Alopecia, Part 2: The Hard Things

Anger. Fear. Confusion. Insecurity. Sadness. Selfishness. Shame.

Those are the feelings I had as more and MORE of my hair started to fall out. This was a situation that was beyond my control; and if you know me, you know how much I LOVE to relinquish control!

I was having such a hard time understanding why this was happening. Sure, I had gone to the dermatologist and they had determined it was most likely stress related. I had a baby 8 months ago, we moved towns, helped to start a new business, and just having a family! Logistically, I got it. I understood. Emotionally though, I felt completely disheartened. I felt betrayed. By what, I’m not exactly sure. Maybe myself? My body? God?

From April of 2015 to the end of August of 2015, the amount of hair that I lost was completely overwhelming! I must have had very thick hair. I was honestly so surprised that by June I still had ANY left to lose.

At the beginning of August, for our 5th wedding anniversary, Terrell planned a vacation for us. Just the two of us. Driving down to Florida, taking a cruise to the Bahamas, getting back to Florida and exploring West Palm Beach and Boca Raton. We were so excited! But once we actually got there, it was a battle. Every. Single. Day. All I could think about was how much hair I was losing. Was it visible? Did everyone notice? It was crippling. I just about ruined the trip for us. Thank God for a patient, and understanding husband!

Do you see those cute little scarves tied around my head? Those aren’t to be fashionable…they were to cover the GIANT bald spot on the top of my head. I had a scarf of some sort or a hat on my head during that trip 24/7. Which, while snorkeling, was quite the challenge! I had never felt so insecure in my entire life. I felt out of control of my emotions and also out of control of who I was. I was afraid that I was losing myself.

It was a strange feeling to be experiencing grief over my hair, but I was. This overwhelming sadness just seemed to overtake me. I couldn’t see past the loss. Every handful of hair that came out, a fresh wave of despair would wash over me. I know some would say, ” It’s just hair.” and I may have thought that too at one time. When you are going through it, however, it feels like a lot more than “just hair”. For me, it felt like my  femininity. My womanhood. My very being.

I did NOT want to lose my hair. I did not like feeling embarrassed anytime I went out. I was struggling to find any joy in anything. My sweet husband found a wig shop in West Palm Beach and took me there. When I first sat down to start trying on wigs, I couldn’t help but cry. I knew my life was changing…significantly

The next few months would prove to be some of the most difficult that I had faced up to that point in my life. At night before bed, I would tie scarves around my head to try and see what I would look like with no hair. It didn’t exactly translate!

By the end of August I had so little hair left that I asked a very dear friend of mine to cut it off. About a week after it was cut just below my ears, I couldn’t take it anymore. It was coming out too quickly! I went into my bathroom, shut the door, and shaved the rest of it off. To my surprise, there wasn’t much left to shave. I looked in the mirror and didn’t even cry…I just stared.

Until Terrell got home. Then I cried. Something about him seeing me like that was almost too much for me. From there to the end of December, it all came out. Eyebrows, eyelashes, EVERYTHING!  25 and completely bald, that was my new reality.

 

Alopecia, Part 1: Is This Really Happening?

When I first started this blog, this was not a topic I thought I would write about. Probably because it is very personal and I wasn’t sure I was ready to include it. However, I guess when you subtitle something, “Finding Joy in the Journey” that should include the whole journey. Go figure!

So here we are, I am going to share with you in the next several blog posts all about having alopecia universalis; and how I learned (and am learning) to find joy in that particular journey. Alopecia Universalis is a an autoimmune disorder that affects the hair follicles in your body. Basically, your body thinks your hair follicles are trying to do damage to you and so it destroys them.

Alopecia has 3 types: areata, totalis, and universalis. Areata  is where you just have patches of baldness. Totalis affects hair loss from the shoulders up. And universalis, as you can imagine, is TOTAL BODY HAIR LOSS. Like many people, mine started as areata and worked its way down to universalis.

September 27, 2014 I was laying on the floor playing with my daughters and reached back and felt this strange smooth spot on the back of my head. I didn’t think much of it at the time, but later that afternoon I went to my room to investigate the back of my head. That is when I saw the first bald spot! Ava, my then almost 3 year old, was standing right there with me. I had to send her out so that I didn’t burst into tears in front of her.

