Triton

Today is the day. I sat in a chair and have begun to write. How long have I talked about it? Ten years to be frank. I have said this to numerous people, but I think I am finally ready. I don’t know…. are you ever really ready to tell your imperfect story? I guess it takes time. We smile, we blend in and we think our own thoughts in our head. Isn’t that “normal”. Who knows. I plan to ramble a bit, because that is how I see my life……a slow motion ramble and then it speeds up and you can’t remember what happened yesterday. I have so much to say so excuse me if I digress….I will try my best.

I saw my husband (who was just a kid in the crowd at the time) and I said in my head “he was going to be mine”. I loved his eyes, his mouth, his skin, everything. His stand off attitude. I call this day 1, but this was a long process. However, I knew in my heart that he was mine and I was his. We had a connection that was inexplicable. We both fought it a bit and so did others, but ultimately we were one. One could say I broke him down. His mom says “he woke up and hit his head and that was the end”. Whatever you need to call it. It was fun, fantastic, beautiful, crazy and it worked. I was 19 and it took him until I was 21 to actually “hit his head” and we were off…..together every second. It was a crazy feeling. The kind where you are just so happy that you can’t feel anything. You are just there. Happy and ignoring everything else in the peripheral.  We could not get enough of each other.  Ying to my yang…….We lived in Santa Barbara and we had our own places, but either way we were together every night. This hasn’t stopped and I am 47. I am proud of our love for each other. I am proud of the person he is. The father he became. He was a kid……a kid and he made the choice to love me and stick by me through thick and thin and that is what he has done. I rarely say all of this so I am in tears as I am writing this, but it is all true. He is crazy, outspoken, makes mistakes, uses wrong words in sentences, but he loves and loves hard. He is loyal to the end. I saw through to this soul at age 19 and could not let go.

After College was crazy. We just laughed and he lived with roommates and so did I.  He got a career working with his friend and I thought I would be a teacher. Again, crazy as life may be….I lived across the street from a woman who was so wonderful she referred me to a friend in the building industry.  Those cheesy high school tests always said I was high in interior design. Who knew? I applied, interviewed and continued with my life. I was taking a second rate Microsoft excel class at Mira Costa and my husband got the message I got the job. He drove over to find me. Who does that……? Someone who loves you feels the excitement you should feel for yourself. He did! I came out of my mind numbing class to find him in his car yelling “you got the job”!!! I could not believe it and looking back now I am so humbled and feel so loved that he did that. We were one and always celebrated OUR successes.

Next was a wedding right? Isn’t that what all girls dream of. I think I did, but looking back at the day it seemed so staged and crazy. Don’t get me wrong, I knew I was marrying the right person I just didn’t know if this was the right way. It felt forced. My dream not his. I don’t know. I just don’t know. The Priest was a wreck and something we still talk about to this day. However, our best friends surrounded us and we felt loved. There is no disputing that. I will never forget my dad (biological dad) saying I looked like Elvira. Yes, my hair was dark, but is that something you want to hear the day before your wedding day? I say no…….Already dealing with insecurities and all these emotions and then there was THAT! Not still angry…..

Wedding down and now what is next…? Baby right? I surely thought so and was obsessed.  I will never forget my College roomie and one of my best friends calling me. I was sitting at my kitchen table. Sun was hitting me in the back and It felt good. She said “are you guys trying….cuz we are”. Are what? To have a baby….She was already pregnant. Soon to find out with twins, but nonetheless Pregnant. I think we tried for about 3 days and I was disappointed I was not pregnant. Really??? So unrealistic. I remember holding one of my other besties newborn baby in their RV in the desert. I just wanted this so bad. I was envious to be honest. Just like I assume anyone who wanted to be pregnant would feel in that moment. I even went to the OB and began to plan. My husband was more the wait and see….It will happen type guy.   Not me….I wanted the dye test. Were my fallopian tubes open? Was I able to have babies? WHAT WAS WRONG??? I exaggerate on the 3 days. It was probably a couple of months. Then I went in to do the all too uncomfortable wand test to see if my insides were healthy. Why they call it a “wand” I have no idea, because it provides no magic. At least until this day…..

