moments with ~G out and about.  Still not sure when to and when not to mention it.  Had a conversation with a woman up the road who stopped by (after meeting a few times briefly).  Ended up finding out after telling her about ~G that her 12 year old sister has Ds.  Kind of awkward silence when I expected her to say more.  Really though did she need to?  When do you say too much/make too big a deal out of it?  Yeah not sure.

— 6 —

#6 was going to be about how 3 of our boys have finally learned to ride their bikes in our yard/on our trails but just moments before posting this I heard my husband downstairs chastising one of our 6 boys for, get this, shooting pee from a squirt gun!

Wow.

Filed under: “Things you never thought you had to tell your son not to do.”

It is never a dull moment around here.

— 7 —

Enjoying the new stone wall Kevin built (with a little help from the boys) for my flower garden.  It is totally sit-able and perfect to view the $30 in flowers I planted so I could enjoy flowers this year all summer instead of just in August .

 

For more Quick Takes, visit Conversion Diary!

It’s a Baby!

“It’s a Baby!”  I cried out in relief and joy when our first son made his appearance into the world almost 11 years ago.  We had decided not to find out his sex until birth, so I didn’t immediately know that tidbit, but I did know he was a baby and I was in absolute awe that one had just come out of me.

Maybe I’m dense, but on this my sixth birth I still couldn’t wrap my brain around how a new life could come from inside me and out into world.  ~G’s birth was fairly quick like it was for four of his older brothers (about 3 hours of active labor).  This time I opted for an epidural as a treat for the last last hour and a half of labor as well as the final push.  I was really tired all month and wanted to be a little less exhausted when I greeted this new little guy.  Without too much fuss he arrived, Kevin cut his umbilical cord, and there was ~G warm and new in my arms.

When we first found out about ~G’s Down syndrome I did intensive research for two weeks to find out what it all meant.  What I found was that Ds could mean many things, from heart defects and other health issues to a wide range of intellectual abilities.  All that information really didn’t tell me much till we met OUR little guy and  I knew I would love him (like all of our sons) for whomever he would be, so I stacked that info. away and went on with life.

I did however have a thirst to tell most everyone who commented on my pregnancy or asked if I knew the sex of the new baby that he was a boy and that he had Down syndrome.  I felt that by being upfront about it, the power it had to form his identity was taken away.

Kevin on the other hand hardly told anyone in the months before ~G was born.  He explained to me this past week that he didn’t want preconceived ideas of who our son was to skew his heart before he was able to meet him.

Really we were both preparing open hearts for our boy, though we went about it in very different ways.

On this the two week anniversary of ~G’s birth I thought I would write about him so far, now that he is here with us.

Here is our baby:

~G has sleepy faces, “I’m having a bad dream faces”, smiles, budda/drunk with milk faces, and yawns that look almost exactly like those of his brothers when they were infants (who themselves looked very similar to one another).  He has dark hair too like his brothers all did when they were born.

He is also distinctly himself:  he is a fantastic eater (by far the best of all the boys who were good eaters as infants), he has a big button “outie” which we discovered yesterday when his umbilical cord fell off, he sleeps lots, and when he cries he lets out one big siren like cry then is silent for 30-40 seconds and then lets out another piercing cry instead of steady wails, when he is hungry or needs changing.  ~G has a dimple on his left cheek, you see it especially when he eats.

When ~G is asleep he looks more or less just like his five older brothers did as infants.  When he is awake I see his almond shaped eyes with the nuchal fold I read about months ago.  His blue eyes appear quite dark (darker than his brothers were as infants and they all now have a shade of blue except 17 mo old ~O who has a sort of hazel eye color) and we wonder what color his will end up being.  He has wonderful quiet alert times where he looks around interested in the world.

We all love him.

Everyone enjoys holding him, except 6 year old ~C who is happy to sit beside me as I hold ~G and he looks on.  ~O at 17 months loves to take off ~G’s hat so he can snuggle his head and get warm soft baby cheek contact with his own, slightly older, warm baby cheek.

Two weeks into knowing him, ~G is not scary or other, and I don’t care if those I meet see his Down syndrome in him or not and I no longer feel the need to tell them. He just is and it is beautiful and exciting.

I am thankful for his apparent health (his heart is looking good, etc.), though I realize nothing is certain in this world and I am enjoying each new and special day with our family.

My favorite moments with him so far are late at night when our busy house is drowsy and quiet and ~G, tummy full, stares sleepily into my eyes and we see nothing but -each other.

Love, Love, Love,

~Lisa

 

 

 

Unexpected Rainbows and A Thursday Wedding…

As I got the kids ready for school this morning, I mentioned that their Nana passed away 14 years ago today.  Immediately ~V popped up to say that was 4 years before he was born.  Then for some reason I told them the story about how my mom thought I was marrying their dad on a Thursday…

It was just a week or two before she died.  She was home with hospice care.  She had a morphine drip and lock to ration her boluses (we could only administer so much of the morphine, which was a good thing, as I just wanted her out of the pain at that point).  The morphine helped make her a little more comfortable, but also had her hallucinating all sorts of stuff, things coming up from the past, fears she may have had that now seemed real.  It was more than a bit stressful.  I remember feeling like I was the only person who could change her bedding and clothes gently enough so that it would put the least amount of stress on her frail and hurting body.

