Grins, Giggles and The Graff's: April 2010

The other night when I was sick with strep throat I decided ice cream would make my throat feel better. So I had coffee ice cream made by Starbucks at about 8pm. Next thing I knew it was 1am if not later. I don't drink caffiene, ok ok very rarely do I drink caffiene. I never even thought about the fact that coffee ice cream is essentially made from espresso beans as I found out the next day when I looked more closely at the ingredients. Anyway, the point is I could NOT get to sleep. My mind wandered but not about the usual stuff like work or the 80 things I need to get done. I thought about something I had written months ago on Facebook in my notes regarding Kendall. Someone had said something to me that struck a major nerve at the time. So, at that time, I wrote this:

3 words.......

3 words keep ringing in my ears over and over again. It's been 48 hours since 3 words were uttered to me. It's been 2 nights of little sleep because these 3 words hurt me so much and brought back the worst memories I have ever had. These 3 words have literally made me sick to my stomach for 48 hours now. "Get Over It". "Get over it" is what an acqauintance that I have known for 5 years now, who is also a mom of special needs child, said to me when I vented about being frustrated at times with raising Kendall, my own child with special needs. I keep wondering what part of me raising Kendall does she expect me to "get over"?

I think it must have been the time right when Kendall was born when one of the NICU doctors told us, "Stop pestering me" while we asked her questions about what may be wrong with Kendall.

Or was it the time that the NICU nurse told us to "Enjoy her while she is here" because they didn't know what was wrong with her yet and were assuming that she was going to die?

How about the multiple times we had to have her sedated for hearing tests only to discover she is profoundly deaf in her right ear with a mild loss in her left ear? And how about the hours and hours we spent learning sign language so we could communicate in some way, shape or form with her. What about the fear I have that goes along with this, the fear of her never being able to talk well enough to live an independent life later on or the fear that she won't be able to sign well enough to communicate with those that know sign because her fine motor skills are weak. Do I just "get over" that?

Was it the time when Kendall was 12 months old and we had to hand her over for surgery that lasted 9 hours. Surgery that involved cutting her head open from ear to ear then sawing a bone in half and putting a spacer in it to keep the bone from re-closing too early. A surgery that required her to have a blood transfusion and also made her forehead swell so bad that her eyes swelled shut for 4 days? Surely, I'm not suppose to "get over" that?

Was it the few times I had to get the last appointment of the night at Packard for Kendalll so that I could sit next to the CT scanner and rock her to sleep, praying that she would stay asleep the entire time they needed to perform the CT scan(s)?

I know I know, it was the multiple times that I had to pin my own 2 year old daughter down to insert an NG tube up her nose, down her throat and into her tummy in order to hook her up to a pump at night to feed her while she was sleeping because this was the only way we could get extra calories in her. And while inserting the tube, making sure it ended up in the correct place and not in her lungs because if it were an inch too high it would be in her lungs and she would aspirate. Doing all this with a happy face on so that Kendall wouldn't see how terrified and horrified I was that I had to do this in the first place and because I didn't want to scare her anymore than she already was. Get over that?

Was it when I had to deny Kendall's request for food as she signed milk, crackers, water and eat to me 24/7 because she had surgery on her stomach that didn't allow her to eat or drink for 12 days straight? Did she even rememeber when I told her about how that was one of the worst moments in my entire life? Did she mean "get over" that?

Maybe it was during the surgery on her stomach when I watched the bright light of happiness and warmth in Kendall's brilliant sapphire blue eyes fade after being poked, prodded and stuck daily for blood draws for almost 2 weeks straight as she wasn't able to say no or stop or this hurts so bad why are you doing this to me?

Did she expect me to get over and forget what it felt like to hold Kendall when she had lost so much weight because of surgery that she was down to 18lbs when she was 3.5 years old? Did she think that seeing my little girl so weak and just skin and bones with no meat on her was something that wouldn't forever be locked in my mind?

Did she expect me to not remember watching Kendall struggle to breath because she had pnuemonia so bad after that stomach surgery that it caused her lung to collapse?

Perhaps, she was wanting me to get over the total number of surgeries, that would be 6, that Kendall has had in her almost 6 years of life.

Was it the hours upon hours of sitting through physical, occupational, equine and speech therapy sessions hoping they would help Kendall get stronger or get that first word or those first few words out?

I guess she may have wanted me to "get over" the first year of Kendalls life when all I did was cry and cry and cry because I was so upset that Kendall wasn't born a "typical" little baby girl and that instead of enjoying her as much as I should have I was too stressed out and hardly enjoyed her at all. That first year was spent waiting to see what she would do and when and if she would do it. The doctors never gave us high expectations, they said everything would be wait and see. Imagine, spending your time just waiting with no answers.....just waiting to see what type of life your child was going to have.

Did she want me to get over the pure excitement I felt when Kendall took her first steps at 2.5 years old? Or how about the time Kendall first said "Mommy" which was when she was about 4 years old. Wait, she must want me to also get over the first time Kendall said I love you when she was 5 years old. Am I suppose to just erase the happiness I felt when she finally did all of those things?

So yeah, those 3 words are still ringing in my ears. Never in my entire life did I think I would hear someone say that to me. It caught me so off gaurd. Did she really think I could "Get Over It"? And if she really thought that and she had gotten over her own emotions regarding her special needs child how did she do that? I don't think it's possible to get over something like this. It's the core of who I am now. You can pull yourself up off the floor and out of a funk and move on but "Get Over It"? Next time I vent about a frustrating day I have with raising Kendall maybe, just maybe, she will realize that it's not just a vent it actually has all of the above plus SO MUCH MORE tied into the vent and you can't just "Get Over It". Trust me I have tried!

I'm not re-posting this for any other reason than the following:

I had never really thought about all I(we) had been through with Kendall. I took everything we had been through one day or moment at a time because that is all I could do at the time and once that moment, surgery etc was over I typically didn't talk about it again. Although I am an open book when it comes to Kendall, I don't talk a lot about all it entails or has entailed, especially my personal feelings about it. This was the first time I ever "talked" about EVERYTHING I had experienced with Kendall and the feelings that went along with it. I wrote it all down and it felt like this huge release. So, in a weird sort of way, I am glad that person said what they did to me. It allowed me to get it all out, mourn everything for a couple days because as I wrote it, it felt like I was re-living all those moments again(that's how intense it was writing all that) and move on. If it weren't for her saying that to me I would still be holding all of the above in and what good would that do?? Perspective can be a lovely lovely thing!

I haven't posted in about a month...life happens I suppose. I don't even have anything very witty or interesting to say, I think strep throat is sucking the life and humor right out of me. So for now, here are a few recent pics of the kids!

Here's a little example of how nicely the kids can play together:

And then inevitably someone always gets hurt or in this case upset...notice baby Chasey

Brady jumping:

Did someone call for a plumber?

Kendall really likes to nap but rarely gets to anymore. On this day she had had enough and decided to rest her pretty little head and fell asleep still standing, well half standing!