Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Sunday, April 7, 2013

Signs and sisterhood!

Do you ever have one of those goosebump moments in life?  I totally had one this morning....

Our FB group of moms of kids rockin' the extra chromosome is planning a midwest meet-up. We are in the midst of planning for the Chicago area since many of us are within reasonable driving distance. We haven't found a perfect spot just yet, until this morning, maybe. One of the suburbs we were looking at seemed to be a good fit, but now feels PERFECT! In talking to one of the Chicago-area moms from our group, it turns out it is super-close to one of the first Gigi's Playhouses!!  Now this may seem like an "ok. and...." moment, but for me it was a great sign that we are headed in the right direction (literally and figuratively!).  Gigi's Playhouses are gathering, informational and awareness centers for families touched by Down syndrome. There are several across the country.  I had never really looked into it more deeply than to know they existed and could be a support for us.  For us to unknowingly choose a location for our meet-up right near the original location feels like a huge blessing.  Wow.  Here is the website for Gigi's if you are interested.

I am SO looking forward to seeing some of the women and kids from our group in person.  It truly is incredible to meet people online and, because of the journey we are all on, feel so connected to them.  (much to our significant others' dismay -- see one of the dad's reactions to our FB Group here!)

Someone posted this and it is perfectly said. Although my friends and family have been so supportive, they just can't understand all that comes with our adventure. I am indebted to them each for their candid thoughts, willingness to share and open hearts to accept each of us as we are.  I never thought I would be so close to people I have never met in my life, but life has a funny way of surprising you sometimes.  All I know is that if I ever find myself on the west or east coasts, up north or down south, heck, even across a pond or two, I would have a friend to visit and a kiddo to hug! Miss Joelle--we are coming to Australia someday!

I have to say, now I kind of get the online dating thing.  You really can get to know someone very well.  Hmmmmm....I never thought of it before, but maybe some of these "moms" are really not who we think they are.  Maybe they are teenage boys.  Or old, retired men with nothing but time on their hands....The beauty of Facebook! We will find out soon:)

What a week!

I know.  I know. I know. 

I have been a bit absent lately from my blogging.  Can you believe that 4 kids get in the way of free time? Shocking!

Honestly, things are going along here just fine. We spent time over the last week in our hometown celebrating the life of B's grandma Boots as she went to see Jesus fittingly on Easter Sunday.  She would have turned 92 this month and was such a kind, sweet, faith-filled woman.  But the thing I loved most about her was the fiery, sassy streak she maintained through the end.  She had not felt well for a long time, so many of us were pleased to see her body peaceful as she reunited with her husband, family and friends who have gone Home before her. 

I have regret, though.  She never really was able to meet Owen.  Thankfully B's mom had taken many photos to show her over the past months.  She prayed for little O each day and I am grateful that she will be his guardian angel on the other side.  What a lucky boy!  We did get to take him up to the nursing home the day before she passed and I would like to believe she could hear and know his presence.  She was a hard-working, caring woman and I can only hope to be thought of so wonderfully some day.

She and Kate's birthdays are just a few days apart and they celebrated their 90th and 6th birthdays together 2 years ago this weekend.  Love them!

It was a long week of traveling, but it was great to be able to take Owen to our hometown to meet family and friends. Wishing our time hadn't been so short, but we will be back sooner than later!

In other O news, we were supposed to get his temporary hearing aides this week.  But with the funeral and such, we had to reschedule. New date is for the end of this month!  I am so interested to see what a difference it makes (if any).  Praying for some positive results :) 

The other item on the docket for O is a sleep study later this month.  He is a LOUD sleeper and generally wakes us and himself up several times a night.  After hearing about other moms' experiences with this and a few more exaggerated nights of night gasping, we made an appointment with the local sleep center.  After chatting with the doc, he decided that a sleep study would be in our best interests to see what we might be dealing with. So at the end of the month, I will have an overnight date with Mr. O at the sleep center.  This will be interesting! Stay tuned...