Kai peeking out after bath time!
Bei made my name tag for above my coat hook from sparkles and glue!
I would like to take each of you on a little journey with me so that you can get an inside peek into the world of parenting a child with special needs.
Close your eyes and go back to that day that you gave birth to your first, second or third child. Remember all the hopes and dreams you had for that beautiful little one. You are anxiously awaiting to see your child and are wondering why the doctors not handing him to you. When she walks up to you and says, “I’m sorry but your baby has dwarfism…or has spina bifida…or born without their arm.
You have officially been inducted into a new club; the Special Needs Mom’s Club. Having a child with special needs puts you into a unique category of parenting. Life as you knew it only moments before has changed forever. At the time, you don’t understand the many blessings that this journey is going to give back to you. You are cast into this unknown world and expected to navigate it, yet nobody hands you the manual stating what the next day is going to bring, who are the best specialist, therapist, doctors, or what the 5 next best steps to take for your child are. In your newly found fog, you know that you need to move forward so you start putting one foot in front of another and you start making your way. I call this survival mode, it doesn’t look pretty but you are moving forward, you just don’t know what you are moving towards. You will be introduced to the medical, insurance, therapy and pharmacy fields in intimate ways. You will be able to explain better to the medical billing person the error of the medical bill because you will become an expert of your medical coverage. You will have stops and starts, good days and bad days, and eventually, the fogs lifts and you realize that you are living your “new normal”. You will be living your new normal for a while when all of sudden the rug is pulled out from under you…perhaps it is a new diagnosis, education needs or on-going medical issues. You realize that as high as you have climbed on the mountain you have not even reached base camp yet. However, the climbing has become easier as you continue up the mountain because you’ve learned quickly how to navigate the terrain and are more physically and emotionally equipped.
There will be waves of doubt that wash over you and keep you awake at night about the decisions you are making for your child with needs. You question if you are doing everything within your power to ensure your child’s success Are there treatment or therapy’s out there that would change the course of your child’s life? For those of us with children with unknown reasons for their medical condition our minds can take us to really awful places. Is it undetected deteriorating brain disease causing my child’s in-balance and instability? You worry about your other children, are you meeting their needs? Are they receiving enough attention? You become scared for your child. We all see the evil in this world on our nightly news and you wonder how can you protect your child from the predators that want to prey on the vulnerable. You worry about who will watch over your adult child when you die and keep him safe. You even wonder how to teach your child about following Christ when he lacks the comprehension skills to understand words, like faith, belief and even who God is.
For most parents with special needs children you don’t have a huge social life. Your life consists of medical and therapy appointments. You are too exhausted to socialize in the evening and finding a person qualified to take care of your child takes a lot of work. You can’t leave your special needs child with the teenager living next door. There are people that might not want to be your friend because of your child’s special needs. Your child might lack social skills or may drool or act inappropriately and sometimes different is uncomfortable enough for some people and they don’t know how to be around you and your child.
Those are some of the hard cold facts, but there is an entirely other side to having a child with special needs. When your life is turned on its head you find out very quickly what is important and what is not important. If you didn’t have a relationship with God prior to your child be diagnosed you probably will develop one extremely quickly. You realize what an enormous responsibility has been given to you, but in time you see the many blessings along the way. The things that other people take for granted are huge victories in your life. The ability for your child to sit up, to point his finger, to suck out of a straw, to blow out a candle are all met with huge praise and many times tears of joy. You learn to laugh and not to take life so seriously, because our time is short here on earth, let’s enjoy it even when we are weary and tired. You are going to be challenged beyond anything you have ever experienced. You will learn that you have more patience, tenacity, grace, fierceness and love than you could ever imagine. You will meet people that you would have never had the opportunity to meet if your child didn’t have special needs. You admire the courage and tenacity of parents with kids who have much more severe special needs than your child. You will instantly be bonded to other moms regardless of their child’s special need. There is a spectrum of needs and parenting certain special needs are harder than others. But in the end we are all walking a similar path. Some just get to use a scooter while others have to walk the journey.
I hope you enjoyed your little journey into the world of parenting a child with special needs. This is my perspective and more than likely another parent would have a different perspective. Parenting both Bei and Kai has been a joy. I am honored that I have been entrusted with two precious little beings both made in the likeness of God. They have transformed my life in such positive ways.