It was a rough year. It started with a beautiful wedding and ended with new life. But the in between was not so full of light and happiness. It was dark and sad and depressing… It wasn’t just my husband and i who were hurting, but our families were too. My family had suffered some losses. My husband’s family were fighting for their grandma to survive. And this year we were pregnant too. It was not a typical you have a pregnancy glow type. I was sick, and so was our baby. At our 20 week ultrasound they found something was wrong with his heart, If he made it to birth they’d have to do open heart surgery.
The only happiness i felt was seeing my sister in law kiss her husband on their wedding day, everytime Ryker kicked reassuring me he was still in there fighting for his life, and every time Sy my little man would give brother a kiss (aka kiss my belly). Sweetest thing!
But those things were short lived, and reality would set in. I would ask myself, ‘are these kicks all i will ever know of my littlest man.’ And ‘will Sy only know brother by the kisses he gave my belly?’ Will my boys ever play together, will they ever fight with each other? will they be friends? Then my thoughts would go to Ryke, will he survive? will he make it to surgery, what will surgery be like. will he survive the surgery. why is this happening? i don’t want these thoughts. I want to know he’ll be Sy’s little brother, and our littlest man. This isn’t fair we are already so attached, we love him, he is a part of our family. How could someone be telling me he could leave so soon. I was just getting to know him.
Drs didn’t think my littlest man would be strong enough for surgery, his heart was large. They told us statistically no baby has survived with a heart of this size. And his heart being so large, it hindered his lung growth. He would need strong lungs to pump his stitched up heart after surgery. His lungs being underdeveloped, lowered the chances of survival after surgery. You also ask yourself if you’re doing the right thing…. how do you know? Do you put a tiny little human who doesn’t even know what life is through surgery? (surgery, its such a small word. like love.. you don’t really know what it’s like until you’re thrown into it.) All you want is for your tiny little human to be in your arms and safe. So you decide surgery is the only option. We researched many children’s hospitals through out the nation. We found one that we thought was best for us. And we transferred care. 1200 miles away from home. Sylas and I moved to my parents, 3 hours from the children’s hospital. Much closer than being near 20 hours away. My husband had to stay home to work. he’d come for the weekly dr visits and once they were over he’d have to fly right back home to work.
So there I was 7 months pregnant, I’d been living with my parents, two siblings, and my grandma for a month. It was short lived I had to finish the rest of my pregnancy closer to the hospital. I went to a Dr’s visit and they told me things are getting worse, not with just him but me. Contracting, already. Stress, i could hardly eat from morning sickness. (Lasted the whole pregnancy.) So I packed my things again, left familiar faces, and moved 45 minutes away from the hospital and lived with my moms friends mom (confusing i know ;[ ). But amazing woman for opening her house to me, I was basically a stranger. She’s a flight attendant, so as you can imagine she was gone a bit and my husband I was still only seeing once a week for visits.
It was a lonely month
At my 37 week visit, September 4th, i was still contracting and sadly Ryker’s movements had declined. They did an ultrasound to discover he was in the beginning stages of heart failure. It was time to induce labor. It was the big day, our families flew in and a couple close friends. He was born around 11 am September 5. I held him for maybe 10 seconds and they took him from my arms. My husband and mother in law went with him. As they rolled him out of the room they let all our family and friends see him and get there pictures of him just incase this was the only time they will get to meet him. They surrounded his little incubator with so much love. My husband took video of it all for me. And then they rolled him away from his little bubble of love to the Intensive Care Unit. I couldn’t go my doctors said i wasn’t ready, I had lost a little more blood than they would have liked. I only got to see him for 10 seconds. and he was gone. I felt so robbed, and empty. No more safe little kicks reassuring me of his little life. I just cried. Will i ever hold him again, will my husband get to ever hold him. Will Sy be able to ever give his little brother real kisses? So many questions flooding my mind.
I was ready to go see him. Finally at 6pm my doctors cleared me so my husband rolled me in a wheel chair to see him. It had been 7 hours since i had seen Ryker. My husband was with him, watching him get poked all over for iv lines and many other lines. The spot Ryker was at first in the ICU was crowded there was hardly any room for anything but nurses and medical supplies. Babies all around in incubators, they called it the POD. So many babies. We get to Ryke’s incubator and he is bruised and bloody from pokes, so many needle pokes. It was hard his veins were tiny. He also had a breathing tube in his mouth with a lot of tape holding it in place. Tape covering his sweet little face. What does he look like with out all this stuff on him? Will i ever know him without all of this? I just wanted to rip everything off of him and hold him in my arms to keep him safe. My baby was in pain and there was nothing I could do for him. I just squeezed his little foot with one hand and he squeezed my finger from my other hand. His grip was strong.
