#GypsyGoals

#GypsyGoals

by Amanda Martin

 

Last you heard from us, we had just started our thirty-four-day road trip. Life on the road is a smoothie of emotions and adventures, and I love me some smoothies. The only bad part is that the smoothie doesn’t stick long before you are hungry again.

Bugs, cranky kids, a dog with endless energy, heat, a blown tire, keys locked in the car with phones, and long hours in the car. For some just one of these would be a deterrent, but for me it fills my heart. I loved the long hours on the road with little distraction, which encouraged stories and jokes to be shared. Exploring led to imagination games, worlds created, and new things to be discovered.

Returning home from something that stimulating is so hard. Traveling is hard but there is a certain funk I get into when we return to a permanent location with no plans to be out exploring on the calendar. I can see it in all of us, this funk or frustration that boils in us. We know something is missing but it just comes out as irritation. This is where my gypsy dreams come in…

I have a dream of selling everything we own, moving into a travel trailer, and basing out of somewhere.

Jeff and I have never been good with plans and I used to think that that was a bad thing. The more confident I get about how important living your life for you and no one else is, the more I think we should embrace our “flaws.” Selling all your possessions and living in a trailer may sound like a nightmare or a “worst case scenario” for some, but for me it means spending less on a stagnant living place, non-essentials, and being able to pick up and go when we want.  These early years of our children’s lives goes by so quickly, and I want to make the most of it. I know that soon my boys will be big and won’t want to live in such a small space, but I am banking on a couple of years.

I want to show my children that life doesn’t have to be a certain path. Life should be about finding passions and honing in on them. There will always be people who think you should be doing something else, but living your truth and finding your happy is first. How do you show and instill this life on your kids? The only way I can think of is by leading by example.

I never really found my thing or passion. It could just be me but until now I always thought, who has the time? Passions were something for kids who hadn’t yet entered “the real world.” How sad is that? So over this past year, with the help of my family, I have been trying anything and everything that scares me or has caught my attention at some point.

Going to therapy – check

Yoga – check

Heights (went nighttime zip lining and flying) – check

Learning to cook – check

Becoming a minimalist – chec … (doesn’t get the whole check because we are still in the process)

Looming – working on it

Sewing – just got my sewing machine!

Living in a travel trailer- NEXT ON THE LIST

You get the idea.

So yes, living in a travel trailer is my dream, that being said it is going to be a big change full of its own challenges. Jeff is claustrophobic so four people and one large dog in a tiny space should be fine. Jon loves to run, jump, and bounce off the walls, being any animal he can imagine and let’s not forget those dance moves. Sawyer is nine months old and a moving machine, making it his goal to explore anything he can by way of his mouth. Zen…well, Zen is a giant puppy with more energy than all of us put together. Then there is me and my need for yoga space and crafts…. It will all be okay (I say to myself somewhat convincingly).

If we don’t do it now, then when?

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Roadtrippin’

Roadtrippin’

Tonight We Ride!

by Amanda Martin

 

We packed our car and were hopeful for the journey ahead. Six days on the road. The first night, we stayed in a hotel in Salina, Kansas. We arrived to the hotel very late since we couldn’t leave until Jeff and Jon tested for their belt advancements in karate. With the successful completion of belt testing and Jon letting us know that Pretend Doris (Doris is his favorite friend at karate) would also be joining us on our trip, we headed to our house to pick up the final member of our family, Zen the dog. To our surprise, he had not eaten the couch or gone to the bathroom anywhere we could find, a great omen for our trip. At nine o’clock, we loaded up in the car and yelled, “Whooo…road trip!”  and were off.

The first three hours of our drive was blissful. Jon started off happy and telling the same joke a zillion times. Don’t stop me if you have heard this one: “Hey, hey, hey mommy, what do you call a three humped camel?” Jon answers himself, as slow as he possibly can: “I don’t know, what do you call a three humped camel?”  (I know we have watched Zootopia possibly thirty times). Jon smiled like it was the first time he had ever said it: “Pregnant!” (insert hysterical and very slow laugh here). Now this went on for some time, with Jon occasionally switching up what animal it was in the joke, not quite understanding that the joke didn’t really work with any other animals but we played along. Then Jeff and I realized it was quiet…Jon, Sawyer, Pretend Doris, and Zen were all fast asleep. At the three-hour mark since we had left, we heard Sawyer stirring and then Jon.