I cannot really remember her face or voice, which you think I would. She just looked perplexed at the monitor and then after what seemed like 12 hours she said I think I see something. “See something”? what the hell does that mean. I sat up, wand in tow. She explained it was very early on, but she did see a heart beat. Early on….who cares. I was PREGO!!! I don’t remember too much after that due to the shadow of the rest of this story. I wish I did, but I don’t.  I come around, but not for a bit later.

Here is what I remember as best I can. I was 31 weeks pregnant. Thinking life is perfect and why shouldn’t it be. I married my best friend and I was pregnant. It is picture perfect. The problem with pictures is they can be distorted, fall to the ground, be misinterpreted.  Whatever you want to call it. They can be broken.  I went in for my routine 31 week check up. I had to see a new doctor. My regular was busy and really who cares. I had nothing to fear or question.  Before the examination she sat me down and said “So I understand your baby has club feet which in itself isn’t a big deal, but we should probably refer you to a specialist to do further testing”. Heart sunk, pierced, gone, broken.  No I had not been given this news until that very moment. She thought I had and was aware. In retrospect, I feel awful for this poor doctor. She meant no harm, but I couldn’t see that back then.  I cried, hard, left and called Brian. He in turn called the doctors office screaming. They found me in my car crying. I remember a small tap and I looked up and the receptionist asked me if I would come back in. I can’t remember if I did or didn’t. The rest was a blur.

“Club Feet”….google it. Pretty scary, but there is a method to correct it. Altogether not too bad.  We even joked about kids that were pigeon toed being faster than most. I researched it all. I decided that the Poinseti method was what we would do. A series of weekly casts that would slowly turn the babies feet back to normal.  Done! Fast forward to my first appointment at UCSD. I forget what they were called, all those people staring at me. They just had no personality or compassion.  That is what I remember. Probably a good thing I don’t remember names…..They sat both Brian and I down and explained that our babies head and limbs were not measuring the same as his body in terms of weeks. The confirmed the club feet, but were now concerned with this new discovery. What the HELL! What was happening? I started to sweat. I always do when I stress out. They suggested we do an amniocentesis to rule out any chromosomal abnormalities. I thought ok, lets go….NOW! No we had to wait 2 days. It seemed like 407 days. Why was I welcoming this procedure at 31 weeks? The baby was so big already and that needle is enormous. So guided by an ultrasound they performed an amniocentesis. Then we had to wait a week for the results. If 2 days felt like 407 you can imagine how this wait felt like. I didn’t get out of bed.  Our Master bedroom was on the bottom floor. I don’t think my husband knew what to say or do. I wouldn’t either if my wife was in the deepest depression known to man. My sister in law called in sick and came down from LA for a week. She just laid by me. Did not speak, tried to feed me and I cannot thank her enough. I didn’t have to ask. She just did.

The 300-year wait was over and we were able to go in and we were told “No chromosomal abnormalities”. Just club feet…..Just club feet….Just that. This was easy. Now just to wait for his arrival.  We named him Triton. Too many tests to ignore that he was a boy. It was on his wall and his crib was waiting. Waiting.

I went into labor at 38 weeks.  Normal pains, normal everything. I was slightly curious what a club foot would look like. I already had Triton lined up to be seen at the clinic so I felt assured that all was ok.  Labor easy as far as that process can be easy. He came out and cried. He cried, but he didn’t make a grimace. I didn’t notice really and neither did Brian. What I do remember is the nurses and doctors face.  It wasn’t happy. It was confused. I shoved it aside and held my little 6 lb baby boy. I was a mom and for that minute it was all that mattered.

For as long as I remember wanting to be a mom I remember wanting to breastfeed. Maybe that is strange, but it is just something I was looking forward to. I can’t explain it. I guess it was just a motherly picture I had in my head. Me holding the baby, providing, feeling loved, no questions…… So we get to our room. Yes, our room. We got our own room. I had my bag, Triton’s bag and we were settled.  I attempted to breastfeed. He just kind of stared at me. Lovingly, like he was trying to do what he wanted to do, but couldn’t.  The nurse explained that sometimes babies don’t latch on immediately.  She took him and I pumped.  She tried multiple times and he would just turn blue as if he was drowning. I didn’t understand…at all. I remember asking why and they said “it seemed as if his mouth was not working”.

