“On August 6, 2016 I had my first abdominal surgery. Prior to this surgery I battled with infertility, miscarriages, and constant pain. The plan was to remove excess scar tissue, endometriosis lining, and ‘clean things up.’ Once this was complete, the chances of having a baby would be higher. When I woke up, my partner and doctor told me they had to take out my left tube and ovary. I became numb. I started to uncontrollably cry, and thought, ‘How am I ever going to get pregnant now?’ The physical recovery process was hard. The emotional recovery was harder. Until we got the OK to try again, I became hopeful.
On October 9, 2016, we had a positive pregnancy test! I was overjoyed! About two weeks later my joy went away. I knew something was horribly wrong. A mother’s intuition never fails. I tried to stay positive, but the reality would haunt me 24/7. I would lay awake every night, worrying about my unborn baby. I just knew. We found out at 6 weeks we were expecting twins! 3 weeks later twin b stopped growing, 3 weeks after that he/she was gone during that ultrasound. We were told twin A (Jamison) absorbed d twin B. I was crushed. I was depressed. But still hopeful for baby A. Shortly after the news I started to become physically and mentally sick, so much so the hospital became my second home through my pregnancy and continued after. I spent more time in urgent cares, ERs, hospitals, specialist appointments, than I did at home. (48 ER visits, 16 urgent care visits, 32 specialist appointments & 16 hospitalizations).
At home, the bathroom became my bedroom. I would either be in the bath crying, on the floor crying, or throwing up to a point I couldn’t get up. I was so weak, it was miserable. These episodes would last anywhere from a day to two weeks at a time. I would get medical help solely for fluids, calories, pain medication, nausea medication, etc. When I was discharged, nothing worked, I mean nothing. I had a drawer full of every nausea medication safe for pregnancy from orals to suppositories. It was a constant feeling of when will this end, when does this get better? I was so drained and exhausted I had nothing left. Where did my patience go? Where did my positive ‘can do’ spirit go? Where was the woman who people surrounded themselves around because of her uplifting personality? Gone. She was gone. I began to hate myself. I carried around so much anger, guilt, and shame. This became my reality. I tried to understand why this was happening, why me? Family and friends encouraged me (sometimes yelled it at me) to get help. Whether that was counseling, therapy, anything. During that time I was under an intense amount of stress and pressure. It was not helpful to have people yelling at me when I was in such a vulnerable state of mind, and physically declining daily. What was supposed to be a healthy, happy, beautiful pregnancy was just the opposite. On January 10, 2017, 4 months into my high-risk pregnancy, I had my gallbladder removed. During this hospitalization I was there for three weeks. I was so afraid I would lose Jamison. Hoping this surgery was successful and no longer having health issues. It was not long after I was sent home that the episodes started again.
On February 2, 2017 I received a phone call from my OB doctor that she could no longer provide me care and referred me to Deaconess because my health and the baby were declining. We were told he possibly had down syndrome. This is what a lot of my discharge paperwork reads, ‘You Were Seen Today for Unspecified fetal abnormality affecting management of mother, unspecified as to episode of care – Primary.’On April 11, 2017 after being admitted in the hospital for a week I had a specialist ultrasound done. It was a 2-hour appointment. I remember waiting in the room afterwards and feeling so alone. 10 minutes felt like hours, the nurse said she would be right back, but something was horribly wrong. When she came back, she helped me down from the bed into the wheelchair and brought me back to my room. One of the hospital social workers came into my room and suggested I call somebody asap because the news I was about to receive was going to be life changing.
I called Kolton, luckily, he was working only 20 minutes away and rushed up immediately. The doctor came in looked at both of us and said Jamison would not survive. He had a disorder called ‘Harlequin Ichthyosis.’ She handed me a google printout of what it was, and the images attached had me in tears. I was so afraid. Shortly after receiving Jamison’s diagnosis the hospital social worker and a preacher came into my room. The social worker told me I needed to make a decision to abort or continue my pregnancy. That it was selfish of me to keep going through this. I started screaming I just wanted to be left alone to gather my thoughts and emotions. They did not leave me alone, they kept on coming into my room every half hour saying the same thing. By this point I had no more energy left. I softly said, ‘Please leave my room, leave me alone, I need to take this time to myself.’
On May 18, 2017 I knew I was in labor. I had told Kolton that evening before bed. I slept for a few hours and woke up in so much pain. We went to the hospital and had no idea what we were in for. When we got checked in, I was already dilated at a 5. A man came in whom I have never met before and I thank God he did. He looked at us and said Jamison would be ok, that he had a nephew who has Harlequin Ichthyosis, and everything was ok. I started bawling and asked where had he been this whole time? Finally, someone stepped in and told me it was all going to be ok. While I was in labor, I was signing all of the necessary paperwork. I can clearly remember the blood transfusion one. I kind of laughed and said, ‘Why do I need to sign this one.’ I am so thankful I did. I was rushed into surgery for a C-section. That was all a blur. I saw Jamison for two seconds and asked Kolton to go wherever he goes. Off to the NICU they went.
