This is a very difficult letter for me to write. I keep putting it off because I couldn’t face the sadness I feel. I’ve actually wanted to write it for years but never tackled it. Whenever you watch your child struggle you want to save them, do it for them, bear up those who are hurting them, tell them how to handle it, cry, yell, scream or take over. Well, since none of these really help, all I can do is pray for you, fast for you, serve you, love you, hope for you and still cry for you.
This past few years have taken so much from you. I can only imagine how out of control your life has felt. Nothing, to me, is more challenging than being controlled by people or circumstances I have no control over or say in. I have only had a taste of the pain, changes, losses, anger and despair you must feel. I ache for you. Somehow you’ve been robbed of security, confidence, abilities, strength, opportunities, and peace of mind.
You came into the world 6 weeks early — but that wasn’t the first time I met you. When I was about 4 weeks pregnant with you I started bleeding and thought I had miscarried you so I went to the doctor and he did a sonogram. When I looked at the screen, I saw a little heartbeat. There wasn’t much form to my little boy yet but there was a strong heartbeat. I went home smiling — knowing I had a fighter. Little did I know how sweet this fighter would be. I had met my boy.
You were covered in white fuzz when you were born — like a little, soft rat. You were healthy, just small so we took you home and introduced you to your family. We were all in love.
You had lots of pain and discomfort almost immediately and as you know you cried for most of the time until November. Finally, we found out you were allergic to milk — even if I drank it. The minute we cut out milk, you stopped crying. I rocked and sang to you for hours, I slept sitting in the rocker while you cried. Dad took the 9PM-1AM shift so I could get some relief. Through it all, I felt like you were communicating the message “thanks mom. I’m sorry. I love you.” I knew you felt bad even as a baby. I had good support from friends and family. We all loved you and your spirit.
You were a beautiful, white-haired, freckled, nosed darling. You were happy, social, loved, funny, compassionate and carefree. You loved GI Joes, drawing, and playing.
School wasn’t easy but you liked it and did just fine. You didn’t love reading. You had lots of good friends all your growing up years. They loved you and their parents love you. You had fun playing sports and had good skills. You loved music — singing, playing and listening. You handled our move about as well as a high schooler could — you made new friends and always had somewhere to go.
Then came your love, your son, home ownership and a job. Somewhere, I can’t remember exactly when, your undiagnosed illness began to rule your life. It sucked your joy, your drive, your hope, your patience, your wallet — most importantly, your spirit. My gentle, sweet boy was now angry and defeated. Life was so difficult it was just survival.
I’m proud of you for hanging in there, trying new things, spending hard earned $ and enduring. You have been an example of courage and light.
Lyme has been like morning glory — popping up in every beautiful life experience. It won’t go away. It strangles life from health. It robs nutrients from the intended receiver. It pretends, hides, frustrates, and chokes.
I’m so sorry this has been your focus and struggle for so long. No, it’s not fair. It just is. There are no answers — yet.
I just pray that your wife and sons can be worth all you’re fighting. They need to know you, the loving, sweet person that you are. You are a wonderful person.
You are an example of a fighter. You can rise and fight again. I know it! You can get perspective again. You can be happy. You are loved.
My prayer is that someday you can trust God again and know that He dearly loves you. He wants your happiness. He wants your boy to know their dad. He sent them to you to love and help you. I pray that you will feel my love — and dad’s love — and admiration for you as you have bravely, courageously, dutifully, and admirably fought the fight.
You are my hero! Fight on my sweet boy. I love you so much!
P.S. Sorry for my ramblings. I hope you feel my heart.
During Lyme Awareness Month, we’re publishing #LymeLetters written by those affected by Lyme Disease. Be sure to check out the rest of the letters here and to follow us @LymeNow on Facebook and Instagram.