OCNJ

Ocean City New Jersey 6/20/12

Day trip with Darlene.

Kids were Angels!!!

Manco & Manco's :(

I've never seen OCNJ so empty... it was nice!!

Fantastic Night

Last night was such a fantastically fantastic night!!  I am sooo loving having off every other Fri and Sat night!!  Jason made us a pancake, fruit and bacon dinner and then we all headed out to the front yard for HOURS.  When Jason asked Jackson if he wanted to go on the tractor (riding mower) he started freaking out with uncontrollable excitement!!  And off the boys went... riding all around the farm for close to an hour!  Jaylee went straight to her climbing tree where she loves to hang upsde down.  I pushed Jennibelle on her swing, where she also spins until she beyond dizzy. When it was Jennibelle's turn for a tractor ride, Jackson (of course) freaked out with squeals of UNhappiness!  Jennibelle got to learn how to stear the tractor all around.  They even came face to face with a deer down by the stream.  Jaylee enjoys riding the tractor around the yard completely by herslef... cool girl!!  We all worked together to hang another swing from the tree, while we were surrounded by MILLIONS of lightning bugs, as the sun went down.  

Defeat

Defeat

N. The feeling of complete dispair when the kidney doctor hits you with reality.

N. The awful gnawling sensation in the pit of your stomach.

N. Failure.

V. To have your son deprived of a healthy, normal life.

***************

Nephrology appt did not go so well today... I am sad, I am tired, I am lonely and I am scared.

Oh yeah... it was Jackson's appt...

well, he is ... the same as he's been (cuddly, funny, snuggly, independent, and more)!!

Now... back to me!!

There's no new news (creatnitne is still WNL and US showed no changes), and there's no real bad news to share...

we know he keeps getting infections and we know they are not good for his poor little kidneys and we know that it takes a lot for him to recover and we know that he has fluid-filled kidneys and we know that he has injured kidney tissue and we know that he would have more issues as he got older... WAIT... No, I was living in complete denial and I did NOT know that he would essentially outgrow his kidneys.  Apparently, we've been told before that his kidneys will only last for the first 10 years, but today I really heard it.

So, I am now faced with this aweful truth... in a few short years, we will not celebrate that Jackson is getting taller and bigger and maturing... we will be secretly wishing for him to stay small and tiny and not to require more from his kidneys than they can handle.  He'll be blowing out candles and we'll be cheering, but at night, I will be burrowing into my husbands large strong shoulders grieving.  Grieving the death of his independence, the death of his health, and the death of our life as-we know-it.

The more birthday parties we have, the closer we get to him feeling like crap, as his kidneys shut down and his body fills with toxins.  The closer we get to him being hooked up to dialysis machines for hours a day, 3 to 7 days a week. The closer we get to no longer being able to vacation, or even get up and go when we want. The closer we get to me not being able to work b/c his care will be even more of a full time "job". The closer we get to one of us laying on a cold sterile operating table giving him a piece of us, so that he can start a life of multiple anti-rejection meds.  The closer we get to keeping him and the girls holed up inside so that he is not exposed to more illness, as the anti-rejection meds shut down his immun system. The closer we get to never having any sort of financial freedom, as insurance only cover anti-rejection drugs for so many years. The closer we get to the unknown.

I don't know where I've been the past few months... I guess when you are terrified, you truely can manipulate your reality.  I know that I want to go back to where I was this morning before I left the house.  I want to go back to my bed, where I was snuggled up warm next to Jason. I want to go back to when I didn't question God - or his existence.  I want to go back and back and back and back.  But it's not an option... you can only wallow in self pity for so long. So, I guess I should keep going forward... learn to face theses fears head on and learn how to make the best of it. And please... do NOT tell me that I shoud be thankful, because I've had more time with Jackson then I was supposed to get anyway... I does NOT make it better... I love him more today than I did while pregnant.  And I don't love him near as much as I will tomorrow.  It's not a cliche song... it's life.  Losing a kid sucks... knowing that you are going to lose him - and slowly, sucks even more..  I know we all die...

I

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                         and

                              terrified

                                            that

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Mrs Meg Heller

I seriously can't believe it's over... It's like Christmas morning... All the preparing and money spent... And it's just... OVER.  It was fun, the day was beautiful and hopefully it was everything that she dreamed of!!

We did decide that our kids will elope. Short, simple, to the point, & cost effective. I just keep getting cheaper and cheaper!!!! Who knew that was possible?!?

Jennibelle was a flower girl, Jaylee was a junior bridesmaid and I was the Maitron of Honor (sounds like an old unmarried hairy woman, doesn't it... "Maitron"?!?).

The day went off without a hitch... Gorgeous weather (sunny and 70), everyone was healthy (Meg ended up getting the belly bug 4 hours after the reception ended!!) and everyone looked great - Especially Meg. "Amazingly Gogeous" does not do her justice. She was all smiles and glowing.

We spent Friday afternoon getting our nails done and then had the rehearsal stuff that evening. Saturday morning we all met at Meg's salon and got our hair and makeup done. Meg ended up doing her own hair... again, gorgeous!!! We all got dressed at our house and then the Limo arrived - it was our wedding gift to Meg.  It was a fun ride... we had a few toasts and the little girls were in awe!!

Jaylee was the first one down the aisle and everyone said she did great!!  Jennibelle totally nailed her flower tossing for this wedding. She and Morgan went together and it was too cute!  At the end of the ceremony, George's youngest brother almost passed out, so Jaylee had to walk out alone. (She didn't mind... she wasn't excited to link-arms with a boy anyway.) Then we were off The Country barn for the reception.  

We spent a very long time doing pictures outside and then Meg and George performed a choreographed dance and we ate.  Dad pre-recorded their Daddy-Daughter dance song!!  The cake was cut early so the dancing could begin.  Not too many people stayed to dance, but Jennibelle COMMANDEND the dance floor.  She was actually taking the spotlight away from Meg!!  (I know this b/c Jennibelle told me this a few times, haha!!)  She was dancing with all of the girls from Meg's salon and even tried the worm, when the groomsmen finally tried to dance! It was priceless.  Debbie Gerovasilis watched Jackson for the day and then came and drove us all home... she's the best!!!

I took almost 300 pics, here are my favorites from the day...