Well that led us to a recommendation that he brought to Children’s for further discussion. I am sorry, but they knew something was wrong, but didn’t know what. I could feel it in my bones. My soul. My heart.  They took him via ambulance and Brian and I drove silent behind it down to La Jolla Children’s hospital.   By the time we got to the NICU we passed a desk that had a book open. Why we noticed or even paid attention, but we both did. They were looking in a book for my son’s disorder. Then they introduced us to “her”. I won’t even say her name. She was a dysmorphologist. No smile, no hello, nothing.  She sat down knee to knee with Brian and I was on the other side. She said “Your son has a rare disorder called Moebius.  He most likely will not be normal and we are going to do the best we can do”.  I remember nothing after that with the exception of Brian wiping the sweat off my cheek. I was in a full blown panic attack.  I left the hospital that day without my baby, my heart in my hands broken, I was broken. Everything was broken.

I don’t think that my husband and I talked that night. If we did I don’t remember. We were two broken souls.  If there is such a thing as a broken soul, ours were. I woke up the next morning and robotically got dressed and drove myself back down to La Jolla. I sat and held him. I stared at him. I pumped every 2 hours on a hospital pump that felt like it may just pull my nipple off. I didn’t eat. I just went through my routine. Then they told us he needed more care than they could offer and were transferring him to Children’s in San Diego. Another ambulance ride. Another silent drive following down to our new home for the next 4 weeks.

Children’s was nice. The nurses talked and you got to know them on a personal level. They asked how you were. Have you eaten? Do you need anything? Me……..I wanted to scream “NOT TO BE HERE”!! If you are there long enough you get to know other people with similar struggles. I remember a child that was there and he was 12 months old. His mom refused to hold him, but would sit next to him for hours. I guess we all grieve differently. I didn’t understand her way, but maybe she thought the same about me. Who knows? Friends came to visit and did their well wishes. It was always an awkward thing, because you didn’t want them to struggle for words, but you had none. So it made for a silent embrace and just glad that they were there. I will never forget one of my friends came to visit. She said “we all have something…some people are assholes and your son can’t smile, but may be the nicest person….we all have something”. I thank her for that and it resonated. To be clear Moebius is a syndrome that effects the 6th and 7th cranial nerves.  So that means no smiling, no grimacing, no lateral eye movement. It is very rare and when Triton was born there were only 80 documented cases in the US. He was in the NICU because he couldn’t eat. He couldn’t suck to be specific. I pumped every 2 hours and they fed him through his NG tube. One of the afternoons, I left him at feeding time to go pump more milk and I came back and discovered the nurse did not hook up the feeding tube correctly. His bed was flooded with my hard earned, nipple burning breast milk. I LOST IT. I feel bad now, but I didn’t that day. I was mad at the world, at the nurse, at everyone. 

It became my routine to go to Children’s, not eat, not talk, hold my baby and curse the world. Go home and do it all again.  It became my norm. Our norm, but Brian was working and trying to hold shit together.  Then it came to the day that we demanded we take him home. Stipulation was a G tube being placed to feed him. Button in the tummy. They also wanted to do a fundoplication. For all of us who are not doctors that means opening the body and twisting the stomach so a person could never throw up or aspirate. Safety first, but my first reaction as was Brian’s was that this child had never even spit up. Never….not once. Why would we do this piece? I remember Brian asking what if he was in College and needed to barf then what would happen? I will never forget that. It stuck in my head like a thorn. What would College be like? Would he go to College? College…..why was I worried about that now?  We decided and had to demand that we were not going to do that procedure. They treated us as if we were the worst parents in America.  However, we were the parents and he was ours. This was our decision. We took the G tube and denied the other. Then on October 31st we were able to take Triton home. He was so tiny and fragile.  I was in the possession of my own child, but I felt like I may be in trouble for doing something wrong. It was such a strange sensation.  He was still only 6lbs give or take and it felt like this wasn’t real life.  Honestly, after that day I blanked out. I was going through the motions trying to be normal. What is normal you ask? You bring your baby home and take care of them all day and night. You wake up each morning and put him in the stroller for a walk. So I did that.  Every morning I woke up and walked him in his stroller.  He was quiet, sweet, huge eyes and just looked at me like “I made it” and “I love you”.  I finally fell in love. I know that sounds awful, but I was a robot until that point.  Broken, mentally drained and just almost outside of my body. 

