Amy’s High School Graduation

Amy graduated a few weeks ago! Ironically it wasn’t emotional for me to see our last child walk across the stage on graduation day. It was emotional to see Amy well enough to do it. Amazing how our priorities change. I have realized how satisfying it is to eat with those you love. Our culture places a lot of importance on food. With Amy having such difficulty to swallow, eating isn’t rewarding or fun. I am surprised how often I want to reward her for being brave for a blood draw or something similar with a treat.  Food is not gratifying for her. She started TPN therapy through her IV to support her with vitamins, minerals & calories. She seems to be improving with the help of supplements, homeopathy, chiropractic and IV meds. Lyme disease has effected Amy neurologically. You might think because Amy has down syndrome I am used to dealing with neurological setbacks. I am not. Before lyme disease Amy was independent, feeding herself, making her own salad or snack, showering, etc. Now that she needs complete care I am spending a lot of time with her. I know Amy comprehends everything. When she can’t speak, her eyes tell me. Sometimes when I look in her eyes I want to cry for the pain she is enduring. There are periods of time that she is completely coherent and she will say things like “ I’m sorry Mom” or “ I want to be happy. I am better now”. She melts my heart. Being a care giver is not easy but the rewards are immeasurable. Every time I feed Amy I thank God that she is still here for me to feed. Every time I help her in the bathroom I know this is not forever and she is going to get better. God has wrapped His arms around us and is giving us the strength to fight this fight. There is a song called “Afterlife” and Amy and I sing it a lot. Also, BRAVE. You have to be brave to fight lyme disease and Amy is! Thank you for continuing to hold us up in prayer. We need it. Thank you for being patient if you have submitted a puppy application and I have not called you yet. Thank you for understanding if you don’t get a response to your email immediately. My life is not my own right now and your understanding is greatly appreciated.