Are you serious?? This can’t be real!! Is this really happening?!?!  All of these thoughts ran through my head. I sent the first picture you see to one of my best friends asking if this was normal hair loss for post partum. (I had just had Abigail about 8 months before). Instead of texting me back, she called! Apparently this was not typical.

This began my journey into a season that I thought would be the most difficult season of my entire life. (HA!) Over the next few months, that was the only spot; and to my delight it was fairly easy to hide!

Then in April of 2015, the hair finally started growing back in. What relief! “It’s all over. That wasn’t so bad!” These were just a few of my thoughts. That is until we discovered the next spot…on the front of my head! (Picture #2). A little harder to hide. Thank the Lord for side swept bangs! From then on, every few weeks another spot would pop up. Sometimes BIG, other times smaller. Each time with me thinking, Seriously?! Is this really happening right now?”

I felt totally shocked. I didn’t know how to process what was happening to my body. I could only imagine what the next few months would bring, and I have to say I was having a hard time, “counting it all joy”.

 

 

 

 

 

What is VACTERL?

20170615_194553-1VACTERL is a word I had never heard until November of 2016. It is a word that changed my family’s life. The diagnosis didn’t come at one time. It came slowly over the course of several days.

VACTERL is an acronym, with each letter representing a different system. It is a rare disorder of birth defects grouped together. Not every child born with this association has every letter. I think the “guidelines” are that if you have 3 or more you qualify. Benjamin was born with each of these letters representing a defect to some degree. Below is what each letter stands for and how in Ben’s body it is represented.

V- Vertebral abnormalities. For Ben that means that he was born with a tethered spinal cord, absent S5 and an absent coccyx.(no tailbone).  He had surgery to release the tethered cord on June 12th.

A- Anal atresia. Ben was born with an imperforate anus. Basically, what should be on the outside didn’t make it out. Part of his very first surgery was to create an ostomy site until he was big enough to have the surgery to correct his imperforate anus. It is looking like that surgery will take place late summer/early fall of 2017.

C- Cardiac. Thankfully, Ben’s cardiac stuff is minor. So minor in fact that both Terrell and I forgot that anything had been affected. (We still can’t seem to remember!) He had a slight murmur at birth, which has since resolved and two small holes. One of which has for sure resolved and the other one we get differing answers about. Either way, it seems as though his heart is in good shape and will stay that way!

T- Tracheoesophageal Fistula. When Benjamin was born, his trachea and esophagus were connected. In that same first surgery that I mentioned above, the surgeon was able to ligate or separate them from each other.

E- Esophageal atresia. Ben was born without his esophagus connected to his stomach. We waited just shy of 3 months for it to be long enough to connect. He has to have dilations or stretchings of his esophagus every few weeks at the repair site, to keep it from narrowing in on itself again. Hopefully not too many more of those! He also has reflux, which is common with babies born with this condition. In the future if his reflux continues to worsen, he may need a surgery to wrap his stomach around his esophagus.

R- Renal. One kidney. Yep, just the one! But it works like a champ. We are very fortunate that him having a single kidney is the worst of his renal anomalies. It could be a much different story and it is for a lot of other families.

L- Limb anomalies. And finally the most visible part of our little man’s condition. He was born with bi-lateral radial dysplasia. Which means that Ben’s radial bones in both of his forearms didn’t develop. He was also born without thumbs. These things may or may not be able to be worked on surgically; time will tell.

VACTERL was a word that overwhelmed me 6 months ago. And if I am being honest, it still does some days. But one thing that I have come to learn is that it is more than just a diagnosis of a medical condition. It is new perspective on life. It is a look into the group of parents whose children weren’t born perfectly healthy. It is a community. VACTERL has been one of the hardest adjustments for our family as we face surgeries, therapy appointments, and decisions that at times feel impossible. And while it has been hard, I believe it has made us better people and better parents. So, while this word, this diagnosis, completely changed our lives nearly 7 months ago, I am realizing it did not change our lives for the worse. It changed our lives for the better!

“You’re the Inspiration”

Over the last few weeks, I have had several people tell me that I inspire them or that I am an inspiration.  That is a humbling compliment! I started to think about what it means to inspire and who in my life inspires me.

