Friday, October 28, 2011

So much to say & share.....

.....not enough time, energy, or brain power to say it or share it!

So, here I go.....prepare for a long post!

Lots going on with Gavin, and our family the last couple of months. Mostly good and exciting things.....along with a little bit of a scary thing. And of course, the dreaded sickness that invades a family of six!

The dreaded cold has made it's way through our family, sparing only Jacob so far. Gavin and I have it right now. I have felt miserable the last few days, especially in my feels like it's going to explode! Gavin seems to be tolerating it better than I am, but he does sound horrible! (Very stuffy and a deep cough) Hopefully he continues to tolerate it so well....he's such a trooper, still giving smiles even though he must feel lousy! He's obviously more tough than his Momma is! I guess when your chest is cut open a few times, it takes more than a simple cold to put you down!

Some great news we got a few weeks ago is that Gavin's 2nd degree heart block has GONE AWAY! Some time between, 4 1/2 years ago when his pacemaker was put in, and now, his electical activity between the upper chambers of his heart started to communicate again with the lower chambers of his heart! This amazes me! ONLY GOD! Praising Him for this miracle!

The scary part of this is that because he no longer has this block, the cardiologist tinkered with Gavin's pacemaker settings and decided to have his heart do all the work, instead of the pacemaker helping out. His pacemaker used to do 99% of the heart's firing, but now it will do close to 0%! This means we have to really watch Gavin for symptoms of heart block.....and this scares the Momma! I am used to relying on that pacemaker, knowing it would take over if Gavin's heart went crazy! Yikes! It will still kick in if Gavin's heart rate goes below 60 beats per minute, but it will only beat at 60 beats per minute continuously. This means that Gavin could feel really dizzy, and even lose consciousness if it stays beating at this rate. So, we have to watch for signs that his heart isn't beating as fast as it should be....which is around 100 beats per minute on average, for Gavin.

But, this is definitely promising news! It is so much better for the heart to beat on it's own, like it does in most of us. Gavin's heart muscle will benefit from doing the work, instead of the pacemaker doing it!

Here are some other things that our family has been up to:

I'll start with a few pictures from Gavin's 5th birthday. (Yes, I realize it was a month and a half ago....I told you I haven't been sharing much on the blog!)

Did you notice his "cake"?

Since Gavin doesn't eat by mouth, and he doesn't really like it when we give him tastes of anything anyway, I "made" Gavin a Compleat Pediatric "cake". That's all he eats anyway! :) And, I'm quite sure Gavin enjoyed this better than having to taste the frosting like we usually have him do....he's not a fan of anything in his mouth! Plus, it sure was an easy "cake" for me to make!

Another thing our family did was to walk in the Make-A-Wish walk. We wanted to give back just a tiny bit of what they gave to us! I still can't believe the trip our family was able to take, due to this charity's efforts! They are such a blessing to so many families!

Gavin also started school again. This year he is having school at home. A teacher and therapist come once a week, and he and I go for a group class once a week at the school. We are hoping he stays healthier with this change. He was sick so often last year!

Here is Gavin doing some therapy at home:

This is tiring for him!

But, isn't he just precious?!

We also walked in the Step Up For Down Syndrome walk this month. Our state changed the name to this, instead of calling it the original, "Buddy Walk". The name may have changed, but the fun we had, and the cuties we got to see stayed the same!

So, as you can see, we've been keeping busy.....especially when you add in doctor's appointments, school, sports for our older boys, and homework, etc. Life sure is busy! But, we are doing well and so very blessed!

One more thing, please consider donating to help an orphan get home to a wonderful family waiting for her!

This is Olga. She lives in Russia and has been in an orphange all of her life! She will soon be transfered to an institution where she will no longer be able to be adopted. Some countries do this when children turn about 6 years of age, especially if the child has special needs, because they consider them "unadoptable". It breaks my heart knowing that children may never have a family to call their own!

But, the good news is Olga has a family here in the states waiting to be able to go get her! They are so close! They just need about $1200 more to reach the amount they need to go get their daughter! They have worked so hard to raise money, but they can't do it all on their own! Please consider helping them get to Olga before it's too late! Even $1 helps, if that's all you can give! Their adoption paper work expires in November, so time is running out! Please help this sweet girl get to her family! Go here to donate something to their cause. And, most importantly....PRAY!

"Therefore by Him let us continually offer the sacrifice of praise to God, that is, the fruit of our lips, giving thanks to His name. But do not forget to do good and to share, for with such sacrifices God is well pleased." Hebrews 13:15-16

Tuesday, October 25, 2011

Part of the Club

This weekend I was reminded that I'm part of a club. This club is very inclusive, and you can't join unless you meet certain qualifications. Most people don't even want to join the club.....but once they are wisked into it, most are quite happy to be a part of it.

