Monday, September 26, 2011

Step Up For Down Syndrome!

It's that time of year again! Time to come out and walk with Gavin, and all of his cute friends! It's Buddy Walk time!

Except this year the Down syndrome Association of West Michigan has changed the name of our walk to..........Step Up For Down Syndrome!

Gavin would love it if you came out to walk with our family! And, even if you can't make the walk, you can join our team by donating to the cause.....or by thinking of our team, and all of those who have Down syndrome!

Here is a link that you can click on to donate, or to get information on when and where the walk is:

FirstGiving - Your fundraising

Thanks so much for your continued support of Gavin...our family...and all of our inspirational Down syndrome friends!

Gavin says, "Thanks for stepping up for Down syndrome!" : )

"Order my steps in thy word: and let not my iniquity have dominion over me." Psalm 119:133

Friday, September 23, 2011

Gavin's afternoon at the hospital

Gavin and I spent the afternoon at the hospital. Here is a picture that I tried to take of Gavin while we were waiting in the waiting room:

He doesn't look very pleased about the whole thing, does he? Actually, he was quite the trooper! He did SO WELL, despite the fact that it took 4 pokes to start an I.V. He didn't cry at all unti the 4th poke......What a good boy! Then he finally said, "THAT'S ENOUGH!", and started to cry.

We were at the hospital to do a sedated heart echo, and also to have his pacemaker evaluated. They did the echo first. He has never had a sedated echo before, but this time the cardiologist wanted to sedate him to get a really good reading since Gavin doesn't lay as still as he used to. They used Propofol to put him to sleep. That is the drug that Michael Jackson died from. When they said they were going to use it, I said, "Wasn't that drug given a bad name by M.J.'s death?! You sure you want to use that one?!" They assured me it was safe, so I approved. After they put the med in Gavin's I.V., he was asleep in less than 10 seconds flat! It was kind of scary to see him go out that fast! But, it did make me aware why M.J. might have liked that drug! I sure would like to go to sleep, and stay asleep that well!

The initial results show that Gavin's heart is not enlarged (great news!), and his Mitral valve leak has not gotten any worse! This was a relief, because I am dreading the day that they say he is in need of his next heart surgery!

After his pacemaker was evaluated they decided to make some changes to the settings to try to preserve the battery life of the pacemaker, and also to allow his heart to work a little more on it's own. I'm praying this change doesn't create any ill effects! I asked his cardiologist if he really wanted to mess with a good thing, considering Gavin's history, but he thought Gavin could handle the changes, so hopefully he is right!

Gavin was also sent home on a 24 hour holter monitor, to make sure his heart is beating regularly, and at a normal rhythm. It looks like Gavin has a bomb strapped to him!

Nolan and Caleb feel really bad for Gavin. They think it's so sad that he has to wear this for 24 hours, because they said it doesn't look like it feels comfortable at all! I agree! They are also sad that Gavin had to be poked so many times today. It makes me sad to see them sad.....but it also makes me happy knowing they have such a sensitive spot for Gavin and that they love him so much! They are such great big brothers to Gavin!

I'm glad this day is over with! I was worried about Gavin being sedated, and I was also worried about the results we would receive. I knew that God had it all under control, but still, this Momma thinks she'll sleep much better tonight, knowing that surgery isn't looming over us any time soon!

Hopefully Gavin will sleep good as well.....but after the great nap he got while being sedated today, he may just decide to stay up and party all night long! : ) If he chooses to do this, I'll gladly stay up and party right along with my sweet boy!

Gavin was the talk of everyone who saw him at the hospital.....thanks to his cute football socks!

Aren't they adorable?!

And, isn't my brave boy a cutie as well?!

He makes me so happy, I just love him so much!

Thanks for praying for my boy! Hugs!!

"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will gaurd your hearts and minds through Christ Jesus." Philippians 4:6

Thursday, September 15, 2011

Five Years of Blessing!

Happy 5th Birthday Gavin!!!!

We Love You!!!

