Sixteen years ago today, my beautiful first-born son came into the world. He was an enormous 9 lbs 1 oz baby. He never seemed fragile almost toddler like from the beginning. At only a day old, he found a way to un-swaddle himself and kick the covers right off. He’s never liked being hot running his ceiling fan year around.
Being a mother was never a goal or dream of mine. Actually, I thought for most of my younger life that I never wanted to have children. They were needy creatures. I struggled to manage myself. How could I possibly be responsible for another human being? At 31, the proverbial clock started ticking – with vengeance. Every baby was adorable. My need to hold and cuddle the little beings was painful. It was time. And, despite my husband’s hesitation, I insisted that we start a family.
Pregnancy came easy. I loved the attention and my changing body. Every appointment with the midwives was exciting. It was going to be a boy! Boys are my favorite (sorry girls). There was a small scare during the pregnancy with too much fluid surrounding the baby. It was a month of worry that the baby had Spina Bifida or some other life altering condition, but all was ruled out at the following ultrasound.
There was a nagging little thought that never left my mind. My husband’s father had “early onset Alzheimer’s.” The doctor’s didn’t have it exactly right, but it was close and the best guess at the time (mid 80s). I feared that perhaps my husband may end up with the same condition. We were older parents starting in our 30’s to have children.
Our boy was born October 7, 2002. It was a difficult delivery but the miracle of giving birth far outweighed the physical and emotional discomfort (see the birth story written in 2002 at the end of this post). A nurse at the hospital commented that “this one was special.” Of course he was. He was ours. We loved him instantly.
Fast forward to 2018. My first-born is turning 16. From the day he came into this world, I feared the day he turned 16 and began driving. Teenage boys lose their minds behind the wheel (and in many other ways). But, this day has become even more significant over the last year as my husband is no longer able to drive our children (three boys). I need another driver. He is ready. He needs to escape the chaos of our home at times. His father, my husband, has a degenerative, terminal brain disease. It is called Frontotemporal Dementia. It is cruel.
So, this week, my husband, who has lost much of his sense of judgement and some of his memory especially for new information, decided to berate my oldest about how he was handling his disease. My husband explained that his own aunt had the disease, his own father had the disease, and my son could have it, too, because it is hereditary. Now, this is information that has not been kept from my kids but certainly managed and navigated carefully up to this point.
It took 5 minutes for my son to Google the odds of getting FTD if a parent has a gene mutation (out of respect for our family please do not Google – you really do not need to know). And so, out of the blue, I get a text from my son who is in his bedroom, and I’m in the kitchen. He knows. He knows the ugly truth. Four days before his 16th birthday. He knows that possibility of his life being cut short. He knows the possibility of turning into his father. A father that he struggles to relate to. A father that he no longer respects as the head of our household. A father that has trouble shopping at the grocery store. A father than cannot remember where the clean dishes need to go.
And I weep. I weep like I never have before. I crumble into a pile of pain. How do I make this right? How do I find the words to tell my husband how mad I am without killing him with my hurt? How do I console my son? How do I rebuild the trust because my boy now feels that I’ve kept a critical piece of information from him?
This is too much for any child to process. Heck. I can’t process it as an adult. Why now? Why 4 days before his birthday? His 16th birthday will always be overshadowed by the fear that one day he, too, will have FTD. We don’t know. There is a test after he’s 18 that can be performed. But, is it the best decision to do so?
And, so, the circle of life continues. Today is the day my son came into this world with all my hopes and dreams of an amazing life. It is still possible. It is. There is a lot of life to live. But, I’d be a liar if I didn’t also admit that I’m ridiculously scared for my son. Scared that he can’t handle the unknown but real possibility of having this disease. Scared that he will stop living his life. Scared that he might hurt himself to relieve the pain. Completely scared.
All my son and I can do is talk. Talk more. Be honest. Painfully honest. And survive.
