The Joy and Pain of Raising a Child with Special Needs

The Joys and Pain Of Raising A Child With Special Needs Donna McFadden ENG121 English Composition I Mr. Jonathan Alexander, Instructor February 18, 2013 The Joys and Pain Of Raising A Child With Special Needs Even though I am not the only parent of a child of special needs this is my personal journey into the world of special needs. No one could have told me that at the age of forty three I would be experiencing motherhood again to a child born with Cerebral Palsy. In fact, I was just preparing to celebrate my 25th high school reunion when I got the news that I was pregnant.

When faced with the complex challenges of single motherhood you will soon find out that love is all you need. Allow me to give my account of this life altering phenomenon that totally changed the course of my mindset and direction in life. After an extremely emotional pregnancy and delivery by C-section, my son Nathan took his first breaths into a world of chaos and confusion. Being rushed to the neo-natal intensive care unit weighing only 4 lbs 3 oz, being probed and pricked by doctors and nurses to help stabilize the very life he stepped into.

The thoughts of what my little angel endured coming into this world shows me his strength and determination as he begins his fight on this journey to manhood. Life began for my son spending his first few weeks of life in a NICU as they call it in the hospital with incubators and feeding tubes combined with the constant care from doctors and nurses assigned to his care. How traumatic for both mother and child to experience the separation and disconnect that is being substituted by machines. I forced the hospital to allow me an opportunity to stay in a room so that I could be as close to my son as I could.

I was there for every feeding, every diaper change, all the testing I would sit in the NICU beside his bed and sing to him to reassure him that I was there. I was determined to be with my child as much as I could through this torturous ordeal. The instructions that we had to follow when we got home were intense, because of his prematurity and low birth weight many important things were still developing. I had numerous classes and seminars that I had to attend and complete before leaving the hospital. I even had to purchase a new car seat because the one that I had was not sufficient for a premature child.

We immediately began having to parade through doctors offices on a weekly basis to be tested and examined and this process required a lot of patience and dedication. At five months olds we were back in the hospital so that Nathan would have his first surgery to repair three hernias. Once he recuperated it was then time for the next round of surgeries and this rollercoaster ride seemed to go on for months. Throughout this process you’re trying to find those opportunities to enjoy your child, those memorable moments of accomplishments and milestones.

During these months I had no idea my son has Cerebral Palsy, nor had I ever experienced anyone who had been diagnosed with this disability. When we got the diagnoses of Cerebral Palsy, Nathan was fourteen months old and a very happy, determined little toddler, actually to look at him you would never know that he had brain damage. For me, not really knowing what it meant to have Cerebral Palsy actually played to my advantage because I didn’t have an opportunity to get upset, but more of a determination to educate myself on what I needed to do to help this baby grow into a wonderful productive person.

Just like when he was born we were thrown into the arena of occupational therapy, physical therapy, speech therapy more doctors and test after test after test. This process is extremely daunting, however necessary. I was just trying to tackle each obstacle as it came day-by-day with all the optimism I could muster. I had a determination to not think negatively or get in that place of despair or asking “why me? ” How do you balance the range of emotions that not only go through your mind, but the minds of your family and friends about the hopes and fears of the destiny of your child?

I am so grateful for my faith and belief system to help me sustain my strength and emotional well-being because I have no idea where I would be without it. This was truly one of the most difficult times of my life combined with an element of gratitude for the life and well-being of my son. Even though we are still on this journey a lot of progress has been made from that first day of life in July. My positive attitude about my son’s disability has been engraved in him and I am quite encouraged that through it all he will be such a positive example of how the challenges of Cerebral Palsy will not dictate his life.