How Anxiety has controlled my happiness.

I’ve recently noticed a lot of posts concerning depression and anxiety from fellow moms and organizations.

This isn’t coincidental , it’s God telling me it’s time to open up and share more of my story. “Caregiver burnout,” “do you fear something will happen to your child;” “do you feel like you’re a bad mom?” I’ve been there and I’m still living with these questions. This is part of the reality of my life and anxiety impacts me everyday and the last two months haven’t been the easiest experiences to talk about, muchless share. No one wants to talk about the bad times, but I am compelled to, because I’m committed to being open and honest about my postpartum anxiety (PPA) diagnosis. I am not the only mother and caregiver going through this rough patch and I hope by sharing my story I am able to help other mothers through theirs.

I’ve struggled with general anxiety for years; have been prescribed medication, gone through therapy/counseling and have learned ways to cope with and manage the anxiety. I had a manageable handle on my it and rarely had any overwhelming experiences. Well, January 29, 2017 (the triplets birthday) changed me from managing and coping with my anxiety, to being completely out of control. What was worse, the anxiety I was experiencing was different.

After the babies were born, I physically couldn’t go into public because I had developed a crippling fear of germs (germaphobia), causing me to become obsessive about cleanliness. This fear was so real, I had become completely isolated— even from my family. I struggled with allowing people to come into my home to help me with the babies, because I was scared of what germs they would (not might, would) bring into my home.

Coldon was still in the hospital when the anxiety had complete control over me. Having a premature baby who has Down syndrome, who is considered “immunocompromised”, only escalated my fear and increased my anxiety. I honestly don’t know how many bottles of purell I kept on me at all times and how many times I would use it. I know it was alarming, because I would get looks from anyone who saw me with it— through a window of course. Purell still reminds me of the NICU. The smell is etched in my brain and I’m sure every time I sanitize my hands, I will think of our time in the NICU.

Prior to giving birth to the triplets, I didn’t think twice about germs. I washed my hands and went on with life; I wasn’t afraid to touch a door handle or someones ink pen. My perspective was “oh well if I get sick; now I’ve been exposed.” The time I spent in the hospital before the babies were born, was during the worst flu epidemic our country had experienced in decades—I wasn’t fazed by it. So, did something traumatic happen to me? I gave birth to triplets, I wouldn’t consider that traumatic; life changing and scary, but not traumatic. Was Coldon’s Down syndrome diagnosis traumatic? Some might say yes, but I’ve only felt peace about it. The events that happened while the babies were in the NICU left me scared.

I witnessed things I never imagined seeing in my life, sounds I will never forget. Babies addicted to drugs, screaming because they were coming down from their addiction; babies who had MRSA, one in a crib next to Coldon, only separated by a curtain. The worst were the babies who required constant resuscitation. You knew when this was happening, because the alarms sounded different and nurses were running. To this day, I can’t listen to any of those noises when Coldon is in recovery post surgery. And the one image I can never forget; tears flowing down the face of a new mother as she was saying goodbye to her baby who had passed away. Sadly the baby was born to prematurely to survive. Even as I’m writing this today, I have to slow what I’m doing and take time and remember the mother and her loss.

This is a reality most triplet moms have to face, soon after learning we are pregnant. We are greeted with “congratulations, you’re having triplets and you’re about to begin the toughest fight of your life.” I was informed the day I found out we were having triplets, they are high risk for brain bleeds, severe brain damage and a myriad of health complications if they are born to early, “so brace yourself, because this pregnancy isn’t going to be a beautiful exciting moment of your life; it’s going to be a fight to save your babies lives.” When you’re pregnant with triplets, the doctors make sure you are made aware of possibilities you most likely wouldn’t know existed if you were pregnant with one baby. So here I was, recovering from a fight that had crippled me, out of fear for my babies lives, watching a mother grieving my nightmare. This has been very hard to talk about and is proving difficult to write about, but it’s part of my struggles today.

Adding to a long list of events forever implanted in my mind, the most substantial traumatic experience, that impacted me both mentally and physically was the day our NICU was thrown into an infectious disease nightmare— a baby had contracted chicken pox. The next day our babies were part of the area considered “exposed;” Jay and I were the only people allowed to visit the babies. We had to sign legal documents concerning the outbreak, decide if we wanted our newborn babies to receive a varicella immunoglobulan shot, to increase their immunity against chickenpox and we had to wear gowns, gloves and tuberculosis masks just to walk up to their cribs. My healthy, strong babies were now exposed to something that could not only harm them, but could kill them. By this point I had spiraled out of control; simply breathing scared me. I was so afraid of getting sick and passing it to my babies that I wanted to lock my new family in a bubble and never let anyone in.

