Wednesday, April 27, 2011


Yesterday was the first day that someone has ever commented on how small  Vada is.

Usually, it's been people saying things like; "She sure gets enough milk.", "She's not lacking in the food department."and "Are you sure she weighs (insert weight amount here____) and not more?"

Maybe I am a little sensitive. I have come to terms that I probably am, actually, I have come to terms with a great deal of things over these last two years.

I think its safe to say that a lot of my sensitivity then (during the seizures), came from fear and stress of the situation that we as a family were in. Maybe my silence towards what others were saying was my way of accepting that they just didn't understand and had no idea that what we were going through, was tough.
When Vada was born she weighed 6lbs-8oz. She was so tiny but by far a giant when compared to all of the other babies who were in the NICU.

Vada only minutes after being born.
Vada's low muscle tone, sweet cheeks and marble of a chin made her seem a little fuller than she really was. However, once she was in our arms, she felt weightless.

I'd like to believe that in general, most people are good and would not intentionally say things to be hurtful. People made their comments about Vada's weight not realizing that I was putting my 7 month old baby in 18 month baby clothes because her head was so swollen from the steroids that she had to take to stop seizures and not because of the abundance of milk she was drinking.

People didn't realize that their comments actually stung more at this point in her life than they did when she was born.  It was on a rare occasion that I would comment on other peoples remarks. There were so many that sometimes it just seemed like an endless battle.

I once read a post from another mother who had gone through the same battle with seizures, steroids and weight gain. She had commented on how there were times where she would throw shocking comments back to those who made rude remarks. Mainly out of pain and in her own words, she would say how these thoughtless people were making fun of a very sick baby. I too have lashed out in such a way on several occasions but it never made me feel better. I didn't like the look of guilt that I saw from the stranger that I had just hurt and I certainly didn't appreciate the pity that came afterward. Eventually, I just smiled because I knew that they didn't know and really what did it matter?

Vada's 1st Halloween ~ 11 Months old

Around 10 months old, Vada was just a couple of ounces off from being twenty pounds and she was only 25 inches long. Looking back at these pictures I don't remember seeing her this way. I knew she had gained, I knew she was swollen but I was with her all of the time. This was a gradual thing and truthfully, her weight was the least of my worries.

Today, the exterminator came. (If we don't spray we get Earwigs and Centipedes and I am scared shitless crapless of bugs that are inside of my house.)  Anyway, he was a new guy and had only been to our house on one other occasion. I was just laying Vada down on the living room floor to play as he was walking in through the front door. He took one look at her and said "Oh, you've got a new one." Justin had begun to walk him through the house and he replied to the exterminator with her actual age, almost fourteen months. The "bug man" stated how little she was and Justin agreed.

I was still in the living room as they were walking away, but I heard the short conversation and to hear someone finally say something other than her being "fat" warmed me up inside. I think babies should have good healthy rolls, but when it's all you hear about it begins to become offensive.

I don't know if this guy had children of his own, but lets face it men are not always the best judges when it comes to babies ages in comparison to their actual size. Vada is a pretty average size now, at least I think so. She is 17 pounds (give or take a few ounces) and she is right around 27 inches. She is wearing 12 month clothes and even some of those 18 month outfits/shirts that she was in months ago now fit her correctly.

The day before her 1st birthday.

She has her face back and doesn't look so uncomfortable anymore. She still has some baby rolls, which I think are fabulous and she still loves her milk, but now she is just more the size that she should have been. I am so grateful to be past that time. I pray everyday, sometimes several times a day, that we don't have to go through that again and I thank God for Vada's good health in the area of seizures.

Vada  on Easter of 2011

Ive learned a couple of things about the words we (the world in general) allow ourselves to say. In reference to babies I never refer to the baby as an 'he' or a 'she' if I am uncertain. I once had a elderly woman tell me that Jasmine, who at the time was in a pink dress, was a cute boy. I wont make the same mistake. Instead I ask the baby's name or I keep quiet until I know for sure. I never say a baby is cute if in my opinion he or she is not, because not all babies are cute and I don't say how something else on the baby is cute to deflect what I am really thinking. Mainly because I have had to endure quite a lot of that and you can tell that the person is searching for something to compliment on. Lastly, I never comment on a baby's weight. Too small or too big, you never know what the reasoning behind the situation and you never fully know what a person is going through.


Annie @ The House That Jade Built said...

she is SO cute and I mean that :) I also adore every roll she has! My babies never have rolls :( I'm so glad she is doing well and pray about her seizures often! She's spectacular n blessed to have you as her mom!

I'm getting a lot she's really tiny right now! What do you say?!? It makes me uncomfortable.

ch said...

Well, clearly the appropriate response is, "She's naturally thin like her mother." And I can't tell you how many times i talked myself out of buying that sweet bubble dress that Vada is wearing. Oh, I wanted it so badly and had already purchased two. I'm an Easter dress neurotic. I absolutely love it.

And don't sweat the comments...I was constantly being told my child was too small to be out in public places...when they were FIVE months old. So I just whispered to myself that some people are too tactless and stupid to be in public places and went on with my day. Vada is perfectly lovely and has earned every roll she's sporting. It will be so fun to see how she responds to her healthy ticker.

Anonymous said...

I just found your blog and want to tell you how beautiful your baby is, this post is a good reminder for us all.

Erika said...

Hi! I just found your blog and spent the last hour reading through and "oohing and ahhing" over your little Vada. I don't want to act as though your family hasn't looked into every treatment for IS, but I wanted to mention, just in case you hadn't heard of it, Pyridoxine Dependent IS. A little girl I worked with was dealing with IS and had treatment with ACTH and was in the initial Vigabitrin studies. Though they seemed to have an impact on the frequency of her seizures, they didn't eliminate them. Within 4 days of starting on Pyridoxine (vitamin B6), she had stopped seizing. I know different approaches work better for different kids, but I just wanted
to bring it up as a possibility if you hadn't heard of it before.

Lacey said...

I think Jax had the easiest time with ACTH! He didn't get big or cranky. It didn't work though!
I also remember him being the biggest baby in the NICU!!

Twilson9608 said...

Annie, I agree, some comments do make you uncomfortable and they leave you with a feeling of not knowing how to react.

Ch, I love your comment "I just whispered to myself that some people are too tactless and stupid to be in public places and went on with my day." Love it! I often forget that its not me but them that has the problem.

Erika, I have heard of the B6 treatment method. Right now V is not having seizures. It seems as if the ACTH did do the trick and for now with the maintenance drugs they are being controlled. Thank you for the advice, IS is hard to control and is something that you have to be aware of for many years because the seizures can reoccur at any time and for any reason when the child is so young. So even though we have stopped them now, they may return and any suggestions on controlling them are welcome.

Lacey, I have heard that from many parents. Its crazy how the same thing can be so different from one child to the next. I am blessed that Vada's temperament through the whole ACTH treatment was very easy going. She was and always has been such a sweetheart.

Sarah said...

I just had to comment after this beautiful, honest post.

Vada is withoutbeautiful. She's one of the reasons I lurk on your blog-just to see a glimpse of her precious little face. I am in constant awe of your beautiful, happy family.

My family is a little different as we are a family brough together by adoption One of our children is not the same race as my husband and I are and we do deal with (now) minor special needs. We get the rude, insensitive comments pretty frequently too. I agree that replying with an intentionally rude comment back has never made me feel better. I have learned to use the comments to educate people (whether they want to be or not);).