My children. Ava, for example is the smartest 5 ( 5 ½ if she’s telling you) year old that I have ever met. She has learned so much about life in the last 6 months and has been willing to do just about anything to help with her brother. Or anything else that I might need. She inspires me to be willing to adapt to new circumstances even if it’s a challenge. She has had a hard time learning to deal with the ups and downs of life, but she is always willing to try. That’s inspiring.

Then there’s Abigail, who is so full of life! She is a tough, independent, sweet, little fireball! She is always ready to laugh and have a good time, but can gauge a situation and administer love and compassion with every piece of her. She keeps us laughing and she inspires me to truly count it all joy. She will stop at random times throughout the day to pray because she feels like she needs to talk to the Lord about something, at 3 years old she inspires me to come to Jesus with all of my needs.

And of course there’s Ben. The little man who has had a big life already and he’s just barely 6 months old. He keeps us on our toes, but is such a sweet, happy baby. He inspires me to keep going. Everyday, no matter what, keep going.

Last but not least is my husband, Terrell. He inspires me in more ways than one. Over the course of our 7 years of marriage I have noticed one constant with him. He is a doer. A giver. He is always putting the needs of others before his. Particularly over the last 6 months I have watched him be and do more than I thought possible. He has learned to fix our girls hair. He has taken on all of the challenges with Ben and encouraged me to take a deep breath as we figure it all out. He has become quite the chef and has learned that he really enjoys it! (That one really started about 2 years ago, with Bliss…thank you, Darie!) He inspires me everyday to be selfless. He has shown me what it means to consider others first. But mostly he has shown me that no matter what comes our way, we’re in this together. He inspires me to be in the moment and to love and give with all that I am.

 

I hope that as we continue to share our story with others, that we do inspire and give hope.

Is it well?

When each of my children were born, I had a song that would play over and over in my head. Almost as if the Lord placed it there to “get me through” the labor. With Ava, it was “In Christ Alone”. For Abigail it was “ ‘Tis So Sweet (to trust in Jesus)”. And with Benjamin it was, “It is well (with my soul)”. Little did I know how much that song would challenge me in the coming weeks.

As the first 48 hours of Ben’s life progressed I found myself wondering, but “ Is it well?” Each day over the next week and a half it felt like we were learning something new about our son. Each new thing we learned was often something we had never heard of. Esophageal atresia? Tracheoesphageal fistula? Bi-lateral radial dysplasia? Then there was also the unknown: What was his brain function going to be? Was he strong enough to fight the infection that took over his little body? And the ever-present question in my mind: Will he make it? Will my son survive? Will he be here to live the full life my heart longed for him to have? And so the question filled my mind again, “Is it well?” Was my soul willing to rest and trust in the Lord and His plan not only for Benjamin but for my entire family? Was I able to say no matter what happens, I trust you? The answer wavered. I wasn’t always sure that I had the strength to be the mama that this little guy needed. I never questioned God as to why Benjamin was born with VACTERL, I did trust that He made Ben perfectly in his image. What I did wonder was, “Why do you think I am strong enough to do this? To be his mama? “ The answer didn’t come.

As the days turned into weeks and the weeks into months, I began to realize this new journey I was on with this sweet child was not a sprint. No, it was going to be a marathon. A marathon with hurdles. A marathon with checkpoints. Some of which we sailed through and never looked back! Some of which we circle back towards as we learn how to better care for our son. I still find myself wondering sometimes, “ Is it well?” Is it well when my son was born premature and spent the first 3 ½ months of his life in the NICU? Is it well when he had to be re-admitted just 2 ½ weeks after his initial discharge because his esophagus was narrowing in on itself? Is it well when my 2 daughters would cry at night because their mama wasn’t home and it had been 5 days since they had seen me? Is it well when my husband is pulling double duty as daddy and mama? Is it well when we thought we had lost our son? In each of the moments, I wasn’t 100% sure of the answer. Looking back, however, I can see Jesus walking right beside me. Sometimes holding my hand, sometimes holding me up, and always holding my heart in His hands. And what I can tell you now is, yes, it is well.

*I originally posted this on my Facebook page. My husband suggested it would make a good first post, especially since the blog was named after it.