Living like this isn’t normal, it isn’t healthy and it wasn’t realistic. I knew I had to get help, so I reached out to my doctor, who prescribed the anxiety medicine I was taking, but instead of addressing the problem, the dosage was increased and I was sent back to my germ fearing, anxious, out of control life. Somehow, by the grace of God, I have been managing my anxiety enough to cope day-to-day, but it wasn’t going away; I was simply covering it up and slowly, the medication was killing my spirit.

Fast forward to April 2019, since our time in the NICU. The babies are older now; life hasn’t gotten easier, but the challenges have changed. The babies are now toddlers and are more independent, allowing me a little extra time to focus on myself. Enduring a triplet pregnancy wreaked havoc on my body and I still didn’t feel like myself, so I had a complete hormone and blood panel drawn to make sure I wasn’t experiencing deficiencies or metabolic changes. Surprisingly, everything came back normal, but I didn’t have emotions; I couldn’t cry when I needed too.I felt like I was watching my life in a dream, unconnected from my body and through the numerous appointments none of my doctors were listening to me. The anxiety kept building and compounding on me and I’m sure at this point my family was starting to feel the ramifications. I knew things weren’t going to get any better, because I was facing Coldon’s fourth surgery since birth.

As you have read a fraction of my experience in the NICU, since you’re reading this; you probably understand, I don’t do well in hospitals. I become anxious when Coldon has a doctors appointment, so naturally, I  go into full infectious disease clean-up mode when we have to spend the night in a hospital. Typically I go through two or three containers of Clorox wipes, so I can wipe down the entire room; especially door handles, remotes and the entire crib. I also have a conversation with every nurse and doctor who comes into our room; not only do they have to wash/sterilize their hands, I request they wear gloves. Any component they have to touch Coldon with must have a glove or some sort of barrier on it and I even ask them to put a glove over their stethoscopes. Sometimes I get weird looks or remarks made under their breath, but they have always been accommodating. Usually, they feel sorry for me because I am so paranoid about germs and I’m sitting in a petri dish. Sidenote, the most recent surgery was the first time I didn’t feel like I had to clean the entire room and I didn’t ask any of the staff to take extra precautions when they were examining Coldon; huge progress for me!

Coldon was diagnosed with obstructive sleep apnea and had surgery, last year to remove tissue blocking his airway. The surgery was very successful and we left the hospital without extra germs we didn’t already have; life was good! Unfortunately the tissue removed can grow back and it did, so at this point we were staring down the barrel of another surgery to clear his airway and another night in the hospital. All three babies caught RSV this winter and guess what— we survived! Thankfully the germaphobia has calmed to a normal level allowing me to breath and not become so anxious in a hospital setting, but I spoke to soon. This time, I wasn’t battling anxiety and fear, I was battling an overly confident, unqualified nurse who refused to listen to me causing Coldon’s pain to remain out of control.

As this was his fourth surgery and second procedure on his throat, I have become somewhat seasoned and I know what he needs. We learned the obstruction was worse than anticipated and the doctor had to do additional procedures, so I knew he was going to be in a considerable amount of pain and most likely wasn’t going to eat. This was manageable; I had anticipated him not eating and the pain. I wasn’t anticipating the nurses refusing to listen to me, only giving him Tylenol and Motrin for pain and worse, forcing him to take it orally. After a very long battle, at 2:40 A.M. the charge nurse finally gave Coldon adequate pain medication and for the first time he was able to sleep longer than 30-45 minutes.

I am used to advocating for Coldon, but I have not had to fight so hard for him until now and I felt like I didn’t fight hard enough; he shouldn’t have had to endure the pain as long as he did and I still feel like a horrible mother for holding him down and forcing him to take the medication orally. Many will try to tell me not to beat myself up over this, but I’m afraid it’s going to take a little longer for me not to think about the way he was screaming in pain while I was holding him against his will.

Coldon was traumatized and I can’t begin to think of words to describe what I felt that Saturday afternoon. Thankfully, the staff did a tremendous job the remaining time, but we had to endure an additional night in the hospital and this experience was the cherry on top— exactly what was needed to push me to my breaking point. Coldon wouldn’t eat and you couldn’t show him a syringe, spoon or mask for a breathing treatment without him becoming hysterical. By this time I was almost numb and each time we tried to give Coldon his medication, I became more and more frustrated. He couldn’t help what he was experiencing; he associated all the things we were trying to make him do with pain. My heart was breaking because my emotions were so out of control and the only thing I felt was anger and frustration because he just wouldn’t eat and take his medicine. This sounds ridiculous, but for the first time Coldon’s diagnosis caught up to me; all the frustration and anxiety I had pent up from his feeding difficulties began weighing on me to the point I was angry. Why couldn’t he just eat?

