People who know me well know that I do not text, tweet or use Facebook. So putting together this blog has been such a new experience and those that visit may see it changing as I learn more. I have avoided technology not because I am not capable, but by choice. I knew for me it would be a temptation to get sucked into things that were easier and more fun than figuring out how to best help George, how to spend more time with my older boys and husband, how to keep up with the house and keep us all fed etc...All that being said I do email and frequent yahoo groups and research late at night all I can. I have learned so much about how to best help George, thanks to technology. There is a balance. I am now motivated to use more technology to reach out and help George. I do have some health reasons as to avoiding certain technologies too, however that is another story! :) The bottom line here is if it helps George then it helps us all!
The responses I have received so far from people about my blog have been basically amazement about all I have detailed. To me it is not that amazing. I have had LOTS of time to think and I feel like God has been preparing me for the last 5 1/2 years. Looking back just makes me smile because I can see his hand in it all. He has put amazing people in my life to encourage me, pray for me and teach me things I needed to learn. I am so thankful for them all.
As you can imagine, George and I have spent lots of time together. We have never spent a night apart in almost 6 years. Even after heart surgery, I spent the night in a chair holding his hand in ICU every night till he could be unhooked from the many tubes and monitors and I could hold him. Neil and I tag teamed so I could use the bathroom.
I can't remember exactly when it began, but George didn't sleep well for the first 3 years, therefore I didn't either. I think I averaged 3 hours most nights. I am amazed at the strength God gave me to endure. During the night he would just cry (me too, most nights) in pain, stomach I believe. Bouncing him on an exercise ball was the only thing that seemed to sooth him and nursing. It was exhausting for me. I only woke Neil up if I absolutely had to, because he didn't need to be sleep deprived either, especially since he had to work all he could to pay the bills.
I was trying many things to figure out what was going on. Some nights it was illnesses. George had a bad respiratory cold before the hole in his heart could be repaired. It was scary. My mother in law and I stayed up all night with him, taking turns holding him upright so he could breathe
Thankfully, George's digestive system is doing very well today. He sleeps well all night, unless he has an illness which doesn't happen too often these days. Many people with Down syndrome have issues going to the bathroom and have to be on medication all the time. So even though they STINK, I love George's daily poops! It is the little things in life to be grateful for---poop!!!! Yeah!
As I began putting together this plan and I finally spoke with Julie Sando out in California on April 19th, I already knew what we needed to do. Julie didn't have to tell me too much about what she did, because through my research, I already KNEW I wanted to work with her. I freely told her our struggles and felt she could relate because she has seen so many families like ours. We are not unique in our struggles. She gave me suggestions on how to make my letter to my out of state family members and how to reach out for help. It was so funny when she emailed me after the call and said she felt like we knew each other already.
It took me about 5 days to get everything written out and I was awake most of those nights with my mind swirling with thoughts. As soon as I had the words down and I was still sleep deprived, I had to tell someone to keep me accountable. I knew as soon as I slept well that I would come to my senses and chicken out, because while I knew what needed to happen, it was also terrifying. Those negative thoughts that wanted to creep in like, "How can you ASK for money and peoples' time and energy?"
I chose to listen to what I believe was God's voice. I know in my heart that there are others that will be blessed by participating and it is not all about us. Knowing that George will not get better doing what we are doing now, is also great motivation. George needs PEOPLE, all different, one on one. So I started sharing the vision with those close to me. I am so thankful for the encouragement I received and it is their prayers and encouragement that keeps me going!
I will say of the LORD, He is my refuge and my fortress: my God; in him will I trust. Psalms 91:2
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