I don’t think any human can understand the sense of loss, shame, anger or sadness of having a child with issues. I don’t mean you can’t feel for that person or family, but to truly go through it is inexplicable. There is no way to describe it. Beyond Moebius, Triton was severely delayed. He did not walk until he was 4 years old.  We had to put him through 2 helmets due to how long he laid on his head. He did have the Ponseti method for his club feet. Just a ding in his surgical career.  He doesn’t speak and only uses a talking device to get his words out. He is the most loving, sweet little human I could have ever asked for. He looks just like Brian. He hugs like a teddy bear and open mouth kisses us on the daily. 

We have been blessed with so many friends and family in our lives that understand and love him just the way we do. It takes just as much of a special friend and family to understand us.  Just this past Christmas morning my husband and I both couldn’t sleep so we were up at 5am.  Triton sleeps in our bed on Christmas eve so he doesn’t bust Santa. We were in the kitchen and my husband said to me “our 18 year old just slept with us last night. I am so happy God gave him to us, because he knew I would always want a kid to be with us”.  This again is something that gets me through the rough days. We are blessed and lucky.  God gave him to us. He was a gift. He showed us a world through different lenses.  One that slowed things down. He will live with us forever. I am stressed about the future, but I feel lucky to have him in our lives. I think this was a rock thrown in the lake. It has had ripples that affect us, friends, family and I never imagined this would be my life. Some days I am tired, mad and frustrated, but those are the days where his arms around my neck make it all ok.

The early years were harder health wise. He was sick a lot.  I remember him being in the hospital at 3 months with RSV.  Breathing treatments, alarms, doctors, uncomfortable sleeping situations. My mom was always by my side. My husband wasn’t the hospital type guy. I get it. Believe me. I wasn’t the hospital type gal either, but such as life. We divided and conquered. It is how we worked the best.  I looked at my mom and told her I felt sick. Nauseous and I wanted to throw up, but couldn’t. My mom looked at me and said “that would be funny if you were pregnant”.  I stopped and just stared at her. Intently and with purpose; as if she made it so. I don’t know how many days passed before I actually took a test. Yes, a pregnancy test. It was so vividly POSITIVE I almost barfed and not because I was actually pregnant. It was more about the fact that I had a 3 month old with special needs and yes that was about all the cause for alarm was about. My husband came home that night and I must have had a weird look on my face, because he just said “What”? I told him to sit down and he looked bewildered.  He finally broke the silence and said “did you crash the car”?  I kind of laughed and just said “Well it isn’t bad news or good news” How does one explain that you just had a baby, but now you are going to have another one. I know it has happened a thousand times, but how does one break that actually?  He just looked at me and sat down. “I am not happy, but I am not upset…..I am confused”.  Literally, the funniest conversation we have had. I felt the same. Loved, confused, happy, scared, panicked, but ultimately ready to build this little thing we call our family.  One year and two days after saying hello to Triton, we said hello to Phoenix.  This was a chubby little bundle of joy. Perfect as the medical community would put it. We set off on our crazy little journey raising these two little boys. Healed and happy. We just took every day one at a time. It was chaotic at times. However, it was our chaos and we embraced it. We found our stride. It is what you do. With anything, you always need to find your space in a situation. We found ours. Triton is now 18 and Phoenix is now 17. I cherish our crazy life. It is not normal or typical, but it is ours. I guess what I am trying to say is no matter the hurdle you may face that it is surmountable. You were put in this position with purpose. It may take you one day or it may take you 3 years, but trust me you will find your Ah-ha moment.  You may be an advocate for your child full force or you may sit back and just love your child. Nothing is right or wrong. It is your story. Embrace it all, breathe it in and love hard. You are blessed even if you don’t feel like that today. 

 

 

Moebius Syndrome Awareness Day Press Release