I hadn't expected my post announcing Baby Hulk to get so much attention. Darling Husband has been asking when I am doing my book signing and Stitches has told me not to forget her when I become famous. Darling Husband shared it to his car forums to try and smooth things out with some customers upset with him for being away. I made grown men cry! I think I am most excited by one of those people, who was inspired to become more aware on Down Syndrome and he wants to help! Who knew raising awareness for a cause could be so easy? I hope things get better for Darling Husband at work so his annual car show and meet can continue, it is always a fundraiser and this year we actually have something we can really feel good about. I mean yes he felt good raising money for the Humane Society but this is just so different.
In all honesty I think I made the post more for me. If you read my posts before you know, well despite the fact that my original posts were The Lovely Lie, it starts with being honest, because you have to be honest at least with yourself and by making my honesty public it made it impossible to go back on. Everyone knows the truth now there is no way I can deny it to myself anymore. I think I've gone through all the stages of grief, except anger... I don't think I've been angry... you will have to ask Darling Husband. I hadn't even cried since my last post. It was a very therapeutic post for me. After I hit publish it was like a huge weight had been lifted. I think I just needed to get it out. I can even read it now without crying! I was basically sobbing every time I went over it while writing it and now it's nothing.
So you caught that did you? I hadn't cried since I made my post...
Well I hadn't until last Thursday night. Lumpy and Mr. Grey had a Christmas program for their preschool. We met outside the classroom at 6:10pm to drop the kids off. As we stood at the door waiting for them to let our kids in, other parents and children were arriving. And then another family arrived. Their youngest, the cutest little girl, she ran right up to the door passing everyone else waiting in a line down the hallway, looking adorable in her fancy shoes and tights and pretty red Christmas dress, blonde hair a little bit of a bouncing curl at the ends and the eyes, the slightly smaller, angled, almond shaped eyes. Those eyes that I knew. And she was so cute and happy and excited to be there! I looked down at my sweet baby in my arms and then I cried. In the hall with all those other parents. And of course Dear Husband saw her and immediately looked to me, he knows me too well and unfortunately he had to go be his darling self and sweep me up in a hug in front of everyone, just in case they hadn't noticed I was crying to begin with, I'm sure they did then! Quick! Get a hold of yourself!
It was then I realised I did want to talk to someone. I kept looking at the little girl's mom, desperately wanting to talk to her, wondering how you start a conversation like that. "Why hello there, I notice your daughter is rocking an extra chromosome! What a coincidence! My son has 21 as well!"? How do you even do that!? Well I don't know if Baby Hulk is just that cute or if one of the boys' teachers put her up to it but after the boys' performance she came over and spoke to me. All night people had been coming up to me asking about my tiny baby so I had gotten used to it although I must say when she came up to me I was soooo excited! She told me seeing my tiny baby made her want another. Her tiny baby is 3 already, "you may have seen her running around here somewhere, she is the one... we call it her 'special sparkle' she has Down Syndrome." She seemed surprised when I told her my tiny baby also has that "special sparkle" she looked at him like she was trying to see it. It was nice to have someone ask all the right questions without having to explain anything. One of the first things she said was "How is his heart?" Her daughter, Tsunami, (I didn't even have to give her that name, it was already her nickname) had to have open heart surgery when she was, I believe she said, 4 months old. I can't imagine that! That was the first thing she asked, "how is his heart?" But Baby Hulk's heart is fine. We will have to keep checking but so far, it is fine. Tsunami is now just like any other 3 year old! She got her nickname the same way Baby Hulk got his, she is just a little girl, she climbs on tables and swings from chandeliers. If I hadn't been late registering Lumpy for preschool he would have been in the morning class with her. She goes to preschool just like he does, same age same class just a normal little girl. It felt really good to talk to someone who was just a little ahead of me knowing what I am going through.
One of Mommy Tsunami's questions for me as if I was pumping. Well I was then but I am happy to say a week later I am not! Baby Hulk is nursing all on his own now! I'm still watching him like a hawk and counting dirty diapers like a mad woman (I have an app for it and everything!) but he is looking good! I was almost in denial again because he is just such a baby to me. He sleeps more than my other boys did but he is just a sweet baby boy to me! Then I saw a Down Syndrome boy at Target the other day and started to worry again. I'm not sure how old he was, he had a little facial hair, he could of been anywhere from 15 to early 20s but the way he was hunched over in the Hot Wheels aisle totally absorbed in the toys, it reminded me of how Mr. Grey would behave. To be fair I think that behavior could go all the way up to like 12 but it still made me nervous. I find myself making all kinds of excuses though. His mom called to him to come on and she spoke to him as though he were a small child and the whole family reeked of cigarettes. That was when I decided maybe with a different family this boy could have done better. I mean, studies have shown that children exposed to second hand smoke get sick more often, more asthma and coughing... people with Down are already more at risk for respiratory infections! Cigarettes are also known to cause cognitive problems in children! People shouldn't smoke around children anyways! Even before Baby Hulk I was extremely bothered by 3rd hand smoke. I didn't care if you weren't smoking at that moment, if you smelled like cigarettes at all I didn't want you touching my babies! The nicotine is still there. I just can't fathom smoking myself and having my Down baby! Why make things harder for him? So then in my moment of denying that Baby Hulk could ever be like that, I continue on in this fantasy world, I bet he was formula fed as a baby... they probably didn't keep up with his physical therapy... did they take all the help they were offered and do everything they could for him? All because they smelled like cigarettes and he wasn't where I wanted my son to be developmentally at that age. I want the best for Baby Hulk just as I want it for Mr. Grey and Lumpy.
Stitches has been worried I am going to go off and make new friends with the other parents of Down Syndrome children and leave my old friends behind. I was fighting the thought of becoming one of those parents in a support group but after talking to Mommy Tsunami I think maybe I do need it... but I still need my friends! I need my nerdy friends who play dress up and have brightly coloured hair and watch Korean dramas and Doctor Who and Lady Porn! We wrote an embarrassingly trashy historical romance together! THESE are my friends! Just because my son has DS it doesn't mean that my entire life will become DS. As I explained to Stitches. They would be my occupational friends. She has her friends she has made while working at the farmers' market with her London Peach business. They are not her life. Down Syndrome will not become my life either, it is just be a part of it.
If you are interested in learning more about Down Syndrome and what you can do check out the National Down Syndrome Society.