Before I had my son, Noah, I wondered what kind of a Mom I would be. I knew that I wanted to be as involved as I possibly could in his care. I also knew that I could not do everything I want to without help, at least for first few years.
Although 90% of the physical childcare was done by Tim and others. I needed to inform all other caretakers that “I” was MOM and I made all of the decisions.
I needed to find ways for Noah and me to form that mother-child bond. The first project to conquer was breastfeeding. Everyone kept on telling me that the bottle would be better for everyone else, but this was the only thing that I could have with Noah that was truly ours. I found breastfeeding easier on my waterbed. The way that the mattress would rise on one sides, just the right height for Noah’s head to be parallel to my breast. I must admit he was a great sucker and when he could find that nipple and clench on for dear life. When I was in my wheelchair, I used lots of pillows all around me. For me, sitting cross-legged against the armrest of my couch was a neat and safe way to breastfeed Noah. Nursing pillows are (especially the ones with the back support) great and useful for support in positioning mommy and baby. I breastfed Noah for six weeks and then I was done: it got to be very tiring and my breasts hurt a lot! But I still wanted Noah to get the great nurturance that my milk had. The breast pump was a Godsend. I could give my baby my/his milk, but no pain was involved. We did the breast pump thing for about three more months, and then we moved on to baby formula.
Since my CP hands would not allow me to hold a baby bottle in the typical way, we had to improvise. Again, I was determined to play the mommy role as much that I could. Baby bouncers were the key to keeping Noah upright and safe, but there was the holding the bottle thing. We tried many different types of bottles, but they never seemed to work out quite right. Finally, the puppet master came. My good friend and mentor Colleen Thoma, had brought Noah a gift. It was a big round fluffily pink pig. It was cute and cuddly. Little did anyone know that big round fluffily pig was going to become assistive technology. I had trouble holding bottles. The diameter was too big for my hands to grasp, but the place where you normally put your hand in the puppet, was perfect for a baby bottle. I found that I could hold that pig’s hand or foot and keep the bottle in place for Noah.
When Noah got a little older, it was baby food time and of course, I didn’t want to miss out on that either. So the problem was going to be, how was I going to hold a baby spoon, when I couldn’t hold a spoon to feed myself? There are many things that I could do with my head and mouth than I couldn’t do with my hands. I had a friend, who was a physical therapist. Together, we created foam spoons. I could hold the spoon in my mouth. I must admit it was a little tricky at first, but after a while, I got the hang of it. The right high chair was the key. We discovered that the height of the chair was very important. Most high chairs have a little foot rest in the middle; I found it to be a hindrance because I couldn’t get close enough to Noah’s mouth, so we just took it off. If I was higher than Noah, then we had more success in getting the food in his mouth and not on him, or me, or the floor, or the ceiling, or the dog. I knew that Noah much preferred Daddy feeding, less mess, but I still needed to have that human touch.
I discovered that the floor was an even playground and almost everything we did was on the floor. We could get him dress, exercise him, play peek-a-boo and discover toys together and I felt safe.
When Noah was an infant, I used a baby sling to carry him around. As he grew, he learned how to hold on to mommy’s wheelchair as we rode. To this day, Noah is a wiz in wheelchair-ology. He knows what every part is and what it does. I know now what a taxi driver feels like, because when he hops on the footplates, we go! It has gotten to point where I don’t drive anymore, He does. I’m just the passenger. One of our favorite things that was only ours was going to market. The market was on the corner and we could get there in minutes. Tim would put a big bag in the back and Noah on my lap and we would go. The neighborhood knew us by name. At the market, we would do our own thing. I would tell Noah what to get from the shelves and he would get them. Sometimes the items were too high and Noah played acrobat and climbed on the armrest on my chair to get the items. It was fun and of course Noah got special treats. At the checkout counter, Noah would place the item on the counter and get the money out of my side pouch. Together, the clerk and Noah would put everything in the big bag and Noah with some kind of candy in hand and we would contently ride home.
Bath time was always a fun time. We soon discovered if I got in the tub along with him I could do more. Keeping Noah safe was a challenge. We first tried the round bath seat, but it slipped away and was not steady enough. So, I found out that if I wrapped my legs around Noah, he was not going anywhere. I think Noah liked my strong legs around him. He knew that he can still play and still feel safe. I am proud to say that I (not dad) taught my son how wash his hair, clean his body, brush his teeth and scrub those knees.
As I said earlier, I could not do a lot of personal care for Noah when he was an infant. Tim (Dad) and others did most of the physical caregiving. When Tim had to go back to work and (eventually me too), we had to hire a baby sitter. It was hard for me to watch and have another woman do the childcare. For every person we interviewed, I would tell them “My Rules.” I needed them to understand that “I” was MOM and no one else was going to be.
I learned that being a good parent didn’t mean I needed to be a physical parent. Being a good parent means being there. Even if it’s only changing a diaper. I could talk to him and play with him. I could verbally teach vs. physically teach. One example was punching a straw into a juice box. Noah couldn’t quite get the sticking the straw into that pouch. So, we use the tip of pen to open the hole. I would tell him, “push the pen”, then the hole would start and he could put the straw in.
When Noah was around three, Noah’s caregiver got sick. We knew that we needed to find alternate care and really, it was time for Noah to be socialized with other kids. Tim and I decided to put Noah into daycare. We were lucky; we found a day care center three blocks away from our home, that meant that I could take Noah back and forth in my wheelchair. I was a little worried about how the staff and teachers were going to react to the mom in wheelchair thing, but they were very accommodating and welcoming. At first, the teachers and kids didn’t know what to think. His teachers were great! The first day as we rolled in, she announced to her class, Ok, Noah’s mom is in a wheelchair, who has questions? I let them look at my chair but, after days, weeks, and months, the newness slowly went away and the kids didn’t stop and stare, and I was only known as just Noah’s Mom. I don’t think Noah had a clue why did the other kids stare, sometimes be afraid of me. After all, Mom and the wheelchair were typical for him.
The question: I knew that BIG question was going to come. So, in my mind, I had rehearsed and rehearsed what how I was going to tell Noah where babies come from. So, one day, while watching Scooby Doo, Noah says, Mom, I have a question? Ok, I thought, I’m ready!!!! Well, the other mommies walk, and you don’t? Why he said. I felt that baseball bat hit me. Wow, I thought that question would come much later in his life. Well, I said, when mommy was born, I got a booboo in my head and I couldn’t walk. Oh, he said, and continued to watch Scooby Doo. Naturally, as the years went by, that explanation got more detailed.
Disciplining Noah is my duty. Tim tries, but really, I have that power. No need to be physical, when one of “Mom’s Look” can get him going. Noah understands every word I say the first time, especially when I’m mad. I learned that if I’m mad, and don’t talk to him for a while, that’s worse than any other punishment I can give him.
Now that Noah is a teenager, more challenges are on the way. But I must admit I’ve been lucky, Noah is not a bad kid, a few little bumps along the way, but nothing major. I don’t really tell what to do. I explain to him what I don’t like and tell him why. He usually heeds my advice.
I love how Noah picks his friends. He has an eclectic group. I would like to think that since many different people come and go through my door, Noah has a good sense of people, who are good, who are not so good. His friends always treat me with respect, they may not understand me, but they know what I say (with Noah’s interpreting, of course). Noah lives in a very inclusive world.