This morning Joey and I went to Cosley Zoo, a small zoo in Wheaton. The weather was perfect so we thought a morning out would be great. While we were there we saw many mom's, grandparents, dad'd, and their children among the animals. We were one of the first ones there so we could walk around before nap time. We saw a woman with a double stroller, and didn't think much about it. Many people have double strollers when they have two kids, not just twins. We passed each other with a little hello and that was it. Later on, I noticed her son walking around and babbling, the little girl inside the stroller. After running into each other a few more times I noticed that the little girl had oxygen on. The mom eventually pulled out the little girl and put her on the ground to let her walk a little. She looked a little more delayed than her brother, and definitely shorter and thinner. However, I knew those skinny, skinny legs. I knew immediately that those two must be twins, even if he was almost a whole head taller than her.
After walking around a bit more we ran into them again and this time the mom was holding the girl while her son was running off. She was trying not to trip on the tubing and trying to keep her son in eyesight. I looked over and told her he was fine. I didn't want to intrude and pick him up or ask her for help. She seemed a little embarrassed and overwhelmed, but I knew nothing she wasn't used to. I remembered many times with Josh I felt like people were always thinking I was a basket case or a complete mess trying to take care of two kids, one having so many special needs and equipment. I didn't want to say anything to this woman because I didn't want her to think she was sticking out, and truly her son was nowhere near as unruly as some of the other kids running around. I was however thinking about Josh and admiring this woman for having her daughter out, not being scared or tied down by equipment. I was so glad that with Josh we allowed him to live a normal life. We took him so many different places. I never wanted him to be left at home or have us all staying in because of a disability. Yes, we had our trying times, our looks from strangers, and wondered sometimes ourselves what we were doing, but we weren't going to let circumstances get in the way of life.
We saw the woman walking with her daughter and son once again and he son started to head off as she was stumbling over tubing again whisking her daughter back into her arms. She smiled at me and said "My two tornadoes!" I decided to say something. I told her that I thought her daughter was doing and awesome job with walking, and told the mom that I was so glad to see her out with both of her children and not letting equipment hold her back. And then I asked her if her kids were twins. With a practically jaw dropping stare she said yes and asked how I knew when most thought that they were a good year or so apart. I told her that Joey is a twin and his brother had those same skinny legs, and although born a little bit taller (one inch) and a little bit heavier (3 ounces) he struggled to keep up with Joey. With a relieved look she said "It takes one mom like us to know one!" She talked about how when they were born people new they were twins, but then the boy got bigger and the girl didn't grow as quickly. Soon people thought that they were a year apart, and now she said most think a couple years difference. Her daughter has heart and respiratory problems. She was in the NICU at Edward for 3 weeks, and has had 3 heart surgeries. They are looking to another one soon. I told her a little bit about Joshua as well. She mentioned to me that when her kids get a little bit older she would like to go into nursing because of all of this. We then parted ways, her son was ready to move on and Joey was looking for another animal to point at.
Just before leaving we saw her again and she asked me how old Joey was. I told her, and then also mentioned that baby number 3 would be 17 months apart (give or take) and I would probably be in the same place I was with Josh and Joey, only Joey will be the small guy this time. If baby number 3 is a normal size I'm sure she will quickly catch up to Joey at least in their early years. I imagine at some point people will wonder if they are twins, and possibly later if she is older. Of course this could be totally false, but I just think it will be easy for this baby to surpass a preemie who is still only in the 3rd percentile for weight and 10th for height! Anyways, in talking this second time she asked about Josh's ears again and mentioned that her daughter was born with an ear that was quite pointy and she had an encounter with some kids one day asking what was wrong with her ears. She said that she was so upset, and later her husband told her she should've told them she was an elf. I recalled our very first appointment outside of the NICU and the pediatrician. It was at the endocrinolist, and there were two kids one looking about junior high age, and the other a few years younger. Seeing a baby in a stroller the older girl had come by to take a look at Josh. Once she saw him she gasped and she looked up at me. Seeing me stare back at her she quickly walked away. Her younger brother came up to see Josh shortly afterwards, and with the innocence of a little kid looked at Josh and asked "What's wrong with him?" The sister came over to try and grab her brother before she heard me explaining how the trach helps him breath, and his ears are the way they are because he was born that way. It is amazing the things that kids say, but even more amazing is the glares and comments from adults. I won't go into the outrageous things that people have said to me and Josh, but it was definitely a life lesson in sociology.
The woman and I wrapped up our conversation once again as we were both getting ready to head home. I told her I would be thinking of her and her daughter with the upcoming surgery. She later said that they were seeking a second opinion on something because of discrepancies with the cardiologist and pulmonologist. We both kinda smiled and laughed and commented on how involved you have to be in advocating for your child. She told me she was very glad that I did say something to her and that we were able to meet.
Once you have loved Josh, or a child like him, there is no turning back. You feel some gravitational pull towards children with special needs. When I saw that little girl with her skinny legs, taped up face holding the oxygen in her nose, I wanted to scoop her up. I couldn't tell you one thing about any of the other kids there, but I could draw a picture (if I were an artist of any sort) of every detail on her beautiful face. I hope her 4th surgery goes well, if it is required, and I pray for her and her family.