I have a little daughter, a sweet little bundle of joy, named Sean Willow Pierce Walsby. The name is a combination of my and Carole’s last names, Willow (Mom’s choice..I liked it too) and Sean, which is Carole’s tribute to one of her closest friends ever, and a friend of mine as well, the late Sean Johnson. All of that aside, I just call her Willow and introduce her as such.
I don’t think that I have felt the need to let everyone I come in contact know that Willow has Down Syndrome. I am not sure why that is. I think part of it is that to me, as her father, it just doesn’t matter to me very much. She sort of has that kind of “look” around her eyes a little bit but I don’t think she could be spotted as easily as most kids or babies with Downs. She is cute as a button, and is very social and outgoing. She watches everything and talks all of the time. She will yell at you if you piss her off, which is pretty cool I think. It sure beats crying, right?
Anyways as of now, Willow is very healthy and happy.
We knew right off of the bat. No surprises. When I went with Carole and Noble to get the ultrasound, the end of that procedure seemed sort of ominous because soon were ushered into another room to talk with somebody and right there that seemed to be sort of a strange thing. Something was wrong. I assumed that the doctor would just normally go back into the room where the ultrasound was being held and would tell us the good news. Well, that is not what happened. First we were told that it was a girl. I wanted to have a little girl, so..great. We were told that the fetus had something, some fluid on the back of its neck. This was a sure fire way of knowing that this baby was going to be a baby with Down Syndrome. We left feeling distraught. The doctor said that there might be a slim chance that she could possibly not have it but the next day when the test results came in there it was. Down Syndrome.
And what did I really know about Down Syndrome? Nothing really. That afternoon was the hard part. We both sat in the backyard crying and Carole wanted me to promise her that I would be there to help raise it. I said yes. When it came down to it, I just couldn’t kill my own daughter, no matter what. We were told that our decision to have the baby anyways was an “unpopular decision”. We were given some literature to read about babies with Down Syndrome and after reading most of what was said, I noticed that pretty much every personal account started off pretty bad but always had a happy ending. These families loved their sons and daughters no matter what. That gave me reassurance. It should also be pointed out that there are many different shades and levels of the condition. So fresh with that news, I left home to go on that year’s Melvins tour, the band invited me out to hang out and to try my hand on making some extra money.
It was weird leaving. But despite what was going on I had a great time. While I was out the baby was fighting off the fluid on the back of her neck which was growing and threatened to harm her. Right before the end of my time out there, the baby defeated the fluidly growth. Not only did she defeat it, it disappeared. So this was great news..she was going to live. I told the Melvins camp and they congratulated me and we had a drink.
Willow also was suspected to have a hole in her heart. They weren’t sure what was going to happen, couldn’t tell if it was going to heal before birth or not.
Next up was Double Negative being invited to Europe for a week. It was awesome. We all had a great time. A week later we flew up to Chicago to play with COC. We played a few more shows and it was the end of the year and this is when Willow would be born.
It was a Technicolor moment. Amazing. She was crying and was cleaned up for about two or three moments when I took the first picture. She looked healthy..and cute. We spent three days there and got the news that she did have a hole and that there would be a six month window for her to have the operation. Okay, she overcame one hurdle which was birth and now she has a second one on the horizon.
So the first thing to go was playing in the band. I had mixed feelings about all of that but it was the right thing to do. The band was sort of my only real social outlet, the last holdout from my old life. It had been increasingly difficult to predict what I could and couldn’t do. They had a tour booked that I couldn’t go on because of the Willow's up coming heart surgery, one thing led to another and I played my final show in March, I think. Meanwhile, we are all getting to know our little Willow. There is no sleep. With a little passing of time It seems like she recognizes us and smiles and starts to laugh. At four months old she has the operation and in six hours it is done. She was so patient and calm when we brought her down to the hospital, and then afterwards we met the doctor that saved her life. It was an intense moment. What can you really say except thank you? Then we saw her, which was tough. She recognized me and weakly called out with all of these tubes and shit in her mouth and going out of her body. But she did it. Just a few days later (including a harrowing moment with Carole and nurses in the middle of the night) she had a lot of stuff taken off of her. She was sitting up with help from her Mommy already and looking sort of pissed off, actually. Willow kicked ass, plain and simple. We happily took her home from that hospital a second time.
Anyways, Willow is doing great. It is fun to get her to laugh and to play with her. She likes to hold up whatever she is playing with at the time and show me what she has . Noble is very protective of her, which is great. He will sometimes perform for her and she loves it. Willow adores Noble and always watches him.
I don’t know what struggles Willow will have in the future while she is growing up with us but I am sure it will be just fine. She can’t actually crawl across the floor even though she is a year and one month; but, she can sure move her butt across the floor in any direction she wants to get around. She can stand on her feet if you hold her up. She likes that. It seems that she gets a little frustrated because her body can’t yet do what her brain tells her. But other than that I can’t think of anything yet that makes me feel afraid or worried. To have her look at me when I come home with that wide eyed two bottom teeth look of delight on her face is something you can’t put a price on or explain correctly. It stirs up feelings to just have that connection with a little baby that loves you unquestionably, and that is why her condition makes no difference to me at all.