"nope . . .nope . . .nope . . .YEP!"

I'm quoting a friend and fellow Ds momma in my title.  A few days ago her facebook status was such:

"The Down Syndrome Community continues to bless me. Tonight while walking down the Grand Haven Pier with 'A' after I dropped the two bigs at Church Kamp, we met an amazing husband and wife who stopped to chat with us! They also have a girl with Ds who is 26. No other community that I know of will sit down with a complete stranger and open up they way we do. They offered lots of stories and laughs. For about 35 min they stayed and chatted. A Ds Momma looks at every childs eye and in her mind says, "nope... nope... nope... YEP!" We look for each other everywhere we go. It isn't always a 35 min chat but often a smile, hug or a wave at least. I get lots of women sharing their stories with me. I truly love all the stories. They keep me going. They let me know I am not alone and to keep going, fighting for everything we are doing for 'A'".

I have recently started a new job.  One thing, among many, that I LOVE about this job is seeing this young woman that comes and works out.  I see her walk by the glass windows of my room as she's walking from the weight room to cardio or to use the bathroom, I see her walk by a couple of times.  She always has water, and a towel, and YEP she has Down syndrome.  I love it.  I love that despite what doctors are going to tell you, what genetic counselors are going to say, despite what the world in general thinks should happen to fetuses with one extra 21st chromosome people with Ds are more like someone without the one extra chromosome than different.  It also gives me hope for Doc.  When I'm holding Doc and she walks by, I whisper to him "see, don't believe what people are going to say about you, if you want to come and workout at the gym you can."

Last week I worked the morning shift and signed up for the evening shift too since hubby was out of town and the kids and I didn't have much else planned.  But instead of driving home for a few hours we decided to have a picnic at Meijer Gardens.  I packed lunches and planned on just buying a snack or dinner (depending on hunger level prior to reporting back to work) but as "chance" would have it I missed my exit and on finding my way to the Gardens by way of a different route we passed a McD's with a playland.  Now, I don't know about you but my kids love to eat at McD's, especially if there's a playland - and they love exploring new ones so I decided we'd stop for lunch and save our packed pb/j's for dinner.  The kids hadn't finished long before a mother and son came in with their lunch tray in hand.  I sort of noticed the boy, and thought just maybe he had Ds too.  It was actually very hard to tell, the reason my interest peaked was the way he was so flexible as he sat down to take his shoes off and put on socks.  I didn't see distinct almond-shaped eyes like Doc and he ran around the playland just like all the other kids and sat down at the table for breaks to sip on his soda and eat his happy meal.  But I eventually decided that YEP, he's like my boy!  And like most in the Ds community his mother stopped by my table to take a peek at Matthew and confirmed my suspicions.  It was a blessing to my heart - the little "hello" from one understanding mom to another and to see the cute guy running around crazy like the rest of the kids there.

Doc has potential.  Lots of it.  LOTS.  "Don't Dis (his) Ability."

One Extra Chromosome

I'm going through Beth Moore's Revelation study right now, I'm (we're) almost done.  I'm doing it with a group of ladies at a local church.  It's awesome, if you get the opportunity DO IT!  Seriously, Just Do It!

Tonight Beth Moore went over chapter 19.  FINALLY a chapter to celebrate.  A reprieve from the depressing state of the world that is still to come.  If you think it's bad now, just wait.  I mean, think like the last Harry Potter movie, but REAL.  That's the picture that comes to mind when reading about the demons and darkness and evil that will be so prevalent.  But anyways, back to tonight, it was a happy study.  The wedding feast.  Jesus coming, the Lord of lords and King of kings, riding on his white steed and his armies behind him.  Just amazing.  I can't wait!  Revelation 19:7 says "Let us rejoice and be glad and give him glory."  Beth Moore went on to describe what glad means there.  When translated it's not like "the officer didn't give me a ticket" glad, or "my favorite ice cream is on sale" glad, or even "my kids are getting along today" glad - it's a JUMP UP AND DOWN super duper KiNd of GLAD!  Do you know what I mean?  It's like "GggggLllllllAaaaaaaD" (yes, I'm quoting Beth Moore now).  She asked, "do you remember the last time you were so glad you jumped up and down?"  I smiled, I immediately remembered a few times in the last 6 years.  The first one I can remember is when the pregnancy test was positive for my first-born.  I was in the kitchen, I blinked a few times so see if I was reading it right, and then I jumped up and down right there!  The second time I can distinctly remember was when the genetics counselor from the high-risk ob office called with the amnio results for our youngest.  She said he does have trisomy 21 or what is called Down syndrome.  I jumped up and down and was glad.  GggggLlllllAaaaaD.  That may sound strange.  Let me explain: our second was still born with tetrasomy 9p and because of that was too ill to live on earth for very long.  When an abnormality was shown on Doc's (our youngest) ultrasound too many sad thoughts filled my head and had me google-diagnosing him for at least a week.  I wanted to make sure there was something else other than tetrasomy 9p that would cause him to have an abnormality.  There were, and most of them were fatal also.  I was hoping and praying that it was an extra 21st chromosome, or nothing, since I felt those were the only two choices I had that would give him a chance to live (short of a miracle from God).  So yes, when I heard he had Down syndrome I was glad.  So glad I jumped up and down.

Now, why everyone else we told had some disappointment to their voice I don't know.  God has wonderfully created every human, ever, and Doc is no exception.  I thank God for him every day.  It's not as common for God to make a baby with an extra chromosome and this time when He did He entrusted him to us.  :)  For this I am thankful.  And blessed.  I love this little man soooo much.  Just like I love his three older siblings.  I feel totally inadequate to be entrusted with raising him, as I also do with his older brother and sister but that's probably all part of God's perfect plan of getting me to rely on Him more and more every day without ever not.  I love all that his one extra chromosome brings to him, and to us.

A New Chapter

One extra.  This new "chapter" in the blog-o-sphere is one extra thing I will do, if there's one extra hour in the day.  It is no longer to chronicle the "new normal" we sought after our second-born was taken into the arms of Jesus at 32 weeks gestation, or the struggle to get pregnant again, craniosynostosis, or the scary news that our fourth might also have serious health issues.  This blog is to chronicle the ups and downs and sideways of our family now that God has so richly blessed us with 4 beautiful children, one of whom we'll meet at a later date, one who is starting first grade at home, one who is still wearing a helmet 2 years after surgery, and one who has one extra 21st chromosome, and a leg issue.  We have our own set of challenges but God has proven to be there with us e-v-e-r-y step of the way.

One extra.  This is also my hope that there is always room in our home for one extra.  Always room at our dinner table for one extra.  Always room in our hearts for just one extra, whatever that may be.  I hope that you - the reader - will be able to see God at work in my life and in the life of my family.  I am a work in progress and definitely not perfect but I hope you can see through my weaknesses a perfect and Holy God who continues to keep me going.