Proud Of Our Tubie

          I sit here laughing because the gauze came off Liam's gtube and he came and showed me. "Mom mom" he said as he lifted his shirt and pointed to his button. "It's ok Liam your fine" I said. Then he goes and shows his dad "dad dad". "Liam put your shirt down no one wants to see that!" I told him playfully. You see Liam is very proud of his button. So proud he will randomly pull his shirt up and show anyone including strangers. Of course it doesn't effect us because we are used to it. But Liam does this for a reaction so we tend to play with him a little.

          We playfully crunch our noses and in the silliest voice we say "eeewww Liam no one wants to see that but that thing away" and we proceed to tickle him and we all have a good laugh. This is what I did tonight, only as I said this Lanie walked into the room and says "eeww" because she plays the game as well. Only this time Liam runs toward her with his button in plain view laughing every step. Lanie gives him one of her fake screams and then proceeds to 'run away'. Liam starts laughing harder and chases after her. They ran in circles around the living room laughing until they couldn't breathe. Now you have to realize that Liam is a boy who spends 90% of his time in just a diaper because its hot and that just how he likes it. He is very proud of his button and he also enjoys these games we play.

           None of us are grossed out by it in any way at all. In fact these games are what helped him be ok with it because we turned him showing it off into a joke. We take the feeding tube itself very seriously. We never tell him its gross. We only joke with him in a way he gets. The "eww nobody wants to see it" always comes with smiles, tickles and laughter. The feeding tube saved his life and is allowing him to have a more "normal" life.

          Without the feeding tube I don't know that he would have lived to see the age of three. How long could he go on TPN without being a shadow of yourself? That would have meant growing up in a hospital completely. With the feeding tube he gets to do what other kids his age do. He gets to play and run and experience all that any other kid his age gets too. Sure we have to wrap his stomach with an ace bandage at times so that his Gtube doesn't get pulled out but it's all worth it.

          Liam gets to start pre-school this month. He gets to play in sand, go swimming, swing and climb. He gets to laugh and run and grow. With the feeding tube he's finally thriving. He's finally doing well. Sure it was rocky there for awhile but now his feed is dialed in and he's growing. So thank you to the Ancient Egyptian's who started finding alternative ways to feed people who couldn't eat the traditional way.

The following are pictures from Liam's Feeding Tube Journey:

Shedding Light

This article is so very true. Parents of a special needs child (sometimes even whole families) are exhausted almost all the time, mentally and physically and emotionally. Parents of a SN child know more about their child's diagnoses than even the doctors. I have done so much research on Liam's diagnosis than I can even begin to explain to you. Every month or so I re-research everything on the off chance there is new information. SN parents minds are always busy. I know mine is. "What time does Liam need a time feed?" "When is his next dose of meds or breathing treatment?" "What PT aspect do I focus on today?" "What appointments does he have today or comming up this week?" It's never ending. My brain is always consumed with thought on what my son needs. It is so consumed I forget things for myself. Since last Friday I've missed two doctor appointments for myself. Pretty important appointment to get results of an ultrasound and X-ray I had. I forget to call my friends and family back. If it has nothing to do with Liam's SN I forget to do it. He is the most cared for person in this house. And I know that it's not always fair. But it's what it is. The most important one to be (yes even more than being exhausted) is that SN parents are lonely. It's a very lonely journey. I went through 2 years and 9 months so far (that's how old Liam is) without having anyone to talk to. No one wanted to be around and see my son so sick. I understand they didn't want to experience that but did I want to experience that? And did anyone once think how it was for me to sit alone in NICU or any other hospital stay? Did anyone think about the phycological damage it did to me to want my son almost die on many occasions or to have him turn blue the very first time I held him because he wasn't getting enough oxygen? Nope. It never crossed anyone's mind. I'm not whining and complaining but sharing a truth that is so taboo to so many out there. This is the life. My life. Liam's life. I'm shedding more light on this article by sharing my thought, feelings and experiences. The only constant through all this was Liam. He was the only one always there but he was the one who was always sick. I would sit in his hospital room for hours when he's sleep and just stare out the window wondering "why us?" And "why do I have to do this alone?" That hurt almost as much as watching Liam fight for life. Being a special need mom I smile to hide the pain. No one wants to see you depressed, exhausted, or know anything about this. We have more bad nights that someone with a newborn. Emotional we can be unstable. I hold it together with my fake smile daily because when you can't you get criticized. You wear sweatpants out in public to pick up your older child from school, don't have the energy to put on enough make to cover the dark circles under your eyes and the world comes crashing down on you. This is life. Real life. http://m.voices.yahoo.com/5-things-know-parents-children-special-11493864.html

#specialneeds #parent #kid #mom #cdh #chroniclungdisease #gtube #tubefed #failuretothrive #gastroparises #life 

      {photo of Liam today in the car. He took his shoe and sock off and put all his toes in his mouth. Why? Because he was bored waiting for sister to get out of school. This is life.}