First Born’s Plight (his birth story):
Well, I was supposed to arrive on September 28th, but I decided that I wasn’t quite ready to leave the comfort of my 9 month home. My mommy was getting anxious. I know this because she all of sudden went on long walks and ate lots of spicy foods. Someone told her that this would help coax me out, but I wasn’t going to have any part of it. After almost a week of additional luxury in my comfy home, I heard that someone was going to force me out on Monday, October 7th. This did not sit well with me at all. How dare anyone tell me when to get moving?
On the evening of Saturday, Oct 5th, my mommy and daddy went out for Mexican food. Well, I had just about had enough of the Mexican fare. My mommy joked early on that I was going to come out smelling like a taco. She wasn’t too far off on that one. I just couldn’t stand another bite of salsa so thought I would make my move out to the world.
Around 10 pm Saturday night, things were put into motion for my arrival. Mommy started timing the contractions. Around 11 pm, they were coming every five minutes and she sensed that I was on my way. My mommy stayed up all night timing the contractions and contacted her midwife at 6 am to let her know what was happening. The midwife suggested staying home as long as possible. Mommy was discouraged but took the doctor’s orders. She went on a walk, took a long bath, and even played Yahtzee with daddy. She won by the way and it wasn’t because daddy let her!
Around 3 pm on Saturday, those darn contractions were just getting too strong to handle at home. Mommy contacted the midwife and headed off to the hospital with daddy. After checking in and working through lots of scary forms, mommy and daddy settled into the room and watched my heart beat and contractions on the fancy machines. The midwife said that mommy was 4 cm dilated! Wow… I was really on the way. A few minutes later my Mimi, Aunt Cherie, Aunt Rhonda and Aunt Ginger arrived at the hospital. Everyone was just so excited to meet me.
My mommy and daddy worked hard at handling all the contractions. Sometime around 7 pm mommy found out that she was 7 cm dilated. After some quick math, she calculated that she had been in labor for 20 hours. She continued to walk and work through the contractions. Around 9 pm, she decided to take the medicine to numb her tummy and legs.
Things seemingly moved quickly from there. She was checked again around 10 pm and was already at 9 cm. Oh how exciting, all the nurses started preparing the room for my arrival. Little did they know that I had my own tricks up my sleeve. I decided to hold on a little longer. After all, my mommy had said that it would be neat to have a baby on the Australian Labour Day especially since she and her twin sister were born on the US Labor Day.
Around midnight, the midwife checked mom again and nothing had changed. I know mommy was deflated. The midwife and nurses decided that it was time to “encourage” me to come out. The nurse gave mommy some of that medicine to make the contractions harder. I realized that there was no use to fight it any more, but I still took my sweet little time getting ready for mommy to get me out. Sometime close to 3:45 am I was in position and ready.
This is where mommy really had to work. Daddy thought he was going to watch from the sidelines, but the nurse and midwife put him to work by handing him my mommy’s leg and giving him specific instructions on what to do. Mommy started working on pushing me out. I fought like crazy to stay in, though. You see most babies’ heart beats decrease when their mommy’s start pushing on them. My heat beat increased. The nurse just couldn’t believe how hard I was fighting staying in my comfy home. Little does the nurse know my mommy and daddy. They are the most competitive folks I know – wasn’t it obvious from the Yahtzee game earlier. I guess I got that from them.
My mommy pushed and pushed and pushed. After nearly 2 hours, I finally gave in. I mean how many times can you hear your mommy say, “I will not be defeated.” At 5:37 am, I entered this world. I did bite the midwife and kick mommy on the way out, though. As I was being carried over to the special table for babies I heard my mommy say, “Oh my, that is a big baby.” You see the midwife already knew that I was going to be a big boy when it took nearly 5 hours for mommy to go from 9 cm to 10 cm.
The special NICU doctors made sure that I got all that yucky stuff out of my mouth and lungs. Everyone in the room was anxiously anticipating the trip to the scale. A nurse announced that I was 9 lbs and 1 oz. After all the cleaning, weighing, and checking over they finally put me in my mommy’s arms. She had the biggest smile on her face. Daddy looked pretty happy too!
Our Frontotemporal Dementia Journey 
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