Ode to Early Mornings .........

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Insomnia kicked my butt until about 2am ...  er... sometime between 1 and 2 anyway.   3:30 am, Kaedyn starts to scream....... his paci fell out of his crib, and being in baby jail with no gum and a stick, or being given the gift of elastic arms...  he couldn't very well reach it himself!  4:30 am rolls around, Nathan is awake, walking into our room crying...... he's awake.  Went to bed (on the couch) early last night because he didn't get a nap, and didn't wake up for a couple hours before going back to sleep last night - so it was a 4am wake up call for me!  YAY!

............. and if you believe that excitement, I have a bridge I can sell you in Egypt ... 

I had a long night of insomnia ..... see....  I have this obsession with torturing myself with shows I know will either rip my heart out and make me bawl, or grasp my heart.  Even shows that ..... I know the feeling of THAT Mom and/or Dad........

I know the feeling of being told your child would not survive a pregnancy...........

I know the feeling of being told your child WILL die.......

I know the feeling of grasping onto every straw of HOPE that you can .......

I know the feeling of scouring the internet for EVERY possible ounce of information on a rare medical condition......

I know the feeling of reading outcomes, of parents going through something they should never have to face, burying their baby, crying hysterically, and knowing that could be YOU ...........

I know the feeling of not wanting to buy anything for a baby you might just not bring home, because when you come home without the baby in your arms, you don't think you could take THAT reminder .........

I know the feeling of having a baby that is so tiny with no fat on it being placed into your hands... with big neon signs going off saying "I'm Yours! Now What?".........

I know the feeling of witnessing a miracle happen..........

I know the feeling of "HA, you were WRONG, DR!" ..........

I know the feeling of watching a child you were told would die, be so bad off, wouldn't have a life outside the womb ... beat every odd he was given and survive.............

I know the feeling of going through another pregnancy and seeing the same "signs" .......

I know the feeling of confusion when you are faced with a pregnancy much like the last one, where you were told the baby would die but you aren't being told that this time.... maybe because they don't dare?? .........

I know the feeling of finding NOTHING but bad outcomes on the internet as you scour for information on a NEW rare medical condition that you can't TAKE reading anymore......

I know the feeling of being in the NICU a second time with an extremely tiny baby, of helping your husband through it, because it's his first time and you are the pro .....

I know the feeling of having to tube feed your child because he just can't seem to do it on his own.....

I know the feeling, the frustration, of watching your child NOT GROW despite EVERYTHING you do.... 

I know the feeling of having more medical issues piled upon piling upon more piles of a little guy who stands up and handles it all with a smile on his face........

I know the feeling, of wondering, what EXACTLY is going to be in store for your child.........

It's not easy....  this day to day stuff you do to get by, it's always a sliver of a thought in the back of your head. It's always an instant panic the second your child gets sick.

Two nights ago I watched The Mermaid Girl's last 6 months and it broke my heart to see ... she had such a strong spirit and such a wonderful outlook on her short life.  A lung infection swept in and stole it all away.  Her parents left shattered and broken because she was their WHOLE life... 

Last night I watched the updated story on Kenadie.  She reminds us SO MUCH of Nathan.  SO MUCH!  She's smaller then Nathan, but it amazes us.  To the point where Dennis insisted that I write down the names of the DRs and Medical Center.  I have decided I want to get the family to THE LITTLE PEOPLE OF AMERICA CONVENTION in 2010.  I feel the NEED to go.  I learned something last night, I didn't know, with all of my research I do.  Russell Silver Syndrome - that we're pretty sure Nathan has - is not just a "type of dwarfism" but a type of Primordial Dwarfism.  He even fits into the MOPD Type II that Kenadie has, but not as well as the R.S.S. 

Nathan looks BIG on pictures, but I can't stress enough how tiny he really is.  Nathan gains about an ounce a month, that is it, if we are lucky.  He will be 3 years old in April and we're lucky if he's topping the scales at 18lbs right now.   My best friend came not long ago and Nathan was sleeping on our couch when she arrived with her crew ... and she looked at Nathan and said "Oh my GOSH he's so TINY!" ... she told me that pictures in no way show how tiny he truly is.  Nathan draws attention.  Not a lot right now because he's pretty proportionate and just looks like a baby, but enough that I am constantly answering questions.  Usually it starts out with "are they twins?"  

No no, they aren't twins ....

REALLY?

(No I'm just telling you that to confuse you, YES REALLY!) ....  No they are 16 months apart.

Then they immediately play the "who do I think is older game" and after looking for a little bit, realize Nathan is older. 

See what happens when I can't sleep???  I start THINKING...........

................. Thinking is bad bad bad ........