She's three and she knows it and she is a big kid now and won't let anyone forget it. Trick or Treating and the Church Carnival tonight was adorably cute and astonishing. Reagan was really into it. She played all of the games with enthusiasm. She got her face painted just like her sisters and held so still for it.
Wednesday, October 30, 2013
Reagan has Down syndrome. We all know that by now right? ;) But what does that really mean? Technically speaking it means that she has Trisomy 21...that is three copies of her 21st chromosome. Instead of the 46 chromosomes (23 pairs) she has 47...shoulda known that a kid born to musical parents might have a triplet thrown in just to keep it interesting lol. Medically speaking that extra copy can contribute to a long list of possible side effects. Some of these Reagan has and some not. Her vision seems un-affected. Her hearing...not so good. Her thyroid is fine, but her heart was broken till her amazing surgeon fixed it.
Tuesday, October 29, 2013
A couple of things have been rolling around in my head and heart the last couple of days and I have been contemplating how they come together. I don't profess to be the best or most inspiring writer, but this is what has come to me. Someone on facebook brought up the question of fear vs. faith, especially as it relates to having a child with (the risk of) serious medical conditions. How do you balance vigilance and fear and faith that God is in control. As mothers we are the ones who know our children the best and can see if things seem off and we should not discount this. God created this in us when He designed us to be mothers. And when your child has something like Down syndrome (or in the case of my dear friend, severe immune suppression and 5 transplanted organs) you know some of the increased risks that come along with it. And they are scary and they are real. I've been there. Reagan had open heart surgery at six months old and it just about killed me. And every time she gets blood work done I wonder will this be the time, the time when the numbers are wonky and we have to face more fears. Some people will tell you that fear is not of God, that you need to give it up. Personally I think that is hurtful hogwash. Fear is real and fear is valid. It is what you do with the fear that matters. I think a good way to think of it is do you live in fear or do you live with fear? If you live in fear then the fear is ruling your life, your choices, your perspective, and there is no room for God's peace or His plan. If you live with fear then you are human. And God can use the fear for His plan...to help you spot a problem, to grow you, to teach you compassion. I come back to what my mother reminded me the night that Reagan was born. We were faced with overwhelming, debilitating fear, not because we thought Reagan had Down syndrome but because of what it meant to her health right then. We were frozen in the inability to move in what we thought was right because of the fear of what might happen if we were wrong. And my mother gave me this verse. "For God has not given us the spirit of fear, but of power and love and a sound mind" (2 Tim 1:7) Not that we will not fear....but we do not have a spirit of fear. We have power...wisdom from God, strength to do what needs to be done and face what challenges we are given. We have love...from God, for our children. We have a sound mind...that God has given us to use in judging our circumstances. Where is your fear? Is is pulling at your ankles and dragging you down into the quicksand of horrible possibilities, keeping you from moving forward? Or is it peeping over your shoulder when you come up against the hard realities of life?
The girls and I were driving to choir practice on a stormy afternoon the other day and we chased a rainbow (a double one) entire way. It was stunning. And it sparked lots of commentary from the back seat. One comment being a six year old's proud explanation that the rainbow was God's promise never to flood the Earth again. That stuck in my head as I was pondering the spirit of fear. And I realized that yes, the Bible tells us that God set the rainbow as a promise.....we've all heard the story a hundred times....but it suddenly occurred to me that the rainbow isn't only a promise not to flood the Earth or bring destruction to all mankind...it is really a promise of His goodness, grace and mercy...of His enduring Love and presence. It is a visible reminder of Jesus' words to us "I am with you, always" (Matt 28:20). And that is what I cling to when fear tries to grab my ankles and suck me down....I will chase that rainbow.
One last thing. As I was contemplating this post I read this story about an amazing mother and woman of faith who lives with very real fear on a daily basis and I think she has mastered chasing the rainbow in a way that will bring you to tears and inspire you. Go read it and be blessed.
Monday, October 28, 2013
Reagan started pre-school today. She loved it. Mommy is not sure how often she should go, but we know this much for sure so far...she responds well to the program!
Sunday, October 27, 2013
I promised to do a post explaining the details of Reagan's Equine Assisted Learning, so here goes. Reagan rides a pony named Sally whom she has come to love dearly and calls by name....cognitive, social and speech, check. ;) And that is pretty much how riding goes for her. Various parts of her ride work her in every area of therapy from gross motor through speech. Reagan rides bareback (with a bareback pad) in order to feel the movement of the horse more and encourage her balance. This has worked wonders for her muscle tone! Before she started riding when you picked her up she was a dead weight....she didn't hold herself up at all. I noticed the very first time she rode the improvement when I picked her up after.
Saturday, October 26, 2013
I am tired beyond belief tonight from way too much work and way too little sleep...and herding my ducklings around. But I have a couple more priceless Reagan anecdotes to share. Reagan is incredibly popular everywhere she goes, and no big surprise when you witness the cuteness and charm the eeks out of her every smile and gesture. So tonight was the Harvest Bash at Clarisse's school/church and while we will be going to our own carnival on the 31st Clarisse really wanted to go where her new friends were going. We had only 1/2 to spare but we took our costumes down for a few minutes of trunk or treat and a trip down the giant blow up slide (big girls...Reagan couldn't even reach the steps...not that she didn't try lol). Reagan's costume this year by her own choice is a lion.
So it's me again (Daddy) making my annual visit on Shauna's Reagan blog. Moment by moment whenever I'm around her, Reagan's always smiling always has a cheery disposition and brightens every room she happens to be in. And, her disposition always always rubs off on me (and pretty much anybody else who is lucky enough to be around). So Shauna and I were thinking the tonight about how different our lives would've been had she not entered our lives. She has had such a positive influence on us that it's hard to even imagine. Of course we wouldn't have even known what we were missing but I'd like to think that everyday we would think that something was missing in our lives. She is such a blessing from God that I know that she was part of the plan, she needed us and we needed her even more! What I wanted this to say was that she is our heart, she is our blessing, she has taught us more in the last three years than we could possibly teach her and I wouldn't want it any other way (or wouldn't HAVE wanted it any another way).