He was strong.
We just stared at all the tubes and wires surrounding him keeping him alive. When he would cry it was silent, the breathing tube didn’t allow the vocals to touch. A sad silent crying face. I squeezed his foot. It was all I could do. That night they did lots of tests, X-rays, and ultrasounds. They had no plans yet for surgery. He was only living because medicine was working his heart for him and air was being pushed in his lungs. Again i asked myself if we were doing the right thing. He was so innocent and was feeling the horrors of the world already.
A couple days after birth, our families went home. My husbands family took Sy with them. No matter what anyone tells you in that moment you send a child away so you can be with another child you feel horrible. I couldn’t shake the feeling that i was a terrible parent. It still haunts me. Like in some little way I let him down, or made him feel not wanted. You don’t listen to people’s positive outlook on the situation. You just feel like a huge piece of shit. At least for me, that’s how i felt. I was choosing one child over the other.
Our families were gone now. We packed all of our things again moved to the Ronald McDonald House. Now we were 5 minutes from the hospital. My husband was finally with me full time. But not Sy. My family still wasn’t whole. I cried not just for my little baby, i cried for Sy too..
Sy and Ry.
Eleven days after birth and lots of tests and trials to see if Ryker could survive on his own were fails, they decided he was ready for surgery. Those eleven days were awful. A waiting game. He fought infection. A nurse bumped a small tube off of his breathing machine, I watched my son trying his hardest to breath from human error. Nothing will take that image of Ryker suffocating out of my head. And experiencing tests and trials that weren’t suppose to happen, that did. He went through a lot and more than he should have while waiting for a decision on if he can make it to surgery. Sep 16 was the day they were ready to do surgery. They called us that morning, “we’re ready to take your son in for surgery, please come sign a piece of paper.” Our families flew back in for the surgery bringing Sylas back with them. That first hug after not seeing Sy for what felt like eternity was the only thing that held me together that day.
My husband and I sat with Ryke until the operating room was ready. They come in and tell you how they’ll start. and what will happen and all the things that may go wrong and oh he’ll need a blood transfusion. Then you sign your name on a piece of paper speaking for an 11 day old baby, consenting for them to under go open heart surgery. Again, “Is this the right thing?”. They ask you to give your last kisses and feet squeezes and then back away while they prepare to move him to the OR. The surgeon walks in and lets you know he will take the best care of your little man and they roll away with your 5 and half pound baby.
There are no words or feelings for that moment.
Once they take him away, they ask you to go sit in a waiting area and they give you a little pager like you would get at a restaurant while waiting for a table. Every time it vibrates, they will come and meet you in a little room with little couches and have an update for you. It vibrated every hour for 8 hours, with an update. And every time it vibrated, my stomach flew into my throat and I was terrified what i might hear.
After 8 hours of surgery, and 8 updates he was out of surgery. The actual parts they replaced went smoothly they said, but his heart was not beating right. He had what they called JET, irregular heartbeats. Which caused him to be put on what is called an ECMO machine. (A huge machine that pumps your heart and lungs for you. Its big, with lots of tubes and wires every where, with lots of blood flowing through it, basically life support) About an hour after surgery is over they page you one last time and let you know you can go see your baby thats on life support…..
Before I go any further, let me tell you a little about Ryker, he came out with a head full of dark hair and once the blue tone faded from his skin he had a little California tan. So for a 11 days I saw a tiny little baby with lots of life in his eyes, pain but life no doubt. And his cali tan. When we rode the elevator up to the the 18th floor, back to the ICU where he was again after surgery, I was expecting to see my little tan man. We arrive at his room he’s no longer in the pod with other babies, he’s in his own private room now. His tan was gone, he was white pale white, with no life to him and his chest still open with a special tape and paper keeping it enclosed. You could literally see his heart beating. His now shrunken down heart with new parts in it. And he was swollen. He wasn’t the same, and he never will be the same after going through that. We will never be the same. I don’t think i will ever not feel how i did when i think about that moment. Even now I am balling thinking about it typing this. It was unreal, I think about that moment and it doesn’t feel real.
It was graphic.
