5. A Good Video Monitor: If you have a child with special needs, they will most likely come with accessories. Whether it be a heart monitor, a pulse oximeter, feeding pump, etc., you want to be able to keep an eye on said child to make sure he/she hasn’t gotten tangled up in a cord or pulled something loose. Before I had a video monitor, I was getting up out of bed every few hours to check on Wendy. Now, I simply turn over and check my monitor.
4. Organization: This comes into play with many different aspects of Wendy’s life. I have all of her supplies in her closet in drawers that are labeled. When you need a new button or a colostomy bag, the last thing you have time for is to search for something. Also, I make all of Wendy’s food for the day every afternoon. I measure it out and put it in separate bottles in the refrigerator- that way when I have to get up at 3am to add more food, I don’t have to mix a bottle or measure it out.
3. Extras: You should never leave the house without extras. I will forget to bring diapers before I forget to bring an extra button, an extra colostomy bag, and an extra feeding pump bag. The difference in being prepared and not could mean an unneeded trip to the ER. If Wendy’s button comes out and I don’t have an extra, I’d have to take her to the nearest ER to get something put in ASAP. Also, number 4 applies to having extras. Make sure the diaper bag is super organized so you can get to what you need, when you need it.
2. Patience: There will be days when you want to scream at the top of your lungs and pull your hair out! But you can’t. You have to keep it together. That’s where patience comes in. Most days are hard. Some days are harder than others, but no matter what that’s still your child and you still have to take care of them. There are days that Wendy’s colostomy bag refuses to stay on. I’ve been through 5+ bags in one day! Wendy has ripped her button out on several occasions. On those days, I have to take a deep breath and get on with it.
1. Motherly Instincts: This may seem like a silly one, but to me, it’s the most important. I am Wendy’s voice. I am her only voice. And if I don’t think something is right I have to speak up, whether that be to an insurance company, a doctor, or whomever. Wendy is my child, and it’s my responsibility as her mother to be her advocate. If I think she is having a lot of reflux one day, I can up her dose of Pepcid. If I want a second opinion because I didn’t get the answers I wanted, I will take her to another doctor. Wendy’s pediatrician has always told me to use my instincts in raising Wendy because “mother knows best”.
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