I got pregnant with A when D was about 18 months old. After having such a wonderful experience having a son, I desperately wanted another son, so that I could repeat the experience, plus give D a brother. When I found out in the ultrasound that I was having a girl, I cried (in much the same way I cried when I found out I was having a boy the first time around!) Soon, however, I was excited to have a daughter and experience having one of each gender.
When A was born, things began to go wrong very quickly. When I first saw her, I was shocked by her cleft lip, so it took me an extra few seconds to fall in love with her. Within 30 seconds of meeting my daughter, not only was I madly in love, but was fiercely protective in a way that only the mother of a child with medical issues could feel. I was (and still am) very protective of my son from the get-go, but with A, my mama-bear claws and instincts came out in full-force from the first time I laid eyes on her. I have had to deal with (talk to, hire, fire, and question) many doctors, therapists and teachers in ways that I never thought I could (some good, some bad).
Therefore, A taught me that a mother will fight and advocate for her child, well beyond her comfort zone, if it means getting the best care.
With my son, the only medical care he requires is a vitamin every night and to make sure he gets his well-child checkups and immunizations. With A, I have had to learn to care for a feeding tube, tracheostomy, and clean stomas; learn machinery such as suction machines, oxygen tanks, feeding pumps and hearing aids; and keep a schedule of seeing doctors and therapists that would make most people's heads spin.
Therefore, A has taught me that sometimes caring for a child is scary, but no one could do it as lovingly or as accurately as a parent.
When A was in the NICU for 12 weeks, and we kept getting more and more bad news about her health, I was prepared to bring home, quite frankly, a vegetable. Hearing that she had had a prenatal stroke and that she might be in a wheelchair her whole life (which never came to pass, by the way) made me already make plans in my head to sell my two-story house and buy a one-story. Getting her feeding tube made me fear that she would never eat by mouth (and now she is getting it removed). Hearing that she had no semi-circular canals and low muscle tone made me wonder if she would ever walk.
Therefore, A has taught me that often doctors will give the worst-case scenario, but every child is different and never to give up hope. At the same time, she has taught me acceptance. For example, some things are resolved (like eating and drinking and walking) but some thing will never be (she will ALWAYS be deaf/hard-of-hearing).
Before A was born, and I already had a healthy son, I didn't really think about "special needs". Now, I am very aware of the many needs children have, whether it is physical, mental, emotional, medical or behavioral, and don't see "special needs"...rather, I just see a child.
Therefore, A has taught me that we all have needs, in one capacity or another, and are all in need of special treatment and TLC.
It often takes A longer to learn or do things that come easily to other children. She ate orally at 1 year, drank at 3 years, and walked at 3 1/2 years. She (almost always) works her hardest in her therapies and at home. She WANTS to succeed.
Therefore, A has taught me tenacity and perseverance.
A has taught me so much and I could not be prouder of her. She is my miracle baby, my gorgeous girl, and I'm happy she's mine. I believe we were destined for each other.
The Most Important Mile of My Life: Ellen Casey
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