It is in your moments of decision that your destiny is shaped. - Tony Robbins

This doesn't happen often, but every once in a while, I have a sad moment. Today...yeah, I had a sad moment. It's not often that I feel this way because the truth is our family has been blessed beyond measure to have X with us. When you spend 3 months on a nearly daily basis watching your child walk all the way to death's door and wonder if they'll come back to you or not, you don't take your child for granted. Actually, you don't take anything for granted anymore. 

Then these sad moments hit and I feel selfish for having them. Honestly, what do I have to be sad about? X is alive. He's healthy. He's exceeding expectations. He's making gains on a regular basis. He's happy. So why am I sad? 

Maybe it's the stares from other people. I'm sure they don't mean to express pity, but sometimes that's what shows on their face and in their eyes. Pity that our child is different. We know he is...but that isn't what we see. 

Maybe it's the huge stack of paperwork I still need to do. Truth be told, the paperwork never ends and sometimes I just don't have the mental energy to deal with another form to fill out.

Maybe it's seeing X come home from the hospital looking like he's been starved because he felt so bad he couldn't eat for several days. To see your child's ribs so clearly defined that they look like nothing more than a skeleton is sad. Yet, that's what he looked like after surgery. He's slowly regaining weight, and his ribs no longer poke out...but that's not an image you quickly forget. 

Maybe it's a culmination of months and months of very little sleep. In order for X to keep his weight up enough, he has to be fed every 4 hours around the clock. He has had to be fed around the clock his entire life. I don't mind taking care of him because that's what he needs. Yet some days the exhaustion hits harder than others and everything makes me a teary-eyed. 

Maybe it's knowing the hell my baby has already been through in only 20 months of life...and knowing that in order for him to have the best quality of life in the long run, I have to send him off to surgery again in just a few more weeks. That decision never gets easier. Handing him over to surgeons never gets easier. It actually gets harder as he gets older. 

Maybe it's knowing that the decision to proceed with surgeries he needs will cause him to experience weeks of high levels of anxiety and PTSD-type symptoms...and also knowing that there's very little we can do as his parents to comfort him. We can be here and hold him and cry with him...but we can't fix it no matter how much we want to. 

Maybe it's months at a time of remaining home-bound to protect X from all the bad respiratory viruses that would easily hospitalize him for weeks or months. For about 9 months out of the year, X and I go no where except doctor's visits. We stay home together. I do love spending that time with him, but after 9 straight months of only seeing the inside of our home, we both long to get out and just have a normal life. 

Maybe it's knowing that because of things outside of X's control, there WILL be people who stare, point, laugh and tease him. It's just a matter of time. It's incredibly hard to have to already be thinking of ways to explain to your child that some people just don't know better...that they're afraid of what they don't understand...that he's not the one with the problem...and knowing that no matter what I say to him, his feelings and his heart will still be hurt more times than I'll be able to ever count. I can't prevent it, I can't ease the blow for him. All I can do is be his soft, safe place where his tears can be wiped away and more invisible bandages get placed on both of our hearts. 

Maybe it's the unknown of X's future. Will he be able to care for himself as an adult? Will he be able to work to support himself? If not, who will be there for him when we aren't around anymore? 

Maybe it's all of this combined...all of the things I don't think about every day because frankly it's overwhelming to think about any of this in depth. 

Then I hear X's sweet little voice over the monitor as he wakes up from his nap: "Hi, Mommy! Hi! Love you! Hi!"

At that moment, I wipe away the tears, I put a smile on my face, and I go snuggle my precious boy again. I will hold him a little longer than necessary. I will sing with him, play games with him, tell him over and over how much I love him and how proud I am of him and at the end of the day I'll let him fall asleep in my arms and hold him til I physically can't anymore. I will be grateful for every good moment because those moments......

Those are what get me through the hard moments. 

Surgery is DONE!

Last week, X had his big surgery day. He was SUCH a trooper leading up to surgery. It's not easy to go nearly 24 hours on only an iv at a year old. He did it though! He was brave about getting his iv in. He was brave about going with the doctors. He was just...well, brave!

The surgery itself went well. It only took about an hour and the original estimate was around 3 or 4 hours. It also turned out that what looked like a hernia in all the images and what felt like a hernia in all the exams actually wasn't a hernia at all! It was a big area of hyper-extended muscle. So, the surgeon tightened up the muscle using a pleating technique similar to putting pleats into pants and then removed a large portion of excess skin.

X is an angry little guy when waking up from anesthesia usually and that day was no exception. They had to call us back into recovery the moment he woke up instead of the usual 30 minutes later because he was inconsolable. He was hurting, disoriented, not dealing with the meds well, and he just wanted Mommy. He wanted kisses from Daddy, but he was so angry, he would only sit with Mommy. Poor guy :(

Within an hour, he was able to go back to his room and we started the recovery process. It was rocky few days. X has some stuff going on with his lungs that doesn't typically cause him any issues. After anesthesia and surgery, however, it's a different story. He was having a really hard time keeping his oxygen up. He ended up on a cannula for a few days before he was able to get rid of the extra support. He also started developing a wet sounding cough and a rattle in his chest. He also spiked a high fever of 102.6 F. A low grade fever after surgery (below 101 F) isn't uncommon, but this was awfully high; especially for his age.

The combination of needing oxygen, the rattling, the cough and the high fever can be indicators of the early stages of pneumonia starting. Thankfully, his pediatrician intervened and got him started with chest physiotherapy as soon as possible. It was just what he needed and we thankfully avoided pneumonia!!!

He did need pain medication for a couple of days, but being the strong boy he is, he didn't need any medication at ALL by day 3! Most ADULTS wouldn't have handled pain that well!

The biggest hurdle was getting X to drink his bottles. That was a struggle...ok, it was a BATTLE! The night of surgery, he drank 20 oz of his bottle in a few hours. He kept up the great drinking until about 4 am the next morning when his fever spiked. By that time, he had to have iv fluids turned up as he was drinking less and less. By the next day, he wasn't drinking at all. We asked to have his GI doctor paged.

When she saw him, she agreed that he needed to stay until he could drink enough fluids on his own to be hydrated. She gave him some medication that would help him feel hungry enough to want to eat and that was all he needed. He drank enough that day that we finally got to come home!

After a week in the hospital, X's physical recovery is well on its way. His incision looks great! He's healing nicely and moving and playing a lot more. His spine is already straighter than it's been in a while and his reflux type symptoms are totally gone! YAY!

The big thing we're working on now is healing the emotional and mental injuries. In a child like X who has to undergo frequent and often painful things, they develop a lot of anxiety in the hospital. That anxiety amplifies after they come home. That's what we've been working through the past few days. It's almost PTSD (Post-Traumatic Stress Disorder) type symptoms, but in a 20-month old little boy. It's heartbreaking to see that his toys, his sock falling off during play, even sometimes clapping his own hands startle him so badly that he just cries and shakes. But, true to who he is, X is overcoming the anxiety a little bit each day.

Incision with the bandage still on

Incision with the bandage off