While I was in recovery, I kept on asking about him, he was alive! I wanted to meet him, but the nurse said I could not yet. I blacked out after, I died and woke up in the ICU. After another surgery, 4 1/2 blood transfusions, and close monitoring, I was alive. I did not get to meet Jamison until 2 more days because I was not stable enough. I got stronger and knew if he was fighting, I would fight. When I met him, I felt so afraid but also full of hope. This unknown road paved itself the moment Jamison came out crying and very much alive. I started trusting in God. Still battling my depression.
On June 9, 2017 I was back in the hospital violently sick; it was not over yet. This time it was different. This time a Social Worker from CPS came to visit me. We talked about my ability to care for Jamison. She had told me I was mentally unstable and there was an open investigation. I was discharged with that. No resources or support to help me, just somebody telling me I was being investigated and unable to take care of him. This was the moment Kolton’s parents became more involved. After several family team decision making meetings, CPS decided Jamison would be placed with them. My whole world just flipped upside down. I begged to not let this happen. There was nothing I could do. After that last meeting our relationship with his parents changed drastically. Especially between his mom and I. When I would show up to visit Jamison in their home I was bullied, screamed at, and not able to take care of him. My ability to care for Jamison even to just bond with him was under strict rules only when they said so. At this point I became even more depressed. I would call our social worker and Kolton crying and explain to them what was going on. They did not believe me. So, I began fighting back, I began recording every visit while I was there. These recordings were then sent to our social worker and attorneys. I am so thankful shortly after this was dealt with, I no longer had to go to their home to visit Jamison. He would come to our home. I could finally take care of him without Kolton’s aunt screaming at me, ‘You can’t do it, don’t touch him, or I’m holding him now you can wait, or I’m going to take care of him and feed him, you can’t, or you are a shitty mother just leave,’ This also came from Kolton’s mom. This is how I was treated when all I wanted to do was spend time with my son. Kolton’s parents had strict stipulations on what they expected of me in order to get Jamison home. We later found out none of what they said mattered at all. It was not up to them although they felt that way. They continued to take aggressive action toward us. An incident that happened was that Kolton’s dad had given him strict rules- that if he continued to stay with me, he could no longer borrow their car to get to and from work. We separated for 2 weeks and got back together. Kolton finally saw and realized what was truly happening and gave them back their car. I remember his mom screaming at me that I would never get Jamison home and it would be years because she said so. That is not the truth. The truth is during this time, I received help and got into counseling and on antidepressants. I became healthier, stronger, and better. When I think back to all of this, I cannot believe they had tried to keep Jamison. My recordings and legal documentation have all of the evidence I need for myself and my healing.
Jamison came home after our court follow up on December 29, 2017. I was so overjoyed but also afraid. We spent days/weeks/months researching everything we needed to, to be able to meet all of his needs. But that wasn’t enough. I am still researching and storing away more information all of the time. Because that is what a true mother does, she does not stop for her children. Even when I was at my lowest mental state I never gave up. Life now looks a lot different. Jamison is thriving, our boys are happy. I am healing more everyday as well as Kolton. We still have moments that trigger our P.T.S.D. and Trauma. But its manageable and we take extreme caution with each other and have so much Grace. There was a period of about 6 months we completely separated ourselves with his family and focused on our own. During that time the transformation in our own home was amazing. Less stress, more manageable anxiety. I decided to let them see Jamison again on his birthday when he turned 1. On May 19, 2018. Since then we don’t really talk about the large elephant in the room. Anytime that we do it turns sour very quickly and nothing is resolved. The past gets brought up frequently and there is a lot of bitterness towards it from all of us. They are good grandparents. But I would never trust them alone with Jamison, Kolton and I both feel that way. Too many mistakes have happened that shouldn’t when caring for Jamison.
Jamison is doing really well. Kolton and I both stay home and take care of him along with our other boys. We are barely making ends meet but are happy. We are still working on finding what our balance looks like for ourselves and our children. Jamison now has a feeding tube, requiring more care. We still provide 24/7 care for him and are always exhausted but would not change a thing. Everyday is a gift from God that we have made it this far and I am forever praising him.”
This story was submitted to Love What Matters by Alicia Kay of Mead, Washington. Submit your own story here, and subscribe to our best stories in our free newsletter here.
Do you know someone who could benefit from this story? SHARE on Facebook or Twitter.