We were in there 5 minutes before the shock wore off from the site of seeing our baby in this condition. Nurses and Drs are spitting words at us. You don’t remember those words or conversations very well. Telling you about the ecmo machine and where we can touch him. Someone telling you how and where to touch your baby. You just nod with tears over flowing. I broke. I couldn’t be in the room anymore. My husband just held me, like he was keeping me together. After we put ourselves together we were ready to face family. We told them no one should see him like this. It was too sad.
The day after surgery and things settling our families left again, and again taking Sy with them. It was harder this time. I didn’t know when I would see him again. We squeezed and hugged and kissed Sy and we hugged our sisters and brothers, moms and dads and they left us again to go back home.
Now comes the hard part, seeing if his heart will regain it’s strength and he can come off of the ECMO machine. We just sat with him in his room. Brigham (my husband) started a blog to update family and friends with Ryker’s status. We couldn’t keep up with our calls and text from people. We’d take turns talking to him and holding his hand or foot. Rubbing his head. And when he would open his big sad eyes with all tubes hanging out of him, tape covering his face and his chest open, again I asked, “Did we do the right thing? No little baby should have to suffer like this, it’s not fair.” And we would just cry asking him to please keep fighting because we’re selfish and love him and can’t picture our lives without him.
Our days were never relaxed, it was hard to feed ourselves. There were not many food choices close to us. We did not always have transportation being in a different state and all, so we bought little pedal razor scooters and we rode them too and from the hospital and the RMH (Ronald Mcdonald House). Being 5 minutes from the hospital there were a lot of back and forth between the hospital and the RMH. Eating, napping, showering. It was exhausting. We never felt rested. We were always tired.
Three days after surgery, his chest still open with large tubes full of pumping blood from the ECMO machine that were sticking directly in his heart were ready to come out. They were ready to see if he was strong enough to live without life support. They took out the giant tubes and removed the giant ECMO machine from his room. His chest was still open, his heart and he himself was too swollen for them to close it up. BUT ECMO was gone, this was our first big step to ensuring he would survive. Our families couldn’t return for this big step. It was a lot of back and forth. Luckily my father in law lived close and he came for support. He too savored his moments with Ryker. Just sitting with him, talking to him. Letting him know he was loved. We were so happy ECMO was gone, but again short lived. The Drs never had hope, and when they would talk to us, their eyes looked sad. And we would return to being sad and depressed.
The RMH didn’t help the depressing state of the hospital. So many sick children. How can so many little humans be suffering already at a young age? Three year olds with cancer. They don’t even know what life is, just the sad parts of it. We’d leave the sad hospital to go home to a huge beautiful house full of a bunch of sad depressing people. I don’t know how so many people living there had so many smiles to share. Their hearts were broken just like mine and Brigs were. We met lots of different people living there, some in very similar situations as us. The one thing that was nice, was the people. And their big open hearts, caring about you when you’re a stranger. Because they get you on some strange level no one else can. And you form friendships. These friendships help the situation.
You don’t feel so alone anymore.
Two days before they closed Ryker’s chest my mother in law brought Sy from home for a visit and on 9/24 Sylas got to see his baby brother for the first time since birth. It was a very special moment. Sy lit up yelling baby baby. He knew and remembered who Ryker was. Sy already loved Ry. And you don’t ask yourself why. You just enjoy the moment and soak it up. Hoping there will be many more moments like this. Sy and My mominlaws trip was short, just visiting for two days. We had to say good bye again.
Each time got harder. I could never contain myself, i’d be full of tears. As they were packing their ride to leave, Brig helping them, I’m standing aside just balling. There was a Russian family staying at the RMH too, the son had cancer, he’s 5. They don’t speak any english, and the mom came over to me and hugged me. She wrapped her tiny arms around me and broke a barrier. I will never forget this little family. We couldn’t speak to each other but we were bonded. People you don’t know helping you when you’re suffering and they are too… It still amazes me they have love to share.
They finally closed Ryker’s chest on Sep26. Many big steps making us that much closer to hopefully going home with our little man. He wasn’t so swollen anymore and you could see the features in his face again. He was still on lots of meds that were helping keep him alive and he was still hooked up to a breathing machine. He had pacing wires sticking out of his little abdomen that were connected to his heart. He was on kidney dialysis because his kidneys were failing, a chest drain tube sticking out of his little belly. And he had an iv in each limb. Now came weening him off each one to see if he could survive with out them. We had lots of long days and nights ahead of us.
