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.

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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

     just

            feel

                  alone

                         and

                              terrified

                                            that

                                                   I

                                                 

                                                       c

                                                        a

                                                          n

                                                            '

                                                             t

  

                                                               f

                                                                 i

                                                                   x

                                                                       h

                                                                         i

                                                                            m.