As we were on no time schedule, we pulled off at the nearest exit and parked so we could feed Sawyer, walk Zen, and just stretch our legs. One and a half hours until our first destination. Again, somehow the kids were in great moods.

I think this is a good point in the story to tell you that we did not look at this hotel before booking…. At one forty-five a.m. we pulled in. First we saw a cop car and an officer in front of one of the rooms, so I guess security is good, right? Next, all the lights were off in the check-in room and I had to buzz a little doorbell thing that was hanging on the lovely bullet-proof glass. A gentleman came up to the glass to ask me what I needed in a very annoyed fashion. The gentleman passed the room key under the slot and we were off to see what awaited us. I went first. The room was actually not as bad as I expected, at least at first glance. Then we checked out the bathroom…it was perfect for a short girl like myself and had a lovely cement nook right next to the shower in case someone wanted to lie in wait to watch whomever was showering, a very thoughtful addition…they truly thought of everything. We brought only what we needed in from the car and hoped to go right to sleep. Zen found a nice mousetrap that had been left out…again, very thoughtful. Jeff and I were tired, but we remembered the kids had just gotten up from their lovely three-hour nap that we were previously so excited about.

Two hours of broken sleep later, Jon fell off his bed and banged his already stitched-up eye on the AC unit. “So sleep isn’t happening, you want coffee?” Jeff asked as he got out of bed. I couldn’t talk so I just gesticulated my best hand-sign for a giant cup. I love when someone knows you well enough to understand the meaning behind your flailing arms and no words need to be spoken. “Alright, let’s do this!” Jeff came bursting into the room with way too much energy. We laughed, I think out of delirium and out of a ‘well I guess this is really happening’ feeling. Coffee, shower, Jeff took the kids and dog out for a walk so me and Pretend Doris could get in a little morning yoga and then we were back in the car.

We tried to plan the days with no longer than four and a half hour drives so that we could take our time in the mornings, wait until Sawyer was ready for his morning nap, and then drive during that time. When he woke up, we would break for lunch and walk Zen, stretch or do whatever we needed to. The first stop we made was for gas and a potty break for Jon. We had just left about fifteen minutes before so Jeff took him inside while the rest of us waited in the car. Jon came out stomping his feet with his arms crossed over his chest, Jeff following him with a big smile. Jon climbed into his car seat and explained that he was “so angry with daddy.” “Oh ya?” I asked. “I went poop and daddy flushed it and I wanted to flush it!” Jeff tried to keep a straight face while apologizing a few times before Jon finally agreed to forgive him on the condition that next time it would be all Jon.

Colorado! I have always wanted to go to Colorado. Apparently not the parts that we went through but it was still exciting. After three hours, we arrived at our destination. This was awkward because our navigation application, whom we named Karen so we could yell at her, had told us the campsite was an hour closer than it actually was. Very humid, hundred-degree weather and flies that would not stop biting us helped us slowly attempt to assemble our tent. The actual tent was easy; we had had set it up two other times when we camped in our living room and when Jeff and Jon slept in our backyard a few weeks past. This time, the weather forecast called for a late evening storm so the rain flap would be required. Rain flap… rain flap…the instructions should have read: engineering degree preferred. After about thirty minutes of Jon and I working it out like a puzzle, corners first, we got it…well we thought we did. It semi-resembled the picture included and we had staked it down so many times it wasn’t going anywhere. Lucky for us and our rain flap, it didn’t end up storming that night.

At this point, I’m thinking, “So I guess we are really doing this, we are about to see if this whole outdoors life is for us/will the kids and pup be little buggers.” As much as I like a good story, I was pretty grateful that Sawyer went down with the sun. Jon and I fell asleep reading and Jeff took the dog for the longest walk he could muster. All slept through the night…until the sun came up a little before six o’clock. With such an early start to the day, we got on the road before the heat and the flies returned.

The wonderful thing about Jeff’s Job is that he can do it remotely. I decided to drive so that when the kids fell asleep, Jeff could work. Not a bad gig to be able to be putting miles on the road while putting in a day at work.