The ICU was fast paced, the whole time he was up there is a blur. One thing that kept us sane was music. Since Ryker was still in critical condition, he was still in his own room. We brought speakers from home and made a giant playlist for Ryker to listen to and had our iPod on 24/7. It’s amazing what music can do for someone. Our playlist was endless, but some songs really stuck for us, we don’t listen to these songs much anymore. The nurses and Doctors would always make comments, they enjoyed the music too.
♫ MUSIC ♫
He was in the ICU for over a month. We would get good news for days and starting to finally feel a little joy. But then the doctors would come in and whenever they did we prepared ourselves for bad news. Even though he was progressing, they still would says things like “he’s still very sick” , “he still has a long way to go” , “we don’t know if he can breathe without help yet”. He would have to learn how to eat, he’d never had to eat. Not to mention he was on lots of pain meds since he was born, he would have to be weened off those, and just like anyone else coming off of addictive drugs he would experience withdrawal symptoms, and he did. A baby, withdrawing from pain meds. I didn’t think my heart could break anymore.
They started feeding him through a feeding tube but his body wasn’t digesting the feeds, they started and stopped feeds a few time and realized he wasn’t digesting the fats in breast milk they were leaking into his already underdeveloped lungs. He had to be on a special formula. Like skim milk pretty much. In time this would fix itself and they would try again in 6 weeks with the breast milk. A mom who is pumping and having a hard time finding the time to pump, this news just added to the notion of sadness. But I kept going.
After not needing dialysis any more, removing the chest drain tube and many test and trials to see if he could breathe on his own. They removed his breathing tube on 10/03. This step was a big one, he had needed support breathing since birth, the longer a baby is on assistance for breathing the harder it is for them to come off of it. This was also the day Brig got to hold Ryker for the first time. Brig had to wait almost a month before he could hold his son. Something we never thought would happen was happening! So many good things at once. Ryker did very well at first, he was still on a nasal cannula getting some oxygen, not officially on room air. But his stats were looking great and his gas levels we’re on target.
We were excited.
But that night his numbers dipped down and his lung partially collapsed. They had to put him on something called a CPAP it was larger than the nasal tubes, but not as extensive as the breathing tube. His numbers went back up, And he was receiving breathing treatments every 2 hrs for his collapsed lung. He was on the CPAP for four days, during those four days we couldn’t hold him anymore. It was devastating. When he would cry, i just had to squeeze his foot again.
In the midst of all this, during that month, my husbands grandmother was in the hospital for her heart as well, she had, had a heart transplant a couple years back and a pharmacy messed up her meds and her body was rejecting her heart…. human error. She was dying from human error. The doctors told his family she only had a few days. So Brig left for a couple days leaving Ry and me to ourselves. While Brig was gone I hardly left the hospital, only to sleep. I sat by Ryker, writing to him in a journal we bought for him. and we listened to music. Brig did the same but with his grandma, his whole family was there. His grandma has 5 kids, and they all have a lot of kids. My husband is 4 of 6 if that tells you anything. And they all surrounded her with love like they did Ryker on his birthday. Yes she was there for his birth. The week he went in for surgery she went into the hospital too for her heart. Brig said everyone had a hand on her, giving her love and good energy so she’d make it just one more day. He said his goodbyes to his grandma and he flew back to his son who was in the same situation. Fighting to live.
And boy did they fight.
10/08 they removed the CPAP and he was on a low flow oxygen nasal cannula doing great! The pacing wires were taken out. After this meds started shedding fast, and he didn’t have an IV in each limb anymore. Only one that he would have until we left the hospital. Finally the doctors weren’t so glum when they came to our room to do rounds. We actually heard things like ‘He’s doing great’ I think we can move him from the incubator to a crib. And that they did! They told us his echos looked great and his heart was improving. He was progressing and doing great. We could also pick him up and hold him whenever we wanted for how ever long we wanted. I should be so happy. But I wasn’t, I still couldn’t feel joy. I still thought about Sy every night. My heart hurting for him.
My mother in law brought Sy back and this time we kept him. I was convinced we were going to keep him until we went home. I wanted to go home as a family.
On 10/15 a day short of a month after surgery they moved Ryker from the ICU to a regular hospital room. It had a bed and a private bathroom with a shower. So we packed again, and moved from the RMH to the hospital. We got to be REAL PARENTS. We got to comfort him when he cried and snuggle as much as we wanted. The best part was that Sy was with us. BOTH boys. Than our cardiologist came for a visit and she didn’t think it was a good idea for Sy to stay, if Ryker got sick at all he’d have to go right back up to the ICU. And we had just worked so hard to get him out of their. Not only was she not okay with it the social worker said he was not aloud to stay with us. So they let us have one last night with Sy and our first night as a family. The next night Brig took Sy home 1200 miles away. And It was just Ry and me again. I unpacked our things and got us settled into the hospital room. They didn’t know how long we would be there for.
