Finding "Normal"

Why do we try so hard to be normal? To fit in? To be status quo? The reality of “normal” is basic to me.

What I have learned over the past 3 years of being married is that nothing about our lives is normal.

My husband and I met in August of 2015 and married 3 months later. If that doesn’t scream ABNORMAL then I don’t know what would.

Then, in May of 2017, we discovered I was 5 months pregnant. We were shocked! Elated! Overwhelmed! Those are understatements to say the least but we felt blessed. I wasn’t supposed to have children. But, that’s another story to be told at a later date.

We were having our first child and it was going to be a girl! She was due in September of 2017. We hustled to prepare ourselves physically, mentally and emotionally. Our family and friends rallied around us. They calmed our fears as we only had 3 months to prepare for our baby’s arrival.

A couple of months later, a month or so before she was due to arrive, I was feeling a bit under the weather. Throughout the day, I also hadn’t felt any movement from our baby. We were concerned about it, so my husband and I went to the hospital. We were sitting in the parking lot of the hospital debating whether to go in or not. It was approaching midnight and I started to feel her hiccup. I looked at my husband and said, “Let’s go home I think she is OK. I can feel her hiccuping now and the doctor said that is considered movement. I don’t want to be a bother.” He looked at me and said, “It’s better to be safe than sorry. Let’s just go in and get a peace of mind.” We checked in and within 10 minutes I was hooked up to the baby monitor. Her heart rate was perfect but 30 minutes later there was still no movement. I was sent to get a special ultrasound. In this ultrasound, there are certain things that a baby must do in those 30 minutes. Everything adds up to a point system. If they drop below 8 points then something must be done. The nurse poked and pushed my tummy trying to provoke a movement. In those 30 minutes our baby scored 2 out of 8. This was cause for concern.

I was rushed to the operating room to have an emergency C-section. Fear and anxiety set in. I was trembling uncontrollably, afraid for our baby. Is she breathing? Will she live? I wasn’t ready. Our baby wasn’t due for another month! Our house wasn’t in order. We were still going through baby shower gifts. I didn’t even have my hospital bag packed yet! This was not normal. This is not what I expected; neither was it the way I imagined the birth of our baby. Shortly thereafter, our baby girl was born.

She was a month early and weighed 4 pounds 2 ounces. She was perfect in every way; normal in every way. We were told if she dropped below 4 pounds she would need to go into the NICU. But we were consistent with her feedings, so she only lost 2 ounces (which she gained back prior to leaving the hospital). We were released to go home!

Once we were home, life was so good, so normal. As normal as it gets for two young new parents. Lots of diapers, late night feedings, and early mornings. I was running on dry shampoo while coffee was coursing through our veins.

Life the first month and a half of our new adventure was normal—until spots started appearing all over our sweet girl. We went back and forth with doctors trying to figure out what was going on. She had no fever, no loss of appetite, and she was consistently wet. She had no other symptoms.

Four months and hundreds of spots later she was diagnosed through a skin biopsy with an incurable, non-contagious skin condition called Mastocytosis. It is a rare skin condition affecting 1 in 200,000 children and adults.

After she was diagnosed we were sent home with topical steroids to treat these spots and a few papers on a brief description of what this diagnoses entailed. We were in disbelief that this was our life. That our daughter was affected with this condition. What would her life look like now? What would people think? How would we explain this to our family, our friends, random people at the grocery store, but most importantly to our daughter when she was old enough to know the difference? We dove into finding our own answers, reached out to Facebook groups and researched every day for months to help our daughter. We were lost. All of her doctors knew nothing about it! We were the ones educating them and that just felt wrong.

Fast forward to present time. She is now seen by a whole new care team that spent their residency around other Mastocytosis patients. They treat it differently opposed to how we were instructed by the previous physicians. Paisley is on two daily anti-histamines to keep her mast cells from getting “angry”. We carry an EpiPen and give her Benadryl as needed for itching and/or flushing episodes. We make all of her skin care products from essential oils and other plant-based products. (More information about the condition is on the About page.)

Needless to say she is thriving, we are thriving.

Our world has changed. It is better. It doesn’t look like society’s definition of “normal”, but it is our normal.

Thinking back to when I dreamed of how my life would look in a marriage and through parenthood I never thought I would face challenges like the ones I have in the last 3 years.

But today I am glad. I am glad our family defines normal differently. Each day is unique. Each day that passes gets better.

I think we strive so hard to be just like the person next to us and we forget that no single person’s purpose is the same. We each have something to offer. We each bring something valuable to the table. We need to stop looking side to side and comparing our lives to everyone around us. Our journey is meant to be unique, different and beautiful.

Diversity.

Isn’t that what makes life beautiful? Let’s not be afraid to be abnormal.

My hope is that this blog will bring you a sense of peace. To know that each one of you has your own journey. That life isn’t always rainbows and unicorns and that is OK. But know that you are not alone. I hope that you will embark on this beautiful journey with me; learning how to navigate through life, marriage, parenthood and all of the in-between.

I will be posting weekly. Until next time…be Unique.

-manic mom