Monday, August 18, 2008

John Continues to Thrive

First, I would like to say thanks for reading this blog. It not only helps me to write down my thoughts as I continue to work through this mentally, but it also helps to know that you are out there. To date, there have been people from 28 states and 8 countries to see this blog. I hope this blog is a source of strength for people. Being able to write my thoughts have helped me to mentally work through some issues. I have been researching the Internet for not really more information on DS, but for other families in this situation who are willing to share their experiences. Over the weekend, I found a forum such as that - real life families struggling with the same issues as me. So I would like to say to all the nice people that I have had the chance to talk with from www.downsyn.com what an encouragement you have already been. I hope that this blog is encouraging and a resource of strength for you.

Yesterday, John weighed 7lbs 9.5oz which means that he has gained 5oz in 6 days. He eats like there is no tomorrow. Joy comments that she feels like a milk factory because that is about all she gets done but she is committed to this process as it is working well for right now. He pretty much wakes himself every 2 1/2 - 4 hours to eat and some nights he will go as long as 5 hours. He continues to interact with the other kids more which they like that. They enjoy playing with him in his jungle gym.

He continues to have Daddy playtime. He likes laying on his belly on my chest which I am sure it is nice and cozy for him as I snuggle with him. He is holding his head up a little more each day but not consistently which will come in time. We are trying not to push him but to keep him challenged. As we learn from the experience of others more about John's personality, we are able to relax a little more with him. However, it is still important to keep that carrot dangling in front of them.

Yesterday was the first Sunday that we took John to church. It was good to be able to share with our church family the little boy whom they had been praying. They all enjoyed seeing him and holding him as he captured the hearts and attention of a lot of people. We eat supper at our church every Sunday evening so it was a great chance for us to sit around and share what the Lord has been doing in our life. It would be very easy for us to sit around feeling sorry for ourselves and our situation but the Lord continues to give us strength to face our struggles and to turn those struggles into victories. Also, as I have learned in the past and am reminded of again that the situation is never as bad as it appears. Sure there are things that we wish that we could change for John but there are a lot of things about John for which we are thankful. There is a lot of energy lost is self-pity - energy that could be used for good in my life or someone else's.

Today is the last day of summer vacation for my other 4 children as they will head back to the classroom tomorrow. I think they are looking forward to it although it will be a change for John which he may be looking forward to a little peace. Joy and I will miss their help though. They all love to help out and can't wait to have their turn holding him or sitting by him in the van. We have been blessed with older children who love him and are motivated to help him. We told our kids early on about the diagnosis of DS and what it might mean for John. They have taken that as a challenge and have not looked at him any differently which is what we all wish for - to be seen for who we are and not for what we are lacking.

3 comments:

amy flege said...

I found your site through down syn! I have a daughter who is 2 with DS named Mayson. You are so blessed to have John in your family. Congratulations!

boo4baby said...

Tell the kids that I hope their first day of school goes GREAT! Luke and Leah started today. Love y'all!

Catholic Mom x 4 said...

Thank you for your beautiful sharing. We, too, have a John Michael who is 9 months old and has Down syndrome. He's our 4th and a true gift from God. We didn't know beforehand, which was best for my personality. We put our trust in God that He knew what He was doing and that He didn't make a mistake in giving us John Michael. You have a fun and loving road ahead of you. It's funny to say that since we've only been on this path for 9 months, but he's such a joy. God also knew the perfect birth order for John Michael since our 3 year old daughter dotes on him and will be his biggest teacher. We also have an older son and daughter (11 and 9) God's peace and blessings to you, Joy, and your lovely children. Pope John Paul II once said something to the effect that people with Down syndrome are living saints. Enjoy your little blessing -- he's beautiful.
Monica