I saw Coldon’s disability for the first time and I didn’t like the way it made me feel. My precious, beautiful, strong little boy is perfect and for the first time I saw a flaw and I was angry. I was angry because I had let my anxiety get so out of control that I couldn’t control how I reacted when Coldon was struggling. I finally told Jay he was going to have to handle the medicine, because I couldn’t fight anymore. It was Monday morning, Coldon and Jay had fallen back asleep; Coldon in bed with us. I decided it was time for me to not only seek help, but to demand help. I got up without waking anyone, packed an overnight bag and took myself to the hospital. I texted Jay to let him know I was ok and where I was; I knew he would talk me into staying home if I had woken him and that nothing would change.

How humiliating—taking yourself to the hospital? I was there… where anxiety becomes depression; where the up-hill challenges become a mountain if you don’t choose the correct path. Humiliation was the last thing I was worried about that morning. I needed medication to calm my anxiety for once in several months, I needed to rest and a few people needed a wake up call.  While the ER was of no help, the social worker was. Remember how I mentioned none of my doctors were listening to me, well one of those doctors was my Psychiatrist. After telling the social worker a very brief version of my story, she immediately set up an appointment with a doctor her daughter sees. She couldn’t say enough positive things about this person and I was simply grateful to get an appointment less than two months out. I was currently searching for another Psychiatrist, but unfortunately there aren’t many of them and the few we have are so overwhelmed with patients, it’s almost impossible to get an appointment without a long wait.

This was it, this was the help I needed—FINALLY! I went home to a receptive and supportive husband who suggested I take a trip to the beach, to continue to rest and literally unwind. I went for a few days and came home in a much better place. It was hard while I was away, because I felt like I had left my family; I had let my children and my husband down. Although I felt this way, I didn’t feel like I had abandoned them, because I was coming back, but I had to step away so I could be the mother and wife they deserved and needed me to be. I came home recharged and eager to work with Coldon again, the way I was eager to help him overcome his feeding challenges. I was eager to hold, hug and love my most precious blessings and I was excited to come home to my husband who needed me to be the strong, in-control woman he once knew.

Since this break, I have met with the recommended Psychiatrist; I’m on a healthy path and am recovering from my regression. It’s an amazing feeling to be able to say “I am looking forward to tomorrow, to seeing those three beautiful faces in the morning.” When anxiety and depression have hold of you, saying something like this seems impossible. I am far from a strong woman and mother. Revealing this story isn’t easy for me, but I want other mothers to know it’s ok if you feel anxious or down, it’s ok if you are finally coming to terms with your child’s disability; it’s ok if all you’ve been able to accomplish today is feeding them three meals on the floor in front of the T.V. and it’s ok if you feel completely burned out and want/need a break. BUT… What isn’t ok is when you’re screaming for help and no one is listening. What isn’t ok is if you are seeking help and your doctors aren’t listening to you and prescribe the common medication that is furthest from the right one for you. What isn’t ok is if you are pushed to your breaking point and things don’t change.

Through many years battling anxiety, I have learned therapy is an incredible tool and although you may need medication to help you get through the tough times, you still have the potential to learn how to manage and cope with it; allowing you to live life with it controlled instead of it controlling you. Most importantly, I have learned to lean on others for support. I have found my greatest allies and support systems through Facebook groups. As much as I wish I could say I’ve met these people elsewhere, it is what it is and I wouldn’t have ever met these incredible women without it. One constant I always rely on is their support and when I had to check myself into the hospital, because my doctors wouldn’t listen, I called two of those women—because they’ve been there and they were listening.

If this is the only thing you remember from my story, remember this: YOU AREN’T ALONE! God has always provided a hand to pick me up and it’s my support system; my triplets sisters, my DS tribe. WE AREN’T ALONE and through support you can find love and help.

One thought on “How Anxiety has controlled my happiness.

  1. Thank you for sharing your personal story. It’s so helpful to others when people are able to be open and honest as you have been. Our family story is in no way similar to yours but we have had our own struggles with our son’s ongoing anxiety, sudden losses in our extended family and my own cyclical seretonin related anxieties, particularly post pregnancy. I can honestly say that I whole heartedly agree that the most important and helpful thing to realise is that you are not alone. The support of others is invaluable. I found the group support I needed at a parents group run at my son’s school and it was so helpful and I have made some really good friends there and learned so much from their wonderful support. Best wishes to you and your family.

    Like

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