I had only known Kevin for 6 months by then, but that week or so we had Mom at home he was with my dad, brothers and I as much as possible.  On one of those days, Monday or some day earlier in the week Mom was awake, super pleased, and excited.  She had a twinkle in her eye and was going on about what was going to happen on Thursday.

Kevin and I were standing beside her bed in the dining room as she talked.  Once I understood the gist of where she was going with her conversation I was horrified, but Kevin who was holding her hand nodding and agreeing, was clueless as to what she was actually alluding to.

She was telling us how excited she was that we were getting married on Thursday!!!

You would think it would have been OK with me for her to have had this thought, to have given her the lie of it.  It sure was a lot better than the other hallucinations she had and it was making her feel so happy.  Instead I was furious at Kevin for going along with her about it and wanted her to know it wasn’t true.

To help you understand and see that I really wasn’t an ogre (though I don’t know I even believe that myself looking back), my emotional state was something like this at the time:  I had lived with her illness and imminent passing for 4 years by then.  Though Kevin had made it known that marriage was on his mind, I couldn’t imagine making such a huge decision before she died.  I felt like I had to find out who I was without her before I knew who I wanted to marry.  Ultimately I left her with her happy ideas that day and lived with my uncomfortableness.  She didn’t mention it after that day anyway as things progressed rather quickly.

About 6 months after she died, as the pain started to ease, I began to be able to see a future for myself apart from my mom.  It was then that I knew that I truly wanted Kevin to be part of that future.  We got engaged and were married a year after that…

So there’s the story.  I told the kids a very abbreviated/ not quite so heart wrenching version and then added how I feel now.  I told them this morning that “I am so grateful to have actually witnessed my mom so happy that I was marrying your dad.  She only knew him for six months, but she thought he was wonderful.”  and it’s true, I am so very grateful now for that excrutiating day, to have witnessed her knowing about the love of my life before I even knew.

I found these two pictures last week as I was going through a big box of photos I brought home from my Dad’s house.  They are treasures from around the time my mom was a school nurse and I was in my early 20′s, single, and teaching art at the same school she worked at.  We had the opportunity to go out on a tall ship replica that day.

This photo of mom with the rainbow is just how I picture her and how she embraced life.  Looking at it makes me think of  Thursday weddings and how downpours eventually end and rainbows suddenly appear.

 

Love you always and forever Mum!

~Lisa

Putting Down syndrome in its proper place & glimpsing our new normal…

Our 6th son at 19 weeks. He is now 33 weeks and due to enter the world late Feb. 2013.

I watched It’s a Wonderful Life twice this Christmas season, once on Christmas Eve and then on the Epiphany as we packed away our ornaments and took down our tree.  I had never watched it fully through yet I had this inexplicable yearning for it this year.  Watching George Bailey struggle with the trajectory of his life through the many circumstances thrust upon him, his glimpse into life lived without him ever being born, and the final glorious realization that all his imperfect contributions really did culminate in a wonderful life, was well cathartic.

I wrote to a friend just the other day saying pretty much the following:  “It’s funny how comfortable I am becoming telling random folks about the new baby and his Down syndrome.  When someone asks if I know what sex the baby is I share that he’s a boy and then that we also found out he has Down syndrome.  There is often that moment of sympathy, but honestly it passes me by as I feel in my heart ready to meet him as God intended.

I am prayerful that I will feel this sense of confidence, sureness, and lack of sadness, when he comes.   It’s just fascinating how already this diagnosis is becoming just a “what is”, “not a big deal”, “just a part of life”.  I pray that feeling continues.

I haven’t had any mystical visions into my past, present, or future, like George Bailey, but I do feel a ready heart for this new, beautiful, valuable life.  I can’t wait to welcome him home in celebration and begin to live, in full, our new normal.

~Lisa

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I know I was fairly fuzzy about the facts myself before we knew our family would include someone with an extra chromosome so if you are interested here is a pdf booklet for family and friends from www.downsyndromepregnancy.org that gives some great information about Down syndrome. (you can also scroll down this post for some bullet points on Down syndrome)

 

MEDICAL STATISTICS:

  • 80% of all Down syndrome babies are born to women under 35 
  • One in every 691 babies in the United States is born with Down syndrome.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. 

These statistics were taken from the National Down Syndrome Society website.

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Terminology

Here is a list of terms that are no longer used when referring to a person with Ds:

  • Down syndrome child
  • Down’s/Downs baby  
  • Downsy
  • He/she suffers from Down syndrome or is afflicted by Down syndrome (It is a diagnosis not a disease).
  • Mental retardation (although medically acceptable, it’s social unacceptable)
  • And of course… retard

List of terms that are used when referring to a person with Ds:

  • A person with Down syndrome
  • cognitive disability  
  • cognitive impairment 
  • intellectual impairment  
  • intellectual disability
  • developmental delay 

These terms can be found on the National Down Syndrome Society and the National Down Syndrome Congress website.                                              

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