Sunday, 13 May 2012

Happy Mother's Day

Yeah, I wasn't gonna let this day pass without saying Happy Mother's Day to everyone.  I hope you all had a great day!  I have to post my favorite mommy "poem" feels especially poignant after the events of this past year (and TRUE)

Before I was a Mom...

I made and ate hot meals. I had unstained clothing. I had quiet conversations on the phone.

Before I was a Mom... I slept as late as I wanted and never worried about how late I got into bed. I brushed my hair and my teeth everyday.

Before I was a Mom... I cleaned my house each day. I never tripped over toys or forgot words to lullabies.

Before I was a Mom... I didn't worry whether or not my plants were poisonous. I never thought about Immunizations.

Before I was a Mom... I had never been puked on, pooped on, spit on, chewed on, peed on or pinched by tiny fingers. I had complete control of my mind, my thoughts, and my body. I slept all night.

Before I was a Mom... I never held down a screaming child so that doctors could do tests or give shots. I never looked into teary eyes and cried. I never got gloriously happy over a simple grin. I never sat up late hours at night watching a baby sleep.

Before I was a Mom... I never held a sleeping baby just because I didn't want to put it down. I never felt my heart break into a million pieces when I couldn't stop the hurt. I never knew that something so small could affect my life so much. I never knew that I could love someone so much. I never knew I would love being a Mom.

Before I was a Mom... I didn't know the feeling of having my heart outside my body. I didn't know how special it could feel to feed a hungry baby. I didn't know that bond between a mother and her child. I didn't know that something so small could make me feel so important.

Before I was a Mom... I had never gotten up in the middle of the night every 10 minutes to make sure all was okay. I had never known the warmth, the joy, the love, the heartache, the wonderment, or the satisfaction of being a Mom. I didn't know I was capable of feeling so much before I was a Mom.

We have continued to nurse our sick kids over the weekend, and unfortunately mommy joined their ranks.  I am on the mend, and Jack seems fine.  Poor Natey.....he is having a really rough time with augmentin.  He is barely eating and has the worst diaper rash EVER.  His bum is mommy's new project (please see poem above).  I just can't stand seeing my poor little guy in pain....he is pretty tough in general, so I know this must really hurt!  I am going to ask if we can switch antibiotics tomorrow....there has to be something less toxic.  Not to mention the fact that I am walking around with white stains all over everything I own right now (feels like baby days all over again) from the numerous unsuccessful attempts to administer the medication.  The kid is a champion spitter.  I mean, I have resorted to the torture method of  lying him down with hands behind mommy's knees, and blowing in his face.  Result= antibiotics in mommy's face.  I really wish I could just drop an NG tube and get it over with.  So Mother's Day has been subdued to say the least....we were supposed to have brunch with my family and my mother-in-law, but unfortunately we had to cancel.  But I did get some good uninterrupted time with the kiddos....I am working on having Jack "write" all of his thank you notes from his birthday and have been pleasantly surprised by how much easier it is than even doing his valentines were.  A lot of progress in a short time.  I did plant a new rose bush as well today, something I can look at each day and think of my children. 

I am getting anxious for Nate's appointment a Kennedy Krieger this Friday, and then his evaluation with the new specialist the Friday after.  Just a lot going on over here.  Nate has also qualified for a study with NIH....the scientist in me is pretty fascinated by the subject, but I need to decide if it's advantageous to him to participate.  The study criteria is of course based on diagnosis, but also on head circumference, and whether there was rapid head growth early in life (more than normal I should add since all babies have big heads).  OK, if anyone who has known my husband for a long time is reading this, they are laughing right now.  It is a family joke that he has a large noggin.  From the day that we told people we were pregnant with Jack he was nicknamed "little big head".  Self fulfilling prophecy....Nate's head circumference is in the 99th percentile.  Ouch, right?  The theory is that the brain of an autistic child actually grows more rapidly than that of a typical child.  Thus far, studies have shown significant growth in cerebral volumes, but not cerebellar.  I have no idea what this means, but it's interesting for sure.  

So, why not right?  I mean NIH is pretty close....oh wait.  There of course is a catch.  Even though the study is through NIH, the partnering facility, which is conducting all of the field work, is Cleveland Clinic.  Travel for studies was not on our agenda.  They will actually pay for our lodging, I just have to decide if it's worthwhile to go, stress Nate out, miss work, miss school, etc.  It sounds like there would be genetic testing as well, as they asked if his father and I would be available for blood work. They would provide us with a detailed report after the full day of testing as well as treatment recommendations.  Yeah, I am convincing myself to go right now just in writing this.  I just hope that someone we are seeing or about to see has something new and effective to offer Natey.  We need some progress, the whole family does.  

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