I was reminded of this fact when I was at Costco with a few of my boys. Gavin was tucked away in his stroller. As we walked the isles of the store, I noticed a lady looking at him and smiling. This always makes me happy, because I love that Gavin can make others happy just by being him!

The boys and I finished our shopping and we headed to the check out. As soon as we walked away from the register, we were greeted by the same lady and her husband. They were holding up a cell phone with a picture of a boy on it. They both had a huge smiles on their faces, and said, "We have one too!" I knew exactly what they were talking about, even before I studied the picture on their phone. They were refering to their "winner."

If you don't know what a "winner" is, here's an explanation: I was taught this term a couple of years ago by a Mom who has a "winner" of her own. A "winner" is a person who has Down syndrome, or some other form of special needs. This lady told me that this is what she refers to those who are born with a little something extra. And, I couldn't agree with her more! They are all winners in my eyes!

Anyway, this couple at Costco went on to tell me about their boy, who also has Down syndrome. We talked a few minutes, sharing stories and diagnoses....and it was as if we'd been friends forever! We just "got" each other...all thanks to our special boys!

We are blessed to be part of this club! Our boys are the reasons we are allowed membership. We may not have wanted to join the club, but here we are.....and we are like family because of it!

In fact, they were having a 6th birthday party for their son the next day, and we were invited to the party! That's how close these friendships are in this special club! Our family doesn't even get invited to some of our own family's birthday parties, but here is a family we had just met....and they invited us to join them! It's because we ARE a family! We have an instant bond, because we can relate to each other like no one else!

We've been through the heartache, the daily struggles....and we know the feelings that have formed deep inside us, thanks to having our special children!

We may not have chosen to join this special club, but now that we are in it, we embrace the goodness that comes from being a member. We are given challenges that most people will never understand. We are taught lessons that most people will never learn! We are also given a love that most may never feel.

I am so thankful to be part of this club.....even through the hardships, long nights, long days, the worry, and the demands that have been placed on us since becoming a member of this organization! And, I am so thankful that God brings others into my life who truly understand the life that He has called us to live!

Next to the membership that I have been blessed to be called into....that of being a member of God's Kingdom.....I am most thankful for the kinship I feel with those who have been placed into this special calling.....The calling of caring for one of God's most weak and precious creatures! The calling of being a special needs parent! Once you are part of this club, and once you get used to the new normal that comes with this calling, I guarantee you won't regret it in the end!

May God bless all of you who are part of this club, and may He give you peace, strength and grace as you fulfill the work He has intended for you! Thanks for being part of my family and for supporting us along the way! Hugs!!!

"And if one member suffers, all the members suffer with it; or if one member is honored, all the members rejoice with it." I Corinthians 12:26

Monday, October 17, 2011

Purpose-Filled Life!

It has been one of those days! A day that I sit and stare at Gavin, wishing that he had more purpose in this life. Wishing that he could sit on his own, walk, and talk. Feeling sorry for him.....and sorry for me. Wishing that Gavin hadn't had the severe stroke that he had...the one that has robbed us from a child who could have had so much possibility in this life! The stroke that I think back to every once in awhile, and think to myself, "What if the doctors had listened to me?! What if they had done what was needed to prevent this from happening? What if Gavin was just the 'typical' child with Down syndrome........What wonderful things would we be accomplishing today?"

Yep, one of those days!

Then I read the following poem:

Dear God,

I am just a little boy
I don't know how to pray
But please tell me, Lord
... Why did you make me this way

He explained,

I gave you no sight
So others could see
That My glory is planted
In the smallest of seeds

I gave you no voice
So others you could teach
That even in silence
I can hear you speak

I gave you a life that others
Would not wish to have
So they would be grateful
Instead of boastful and proud

The body of a child
The purpose of a man
You were lovingly created
To fulfill the Master's plan

So close your eyes, my child
I will give you dreams
For someday you will fly
And you will not need wings

Lisa J. Brown

Some days I forget just how purposeful Gavin's life really is! I get caught up in the things he can't do, instead of the purpose he is fulfilling! Some people may look at Gavin and think, "What a shame." The truth is, God's plan for Gavin is probably greater than His plan for most of us.....and I am so thankful that God chose me to watch over Gavin until His plan is fulfilled!

Gavin may not appear to be able to accomplish much in life. He may have to work very hard to just lift his head up for a few seconds while he sits in an infant toy...

......but thanks to reading this poem, and thanks to the promises that God has made known to us.....I KNOW that Gavin is living a very wonderful, purpose-filled life! And, I am so very proud of him!

"To everything there is a season, a time for every purpose under heaven." Ecclesiastes 3:1