On our search for answers and trying to understand and marry western medicine and holistic practices, I found this 5 rules to live by.
Five Rules to Live By With a Disability by Nicole Small 1. Over my 25 years of surgeries, and in my everyday life, I’ve come to realize that everyone is different. Because you have a somewhat similar situation to someone else, that doesn’t necessarily mean that your journey will be a carbon copy of the other individual’s experiences. 2. Always trust your instincts; you and your child know her body the best, as your child is the only one who has been living in it after all. Take others’ opinions into consideration, but the ultimate decisions you make should be up to you as a parent/caregiver, because you and your child are the ones who have to live with the resulting outcomes. 3. Adapt, adapt and adapt. God blessed you with a child with special needs for a reason, so do not dwell on a certain situation for too long. Remember, “If at first you don’t succeed, try, try, try again.” God wouldn’t have put you in this position if He didn’t think you were up to the challenges you would face with your child. Yes, living with a disability such as Spina Bifida can be a challenge at times, but learning to adapt in our own particular circumstances can make our challenges easier to conquer. 4. Surround yourself and your children with positive people. If people leave your life for a particular reason, then they were not meant to join you on your amazing journey that we call life. You are probably wondering why I said amazing, because amazing and disability do not usually go into the same sentence. The answer can be found in #5. 5. You can CHOOSE to make your child’s life amazing by purposely doing things that suit your child and her situation. People will guide you and your child to do things their way because that’s what they think is best for your child. Be careful who you listen to for advice, and make sure you believe they are the ones who are looking out for your child’s best interests, and really listening to what you think and how you feel. If they are meant to be in your life, they will never leave your side even when you go in a different direction from the one they advised you to take. I am my son’s voice. I am his advocate. It’s a tough job. The hours are long and the pay sucks. It involves hours of research, driving, phone calls, and appointments. I didn’t get two college degrees to be a personal assistant to a one-year-old. However, it’s the best job I’ve ever had. My boss and the rewards are amazing. I’m great at my job because I have to be; the consequences are too great if I’m not.
ON POINT Nicole. Well said. Thank you for the reminder that at the end of the day, we are trying to find the best quality of life for Robbie. Making sure the decisions we make along the way and those coming up are in the best interest of Robbie.
Others might not agree with the practices or treatments we might choose to take, and that's okay.
Like my husband said; "we need to explore all options, western medicine and holistic practices, maybe then we will find a middle and find answers for bro bro."