We were about twenty minutes from our next campsite when Jon announced that he was starving and needed to eat. We too were starting to get hungry so we assured him that the next place we saw to grab something to eat, we would stop…well there wasn’t anything. Literally, nothing. Our exit was approaching when we read that the town’s population was one so we decided to keep going until we found a place to eat and would then double back once we did. An hour later we found food, and I was not about to head backwards an hour, so I made the suggestion that we keep moving. Our next stop was about another four hours away in Lyman, Wyoming.

Wyoming is not a place I ever really thought too much about but now, having been there, it gives me all the feels. It is so beautiful. It is exactly what I pictured Colorado looking like. Large green fields, trickling creeks, and snowcapped mountains in the distance. Even our pit stops looked like a picture on a postcard. Over eight hours on the road, this had been our longest day yet. Noticing we were in a small town and had seen a few restaurants, we thought it best not to push our luck trying to find more later so we grabbed some Mexican food and headed back up the highway a little bit to a park we had passed on our way in. We ate our food and talked about what a pleasant travel day it had been and how lucky we are to have such awesome road companions.

Jeff and I have never been very good at taking great days for what they are. If it was going good, we would think, “Hey, let’s make it better!” Being that this had been a good day traveling, I should have known that we were going to try and top it. I know, let’s turn our six days of little driving spurts of no more than four and a half hours into an all-nighter! Perfect.

Plan: feed the little ones, run them out at the park, get on the road and travel until dawn. High-five Jeff, we got this!

WORST. IDEA. EVER!

It would be another ten hours on the road, eleven with stops.

So according to our calculations we would arrive by seven in the morning.

Even now in hindsight, I just don’t really understand how we both thought this was the way to go. But off we went.

Utah! So Utah was meant to be a quick pit stop for caffeine and gas. Sawyer, Jon, and I took Zen on a little walk while Jeff filled up the car and got the necessary beverages…or so I thought. We came walking back to the pump and I noticed Jeff looking at me kind of blankly, a WTF look. This can’t be good…

“Please tell me you have the keys!?” Jeff threw the knowing question my way. For those of you who hate to be left in suspense, I did not have the keys. So cool, now we are stuck in Utah an hour and a half into our ten-hour marathon, at a gas station, phones and wallets in the car, its dark, getting pretty cold and no dogs are allowed in the store. Jeff kept looking at me like I was going to bring on the thunder, looking for a good place to hide until the storm he knew was coming would blow over.

There was nowhere to go. I mean really. So I sat quietly gathering my thoughts on how I would play this. Would I just throw him through the window? That would get the car open but then our drive would be cold. Do I ask a stranger for a ride for me and my beautiful children to California? That’s no good because the car seats were in the car that was locked. No, I chanted our road trip mantra to myself: this is supposed to be fun. And because I could not let Jeff completely off the hook, I let him stew for a few more minutes wondering what I would do. At last I laughed a, “Well, fuck me, right?”

Un-parallelized, Jeff went inside to call our insurance’s tow service. Jon, Sawyer, and I did some nice yoga on the sidewalk while Zen tried to eat all the cigarette butts littering the ground around us. About an hour and thirty dollars out-of-pocket cost later, we were let back into our car.

Jeff, who was still playing nice, said he would take the first shift. I got about three hours of broken sleep when Jeff asked if I could drive. “I got this this babe! I am the road trip master.” He was too tired to argue and just switched.

“All right, all right, I got this,” I thought to myself as I bounced with fake energy. “Fake it ‘till you make it, that’s what I always say.” I was talking to myself at this point. Jeff could fall asleep at the drop of a hat when he wasn’t tired so within seconds he was snoring next to me. “That should be helpful in my staying awake, haha. Oh god, this is embarrassing.” I looked around in reassurance that no one was actually awake and listening to my ramblings. With everyone fast asleep, I drove for what felt like forever. It was not. I think I had been driving for a total of about twenty minutes when Jeff woke up to the sound of the roadside rumble strip. “You okay?” Jeff asked half-asleep. “Remember when I said ‘ya babe, I got this?’ I don’t got this.” It was news to me that my night vision was no more, but hey, live and learn right? So…Jeff is awesome. He had it. Occasionally I opened my eyes to see him head banging to death metal, thought it was weird, and then would pass back out. I woke up in Nevada at a Starbucks! “My main man! Jeff, yes!” Jeff looked at me with a death stare. “Just don’t, I can’t deal with this right now,” he said as he gestured to all of me. No worries, I knew it was nothing coffee couldn’t fix.

