From the time I found out I was pregnant with Trek there was something very special about our connection.

I enjoyed my pregnancy with him to the ultimate fullest.

I spent the entire 40 weeks in a bikini laying on the beach in Maui. I loved my full stomach and the warmth of the island sun on my skin and I knew he could feel it too. Peyton and Conner would cruise with me in our mini van with our windows down singing Jack Johnson-it was so magical and I remember every moment.

Then Trek gave me the greatest gift. A quick and fun birth right in our driveway. His daddy got to catch him and his brothers were there to meet him shortly after he came out. It was so special and I got the homebirth I thought I would never have. (his birth story here)

Now I have always tried my hardest to not let any of my babies cry. I fed them  on demand and they all 3 slept cuddled by my side all night any time they wanted. But with Trek it was different. I had no idea what was hiding inside of his beautiful little body, but I think somewhere very deep I knew something.

My house since Trek has been born has been a wreck!!! and I can’t remember the last time I cooked a meal. My sweet baby needed me constantly, and I was so happy to oblige. That was a big disicion in deciding where we wanted to move, we chose Thailand so I could afford a maid!

When the big boys were babies and started to get bored or fussy I would distract them with a toy for one more minute while I finished dinner or took a quick shower. But not with Trek. I always told Jarrett that it was different-it was like I was his lifeline. My only choice was to scoop him up and feed and cuddle him. It would break his heart if I even waited 10 seconds.

He is my little roo. He is happiest when he is snuggled on my shoulder or wrapped snuggly in a baby carrier. I can always tell just what he needs and what makes him happy. This is why I am so scared right now. I don’t want that to go away.

We talked to the doctor from New York that is the expert on Neimann Pick Type A and she explained that around 15 months old the baby will begin to loose skills and be less aware of his environment. Please pray that until the very end my mommy intuition will know exactly what he needs so I can help him best.

Jarrett and I have been staying up late talking, researching, crying, planning, and sometimes laughing when we glance down and see how cute our 3 boys are-we really are so blessed.

It is horrifying planning for your child’s death. It is one of those things you sometimes imagine then dismiss quickly because it is so painful and scary. It is so much worse than I ever thought. But it is our reality and we want to get all the awful details out of the way so we can fully enjoy him in the next few months.

We are certain that we don’t want to use any interventions. Jarrett promised Trek that no one else would hurt him the last time we were at the hospital and we fully intend to honor that promise. When his little body tells us it can’t work anymore we are just going to keep him pain free and comfortable.

The doctor suggested in a few months that a nurse come regularly to teach us how to help him be happy around the clock. We know this might shorten his time with us, but we want everyday he is alive to be wonderful and at home where he is loved most.

Please, please keep continuing to pray for us. We have so many choices to make.

We have never been on a family vacation, so we are planning one now. We are so excited to make even more special memories with our sweet baby.

Thanks again for all of the love and support. When I am feeling hopeless I get on the internet and read all your sweet comments and I feel hopeful again.

lots of love-xoxo