The sweet infant that you swaddled in warm baby blankets and held in your arms, promising to keep him safe forever is now growing up. Independence is rearing its ugly head. But your child is a special child with chronic and painful illnesses, and you are a special mother reading about every diagnosis, spending nights in the Emergency Room, and driving to each specialist’s appointment, plus so much more.
She wants to go to a sleepover with her friends. He wants to run a relay race for the third grade Olympics games. Thoughts of the many things that could go wrong are swimming through your mind. Fear takes over. Fear is normal. You live with it every day questioning whether you are doing everything right. What if he has an emergency at school, and the worst fear of all, how much time do we have together? It is in these moments that you reach with all of your strength to conquer that fear with your mother’s love for her child. Stay in the present and make your decisions carefully.
Remember that your precious child has a host of limitations to what he/she can or cannot do that other children take for granted, and feels that she doesn’t fit in with the others at school. Children with chronic illnesses feel that their entire life is overshadowed by all of their health problems, leaving them without any control over their lives.
The first thing you should do is to plan for the slumber party, the new sport they want to try, or a trip with the school. Make sure there is enough medicine for the time they will be gone. Have a note from the doctor explaining your child’s health problems, dietary needs and what is necessary in an emergency along with his contact number. Check their machines, such as breathing machine, to be certain that it is in good repair and with plenty of medication. You will need a letter of permission for the adult(s) in charge to make decisions in your absence with all of your contact information. You are the mother. You know your child better than anyone. Trust your instincts.
Patty’s son, Alex, was born with many chronic illnesses and she was sure that her years of medical experience as a Registered Nurse and Physician’s Assistant would have prepared her for the fight of his life. Unfortunately, navigating a crippled healthcare system she discovered that ill children do not always receive the care that they deserve. Alex bravely suffered through years of delays, misdiagnoses and false hopes until he lost his long battle. It became Patty’s mission in life to see changes made for children facing serious illness and their families. She founded Making Change For Children to bring about awareness of the obstacles in our healthcare system, while advocating for more effective policies to better care for children with complex and chronic illnesses.