Thursday, January 22, 2015

My Story

I have decided to start up my blog again. It's been a while!!! I will spruce up the pictures and stuff when I have time but for now I'm going to write because I need an outlet. I was talking to a friend today and she happily exclaimed, "I think I found your new motto!" Now I have been thinking for a month now what kind of motto I could have for this new year. She told me, "I can do anything for a day." after that you say, I'm fine right now but I'll let you know if anything changes. YEP that's my new motto!!!! We talked back and forth. I opened up about my resistance to letting people help me. It isn't a selfish reason and it isn't necessarily a pride thing. I have a hard time letting people know who I am because when people know what I am going through they feel obligated, in a sense, to help me. Now I'm not meaning or saying I think people tell me they want to help and then don't want to. I honestly believe that those who ask and offer truly mean it, but everyone goes through their own struggles and my life is more than some people will ever see in their whole life time. MY LIFE IS OVERWHELMING. MY LIFE IS HARD. But boy do I love my life. Boy do I absolutely LOVE being a mom and feeling the love in return from my 4 little stink pot children!!! I feel like when I let people in I overwhelm them when I allow them to help. I have felt this way for many many years; since Shaun was injured. My friend told me that she used to be the same way as me in a sense...It's easier to just not say who you are and overwhelm everyone else with what's going on, until one day as she was sitting in Relief Society and every week her president would get up and tell everyone how important their stories were. She would tell everyone that they had amazing stories and encouraged them to share their stories with everyone else. This hit me hard. I don't share my story. I don't let people in to know me because I don't want the burden to be on them. I had a Bishop tell me once that we go through trials to help others. Say what? I have to struggle so one day I can relate to someone else?? And then it hit me. One day down the road whether it's in 5 days or 50 years, there will be someone, or multiple people who will need me to be their rock or sounding board as they go through the same struggle that I went through. As much as I hate it, I have a few people who have struggled through trials FOR ME TOO. So I decided, after 4 years, to reopen the blog and share "my story". Let me start off with something more recent.... We started off last year in a good spot Shaun had a job we had a place to live and we had 4 beautiful children. I had just started home schooling and I was loving it. As the year went on, things started turning. That isn't to say I didn't like last year but it was a challenging one for sure! Blake stopped growing and so did Payzlee and our family made the very hard decision to go out of our comfort zone and change specialists. Our new specialist would be 8 hrs away. We prayed so hard to know if this was the right thing for us and we felt so humbled that we were given the opportunity to travel and find this set of specialists. As the year went on Shaun's job transferred us from New Mexico to Colorado. We felt so inspired to move. I knew we weren't moving for Shaun's job but that our family was moving to be closer to the specialists we had just seen. For about 6 years Shaun and I had said we wanted to end up in Colorado, to settle down for good, but we thought that was just a dream. We never thought we would ever follow through. Here we are. This place IS home. It feels like home. It smells like home. It looks like home. I don't know what I envision home to look or smell like but everything about Colorado feels like home. By October I was watching my son not eating and I started crying. no amount of bribery or pleading could get him to eat. Blake has Eosinophilic Esophagitis. Food is bad. Food isn't a good thing for him. I doubt it ever will be. When Blake was first diagnosed with EoE, we were told by 2 drs to never place a feeding tube....that if Blake got one he would have it for life. I cried daily knowing that we were headed down the feeding tube tunnel. I felt so alone. I know people who have, or their kids have, feeding tubes, but the decision to place one in my son DEVASTATED me. Just looking at Blake I would bawl. After a month of watching Blake starve himself I made the extremely hard decision (after countless nights of pleading with the Lord to make him eat) to call the dr and make the appointment to talk about placing a Gtube. Blake had a gtube placed a week later and it was the best decision of my life. That isn't to say it isn't still hard. I have guilt over it. I still cry over wondering why he has to have it. I know why but I want to know WHY. Payzlee is believed to have the same disease as Blake. We put her on formula and she started gaining her weight back and getting stronger. We knew she was aspirating (swallowing liquids and thin foods into her lungs instead of stomach) but we didn't know just how bad it was. Blake aspirated and she showed very similar signs. Blake was given a thickener to add to his liquids and thin solids and he thrived and did great with it! I knew the signs of severe aspirating were infections and respiratory issues. Payzlee had not had any of those so I thought she was just fine. Payzlee failed her swallow study. So much so that both thickeners (one thicker than the other) were both going straight into her lungs. Everytime Payzlee drank one of her 6 bottles a day ALL of the liquids were going into her lungs. We were not allowed to leave the hospital that day. We were admitted for an emergency NGtube. I was blown away. how could this be? I asked the dr. He said she was silent aspirating meaning showing no signs. It's rare to be as bad as her and not show signs but it does happen. We stayed over night in the hospital. As I lay in the bed I thought about the possible burden I had put on my friend to watch 3 of my kids overnight. She had never even seen Blake's feeding tube yet there she was hooking up feeds as I told her what to put in the machine. I cried. I thanked my Heavenly Father for her and for letting me put my guard down and ask her for help. I felt awful for putting so much on her. Yet at 4 am as I talked a sobbing little boy down to not crying, my heart was so full and so at peace that I made the right decision to allow her to serve me. She's totally going to heaven for that night!!!! We went to Payzlee's dr. appointment on Monday and we were told what she has is more than likely not Gi related but instead a malformation of nerves in her throat. Either they didn't form, didn't form all the way, or are malformed. She needs to have a gtube placed immediately. The doctor made sure I understood that this was a very long term thing. This would not be short and to put it nicely, it would be "years" with her having a feeding tube. It was such a hard decision to make to have a feeding tube placed for Blake. It took 2 years of praying and him starving himself for me to realize he needed one and wasn't going to change things on his own. Yet, with Payzlee I was being told this wasn't our decision and she would have it for years. Infact, with Blake we talked about how it's up to his body as to when it comes out. When he wants to eat we can wean him off the tube so could be months or years but it's not permanent. It will never be permanent. With Payzlee, we didn't have that talk. We had the, "this is a long term, VERY long term thing." I feel numb. I do. I feel mad that I couldn't make the decision yet I feel SO GRATEFUL and humbled that we have the ability with doctor's and medical equipment to keep my child SAFE, alive, healthy. This next week will be tough for me. Blake will have surgery on Tues. He has ,major granulation issues that we haven't been able to resolve (we have burned it 3 times with zinc oxide) so he has to be put under to get it taken care of. The doctor said it is far too painful to do while awake but he needs it done. Also they scheduled Payzlee's gtube as soon as there was an opening which just so happens to be the very next day Wed the 28th. I am terrified. Blake has had reactions to anesthesia where he stopped breathing while he was under (they had to breathe for him) so surgery scares me. I often wonder what kind of a person and mother am I. Can I do this? Can I make it through the very hard 3 days I have ahead of me? (Oh did I mention that I'm dealing with adrenal fatigue and have been for a few months now but I just now started taking meds to help my body heal??!) The hospital is a VERY lonely place. It's either too cold or too warm, it's quiet, and solomn and SAD. Everyone's always sad. You never know what kind of nurses you're going to get and I don't know about anyone else, but hospitals are haunted!!! So many people die in hospitals every day and at night I hear those people wondering the halls. IT'S CREEPY!!!! And I hate it. But I love my children so for them, I will lay in a hospital bed and hold them while they sleep as I listen to footsteps, and creaking, and random voices and doors opening! Next week will be hard but each day I will say to myself, "I can do anything for today."

1 comment:

  1. I ❤ you. You are doing an amazing job. Thank you for sharing your story.