This might be a good time for a little back story. I have been in the process of switching all my beauty products to something natural. Before we had left my not-so-natural deodorant had run out so I had Jeff pick me a new brand up at Whole Foods. What better time to test it out than on a trip where we would be trapped in a car, not bathing and sweating together?

So back in the car Jeff hopped with a giant coffee. We were only two hours from my parent’s cabin in Calpine, California. After a few minutes of Jeff getting another boost of caffeine, we were all now allowed to talk. What were the first sweet words my husband would say to me but “you smell like a rotting onion.” “No, no sir that is the smell of organic-ness that will not give me cancer in the armpits. I like it. Would you rather me smell or have cancer?”

“You really don’t want me answering that” Jeff said as he cracked his window.

We arrived!

Jon’s Heart: A Mother’s View – Final Installment

Jon’s Heart: A Mother’s View

by Amanda Martin

 

Two surgeries down and one to go.

People often ask how we did it. We always say, “It’s simple: we had to.”

It remains the hardest thing we have ever gone through but at the same time it was all we knew; it was completely insane yet totally normal. We had never been parents before so our experience was this.

When we got home, things were pretty much the same as before. Jon was on a feeding tube, he had three medicines to be administered three times a day, we needed to watch his oxygen saturation levels and weight. It was depressing thinking that this would be our life forever. As the days and weeks went by, we slowly got to lower doses of the medicines and he eventually got off them completely (except for aspirin which he will be on daily for the rest of his life) and doctor appointments became less frequent.

Our lives were still focused completely on getting him ready for his third surgery. Even though it was just shy of two years away, it didn’t feel like much time. We still had to be careful of people being sick around him; influenza normally ended with us in the hospital for a few days making sure he didn’t get dehydrated. Play dates, date nights, dinner parties were all missed if someone we were meeting up with had a runny nose or a cough. We just couldn’t risk it.

Some friends understood, others didn’t. We lost friends who couldn’t understand that we couldn’t be relied on at this point in our lives to be at every event. Our child came first no matter the cost. Other friends went out of their way to support us. Josh and Jessica put on a Zumba-thon fundraiser. Dave and Jessica held an MMA event donating a portion of ticket sales and even had the arena sing happy first birthday to Jon. My parents created a board filled with members of family and friends to put on a golf tournament with a silent auction run completely by volunteers. All funds were put into an account to be used for Jon’s future medical expenses. There was so many constant faces at these events always there to support us (Sarah, the whole Gill family, Shaleena, Cory, my parents, Brandon, my sister and brother-in-law, the Martin’s, Debi, the Long’s, the Smith family, and so many more).

By this time, Jon had become a little person with a big personality. His imagination was and continues to be something to seriously envy. Within a day he could have been in thirty different worlds playing with all his imaginary friends, something he still does today. Jon proves that you can rise above anything you are afflicted by or are going through. He could run and play but every few minutes would have to sit down to catch his breath.

For the next two-ish years, we had to work on Jon eating and gaining weight. Jon had to be a minimum of thirty pounds by his third surgery which was to be around his third birthday. We sought medical help due to Jon not thriving (gaining weight) and were told our best bet was a G-tube (keep in mind that we had been through most other alternatives at this point). For those who don’t know, a G-tube is a tube inserted through surgery directly into the stomach to inject nutrition into the digestive system. Jeff and I both agreed that was not an option. We tried every trick we could to get him to eat. It seemed the only thing he really liked or would eat a good amount of was chicken strips. So with encouragement to get him to his desired weight, he ate lots and lots of chicken strips.

