(The following is a reflective letter a Christian mother and long-time GCI member addressed to her son after his decease. He had battled epilepsy all his life in a way that inspired all who knew him – names have been changed. —Ed.)
Dear Ryan, my dearest son, my firstborn,
Today I miss you so much!
I did not expect you to go away at this time to be with God. But I thank you for being my son for 41 years and teaching me to become a stronger person than I would have been had you not been there.
Thank you for always showing your abiding faith in God to watch over you and protect you wherever you went. God acknowledged your faith in him and he always did keep you safe and protected you. As my little baby boy you were born with a disorder of your brain which caused you to have seizures. You passed away because of a condition called SUDEP – “Sudden Unexpected Death in Epilepsy.”
When you were a little child the seizures started out small but grew worse as you got older. Together we went through many days, nights, years of sometimes horror and tears – visits to the ER and hospital stays. Despite it all I never never would have forsaken you. I am thankful instead for all the good times and years you did have. God has been very merciful to you and to the rest of the family. So many times God had me there to help you when you began to fall as a seizure was coming on. You were heavy to handle but God gave me the strength to keep you from being severely injured.
It was a difficult task and sometimes my back hurt later, but I always thought you were worth it!
Looking back over the years, after we had come through some severe seizures – after the “storm” had calmed – we had a quiet peace. You endured a lot but you never complained – neither one of us complained. We had many doctor visits but we did not complain because God helped us to accept what we could not change! I knew you were worth helping when you could not help yourself! I knew you were worth being heard when you had something to say! I always thought you were worth being treated well – and so I always treated you well. I always thought you were worth being included and so I included you in whatever. In these ways I relayed to you that you were worth it!
Sometimes maybe I was overly concerned about you but as you got older and the seizures became a little less frequent I realized that I needed to allow you to go places that you thought you could go to and get back successfully. You had a strong faith in God and you would tell me not to worry. You always made sure you had an offering to give whenever we went to church. Sometimes you would give to people on the street. To people who asked for a “little change” you gave one dollar bill!
You inspired me to read my Bible and my church literature when I saw you reading. And I would say to you, “Thank you for inspiring me to read.”
You were a good son.
There were times when I seemed so right in something I said, but later, when I thought about it again I didn’t seems so right. I needed to listen more closely to what YOU were saying. Then I understood and as a result of this approach you became less upset.
I’m glad that you were a good worker at your “workshop.” Not too long ago you learned how to do a new job. For some time now you have been able to ride the buses – go places on your own – challenge yourself – go to the stores and buy what you want. You wanted to walk far! God always brought you back safely.
I would always be concerned for your safety but I had to learn to let you go out the door with my blessing and support and you with your cell phone. Faith and works!
I think one of the most scary and difficult times for me was when you got lost at night in an area that had few street lights on the outskirts of Hemet. You got off the bus at the wrong stop. You could not see very well where you were going. You ended up in a darkened residential area. As we talked on the phone I could hear dogs barking in the distance. I was afraid. You tried to describe where you were but it was so very scary.
Your sister and I prayed and prayed that we would find you. Finally you said you were somewhere near Highway 74, the very road we were driving on. We turned around and came back toward Perris, slowing down just before the exit to your workshop. It was so dark. We looked closely on the right side of the highway and suddenly we saw you – standing on the side of the highway where we were. Thanks be to God. We went through a lot of stress that night but we thought you were worth finding and you were!
I always said, As long as I live I would do all I could to help you!
I would not forsake you in large part because of all the hardship we had gone through. Those trials together forged a deep deep bond. So I realized it would only be through DEATH that we would be parted!
Recently I said to your sister, “Ryan has left me. He crossed over! No more seizures, no more meds, no more feeling down, no more sadness!” I said this with all kinds of mixed feelings…then I cried.
I reread this poem on the back of your funeral bulletin. It’s called “I’m Free!” One line reads: “My life’s been full, I savored much/Good friends, good times, a loved one's touch.”
It reads so much like you are telling this to me and the rest of the family. I understand it but I cry when I’m reading it. I so miss you not being here. I never told you this before but I always prayed inside asking God to not let me die before you. And you know, about two days before you passed away I allowed myself for the first time I can remember to say out loud where I could hear myself say it: “Oh God, please don’t let me die before Ryan.”
I suppose I just did not want to leave you behind not knowing what would happen to you. I’m going to grieve for some time, but I plan to carry on the way you would want me to. I know now that you are totally and completely all right because the Book says, “Blessed are the dead who die in the Lord from now on.” “Yes,” says the Spirit, “they will rest from their labor for their deeds will follow them” (Revelation 14:13).
God is so merciful. He did not allow you to go out in a hail of distressing seizures – the way we may have feared because of your history. God decided not to allow you to be hospitalized, on life support or in a coma like you were at age 15 – for 30 long days!
He let you go out with a gentle smile on your face. I am so thankful – surely, the righteous has hope in his death.
Just before this happened – around mid-November last year – you decided that you wanted to go to the store at night. I did not think that was a good idea and I insisted that you should go to the store before it got dark. You strongly disagreed. I held my ground for one week. Then, later, the thought occurred to me that I should support what you felt that you needed to do.
You needed to challenge yourself – you were not afraid. I should have let you go.
So I came to you and said: “Ryan, I changed my mind about insisting you not go to the store at night. I’m not too pleased with it but I’m going to support you in what you want to do now. So just let me know when you’re leaving and take your cell phone with you.”
Then I asked: “Do you like this decision better?”
A very pleased expression came over your face and you answered, “Yes!”
Now I am so glad that I let you go, allowed you to feel the freedom you wanted to feel walking to the store at night, for a change, feeling responsible – feeling that you could do some things like other adults your age. I finally learned the lesson you and God were teaching me: You were not afraid because you were always trusting God to protect you.
I am so glad I allowed you to be free at that time, at a time when it was so important to you. Little did I know that three days later God would call you to be with him. There will be no more seizures, no more limitations, for the gentle Lamb of God himself has you by the hand and is leading you to streams of living waters (Revelation 7:17).
You – my son – are now totally FREE!