I can't believe how blessed we are to have you in our lives!

We thank God for you, and can't believe that He trusted us with YOU!

You are such a gift! Love you sweet boy!!

"Every good gift and every perfect gift is from above." James 1:17a

Friday, September 9, 2011

How much should I tell people?

This week I had a dentist appointment for myself. I took Gavin with me for the appointment. He sat in his stroller next to me while I was having work done, and he behaved himself so well that the dentist said he could pick a toy from the treasure box. I was thinking to myself, of course he was well behaved.....Gavin is always a good boy! But, I guess this is rare for a soon-to-be 5 year old boy. They are usually busy and can't sit still! Gavin is easy to bring along with me, because I always know right where he is and that he won't be getting into anything. But, the dentist seemed surprised by how great Gavin was throughout the appointment.....and this got me thinking.

When he offered the toy to Gavin, I was about to tell him that Gavin wouldn't really be able to play with any of the toys.....but then I realized that explaining Gavin's developmental stage would take too long, and it didn't really matter if the dentist understood why Gavin wouldn't play with the toy. So, I pretended to show Gavin the toys and ask him what he would like....and then I took a ball from the box, knowing full well that Gavin wouldn't be playing with it, but feeling proud that the dentist thought Gavin was a good boy and deserved a toy anyway.

I always struggle with times like these. How much should I tell people concerning Gavin? I know that they realize something isn't typical about Gavin.....especially when they ask me how old he is.....but do they really want to know Gavin's story? Do they really want to know that Gavin's brain is totally damaged by a stroke, and that he is unlikely to advance much further than he already is.....or do they wish to remain in their blissful state of innocence that all children progress, and this includes Gavin?

The last time I took Gavin to the neurologist, he was seen by a new person to that office. She started talking to Gavin like he understood what she was saying to him. She was asking him questions and explaining everything to him in detail. I do appreciate it when people treat Gavin the same way they would treat any other child, but should I have told her that Gavin can't really understand all that you are saying to him, and all you really need to do is just be gentle with him and talk to him in a kind voice, because he doesn't understand what you are about to do anyway. But, again, I just let her do her thing, without explaining everything to her.....because quite frankly, if you ask me, spending any more time in a doctor's office than I need to is quite unnecessary! And, taking the time to fully explain Gavin to her would have meant that we would be there longer than we aready had been.....and Gavin and I do not like spending our days at the doctor's.....we are there often enough already! So, I said nothing.

I did try to have Gavin play with the ball he got at the dentist office.....but he can't hold it, or control it. But, he did feel it and get some stimulation from it's that's probably good for him.

Another time I wondered if I should explain things about Gavin was this past weekend. We were at a wedding, and there was a band playing music there. Gavin started to have a seizure, which makes him jerk and move irregularly. Most people don't notice that he is having a seizure, because it doesn't look like the grand-mal seizure that most people typically think is what a seizure looks like. But, one lady sitting by Gavin said, "He looks like he is trying to dance! How cute!" My first thought was to tell her, "No, he's just having a seizure." But, then I decided to just let her think that he was trying to dance.....because that is a much better thought to be left with, than he's having a seizure!

So, as you can see, I have a difficult time knowing how much I should tell people when it concerns Gavin. I love to talk about Gavin with others, but I don't want to overwhelm them with all that Gavin is. Plus, when I do tell them more about Gavin, and then I follow up the story with how blessed we are to have him in our lives....they usually look at me with pity or don't believe me when I explain how happy I am to be his Momma! I guess no one can truly get it, unless they have a child like Gavin.

I may carry a ton of responsibilty on my shoulders caring for his many needs, and having so many thoughts running through my head.....but I also get to look at this sweet boy each day!

