Moments that take your breath away.

I don't know if it's the time of year or what but I have been experiencing and remembering many "take your breath away" moments lately.

One of the sadder parts of parenting a special needs child is the grief. While yes I have somewhat adjusted to "my new normal", there are still times that it hits me out of no where. That feeling of sadness for what never was and never will be. I can be having the greatest of days and something will trigger a memory or thought that re-opens the scars I had once thought healed. We have been re-organizing things in our house and I came across pictures of Makily from the NICU. They were basically the worst of the worst that I had put in a box. My first thought was to put them away and move on but NO, I HAD to look. I don't know why. It sparked a memory that I had not thought about in a long time. A few days later I had a phone conversation with Andrea and I told her the story....through tears mind you. She immediately said "girl you have to blog that!!"

So I am.

Makily was about six weeks old. We did not yet know her stomach was not emptying or that she had severe reflux. She was on bolus feeds....for the non g-tube educated person a bolus feed works like this. A large syringe is attached to the end of the baby's tube. Formula is then poured into the syringe and it is drawn into the stomach by gravity. This is the preferred and fastest way to g tube feed. Typically this type of feeding takes about 15-20 minutes. For Makily it could take up to an hour or more.. This was problematic because she was supposed to be getting two ounces every two hours. By the time we would finish a feed it was time for the next. Most people would think "how can it take that long, you pour it in the tube, it goes down...feed finished right?" NO, not so fast. Makily screamed EVERY time we fed her...well she screamed all the time back then but it was worse when she was eating. When you are bolus feeding a baby and they cry...it tenses their stomach muscles which then pushes the formula back up and into the syringe. This is very frustrating for baby and parent...especially at three am. I was up feeding Makily. I had just pumped my milk. She was in the swing because that was the only place she didnt scream 24/7. I had gotten all but about a tablespoon in her and she started screaming and pushed back out all of the milk. To say I was tired is an understatement. I started the swing up to calm her and she stopped crying. So imagine now I am holding the syringe above her while she is swinging in the swing trying to get her feed to go down. I got an ounce down her again and Makily started crying, flailed her arm and detached the tube from the syringe....so my milk poured out all over her and I. I got a towel and cleaned her up the best I could all the while she is crying. I went into the kitchen warmed some of my frozen breast milk and started the feed again. That feed went up and down and up and down the syringe two more times before I had THE NERVOUS BREAKDOWN.

I went crazy.

I took the syringe off Makily's tube and THREW it across the room. I started screaming and ranting "I can't do this, I tried but I AM NOT CUT OUT FOR THIS CRAP!!!!" Allen woke up (he was getting his ONE night of sleep, God Bless him). I told him I was DONE. I didnt ask to have a handicapped kid and I don't know how to be her mother, she doesnt like me. I can't feed her normally OR EVEN THROUGH A TUBE SURGICALLY PLACED IN HER STOMACH! I told Allen I could not handle the pressure anymore, God was laughing at me, at us. This was all a big joke to him and I hated God for doing this to us. Between pumping, being post partum, having and sick baby that cried all the time, no sleep, utter exhaustion and just out and out depression I had HAD IT. I told Allen that I knew he would not want to put Makily up for adoption but that I couldnt live like this anymore. I told him I was leaving. I seriously wanted to go live in a tent on the beach. I wanted to escape my life, anything was better than the hell we were living in...and that is TRULY what it was.....a SLICE OF HELL. (Andrea you described that perfectly)

Allen's response to my insane ranting literally took my breath away.

He didn't respond with anger, tears or even resentment. He said:

"Trish, I understand, and when you decide to come back....Makily and I will be right here waiting for you".

My heart soared and ached at the same time. The love he felt for me and for Makily was so strong that even though I had gone mad and we had this sick child he was going to do whatever it took to get ALL of us through it. Allen truly is the glue that held us together. I do not know what I would have done without him. The next day at the urging of my mother, Makily's pediatrician and Allen I got help. Things didnt get better for a while but I was able to cope with things so much better.

Today I look back and it's hard for me to believe that the happy blue eyed blonde hair little girl I see now is the same SCREAMING baby from back then. It wasnt until weeks and weeks later we found out that Makily's stomach was not working correctly which explained the constant crying. It's hard to know that she was so grumpy because she was in so much pain. Once all of the problems were fixed and she recovered her TRUE personality came out.

Her laugh STILL takes my breath away just like the first time.

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