I learned a lot about support over the weekend. We held our annual walk to raise money for the Cystic Fibrosis Foundation in hopes of finding a cure for our daughter, Maggie. Our team, Miles for Maggie, showed up ready to go and they had raised over $8,000. It was emotional and heartwarming and I left the walk feeling warm and fuzzy. That’s what a support network of family and friends will do to you. It’s not just about their willingness to raise money, it’s about the effort they put in and the time they give to be there with us and literally walk alongside us on our journey.
Having close family and friends is beneficial to everyone, but for families of children with a special need or chronic illness, that network means a great deal more. Raising a family is a full time job and raising a child with a special need takes even more commitment and passion. Sometimes your emotions get the best of you. Sometimes you have to stay in the hospital with a child. Sometimes the fears surrounding your child’s condition become too overwhelming. Sometimes you just need a break, but you can’t call on your 13-year-old neighbor to babysit. That’s when your support network kicks into high gear.
What makes a special support network are people with the ability to understand. Whether they have a child with a special condition or not, some people just get it. They can put themselves in your shoes. They ask questions about your child’s condition and learn everything they can right from the first day of diagnosis. They show you that they care and that they want to be involved and be a support to you.
Good friends also watch how you care for your child and learn how to do what needs to be done. So when you do need a break, they can step in and help.
Supportive friends know to let you cry and not tell you that it will be okay because they don’t know that it will be and they do know that words don’t take this level of pain away.
A good support network is made of people who will drop their own plans and put aside their own needs to help you. Whether you need them to stay with your other children while you take your special needs child to the hospital or you just need a night off or a shoulder to cry on.
A good team of friends will stand by you through the fight to find a cure for your child with a chronic condition or to find new treatments for your child with a disability.
Good friends are not always easy to find, but when you do find them, you know it. The best thing a parent of a special needs child can do is build that support network, through other parents of special needs children, family and friends both old and new.
So take stock of the support network you have and if you feel it is lacking, try to build one for yourself. Go online and search for other parents raising a child with the same condition as yours. Check for a support group in your area to meet other parents in person. Invite your family and friends to help you care for your child and teach them whatever you can. Having a support network is too important to go on without one.