I've been really neglectful of my blog and while my dear readers, all 3 of you, may have given up on me, I've realized that I need this. Getting my clunky thoughts out is therapeutic for me. Here we go.
Squish turned a year old already. I don't know where the time went. I picked up a tiny baby, held him close to me, and when I went to put him down he had 6 teeth and liked to smack my boobs. He is a gibber-jabbering hedonist who loves to cuddle. He can get from the bathroom to the kitchen dog door in less than 20 seconds, little tushie swinging with the effort of his all fours crawl. He's gorgeous. He's sweet. He's kinda whiny and clingy. I love him.
Watching him learn and grow has been wonderful. Getting through the hospital stays, the CT scans, the UTI's, the surgeries, and that sort of thing has been crappy. He was a vomit fountain for about 4 months with reflux. I may as well have been doing laundry for a small hotel. Through it all, he's kept his easy going demeanor. I wish I were as laid back as Kemper. In the face of all adversity he's had, he meets it with a smile and just won't give up. Much like the boob smacking. I can stop him and say no all day long, he just grins at me and smack, smack, smacks.
There are a lot of people I couldn't have made it through the year without. There's no way I can properly show my appreciation to them. So, I'm using this blog post to repeat some of the best advice I've gotten through the year and give some of my own to people who may be in the same spot I was last year this time.
Great Advice: (As I see it.)
Have a support system. Yeah yeah, everyone says that. It's true, you need it. But you need people who are familiar with Spina Bifida. So, if no groups are available locally, go to the internet. It could take almost a year to weed out the people that you ONLY have SB in common with and make some friends. I'm so glad I did. I have some true homies. There are groups on babycenter and facebook for Spina Bifida. Hell, I even run an SB group on facebook!
I'm telling you it's the friends you make that will be your rock. Sure your family means well, sure your friends are supportive, but these people know what you're going through. They've been there and most of them are willing to offer advice and support.
Do not let a digitized ribbon confuse your heart. I know lots of people that I didn't know before I had a baby. Many of them are new moms like me. Many others are people I met through SB resources. Some of them are just ridiculous people with nothing to contribute but sucking the very life out of you. Don't let them. Come SB awareness month when they plaster their facebook with ribbons, don't feel like you owe them something. You don't.
Don't let this change who you are! Your child needs you to be you. Don't go changing because you think you have to in order to be a great parent. A great parent is made by someone who is secure in who they are. Also, you can't live wallowing in "why me" or "my child can't..." Keep living like you did before, enjoy life so your child can too. A miserable parent makes for a miserable child.
Trust your instincts. Yeah, the doctor at your pediatrician's office has a degree. Yes, you should trust him on lots of things. But when it comes to Spina Bifida stuff, call the neurologist, urology, ortho department familiar with your child's care! Remember that you know your child better than the doctor who sees him for 20 minutes every so often.
Your spouse is not you. Sounds simple, but it's all too easy to forget. I was diving headfirst into research, books, scientific data, joining groups online, trying to reach out to local people. My husband mostly relied on the doctors and me for information. At first it upset me, but I realized that he deals with things differently than I do. He was willing to take the information as it came. I wanted to know everything NOW!
Therapy is OK. I'm in therapy. In the same vein as my need to have all the information lined up for me, I hate surprises, and I have an anxiety... problem. Because I'm high strung and a little scary sometimes. So, therapy is a great idea for me.
Know your insurance. Seriously. Stay on top of it. There's a million and one things you have to do every day, I know. But every dime counts. Don't let a misfiled form or something take money away from your family.
Use a beach towel. If your kid spews like a geyser... screw the burp cloths, move up to beach towels.
Alright. My little bag of wisdom is just about empty. Just remember above all else, your baby is just that, your baby. No matter what challenges lay ahead of you. You can do this because you really have no alternatives. You'll rise to meet whatever comes up and if you're lucky, you'll make some damn fine friends along the way.