Horrible or plain funny?

Having a child with medical conditions , we have a lot of challenges in our way. This is the time when we learn who our true friends are and who aren't. And, there is a third category of people. People who neither stay by your side nor stay away. They are the real troublemakers who make things worse just for the sake of it. Yes, people like this truly exist. Don't believe me? Just read on.

After my son was on trach, one of my aunts came to visit us after we got back home. Having secretions and suctioning them out is a routine procedure in tracheostomy. But, this aunt of mine was so convinced that my son was having cold. Especially, after she saw me mixing his formula with 'unheated' water (FYI, it was aquafina). No amount of explaining would satisfy her and soon after, I kept receiving phone calls from a lot of people advising me to give my son boiled water to avoid him catching 'cold'.

This is the incident that made me write this post. Last month, I had gone to Bangalore for my son's ENT check up and I stayed at another aunt's house. During the course of conversation, I learn that aunt1 (from the prev. incident), has been going around telling people that my son is facing all medical problems because of me. I thought it had something to do with the stupid water thing and tried laughing it off. Later I learn that it had to do with something that happened about a decade back and it has absolutely nothing to do with pregnancy or child birth. How could she even think of such a connection!

It took a while for me to understand that she had been seriously propagating this one. I was shocked and deeply hurt. I cried. I was angry. I thought once I got back to Chennai, I would take it up with her. But, would it really make any difference? She is convinced about her stupid theory. So, why bother. Plus, I don't have the energy to go about fighting or feel the need to convince her. At least, this time she does not have the nerve to state something in front of me. Thats an improvement!

I met a mom at the Down syndrome center about 2 or 3 months back. She is a real inspiration to me. She is young and if you meet her, you would know how much she is pushing herself to bring the best out of her daughter. True to my heart, I know I can never be like her. Her daughter (with DS) is one of the brightest girls I have seen. So, during our last meeting, she tells me how her MIL is blaming her because her daughter does not have a nasal bridge! Excuse me! I see this woman fighting against all odds all alone and in stead of appreciation she is being held responsible for her daughter's lack of nasal bridge?

So, there are a lot of such stories that happens to me or I get to hear from others. I just wonder, what are we going to be blamed next for ? Climate change and global warming? I wouldn't be surprised! I don't think these people are really worth our time and anger. Wouldn't it be easy if we just ignore them? At least we could have a good laugh at their folly!

Disturbing comments on down syndrome

Yesterday, I was visiting one of the local online forums. The forum has plenty of categories from cooking to books to pets to almost anything that I could think of. So, I was just curious if they have a separate category for ‘kids with special needs’. I searched for it and couldn’t find any.

I tried to search for ‘down syndrome’ in specific. The topics that came up were mostly on ‘amino test’ showing positive result and doing away with the pregnancy. And, one specific topic was so disturbing. A lady whose results has come positive for down syndrome had written how she wanted to go for the child but her husband did not want it. So, she had asked for people’s advice. Going through those advices was plainly pathetic. Save a few people, who had represented both the positive as well as negative side, most of them had spoken about ‘burden on the family’ to ‘embarrassment to the siblings’ to every horrible thing they could come up with. Some even said, how they have got rid of one or more of such pregnancies and later had a a ‘normal child’ and were now happy. A lot of people showed a total ignorance and respect to kids/people with down syndrome and other disabilities.

I don’t believe in abortions and I personally believe there can be no excuse for killing a life. At the same time, if someone thinks they aren’t strong enough to go through parenting a kid with special needs, I wouldn’t comment on them. However, it so bothers me that despite not being able to appreciating diversity, some of these people just stoop so low and pass derogatory remarks or demean people with disabilities. Its such a sickening attitude. And, the words that they had used to describe the disabled kids were so hurtful and completely unbearable.

Anyway, the lady had posted her question on September,2009. I was curious and was hoping that she went ahead with the pregnancy. I wanted to write to her and share my story. And, share other stories of so many wonderful kids that I have met online through their parent’s blog. I wanted to tell her that this particular journey is definitely harder but it is rewarding too. That we loved our son dearly. And, my son having Down Syndrome has in no way taken out the happiness in our lives. After his birth, we are even more happier and are able to appreciate every step in our journey. Of course, its for the lady to decide her journey but she has to at least know that opting for the child is a worthy choice .

Anyway, to know what she finally decided, I was going through every page and found more and more insulting remarks. So, finally I found her response and she had decided to do away with her pregnancy.

Before reading these topics, I was planning to write to the moderator and request her to create a sub-forum for kids with special needs where we can discuss about therapy and other things. But, after reading this, I totally gave up. I’m afraid of insensitive remarks. Of course, I would fight them. I could even have the moderate delete the offensive post. But, the scar that it would leave in my heart is something that cannot be done away with. To them, it is just a random remark. To me, its about my son.

From baby to a big boy!

I’m so excited because I saw my son crawl today. Usually, he would just scoot or crawl in the reverse direction. Today, he actually crawled.

These days, I see a lot of changes in Vignesh. He is getting choosy about so many things – from his food, to his toys to music. Believe me, he is getting very choosy about the music (read as ‘rhyme’) that he listens to. He enjoys rhymes CD by Company A. After seeing his interest, I got him different rhymes CD by two different companies. He would not listen to them. Finally, I got the second series by the same company A and he listens to them.

I’m having so much fun ‘treasure hunting’. Yes, I have found 2 other teeth in my son’s mouth in the past few days and the treasure hunt still continues.

I’m so happy that my son is becoming a big boy!

Nap time

My son was having his Saturday afternoon nap. He had disturbed sleep. Since I was busy in the kitchen, I sent my husband to make him sleep again. After some time, this is what I saw:

Look, who has hit the beach!!!

It was a wonderful Sunday morning. And, we took out Vignesh to the beach for the first time today. And, since Vignesh was tolerating PMV well, we din't have to be bothered much about suctioning. The three of us were able to hang out together as a family, finally. Oh, we just realized how we had missed family outings (except the medical appointments) all these months. Just have a feeling that life is slowly limping back to normalcy.

All in a day's work

There was a time when any misplaced thing in the house would irk me and I would totally freak out when the house was untidy. That was past. Now, just look at the mess that my son has done! It does not freak me out. It just makes me proud!





And, he moved (with a combination of scooting and back crawling) on his own to the TV cabinet, pulled things out and threw them all around him. I thought I had to wait for this until my son learnt to walk. And, I was so excited to see this for the first time:



No wonder he gets so tired after a busy day