I get to hold him and love him each and every day! And, despite the weight that is always on my shoulders, I am filled with such lightness when he gives me one of his infectious smiles! I may not know how much to tell people about Gavin, but the one thing I want everyone to know is that I am one very blessed Momma to have him in my life! : )

"I know that Messiah is coming" (who is called Christ). "When He comes, He will tell us all things." John 4:25

Thursday, September 1, 2011


Our church puts out a monthly publication, called The Bethany Beacon. This month I wrote a little something for them to add to it. I wanted to update those at our church, who may not know Gavin's full story, on how he is doing. I also wanted to share my thoughts on how blessed we are to have Gavin in our lives.....and most importantly, how blessed we are to be dependent on God!

Since what I wrote pertains to Gavin, I thought I'd put it on the blog to share it with all of you! So, here you go!

Reflections on (In)dependence

This year on the Fourth of July, I began reflecting on our independence. Every year as this holiday rolls around, I am aware just how blessed we are to live in a nation where we are granted the freedoms that we, as Americans, are blessed to have! It feels so freeing to celebrate, what so many countries do not have the opportunity to possess. This year as we celebrated our nation's independence, I suddenly had a revelation about just how independent we are.

I have Gavin to thank for this revelation.

I am often asked how Gavin is doing. I enjoy sharing my sweet boy with others, and I look forward to talking about him with whomever shows interest in his wellbeing. One of the questions I am often asked, "Is Gavin crawling yet?" The answer to this question is way more complex than, "No, he's not." So, if you've ever wondered just how well Gavin is is a short update on his life.

Gavin's life started out very fragile.......but we had no idea just how fragile he would become. At 7 months of age, after having several cardiac surgeries, Gavin was doing quite well. Things were looking up for him and our family, but while recovering at a local hospital, an unexpected mistake occured. Due to this profound error, Gavin suffered a hypoxic brain injury, otherwise known as a stroke. The stroke left Gavin's brain severely damaged. His entire brain was affected. There was nothing that could be done to correct what had happened. But, God kept him alive, despite the fact that doctors thought he wouldn't survive. We are very thankful for this gift!

This leaves us to the present day. Gavin turns 5 years old this month, and yet, he is only at a 4-6 month old level. And, he is unlikely to progress much further. In fact, Gavin is totally dependent on many for his survival in this world. He is dependent on a pacemaker and cardiac medications to keep his heart pumping. He is dependent on medications to prevent him from having seizures, and also for helping his lungs to breath properly. He is dependent on a feeding tube inserted directly into his stomach, in which to gain nourishment and fluids to grow and live. He is dependent on many doctors to keep him healthy and well. He is totally dependent on his family. In fact, without us holding him up into a sitting position, he would fall right over. He also depends on us to change him, position him, help him when he is gagging, administer his nourishment and medications, give him breathing treatments, move him from place to place.....and the list goes on!

Gavin is far from independent!

Some people might look at Gavin with pity, because he is so reliant on others. The truth is, Gavin is probably the happiest person that I know! He is a bright light in this dark world. He is totally unaware of his dependence on others. He is free from the worries that most of us spend our days concerned with. I believe that most of us like to think that we are in control of our lives. We go about our days, making decisions and thinking that we are achieving plenty of goals. This makes me think about the bumper sticker that reads, "God is my co-pilot." The reality is, if we think that we are in the driver's seat, we had better switch seats quickly!

Since Gavin came into my life, and since having to care for his many needs, I've been made aware just how dependent we ALL are! Gavin is very dependent on others, but I like to think that his life also presents an opportunity to show others what a blessing it is to be dependent on Someone Else! Gavin's dependence may be very obvious to us all, but the truth is, we are all dependent. We are dependent on the maker of heaven and earth, our Almighty God! And, knowing this fact can truly set us free! Relying on our dependence on the Lord, is the best medication there is! When we fully depend on God, we are given the worry-free and joyful existence that our son Gavin is blessed to live. I am so thankful for the perspective that God has given me since Gavin came into our lives! And, I can't imagine going through life without my dependence on Him!

I remain grateful to possess the independence that comes from living in America, but I am even more grateful for the knowledge that as a child of God; my life is not my own.....and I am truly dependent on Him alone!

"He gives power to the weak, and to those who have no might He increases strength." Isaiah 40:29