Ecclesiastes tells us that “the day you die is better than the day you are born” (Eccles. 7:1). But you know, reading this and accepting it is worlds away from reading this and believing it. To let God's word sink in, simmer, steep, and transform you is something that, I am learning, can only come from both experience and desire to love. It cannot be achieved one without the other. Just as the Bible tells us that “Sorrow is better than laughter, for sadness has a refining influence on us.” (Eccles. 7:3) No matter how much I want to understand a life experience of another so that I can be a better friend, I will never truly get it if I have not gone through it. It is exactly why, I believe, Jesus walked this earth. To show us the way. To know better the human experience, and to relate better with his children. He wanted to love us even more infinitely than He already did, so he gave us His Son, so that He could live among us and intercede on our behalf. To love my friends and be a support to them I can read their blogs and talk to them on the phone, I can hold them as they cry and I can listen as they share. But no amount of love will actually put me in their shoes unless I too have been where they are. And for that I am truly grateful that I have had so many trials in my life. It is through these trials that I have been given the charge to share my experiences, my testimony if you will, on what God is doing in my life.
It is because of these trials that I am able to be who God wants me to be.
Today was a day of importance in my life and the life of my children for several reasons. Today was an anniversary, it was a day of mourning and celebration, and it was a day of learning and grace.
You see one year ago today a very special little girl went to heaven to be with Jesus. Her name is Ellie-Kate. I had the pleasure of knowing her for two years of her life. Yet in those two years she welcomed me into a community so rich in love that without it I would not be who I am today. Her mama is a co-founder of the support group that I am part of called HopeLink. HopeLink is a group that was created for mothers who have children with rare or undiagnosed medical conditions. It was created to provide a place of acceptance, fellowship, encouragement, wisdom, and love. Through HopeLink I have met many very special children, some really awe-inspiring moms, and have been given a safety net to get me through some of the loneliest times of my life. Today was the first anniversary of Ellie-Kate's new birth into her heavenly body with Jesus.
Today was also the day that my best friend whom I consider my sister had to lay her precious newborn to rest. Gabriella Faith lived for 72 minutes and yet taught countless people what faith really means. In a nation where the lives of unborn babies are not protected Gabriella's life could have been made meaningless or called a mistake or a defect. She could have been aborted at any point of her time in her mothers womb. However, her parents chose to respect her life and allow her to live as long as she was able. They gave birth to her knowing that exencephaly meant that she would not have a skull covering the top portion of her head. This meant that the amniotic fluid would cause her brain to deteriorate. She would have to be born by c-section if there was going to be any chance of surviving the birthing process and so her mother, who has given birth naturally to three boys, opted for the c-section so that she could protect her daughter as much as she possibly could. I was blessed to be there when Gabriella was born on December 15th 2013 and when she died 72 minutes later. And I will forever be grateful for getting to see such a peaceful, beautiful child enter this world and make such a gigantic impact reaching over 200,000 people in the few hours that she was born. She gave her organs for research and her life to raise awareness and to show God's love and sovereignty! Today was a day to mourn and celebrate her life.
Today was also the first day that I would be hurt by the words of one of my children. I am not going to name names because I do not want to hurt the feelings of a person that I love with all of my being, but the story must be shared and the child whom I am speaking of wants me to share this too. You see, this child is now on a mission to teach his friends what they learned from this experience. So for ease I will write "he" but that is not saying that it was my son or my daughter who shared this experience with me today.
While we were at Gabriella's wake my kids and my sister-friends kids were playing and loving on each other and naturally I wanted to get some pictures. Some playful banter was exchanged with some of the older children and one of my own said "that's retarded" about something silly that someone else had done. When the word came out of his mouth I had one of those moments like the mother in that dreadful Christmas Story movie. My entire demeanor transformed as the ice of that word struck my heart. "What did you say?" Nothing, was his dismissive and yet shocked by my tone, reply. "No, WHAT did you say?" He then repeated what he had said and I asked him to leave the church dining hall and wait at the front of the church for us. We were leaving anyway and I honestly couldn't talk to him until the shock had subsided a bit.
"How could one of my own children say that word" "Does he not know what it means" "Have I never told him this?" "Isn't it obviously mean?" "Have I let him watch something or listen to something or read something that would flippantly use this word?" All of the questions of self doubt came pouring out as I thought about how this child that loves others so much, say something that is so cruel….
When we got to the car it was obvious that we had never had this talk. It isn't like I just sit down with my kids and say "here is a list of words that are despicable and you must never use them." We asked him what he thought it meant, then we made an announcement to all the children that we never want to hear that word again. I figured that with this visceral of a reaction I should probably make it a "commandment" so to speak. We stopped to get gas and used that time to talk to him out of the ear shot of other kiddos. We explained that several years ago Avagrace had gotten so bad from her constant seizure activity that she was unable to feed herself, talk, or walk without assistance and help moving her legs. We explained that we got the diagnosis of mental retardation and how just hearing that word being used flippantly encourages the world to think of people who are differently abled or special needs-as less than, damaged, stunted, slow, and so much more. We reminded him of the time that Avagrace had to have shots twice a day. He remembered. We told him that those shots were a medicine called ACTH. It was an experimental medicine but it worked for Avagrace at the time. It healed portions of her brain and it brought her back to us. But it didn't stop her seizures forever and it didn't fix everything. Avagrace is still mildly mentally retarded. However, just because she doesn't always know what we are talking about and just because she can't always think of the words she is trying to say…well it doesn't mean that she is any less awesome, smart, strong, or worthy of respect than anyone else. With tears shed, genuine remorse, and explanations shared today was a day for learning and grace.
I received a message from a "friend" from high school on the day that Gabriella was born. They told me that they were "un-friending" me because I was depressing and obsessed with talking about sick kids and death. They said that I should stop seeking out all of the "freaks" and that I should stop sharing our story because people want to hear the good news, see the happy pictures, and strive for the "perfect" American dream.
While their words hurt and angered me at first (I am human and I am very protective of my loved ones) I honestly just felt really sorry for this person. I thought of how rich I am and how blessed I have been because I have learned some of the greatest lessons in love and life by opening myself up and sharing our "wonderfully made life." (A very fitting quote from the Bible and brought to my attention from my friend Ryan aka Ellie-Kate's mom). To be a special needs mom is to throw all expectations, all lists, all plans out the window and to embrace life that is not familiar, is not taught, is not planned for, and never expected. It is out of the ordinary. It keeps you on your toes. It hurts. It heals. But most importantly it helps you to be thankful for every moment that you have because life is now.