His third birthday rolled around and it was time to schedule his surgery. June 2, 2014, was the date. You would think the third time around that we would have known what to expect. This time my son was a walking, talking human with a beautiful spirit that I had had the privilege to watch grow. How were we to explain to him what was going to happen? How were we supposed to keep a three-year-old in a bed for recovery? This time family wouldn’t take no for an answer and came with us. My mom, dad, my sister Ashlee, my brother Brandon, my sister-in-law Brittney, my brother-in-law Chris, their son Dean and my husband’s aunt Tammy all came to wish Jon well. Jon was completely obsessed with ninja turtles at this point so my mom rented a ninja turtle costume complete with a giant turtle head and put it on to visit him in our hotel room before we headed to the hospital. As we waited in the pediatric reception room before surgery, Jon put on a pair of tiny glasses from a Build-a-Bear that his uncle Alec had made for him and visited with the other toys and people who he had brought. Jeff, Jon, and I moved to the triage room and consulted with the surgeon and his team. Again they were allowing me to bring my baby to the operating room…but this time was much different. Jon was alert, looking around at me as to why I was allowing this all to happen. People in masks were buzzing about and machines were making noises all around. The OR is an intimidating place for an adult let alone a three-year-old. I held him as much as I could while he was laying on the operating table. He screamed and cried trying to climb further back into my arms. The nurses struggled to place a mask on his face until finally he was out. I broke down, not being able to wait until we were out of the room. I held my babies hand and kissed his forehead, told him I loved him, and walked out. I was able to control my emotions by the time the nurse had walked me back to the waiting room where Jeff and Tammy were waiting just enough until I locked eyes with Jeff…and then I lost it again. Together we waited, got updates, and waited some more. We got word that he was in the CVICU (Cardiovascular Intensive Care Unit) but there was a shift change so we had to wait a little longer. Jeff and I went in first. Then Jeff left and let Tammy come in and see him. We both cried just staring at Jon. Eventually Tammy left  for home and it was just us again. I was not going to let my son wake up alone so Jeff went and got me the biggest coffee he could find. The nurse was nice enough to allow me to drink it by his bed. From that point on Jeff and I took shifts and never let him not have one of us there. After about four or five days they informed us that they wanted to start physical therapy which involved him trying to stand, walk, and sit. He screamed and cried in pain; they just kept pushing him. I finally insisted that they leave and that we could try later. Jon never walked the whole time we were there and not until two days after we arrived home. Wonderful people sent him gifts and cards, called, and sent videos. My friend Annie works at a nurse there and visited us every day she worked until we were discharged around two weeks later.

We were home with no scheduled surgeries ahead of us. This gave me peace and anxiety at the same time. Before we had a plan and knew what to expect but now was a waiting and guessing game. After Jon was weaned off his medicines, we were told that he could go about being a basically normal kid. We had no idea how to do that but we were going to figure it out. I tried not to be so worried anytime he was just being a toddler, but it was and still is nearly impossible.

Today we have all started to heal and talk to Jon about his heart and his story but we are careful not to make him feel like he is handicapped in any way. We just want him to know how strong and amazing he is. Surgeries, hospital stays, and a lack of social interactions caused some delays in his speech and motor skills but they are nothing that my bright boy isn’t overcoming. He has just finished preschool and is off to kindergarten in the fall. Jon is the most thoughtful, protective big brother and is kicking butt at karate five days a week, three hours a day, with all the energy in the world. The future is unknown; we still have some hurdles ahead of us. Jon has a single ventricle heart and there is no fixing that. We are on the lookout for strokes, and heart failure. Jon will most likely need a pacemaker before twenty and a heart transplant at some point.

I have missed special moments (like my best friend’s wedding), lost friends and myself. I have enough stress to last me a couple of lifetimes. Sometimes life is hard…really hard, but when I look at Jon and how happy and full of life he is I would do it all again in a heartbeat. I would never have wished this on my son or anyone else but we have learned that we are blessed to know each day is a blessing. We will all recover and deal with whatever comes next, but for right now we plan on living and embracing life and making it fun.

 

Picture Journal of Jon’s Journey

 

 

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Jon’s Heart: A Mother’s View – Part 2

Jon’s Heart: A Mother’s View

by Amanda Martin

 

Part 2

 

Jeff and I decided to be alone in the delivery room. We were warned we would only get a few moments to hold Jon before they had to bring him down to the Neo-natal Intensive Care Unit (NICU) and we wanted to savor it. Our families respected our decision but wanted to be there for us if we needed anything so they gathered in the waiting room.

