Tuesday, July 1, 2008

Gavin is more than Down syndrome

This past weekend my mom and I took the boys to a Whitecaps baseball game. We had been given tickets to go to the game by the West Michigan Down syndrome Association. Someone had donated the tickets to the association and the boys were excited to go, especially since it was Star Wars night at the ballpark! We had lots of fun, but I came away feeling quite sad. We sat near 4 other children with Down syndrome. They all were about 4-5 years of age. They were all just adorable! I found myself watching them more than the game. I just took in ALL that they were doing and COULD do! It broke my heart watching them because it made me realize, even more, what we will never see with Gavin. I really wanted to tell these families how blessed they were to have their child with Down syndrome and that they should feel blessed that they were doing so well. I didn't, but I thought about it.

So often I think back to the days when Gavin was born. When I was pregnant with him, I knew that there was something wrong. I told my doctor this and I told Joel this. They just thought I was crazy, I think. But, for some reason, I just knew that Gavin would be born with a health issue. We had an ultrasound, but nothing was found to be abnormal. I believe God gave me this feeling so that I could be somewhat prepared for what was to come. Driving to the hospital for the delivery I was very calm, and never felt excitement. I don't really know how to explain it. After he was born he had difficulty breathing. Before they took him to the NICU, they placed him in my arms and told us that they thought that he had Down syndrome. I remember just staring at him and having a feeling of relief in some way. He just looked so familiar to me, like this is what I expected or something. I loved him before I had him, but at that moment I fell deeper in love.

Later that evening a doctor came to tell us that they had done an echo on his heart and that he had heart defects. The first thing out of my mouth was, "What's his life expectancy?" I didn't really care that he had Down syndrome, but I really wanted him to live! I had NO idea what would be in store for our family that day, but I knew that we were going to fight with this little guy! Needless to say, we have had quite an adventurous journey with Gavin, but one SO WORTH IT! I remember in the days after his birth having a couple of family members and friends saying that they were more upset or would be more upset about the fact that he was born with Down syndrome than the fact that he had heart defects. I thought that they were nuts and maybe even a little bit too vain or something. I felt bad thinking this, but it also made me kind of angry. Why should they care if he had Down syndrome? What's the big deal about that?! People with Down syndrome live wonderful lives! They are ADORABLE, if you ask me and they teach so much to others. I thought this long before I had Gavin, so it's not just me being biased. Anyway, Was I happy right away that my son was born with Down syndrome? NO, but I knew it would be O.K. and that there was a reason for it. But, for others to be more concerned with his Down syndrome than his heart defects was just ridiculous to me!

Looking back to those days now, especially after seeing some precious children with Down syndrome this weekend, makes me feel sad. What I wouldn't give to have had a child with JUST Down syndrome! We would not have spent over 6 months in the hospital. Gavin would not have had a stroke. Gavin would most likely be crawling around, eating, laughing, talking.....!

Jacob really noticed these children at the game as well. He said to me, "You know that boy sitting next to me? He talked so well! He was funny! I bet he goes to college someday!" He was really impressed! I was too! I just wish others could see Down syndrome like Jacob and I are blessed to see it! What a blessing these humans are! I pray that people can see this more clearly by knowing Gavin and all that he has been through! I pray that others can see just how blessed they are to have a child in their lives with Down syndrome or some other genetic abnormality, and that they can look at them as being MORE than what they happen to HAVE! I'd take Down syndrome any day! That's what I would tell someone who is blessed with this God given gift and opportunity! I'd also tell them to Take it!, Enjoy it!, Learn from it! And, if I remember correctly, as my sister's husband said after Gavin was born: "Think of it as a dare to be great situation!" This is how I hope others can look at having a very special child in their lives!

"...that the God of our Lord Jesus Christ,...may give you the spirit of wisdom and revelation in the knowledge of Him, the eyes of your understanding being enlightened; that you may know what is the hope of His calling, what are the riches of the glory of His inheritance in the saints, and what is the exceeding greatness of His power toward us who believe, according to the working of His mighty power." Ephesians 1:17-19


Amy said...

Wow, this is all so, so true! I can recall feeling so worried about Gavin's health, but never once was I worried about the fact that he was born Down Syndrome. When Mom called and told me the news, I said, "That's OK, we just need to make sure he's going to live!" Never would it have occured to me to think I'd rather have him suffer from heart issues as an alternative. WOW...

I recently read about some stem cell research they are doing that might actually be able to lessen the effects D.S. has on newborns born with it. I think it's a fascinating theory (read more here (it's the first photo/blurb): http://www.forbes.com/2008/05/28/stem-cells-cancer-biz-healthcare-cx_mh_0528medtech_surprises_slide_6.html?partner=email), but when I really started thinking more about it, I didn't know how supportive I was of it. I mean, do we change the fate of this person if we change the outcome God intended? I mean, just think of how many people Gavin has blessed along the way...there are other D.S. children yet to be born who are destined to fulfull similar greatness!! :o)

Thanks for this wonderful, uplifting post. Your insight is so, so precious and appreciated! (((HUGS)))

Jessica mommy to Alex/ RTS said...

I knew something was wrong with Alex too, my feelings were exactly yours, exactly! Right down to feeling calm, but not excited at the hospital.
what beautiful words you write, I agree with you, and will always look at our special kids through eyes filled with love!

The VW's said...


I know that God intended for Gavin, and others like him, to be just as they are and that there is a purpose for these special children.

I remember how supportive you and Mark were after Gavin was born. I really appreciated your support and love! THANK YOU!

Love you!



It was a weird feeling to me at the time, but now it makes sense.

Your little Alex is definitely a special one! Thanks for sharing his life and thanks for your support!


Inspired said...

Alicia - this may be one of the most beautiful things I've ever read. Gavin is certainly a blessing and gift to so many. He is very lucky to have you as his "voice". You tell the stories so honestly and openly. Some moments very raw and others so touching you get goose bumps reading it. Each a gift to those you share it with. one of the many, many, many things that amaze me about you is how you are so incredibly open with your feelings and frustrations via this blog. I've known you my entire life and know being "out there" like this is not easy for you. I'm thankful to know that you can do this and because of that your story has touch SO many people in such a positive way. Thank you!

Inspired said...

And....I forgot to mention that the pictures of Gavin are ADORABLE!!!!!! Want to take a big bite out of the foot : )

Annette Selden said...

What sweet pictures of Gavin! Facing such a huge challenge definitely puts things in perspective when we hear others wishing for something different for themselves. Thankfully we can have hope that God has purpose, even in situations that seem hopeless.

The VW's said...


It's a whole lot easier being "out there" when I'm behind this computer screen! :)

Thanks for your kind words and all the support that you've given me!

I agree with you about wanting to bite into his foot! Baby feet are the best!

Love You!



Perspective is an awesome thing, especially when it's given to us from the Lord above!

Thanks for your support!