So if you've looked at my Facebook page any time lately, you know August is SMA Awareness Month. SMA, SMA, SMA. Most of the time it consumes my time, energy, thoughts, actions, and I hate it, hate it, hate it. I'd give anything if it didn't exist. The day we received Colby's diagnosis, just like a snap of a finger, our lives completely changed forever. Colby was diagnosed when he was 4 months old, so we've been up against this God-awful disorder for almost 9 years. Allow me to share some experiences with you...
I've watched Colby's body get weaker over time. His overall muscle movement has lessened. He can't even turn his head to the other side by himself. His hands don't grip as tight as they used to. Some days he fights for every breath he takes. I've never heard him say the word "Mama" or any other word as far as that goes. He struggles to communicate his needs. Colby will never take his first steps or ride a bike. Colby has had so many hospitalizations I've lost count. He's had RSV, pneumonia, collapsed lungs, pseudomonas and coded twice. I've watched his body turn gray and go limp when he stopped breathing and his heart stopped pumping. I have no doubt Colby has looked death right in the eye and said, "Screw this, I'm goin' back to my mama, and Spongebob!" Colby gets cough treatments every morning, afternoon and evening. He eats through a g-tube. I have no idea if my kid would like pizza or broccoli or what his favorite flavor of ice cream would be. So yeah, SMA sucks, BIG TIME. I hate it, hate it, hate it.
But believe it or not, now I'm actually going to say some good things about SMA. You read correctly. Shocking I know, but I was raised to be a "glass half full" kind of gal, so here it goes. First of all, I realize every day I have with Colby is a blessing. If he chokes in the middle of Kohl's, doesn't try at his eye gaze or isn't able to sit up for more than 15 minutes, it doesn't matter. Colby has lived 7 years past his expectancy and for that, I'm extremely thankful. So many SMA families have had to say goodbye to their children way too soon. I don't ever take Colby's survival for granted. So it's kinda like that saying "a bad day fishing is better than a good day of work." Same goes for SMA. Through all the struggles and all the unknowns, it sure beats not having him around. Every time I look at his sweet face the worry and stress just floats away.
Next, not only has Colby survived, he has thrived and has done some pretty amazing things in his lifetime. I'm damn proud of that. At times it's been a challenge, but somehow we manage. Takes an extra set of hands and a wagon full of equipment, but it's always worth it. He's gone to school, rode the school bus, gone on field trips, gone camping, saw the ocean and stuck his chunky toes in the sand, rode a horse, went to Magic Kingdom, the zoo, the aquarium, Sea World, church services, movies, plays, SMA camp, family reunions, holiday parties, Thunder Over Louisville and other places I just can't remember at the moment. Surely Colby knows how much he's loved, or at least I hope he does. I mean come on, who else has 75 people at their birthday party?! Colby is constantly surrounded by those who accept him, love him and help him to achieve all he's capable of achieving. Can't ask for much more than that.
Last but not least, I've seen unending love, generosity and support from our family and friends as we continue Colby's SMA journey. I don't even know where to start with this one. My parents are the BEST. They would do, and have done, anything they can to make our lives easier and happier. Colby and I never go to a dr. appt without my parents going with us. They run errands when I can't get out. When Colby is in the hospital, they never leave our side. They bring me leftovers or throw me a Kroger gift card every now and then. They help me keep the laundry up because Colby is a little laundry-making machine. They help watch Colby when I don't have a sitter. I don't know where we'd be without them. My friends have been by my side through thick and thin. They've listened to me bitch, cry, scream. They've paid for girls' night out when I couldn't afford it. They've come to the apartment to hang out when I couldn't get a sitter. They've come to the hospital when Colby is sick. They've helped me take Colby places. They've helped raise funds for SMA research and for us to make a house accessible. I know there are people who pray for us every day. I'm very blessed for the wonderful, kind, loving people in my life. I'm also thankful for my SMA "family." I hate that we had to meet by our kids having such a sucky disorder, but so very glad to know others who can talk my talk and totally understand what it's like to raise an SMA child.
So there you have it. People ask me all the time how I do it, how I raise Colby by myself. The answer is simple: the 4 F's. Focus in what needs to be done and what's important in life; Faith in God that he has a plan for Colby and me, even though at times I have no freakin' idea what that plan might be; Friends who are helpful, kind, fun and supportive; Family that has stuck with us through it all, the good days, the really good days, the bad days and the worst of days. Oh, and vodka helps, too. Lots and lots of vodka. Night folks!
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