It was like a weird dream. One moment he wasn’t there and the next he was in my arms. A few moments later, they were taking him from me. I insisted that I would be fine and pushed Jeff to go with Jon to the NICU. Family slowly came in to give their congratulations and were excited they got a peak at the little guy on his way down to get checked out. I was surprised when Jeff, a nurse, and Jon returned back to the room. His oxygen was better than they expected so I was able to get a little more time with him and the family was able to meet him. Then back to the NICU he went after about ten or fifteen minutes and that’s where he stayed for a week. The hospital allowed us to stay in an empty room in the basement after I was discharged.

Before we could leave, I was trained on how to record his weight, when to feed him, how much he needed to eat, to record the frequency and volume of his bowel movements, test his blood oxygen saturation levels, and to relay my data to a team of nurses. Seven days after Jon was born, the three of us left the hospital. Overwhelmed and not knowing what was coming next, we had started this adventure we knew we would have to take.

After two weeks at home and three weeks since Jon had been born, I noticed his oxygen saturation levels lowering. We took him into his cardiologist and it was decided that it was time for his first surgery. We left the next day down to Lucille Packard Children’s Hospital on the Stanford Campus in Palo Alto. We checked into a hotel and throughout that week brought our son in for a series of tests they had to get done before they could operate.

There was no turning back. For months we had been preparing for this moment….

The surgeon and his team allowed me to carry my four-week old son into the operating room until he was sedated. I let go of his little hand and waited until I reached the hall where Jeff was waiting before I fell to the floor and cried. I gathered myself off the floor. The nurse led Jeff and I to a waiting room where we would wait for updates. Again we had asked for our space with our families. Insisting they wanted to come just for support, I said no. I didn’t want other people’s emotions on top of my own. I just could not let myself free of feeling like I had to be strong. So, alone, Jeff and I waited. With every opening of the door our bodies stiffened waiting to see if they were coming for us.

Finally, our time came when they updated us with news that the surgery was successful. The nurse told us it would probably be an hour until we could see him but until then the surgeon, Dr. Mohan Reddy, would be in to give us all the details, then someone would take us to our son. Nothing, and I mean nothing, could have prepared me for seeing my now six-pound son lying on that hospital bed swollen as far as his skin would stretch, tubes everywhere, a giant incision down his tiny chest, and a room full of people trading information on what he had been through and what the medical plan was going forward.

I tried to never leave his side. I left for shift changes and to get an hour or two of sleep and then I was back. The first two days he had a private room. I had left for a quick shower and returned to Jon being moved to what is called the pod. It’s about ten babies in a giant room. Beeps from all the monitors and bright lights were hardly a good place for recovery, but I sat myself down on the tall chair next to my son. I watched babies crash around me, having to be rushed out so that medical teams could save their lives. Some babies were left alone with only nurses to care for them because their families had to work or take care of their other children. It was depressing. About three weeks later, I was told that we were getting ready to be discharged but before we left I would have to get training again on how to keep his incision clean, how to administer his medicines, and what to look for in case of problems.

Long story short, we got home and stayed doing our same routine of feedings and medicine. Family and friends visited for a week or so but had to be put on hold when Jon was put on a feeding tube and puked after every meal; a symptom of his heart failing. Most days I sat in puke soaked clothes just holding and trying to console my baby. If anyone came to the house, they had to wash their hands and wear masks. At four months of age Jon went back for his second surgery. We felt like we had just left and were still trying to recuperate, but off we went back down to Palo Alto. Another week’s worth of testing and staying in a hotel, just trying to keep our little boy comfortable, trying to keep every ‘what if’ scenario out of our heads. The day of the surgery came. We waited in the waiting room for a few hours, then in the room where they prepare the patient for surgery for a while longer, when we heard a loud alarm. Code Blue. We understandably were bumped from our scheduled surgery time. I understand that now, but in the moment I just cried. I wanted it to be over. All the waiting and planning, the stress that comes with that day, and we had to do it all over again. We were moved to a few days later. We waited in the same waiting room we had been in just months before. Hours went by as Jeff and I snuggled under our sons blanket we had waiting for him. When it was time to see our boy, we rushed to his room where we were informed of his state and what the new plan was. Jon was a champion. They said that the surgery went textbook. It was pretty much the same as the first time. Jon had his own room for a day or so then was moved to the pod. It got harder and harder to leave him when the shift change came because he was much more alert this time. He knew when we were there and when we weren’t. We mainly had wonderful nurses that would assure us we were okay to take breaks and go back to the hotel to sleep, but one day, after Jon’s blood transfusions, we had a traveling nurse who went on break. I noticed my son was in pain and made the covering nurse check him. A blood embolism had formed and was the size of half an egg on his little leg and hard as a rock. She tried to act like it was no big deal that the other nurse didn’t see it in his scan but I could tell it was a very big deal and I was not happy. I made a scene and let’s just say that the nurse was not seen again during our stay. Other than that and a romantic wedding anniversary we spent by the bed of our son, it was pretty much like the first recovery. This time being discharged, I was a little more enthusiastic. We had until Jon was three years old for his next surgery. I didn’t know what that time would look like but I was ready to find out.

