Reflecting on Jayleena’s Healing Journey

Today is my perpetual-baby’s 9th birthday. Wow. It seems like just yesterday that I was on a business trip where my phone had been confiscated, and my boss’ cell phone rang. He passed me the phone with a huge smirk on his face, assuming it was my jealous husband. Instead I heard, “You need to get home RIGHT NOW! We pick up a baby at 10am tomorrow morning.”

It was nearly 10 pm. So, I verbally tormented my boss for not driving us back to the hotel fast enough, and for choosing to stop for chocolate before he would complete the drive. I remember saying as I beamed with excitement, “Seriously? Your chocolate craving is more important than me getting home to pick up our new baby?” I am fairly certain I drove the 2 hours back home faster than I should have because I wanted to get home so badly. I shouldn’t have bothered, because we couldn’t sleep anyway.

I was nervous about raising a girl, but also excited about all the wonderful things that would mean as well. We were wondering how severe her cocaine withdrawals would be, and worried that we wouldn’t be able to care for her needs well enough. Craig wondered if we could really love her as much as we did our biological son. That concern was the main reason we chose the foster-to-adopt option for growing our family. The night continued to drag by. We can confirm that a watched clock doesn’t tick any faster than a watched pot boils.

ImageFinally the moment came. She was the most gorgeous little china doll (and I emphasize little, she was merely 5 pounds). She gazed at us as if she knew we were there to smother her in love and affection. She had us wrapped around her little finger before we even left the hospital. But she had a loooong road ahead of her, and so did we. We will never know how many of her challenges were due to the cocaine, but in her first five years and again in her eighth year we have worked with numerous doctors, specialists, holistic health providers, nutritionists, therapists, and agency workers to help her overcome:

  • Severe reflux: Her reflux almost took her life multiple times and caused us numerous white-knuckled ambulance rides. It would come out in a steady stream, fast enough that we couldn’t suction fast enough, but slow enough to slowly fill her lungs as she breathed. Once, our son Logan saved her life when he ran out, only minutes after I had laid her down for a nap, yelling that she was turning blue and had white stuff coming out of her nose.
  • Severe asthma: Doctors don’t like to diagnose babies with asthma anymore. They try and term it Reactive Airway Disease instead. But, after two separate occasions where her lung collapsed and we almost missed it and no relief from the lower-end medications, they moved it to severe asthma and loaded her with multiple medications. You may be asking yourself how we could possibly miss a collapsed lung. The doctor himself almost missed it too because she wouldn’t cry and she would still be smiling as if all was OK. The only sign we would get is that she would stop moving around.
  • Severe Sensory Integration Disorder: Jayleena rarely cried. We assumed it was because she didn’t have much air. At around 11 months old, she was also VERY rough. She always squeezed too hard, wanted us to play rougher than we were comfortable, and was regularly hurting her siblings (by this point, we had also accepted twins into our home). I was starting to think maybe something was off, but we really just assumed it was her personality. Then one day, when Jayleena was around 11 months old, she climbed our 2 foot gate at the top of our stairs and threw herself down, scraping skin off her head and arms as she fell. When she got to the bottom, she stood up and looked at me as I desperately tried to remove the gate…AND SHE GIGGLED!! She giggled as if she had gotten away with something, then ran off in a “chase me” kind of way. I was nauseous. When I turned the corner, I found her sitting on our hard wood floor, finger painting from the pool of blood that had collected around her. That was all I needed to push until we got the diagnosis. We were thankful that it wasn’t hereditary sensory and autonomic neuropathy, since that cannot be cured, but it still required a lot of occupational therapy to help her get to where she can at least know she is hurt.
  • Food Allergies: Because our son had food allergies and intolerances, we recognized the signs fairly quickly. Besides her reflux and asthma (which are potential symptoms), she also had bowel movements that would literally burn away the skin on her buttocks to the point where there were literally patches with NO skin. She would cry uncontrollably after she ate some foods, and would break out in hives regularly. Eventually, she presented with anaphylaxis reactions. Since we had already helped our son navigate the food allergy path, we began working with allergists and immunologists fairly quickly.
  • Extreme Anger/Frustration: And, I do mean extreme. Ask any of our friends or caregivers who helped us during that time. We rarely knew what set her off, but once set off she didn’t stop…sometimes for over 10 hours. She would scream, kick so hard she put holes in our walls, bang her head until it bled, and hurt other people (she broke my back molar by headbutting me with her skull). It would take all my strength to hold her down and stop her from hurting herself.
  • Benign Occipital Epilepsy of Childhood and Non-Obstructive Sleep Apnea: I have written quite a few blog posts on this one since it is the most recent, so please check my archives if you want to learn more.

My point is just to share with those of you who are struggling with similar challenges and behaviors in your own children that there IS hope. I remember feeling like there was none and that Jayleena would struggle her entire life. BUT, You CAN work through it and get to a better place if you listen to your instincts, trust those instincts, and act on them. Even if your husband, your parents, or your best friends don’t see what you see, then ask them to try and trust you or at least respect your feelings in the matter. I am not saying to completely disregard your loved ones’ opinions. I am merely saying that if you carefully consider their input, but you still know in your gut that things are not right, then keep pushing until you do feel things are right. You are the one who has to live with your decisions later. Ask yourself, “If I am wrong and I keep pushing will it harm my child?” “If I am right and there is more to this, could doing nothing harm my child?” Then, do what you feel your gut is telling you to do. If people call you crazy, let them. Who cares? If you don’t believe the doctor has the right answer, then get another opinion, or even a third.

ImageIt took me four different neurologist visits before we finally found out why Jayleena wasn’t feeling pain and how to help her. If fighting the status quo and standing up for what I believe with her medical providers makes me a crazy Mom, then I embrace that label proudly! As I mentioned, today is my baby’s 9th birthday and she is now a happy, healthy child who is a successful competitive gymnast. She has a group of best friends and a BFF that she has enjoyed since Kindergarten. She has regular hopes and dreams, without any fear of being restricted from her ability to achieve them.

I reflect on how far we’ve come, and again I am happy I pushed as much and as frequently as I had to in order to get to the source of the issues and resolve them. All the criticism we received means nothing now. All we have to do is look at her and our other three children who we also had to fight for, and we know it was what we were meant to do (I will write a blog post about our other children’s stories on their birthdays too).  It was really hard work, and it was completely worth it. We cannot even find words to describe how much we love her and how much joy she brings to all of our lives.

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To learn more about the cleanse options, supplements, or essential oils I recommend, contact me using the form below or at alicia@healthytangents.com to request information or to schedule a wellness consultation.

Disclaimer: I am not a Physician. I am a wife, a mom, a certified health coach, and someone who loves learning about natural wellness tools and sharing with others the incredible things I learn through my classes, research, personal experiences, and the experiences of friends and family. These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure, or prevent disease. Rather, they are intended to support your body in its efforts to restore balance and maintain health.

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