My name is Kathy. I am a 37-year-old single mother of two beautiful boys. I have never been married. Kylen is eleven-years-old, and Konner is four-years-old. Both of my pregnancies were unplanned. I can say with confidence that I know how you feel, what you are experiencing both with unplanned pregnancies and the fear, anxiety, and worry of raising a child with disabilities.
My son Kylen has cerebral palsy, profound mental retardation, and epilepsy. He is a gift and a blessing to my life. He uses a wheelchair. He does not talk. He requires total assistance with his meals, bathing, grooming, dressing, and he is incontinent. Kylen has significant disabilities both cognitively and physically.
That being said, I want you to know that Kylen has taught me so many fabulous things. Kylen is a beautiful, sweet, wonderful young boy. His presence in my life has developed in me great appreciation for things that most people take for granted.
Having a child with severe disabilities has some natural sadness at first. That sadness is soon replaced with a new and exciting life. I love Kylen and all the things that make him into the person that he is. I love Konner too. I love both of my boys, and there is no more love for a child simply because he does not have any disabilities. In fact, I often joke with my friends that Konner is sometimes more difficult to care for than Kylen! Parenting is a difficult job. Parenting a child with disabilities is an adjustment. It is no different than any adjustments that a person makes over the duration of their lives.
I have met other families who have children with disabilities similar to Kylen, and they are my closest friends. Together we forge ahead advocating for other kids like ours and all people with disabilities. There are great organizations for people with disabilities. There are many opportunities to play sports, attend regular education classes, and be involved and active in life. I have been involved with my local Arc and with Partner's In Policy-Making, both of which I would recommend that you become involved with. There is help, support, and guidance for you. There are other parents who have walked in your shoes and down the same path that you will take. You are not alone.
When I had Kylen, I did not have any more skills than any other mother to care for a child with severe disabilities. I was not any more qualified than any other mother. I had love in my heart for my son. I had a desire to be the best mother that I could be. The rest I learn as I go along, and so will you.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.