Jon’s Heart: A Mother’s View

Jon’s Heart: A Mother’s View

by Amanda Martin

Part 1

Disclaimer: This is still very raw for me. I only in the last couple months have been able to talk about it, and even now I cry when I do and while I type this. If I miss something or forget to thank someone I am truly sorry.

Three times….Three times I walked my baby into an operating room and trusted strangers to bring my son back to me.

Twenty-two weeks pregnant, Jeff and I excitedly arrived at my doctor’s appointment to find out the gender of our child. As far as we knew it was just like every other ultra-sound with the bonus of some super cute 3D pictures as souvenirs. After we received word that we were expecting a son, the technician told us very nonchalantly that she couldn’t quite get all the pictures she needed because of the way the baby was positioned and that we would need to come back for another appointment. High off the news that we were having a son, we made another appointment thinking nothing of it except that we might get some more images. A week later we went back. The technician started with the wand and the jelly. After a few minutes she excused herself and came back in with a woman and very casually announced, “Oh…yup, this baby has a heart defect.”

They moved us into another room to discuss our options. From this point on during our appointment I don’t know what was said. It was like in the movies when you see someone hear life altering news and you see people talking but there is no noise. I knew Jeff had taken over the talking, he tried his best to hold me and explain what was going on knowing nothing was sinking in.

The office had set us up with a cardiologist in the city to get a diagnosis and go from there. Jeff at this point was working in Oakland, CA, and was meeting me there so my mom insisted on driving me. The three of us sat in the room until we met Dr. Behera. She confirmed the defect and explained that our son had tricuspid atresia, a rare heart defect where one of his atrial ventricle wasn’t going to develop. Again…I froze. Jeff came to my rescue again and very firmly asked, “Okay, so how do we fix it?” She told us it could not be fixed but maintained through a series of three surgeries.

Throughout the rest of my pregnancy I was numb. I look back and remember thinking to myself ‘smile, be happy for the picture’ but my face just looks sad. We had weekly appointments of ultrasounds, non-stress tests, meeting the famous surgeon who would be performing Jon’s surgeries, and being introduced to a family who had just had a son with the same defect. I was on autopilot not allowing myself to feel anything. I couldn’t pick out a crib or clothes. Everything lead me back to what if I don’t get to take my son home…what if…I just couldn’t allow myself to go there even though I knew I was already there.

Friends, family, and strangers rallied around our son and us as they held fundraisers, baby showers, and offered their support in any way they could. People I barely knew and some I had never met soon became my biggest support (shout out to Maya, Sarah, Lizzy and Shaleena I can never thank you enough).

Delivered in San Francisco, Jon (named after my dad) came on the morning of March 3rd, 2011, weighing 5 pounds and 10 ounces. He was beautiful.

Mission…Possible?

Mission…Possible?

by Amanda Martin

 

Me: “Hey Jon, what do you want to do this summer?”

Jon: “Camping and go to California to see Nana and Papa.”

 

Cool, so now you are caught up on how we got started on this crazy plan of ours. We are excited nervous…let’s just say that we have a lot of emotions about road tripping and camping our way from Oklahoma to California over a five-day span. Taking a five-year-old, seven-month old, and a not yet potty-trained puppy on this type of trip might be a little bit crazy but we hope it will be a great adventure that we will one day be able to laugh about.

