Today I'm feeling a bit "sappy." I don't really know the definition of that word, but I'm using it this way - a bit sad, but mostly happy. So bear with me while I try to explain. (and just a warning, I may ramble my way through this post).
When Charleston was first diagnosed, I went through so many emotions, and I've talked about them previously. Shock, ANGER, sadness, ANGER, wonder, ANGER, fear, ANGER, hopelessness, ANGER. What a journey I've been on.
Shock? WHAT is SMA, and why does my grandson have to have it?
Sadness? Oh my gosh, unbelievable sadness that is still in my heart. This is a sad, sad disease.
Wonder? What is this going to be like - what do we have ahead of us? How long do we get to keep him? Why did this have to happen to my daughter?
Fear? According to the doctors, he was supposed to pass away very quickly. So I lived in fear every moment I was with him, every moment I was away from him, every night when I went to bed, every morning when I woke up, every time the phone rang. At night, when I got home from helping Ashley, I would take a hot shower and sob. Huge, giant, horrific sobs. I was alone, and I could do it, because nobody would know how weak I was. Especially my daughter. Because I had to be strong for her. But I wasn't. I wanted to die.
Hopelessness? How can you have hope when doctors tell you there is none?
ANGER? You betcha. For all of the above reasons.
And then something interesting happened. Call it a miracle, if you'd like. I certainly do. I accepted. I accepted that my Charleston has SMA. I accepted that God chose my daughter to be his mommy, Cameron to be his daddy, me to be his nana, and BJ & Catie to be his aunt and uncle. God knew what he was doing, I just didn't see it that way then. All part of my journey.
I got answers. Why does my grandson have to have it? Because it makes him who he is. It is not WHAT he is, but it is part of WHO he is. And just a tiny part. Because my Charleston is funny, smart, sweet, loving, cute, demanding of nana rubs, interesting, talkative, and the most perfect child on the planet. And I'm not prejudiced, I'm just stating a fact :). All part of my journey.
As to the sadness, it will never go away. It's just the way it is. But I wouldn't trade this sadness for anything, because it's part of the journey. And I wouldn't trade this journey, because it's made me into the woman I am today. I've said goodbye to family and friends because of my growth through this journey, because I just plain don't have room in my life or heart to be non-supported. It's interesting, when strangers that you've never met in your life are kinder to you than your own family....but it's the way it is sometimes. All part of my journey.
Wondering what is going to happen has been the worst part, I think. Not knowing what is in store for my little family is hard. We don't know what's ahead of us, but if I have it my way, I will be at Charleston's swearing in when he becomes Senator Charleston Sage Goeppert. All part of my journey.
"Fear is the lack of faith" - a member of my family, Nathan Kirkham, had this tattooed on his back prior to his death from a drunk driver. Cameron now has it tattooed on his leg. And what a true statement this is --- and one of Charleston's greatest gifts to me is that he brought me back to God. All part of my journey.
The hopelessness that the doctors instilled in us was just plain MEAN. When the doctors were trying to diagnose Charleston, Ashley and I sat in a hospital waiting room and literally PRAYED that her baby had experienced a stroke in utero. We knew if that was it, he would recover. Can you imagine what that felt like for us? To sit and pray that your baby/grandbaby had a stroke? Like that would be good news? And for me to have this in my memory, sometimes it is just too much for me to think about (like now - this is the "sad" part for me of feeling sappy). It's not fair that the doctors gave us no hope. It's not fair that they said there was nothing that could be done. It's not fair that Ashley, Cameron & I had to sit in a pediatric neurologist's office together and be told to take him home and love him, that he will be gone within months. Because the doctor was wrong. But it's all part of my journey.
The anger has been very hard to deal with. I don't know if it will ever completely go away, but I hope so. I'm not going to lie and say that I'm not angry over this situation, because I am. But for selfish reasons. What am I angry about? I'm angry that my Charleston can't hug me. I'm angry that my daughter has to go on lockdown for 5-6 months every year to keep her baby alive. I'm angry that Cameron & Ashley have to struggle like they do. I'm angry because my son misses his sister. I'm angry because I miss my daughter. I'm angry that part of my family has turned on me because I've finally found the guts to stand up for what I believe in. But I'm not angry that Charleston has SMA. Because without it, I wouldn't have learned the life lessons that I've learned over the last 2 years, 8 months and 26 days. It's all part of my journey.
And now, for the HAPPY part (told you I might ramble.....). My Charleston is AMAZING!!!! I tell everyone that he is the love of my life, but you know........ I haven't met my future grandchildren yet, and I know they'll be the loves of my life right along with him. But MAN do they have big shoes to fill!!!! I enjoy each and every moment I get with him. He is so much more stable than he ever has been since he had his tracheostomy surgery. We get to take him places, and in 13 days he gets to be at his Unkie B & Auntie Catie's wedding!!!!!! We have been practicing dancing :)
Speaking of BJ & Catie's wedding - I CAN'T WAIT!!!!! I am going to cry, cry, cry, and laugh, laugh, laugh. And dance with my Charleston!!!!!
Two weeks ago, the wonderful Volunteer Firefighters in Reno, NV sponsored the 3rd Annual Spaghetti Feed for our little boy!!! And guess what - CHARLESTON GOT TO GO!!!! This group of people are something else. They didn't even know us, but they heard of him and his situation when he was just a few months old, and wanted to do something. Unbelievable.
Life is good with my Charleston. He's taking me on the ride of my life..........teaching me things I didn't know I needed to learn. I am thankful for him and who he is. I am thankful that I get to be his nana. With all the bad that we've been through, he is the good. I wouldn't trade this experience for anything. All part of my journey.
I love you, Charleston.
