I find myself, lately, with the ache of the reality of what surrounds our family. Literally, my heart physically hurts. There are moments when I see myself going about my day. Then, all of the sudden, tears begin to flow freely. I am not in control of this onset of emotions, sadly. If I were in control, I’d stifle those suckers in an instant. It is uncontrollable and unexpected. I do not enjoy these moments.
Hunter is better, for the most part. He is still walking, most days. There are some foods that Hunter can feed by himself. There are days when he can hold a pencil (with assistance). On a good day, Hunter can sit on the potty (almost by himself). All of these things, he can do part ways. Also, there are things he can do, all the way, occasionally. Every day is a day and every day is different. I never know what to expect day in and day out.
What spurred these emotions on was sorting through my external hard drive, one day. I was organizing the 10s of thousands of pictures that I have had since 1994. As I was looking through my photos/videos of 2015 and 2016, I began to feel a heaviness. See, in November 2015, Hunter moved in with our family.
He was “normal” that morning, on June 6, 2017. Then, after lunch, he took a nap and our lives forever changed. I can remember calling my sister (his Mamaw) and saying “Kim, there is something wrong with the baby, he can’t walk. We are headed to the ER.” She met us there. From that moment on, it was a whirlwind for the next 2 weeks. I had almost 2 years of him being a healthy, typical, little boy.
Those healthy days, I don’t remember. How sad is that? He does not remember it either, that is even sadder to me. This realization cuts me to the core because I do not know what our future holds, on the flip side, I do know Who holds his future. It can be so scary to even think about. Will he ever walk without assistance? Will he ever feed himself? Dress? Do schoolwork? Go to college? Have a family? Hold a job? I know, I know, he is only 4.5 years old…but time marches on, now doesn’t it.
I find myself questioning God and the why’s of it all. Hunter had already endured *so* much in his little life before he came to us. He saw so much hurt, pain, violence, neglect and now this. Why can’t he just be? Why can’t he just live a normal life? What more does this baby have to go through?
Then, I hear this one question rolling through my mind, like on a carousel.
“If I never heal him, this side of heaven…will you still love me?”
That question is so easy, yet so hard. It is easy because, of course, I will still love Him. He is my Savior and my foundation. The knowledge that He is my Alpha and Omega is overwhelming. I want my son to be healed, this side of heaven and to be okay. I desire to see him have a full, healthy future. Reality is, is I don’t know what his future holds, and it makes me angry.
Anger is secondary to fear and sadness. I fear that I will lose my son. There is fear of people making fun of him, him getting hurt, or having to go back to the hospital. I am sad because there is no treatment. There is no medication, no protocol, no help, or knowledge available. Fear and sadness could overwhelm me if I allowed it too. In having a propensity to depression, I have to be so mindful of my mental state in all of this.
I’ve been super angry with Jesus, through all of this. The love for Him has not changed, but I am mad (remember, fear/sadness). Last night, we had a meeting…Jesus and me. This meeting happened after Big Daddy prayed over me and I was fixing to go to bed. There was a lot of yelling going on, mainly (entirely) by me because I had to get this all out.
When I came out of the bathroom, I saw my very still son, sleeping peacefully. I sat by his bed and held his little hand. There were no words spoken and no thoughts in my head. I just sat there in silence staring at him, holding his hand.
The Floodgates Opened
There was so much that was said, so many tears that fell, and finally…peace. I can officially say, not just with head knowledge but with heart knowledge, that I will still love my Jesus. Hunter, just being alive, has brought together our family in a way I never dreamed it would come together. Our tribe has come together and rallied.
There is a relationship between my brother and me. That never existed before. The love my brother has shown my baby is mind-blowing. My sister and I function as a unit instead of separately. That began before Hunter even moved in with us, but has grown stronger by the day. My other sister has faithfully helped through providing pull-ups to being a massive prayer warrior. My parents…I can’t even. The support and love that has been shown effects every fiber of my being.
Hunter has shown people perseverance in the face of pain and uncertainty. When he smiles after IVs, chemo, IVIG, ACTH shots, after traveling for hours/days, and extended hospital stays, it melts your heart. There may be a moment when he cries but then he tells whomever “thank you.” Amazingly, he has shown grace through his misdiagnosis’ and he has shown tenacity in his ability to compensate for his deficits.
It has been prophesied over me, my family, Hunter’s healing. I have learned that, in Christ, Hunter is completely healed. The power of my words and the words that surround Hunter are just that…powerful. I can hear the medical truth, yet still know that he is healed. The Holy Spirit, in me, allows me to pray and thank God for the healing He has already done for Hunter. HOPE is the key word in our journey. I have HOPE in the circumstances that we are going through. This HOPE can only be found in the arms of my Jesus.
I’m thankful for the people that speak that healing into existence. That healing is Truth from the Almighty. They remind me of what the Lord has shown them and they tell me. These are the words that I need to hear because they come when I feel like hope is dwindling.
As we were snuggling in bed, last night, I asked him if he was going to be better. I didn’t allude to his illness or anything else. I thought he would respond according to his behavior because it has been less than stellar. He looked up to me and said “Yes.” He said, “I’m going to stop shaking.”
Hunter has hope. Therefore, I have hope. We know Whom our HOPE is built on.
My Hope is Built on Nothing Less
My hope is built on nothing less Than Jesus’ blood and righteousness; I dare not trust the sweetest frame, But wholly lean on Jesus’ name. On Christ, the solid Rock, I stand; All other ground is sinking sand.
When darkness veils His lovely face, I rest on His unchanging grace; In every high and stormy gale My anchor holds within the veil. On Christ, the solid Rock, I stand; All other ground is sinking sand.
His oath, His covenant, and blood Support me in the whelming flood; When every earthly prop gives way, He then is all my Hope and Stay. On Christ, the solid Rock, I stand; All other ground is sinking sand.
When He shall come with trumpet sound, Oh, may I then in Him be found, Clothed in His righteousness alone, Faultless to stand before the throne! On Christ, the solid Rock, I stand; All other ground is sinking sand.
This is my journey of faith, adoption, cooking, and living life to the fullest. It also documents our journey with our son who was diagnosed with Opsoclonus Myoclonus Syndrome. Welcome to my corner of the world.
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