You have always wanted to be an artist and it is finally happening for you! You just laid out your best construction paper. You have a picture in mind. You are inspired. You pull out your brand new box of colored markers. You are ready to begin.
Imagine your surprise when you find that your box of markers is missing the two colors that you use the most. Colors that most people would say are essential. Dig deeper into your imagination and imagine a world where you only get ONE box of markers. There are no exchanges. Actually, you are so attached to this box of markers that you would never ever think of trying to return it anyway. You will have to work with what you have. This box of markers may not be perfect, but it is YOUR box.
This is how it felt the first time I realized my daughter, Dinah, had missed a developmental milestone. She was one years old and had not ever rolled or crawled. Actually 1 years old was around the time she first started to hold her head up on her own. She hit two years old and not only had she never walked, but she also could not talk. We were missing some major markers.
Let me cue you in on the back story. Dinah was born when I was 24 weeks pregnant. This was completely unexpected. I woke up that morning with severe abdominal pain. I kept trying to rationalize that maybe it was Braxton hicks or just normal growing pains. Not even an hour later, the pain became unbearable. I felt like someone was squeezing my pelvic region with thousands of pounds of pressure. I was taken by ambulance to the emergency department of Botsford Hospital in Farmington Hills, Michigan. I felt like I was in a complete daze. Several things were done to try to stop the progression of my labor. However, Dinah’s tiny foot found hanging out of my cervix meant that an emergency C-section had to be done. Preemie Dinah was 1 lb and 14 oz. A ventilator breathed for her. Lines going into her tiny fragile veins supported her immature system. The neonatologists at the University of Michigan NICU gave us no hope. We signed DNR (do not resuscitate) papers meaning that if Dinah started to die the doctors would not attempt to bring her back. We came in the next day and retracted them. After all, she was OUR child.
Dinah is now 7 years old and the apple of our eye. Doctors told us she would not make it past 2 weeks old. She does not walk or talk, but we have learned by trail and error to live in gratitude and happiness despite her disabilities. We have learned (……and are still learning) to use the markers she does have to create stunning pictures.
Yeah, parenting is hard in any situation. Having a full box of markers does not mean that creating beautiful pictures will be easier. It does not ensure perfect pictures either.
Parenting a child with special needs can add many layers to the complexity and difficulty of parenting (rather it be financially, emotionally, mentally, etc). It means mixing the colors of the markers you do have to create the best pictures possible everyday.