The Timehop Perspective

It's hard not to campare today to the past when timehop lays it all out there for you to see. As time passes you tend to forget things...or in our case, we wish we could forget things. Timehop is just another tool I use to remember how bad things used to be so that I can be greatful for what today brings. I calm it the timehop perspective because it changes your outlook. Take for instance:

This was Liam 3 years ago today. I was trying to wake him up to get his feeding in. He was still eating all by mouth here but he was eating less and less. We had already gotten the news that he was failure to thrive and would be getting a feeding tube. I was still fighting and killing myself to get these feeds in him to prove that he could thrive and that we didn't need a tube. No matter how hard I tried to wake him up he just wouldn't. The few times he did wake up he ate just a tiny amount before falling back asleep. 

Tube feeds make me so angry and frustrated, at times I want to throw his pump through a window or wanna scream because Liam refuses to eat. Looking at this picture reminded me of how hard it was to get him to eat as a baby. How he literally could not stay awake to finish 1/4th of the bottle. He slept all the time. He started loosing weight. It got scary. If it hadn't been for the feeding tube, Liam would have wasted away until one day his body wouldn't have been able to fight anymore. I'm just gonna say it how I'm thinking it, "damn am I greatful for that feeding tube". Yes. It's true. My son had survived CDH, there was no way I could have let him loose the battle just because he couldn't eat enough. 

I've met many people who look down on me because I "let" my son get a feeding tube. People who blame me, saying I didn't try hard enough. You know what I have to say to those kind of people? You obviously haven't walked in my shoes. You obviously weren't there through my alarm going off every hour so I could spent 30 minutes doing everything I could to wake Liam up to feed him. You obviously weren't there to see how I hardly ever slept because Liam's needs were bigger than mine. You didn't sit there holding your baby crying because you knew if he didn't eat it would mean very bad things. You weren't there when I begged and pleaded with the doctors to give him more time to prove he can do it. Ypu weren't there when they explained that there wasn't anymore time left and that if they didn't do it soon things would get ugly for Liam. You weren't the one that felt defeated and like a failure. Nope you weren't there so don't judge me, my family or tell me how the situation is supposed to be handled. 

My unsolicited advice to you is to think before you judge the situation.

I love my son and have always had his best interest at heart. I would never do anything that would cause him harm. I only want his quality of like to be better. He doesn't deserve to be on quarantine in fall/winter/spring. He deserves happiness and to experience life. He deserves trips to Disneyland I'll probably never be able to afford, to be able to walk through a crowded mall without getting sick, to go to the theaters and watch movies. He deserves long trips to the beach to laugh and feel the sand in his toes and eat fish and chips. 

Liam deserves to be a kid and not a patient. As each year passes, I see him getting closer and closer to this goal. It's amazing and wonderful. I may not be able to take him to Disneyland but I can shower him with my constant, unwavering love for him. 

If there's one thing I learned on this journey, it's that love is important. You must surround yourself with love and those who love you. That's what makes life special and amazing. That's a life worth living and we've got plenty of love.