When you are raising young children/infants you make it through that phase of the life cycle knowing that the struggles associated with that stage of life will end, but when you have special needs children the extra demands placed on you physically, financially , and emotionally often do not end, in fact the challenges are often escalated and it can become so overwhelming and exhausting. Not only do you have the normal struggles of life, but you are faced with spending hours making and attending doctor and therapy appointments to get your children the help that they need, dealing with insurance companies, trying to assist your children with all of their daily living special needs, and trying to educate yourself and others about their disease. There remains little time or energy to take care of yourself and cultivate relationships and friendships that you really do care about and long to have, but they just get moved to the back burner because you are in survival mode thus leading to isolation. When Rachel got her feeding tube they ask me to complete a survey. Some of the questions on the survey had to do with isolation. I am beginning to understand more and more the reality of this struggle when you have special needs children. While other families move forward living the life cycle of a “normal” life, you are stuck in the first phase of the life cycle and it becomes very challenging to find time for other people or find others that you can relate to and have things in common with you. The children with special needs have this same struggle. So many people have been SO good to our family and have reached out to our family in great love and kindness on many occasions and for that I am so grateful. I was just venting and hoping to be the voice of reality for so many of my friends who struggle with this on an even a greater level and shed some light on the struggles that we face. Somehow we summon the strength to make it through the day and get up the next day and keep putting one foot in front of the other.
