Moving on.....A couple days ago while looking through some old homework assignments & medical documents, junk mail etc, I found a sheet of paper written from top to bottom & on both sides. I noticed the date & realized it was one of my first journal entry notes. A few people had given me the idea to start journaling to help in coping with Haley Jean's chaotic health & to share my thoughts with myself. One night, I decided to give it a chance. As I said, I noticed the date & realized it was indeed a time when she had been hospitalized. Christmas was coming & she had been there a bit over 2 weeks for sepsis & respiratory distress. We had been home from the NICU 3 months before this happened & I can recall feeling frightened & overwhelmed all over again, like I did in the NICU days. I remember feeling afraid, inadequate & just not good enough overall as I grabbed a pen & paper from the counter in her room & quickly began to write. My thoughts began wandering into the abyss of the beginning. Revisiting feelings I thought I'd suppressed enough to forget them completely. Memories are a funny thing; just when you think time as wiped them out, a scent, a sound or a circumstance immediately reveals its long hidden presence. Holding this sheet of paper in my had, forgetting what I was looking for, I began to weep. My heart began beating rapidly, breathing became labored, my watery eyes glazed across each line as they strained to read through blurred visioned caused by tears. The page was warped, stained with something reddish orange, the corners curled inward with a brownish color serving as an uneven border. It was stiff, crumpled as if it had gotten wet then dried, but felt like it would tear if handled improperly. In spite of how warped this page was, I still was able to read it legibly. Suddenly I began to smile, thinking that this page was just like my Haley Jean; fragile & warped from a laundry list of health ailments, yet able to be viewed as a human being, understood & loved. It will remain in my keepsake box that is filled with lots of her little trinkets.
As the day went by & the sun began sneaking behind the retirement center across the street, I decided to share this journal entry with everyone. You all have helped in shaping me as mother, as a woman who is heartbroken in more ways than you may ever come to know. I can't think of any other people I'd rather share it with. You all are those who experienced this journey alongside me in prayer & thought. I'm forever grateful..:)
"My Thoughts" 12/16/2013
Only a few days or so left before Santa comes to town & where are we? Stuck in the PICU here at Rush. As I sit quietly at her bedside, the beeping of the machines act as a hypnotist, a white noise while I drift into memory lane, reflecting on the past 2 years of my life. The road traveled has been an interesting one, one that was completely unexpected. After a few days of finding out I was expecting my first baby, my mind was bombarded with yet even more thoughts. This time of what my mother would think. I was semi-employed, in debt, disabled & dependent to some extent. My intended was 20 years older than me, twice divorced with 5 other children whom were all from both previous marriages. Like myself, he was not financially stable. Overall he was in no position to support us. My mother was probably turning over in her grave if she knew what I had done. I was pregnant and unmarried to a man who had no intention on committing. I know she didn’t want that life for me. I was embarrassed & ashamed & her opinion meant the world, even in death. My mother thought very highly of us, expected the best for us and out of us all. Although we all didn’t live the ideal lifestyle, she never made us feel little or unworthy. In spite of my circumstance, there was no way I was aborting my child. I discovered potential I didn’t know existed within me from the moment I found out I was having a baby. As the days approached towards discharge from the NICU, the hospital staff pressed harder and harder to “train“ me as a caregiver. I learned CPR, how to operate the feeding pump & administer medications through her G-tube, how to operate oxygen tanks, the concentrater etc. As you can see, her general care had more requirements than the average baby. I couldn't determine if they were trying to help me or if it was just an attempt at deterring me from wanting to take her home. As it came closer to discharge, there were talks among the NICU staff about her going to live in a medical foster home because she was technologically dependent. She was on oxygen 24/7 & was required to wear a pulse oximeter when she slept at night & during nap time in the day. I was eager & willing to learn how to care for her. The thought of her living with someone else gave me nightmares. I was afraid they would try to take her away for me. It was their opinion that I was unable to safely care for her due to my physical disability. They are legally bound by law to intervene if ever there's a child going into an unsafe environment. They told how they were simply doing mine, & I explained that on the contrary, so was I. As her mother, it was my job to advocate for her well being. From the time I found out she was in my womb, I promised her that I'd fight for her, even if it meant my life. I felt bullied & discriminated against all because I wasn't married & disabled. This was the only time we did NOT get along. It was the one time in my life that I was deeply afraid of losing my child. They brought me pamphlets, telling me all about the wonders of Misericordia, how fantastic Merriville facility was & the amazing benefits of my child living with a medically trained foster family. I started feeling like I was being pressured & harassed because I was in a wheelchair. It was as if they didn’t see me and what I had accomplished in bringing her into this world, none of that mattered to them. I had became so overwhelmed with pressure to make a decision that all I could do was cry. I felt that if I sign that piece of paper to give my child to strangers, my rights as a parent would become forfeited. After weeks of frustration, tears, praying, fear & heartache, my family came to show them that I had a great deal of help. Afterwards they realized the help I had at home was nothing short of pure love. There was no longer any conversation about Haley Jean going anywhere else after the NICU besides home with me. After all, there's NO place like Home <3