One of the biggest life changes we have wanted to make is for our family to get outdoors and create an atmosphere where our children can form a relationship with nature. Having said this, up to this point our family has been very much so an indoor family. Jeff and I both grew up camping but the most Jon has camped was one night a couple weeks ago in our backyard. So packing for our little family of four plus pup for an extended long camping/road trip should be easy…like, I won’t forget anything…I got this…it’s fine…it’s…ya…moving on back to the fun! We will be camping in Kansas, Colorado, Wyoming, Utah, Nevada, and then California.

Getting to see states that I have never seen before, exploring new places with my family, and making memories is what it is all about. Jeff and I expect to have the ‘what were we thinking’ moments (I think you would have to be super human not to, so we decided to take a picture of the two of us smiling. Like the family statement, the picture will be our reminder of why we are doing it, why it is all worth it.

If you would have asked me a year ago if I would have done this with even one kid and no puppy, I would have given you a million excuses why I couldn’t. Now I almost feel like I’m daring myself to take on something that seems impossible or far-fetched. I think mission accomplished with this one. We have about three weeks until we set off. Did I mention that we are tent camping without an air mattress? Stay tuned…

Make A Statement

Make A Statement

by Amanda Martin

 

What’s your life or family statement?

What’s that you say? Life or family statement? Let me explain.

When I got pregnant with our first child, Jon, my mind would race with all the things I wanted for him. Being a planner and a list maker, some might even say a control freak, I made a list. Everything I could think of regarding raising a child went on it. I took those thoughts and made a parenting statement. There are so many different opinions and pressures when it comes to parenting (or anything for that matter) that it becomes easy to forget what you set out to accomplish.

As any parent will tell you, parenting is HARD! Even when you are doing your best you feel like you are missing a step. When I felt like I was stumbling or lost (which was a lot), I would go back to my parenting statement. Were my choices reflecting the statement? If not, I knew that it was time to switch things up. For someone (not to keep you guessing, it was me) who was fighting post-partum depression (more on that later), it was my greatest support. So why did it take us so long to make a family statement or even have it occur to us make one?

It all became clear shortly after our second son, Sawyer, was born. I had begun a yoga practice which would end in Shavasana (for you non-yogis that’s a lying flat on your back relaxation pose) and it was a ‘no duh’ moment. I almost hate it when that happens. How could I have missed it? Needless to say, I made my husband Jeff sit down with me and make a list. What are the things we are waiting for to line up so we can have the life we want? What were those things? Just to give an example of some of the things on our list: more family time; basically living outdoors; less stress; clean eating (I ended up going vegetarian); less work hours; meditation; yoga; reading; travel; peaceful parenting; open communication between ourselves and our children; spirituality; happy souls; less possessions; and let’s not forget coffee!

Were we living that life? That was a big NO. In making our list, we also realized what we didn’t want, such as: a life chasing possessions; long work hours; basically everything we were doing to cut this list short. Saying that you are going to make a life change is one thing, going about it is quite another. Looking at all the changes was off-putting and overwhelming. We decided that one small step at a time would be our best bet in achieving what we were aiming for. Jeff got a new job where he could make his own hours and work from home, able to take breaks when I needed to make lunch or needed some other help with the kids. We downsized our bills to only the bare necessities. Jeff’s dad, Jim, graciously opened his home to us and invited us to make it ours. Every day we spent more and more time outdoors. We bought camping equipment so that on a whim we can pick up and head out. We adopted a puppy to encourage us to get out and be active. We schedule yoga, meditation, and karate weekly like any other appointment we can’t miss, making sure that we make that time for them.

Hourly we struggled, but as the days passed on and we got closer and closer to living our statement we noticed that we had become more pleasant. Less stressed out. Happier. More fulfilled.

Again, we are not saying that we are perfect or have it all figured out. We are just people who have made choices that we hope change us for the better.

Suggestion:

  1. Make a list
  2. Make a statement
  3. Look at your cons list
  4. Cross the cons/negativity out
  5. Take steps to honor your statement
  6. Live the life you want

It’s so easy to make plans for some far off time. What is hard is realizing that you can be changing your today to fit the lifestyle you want. Sure, it may take a million little steps just to get started, but every step, no matter how small, is a step in the right direction. Change is scary but once you make it through it is so rewarding, you’ll never want to go back.