While Brig was taking Sy home to his family, My family came to visit, they drove 3 hours to spend two with me and then another 3 home. They brought the comforts of home with them, movies, blankets they made, snacks and clothes for Ryker. Because now he could wear them. It was not so sad being in there presence,but my familiar faces had to leave again and again it was just Ry and me.
Brig returned after 2 days being gone. We lived in the hospital room for a month. During this month they removed the nasal cannula and oxygen all together, he was breathing and comfortable on regular room air. He didn’t need any assistance to breathe anymore. Step one complete. His collapsed lung was better, the breathing treatments stopped. Step two done. Every day he had physical therapy and a sweet therapist would come every day and teach me how to feed Ryker. and help him learn. He didn’t do well at first. He would breathe fast because of his lungs and it would get in the way of him eating. He would tire too quickly so his feeds were mostly given through the feeding tube. He still was not getting breastmilk. He was getting the fat free formula, it was disgusting. Also during this month living in the hospital there were people coming in and out of our room every 3 hours, whether it was to check on him, give him meds, start his feeds,take his vitals, surgeons checking on his wound. And every morning 4-7 doctors would cram into our room and do rounds and they would talk about Ryker and how he was doing. We didn’t hear bad news anymore. Just plans to get us home.
TO GET US HOME.
Every 3 hours…… can you imagine the privacy? It was overwhelming. Again music was comfort. Every time his team of doctors came to do rounds in our room we would fight for them to try breastmilk and see how he did with it. Finally after 3 weeks of fighting his surgeon agreed and we were able to try breastmilk. He DID GREAT. The fats didn’t leak into his lungs anymore. He ate the most he had eaten out of a bottle ever. And with the help of the therapist he got better and better. She found the right position for him to eat where his breathing didn’t affect him. But he still wasn’t eating enough for them to take the feeding tube out. We knew this was something we would be going home with…. GOING HOME WITH. Next was the meds, they had to teach us how to give them and what times. He was still on quite bit of meds. Ten to be exact. and some he was getting multiple times a day. They made it seem easy enough ( or so we thought.) But we were working towards going home.
They gave Ryker one last blood transfusion and this time it wasn’t a strangers blood, it was his dads. Two days after the transfusion and one more X-ray to make sure no fats were leaking into his lungs they released us from the hospital. It was November 8. We were going home.
We packed our things one last time and we flew home Nov, 9. I didn’t know what home was anymore. For four and half months I lived in four different places. The moment the plane touched ground, tears over came. Ryker smiled at us for the first time ever. Many different emotions flooded through me. My mother in law picked us up from the airport. Showered us with hugs and smiles. Once we were home Brigs sisters met us there with Sy. They too showered us with hugs and smiles. Decorating our little home with welcome home signs and balloons everywhere “it’s a boy!” they said. It was a special moment.
WE WERE FINALLY WHOLE.
So things should start looking up right? Wrong. I don’t know why I thought i would come home and instantly that feeling of sadness / depression would disappear. It didn’t fade. If any thing it got worse. I had all I ever wanted. My three mens together with me. I felt like I was sinking and no one could pull me out. We had nothing ready for Ryker. No crib for him to sleep in. No clothes to wear. Nothing.
Since that 20 week visit after finding out about Ryker. The Dr telling us our son has a congenital heart defect. DEFECT.
1.a shortcoming, imperfection, or lack.
That moment someone tells you there is something wrong with your baby, that they have a defect. he’s imperfect. words used to describe my lil man growing inside me, and you can’t do anything to help him. It breaks off a little part of you. You just hope in time that piece that broke will rebuild itself. But from that moment, i stopped picturing the little baby growing inside of me ever being in our home. I didn’t imagine what snuggles would be like, or him and Sy playing together. I couldn’t, after every Dr visit hearing we’ll be lucky if he even makes it to birth. So as you could imagine we did not prepare our home for another baby.
The first week being home I went into shock. I shut down, I couldn’t talk to anyone. I didn’t know how. Our house was not ready for a baby, and we had so many Dr visits when we first got home. Two in one week our first week home. And the first few days home, Ryker pulled out his feeding tube and we were struggling to get him to finish his bottles. He was still learning how to eat. And on top having to help him learn to eat we had to give him meds, 19 doses in a day. He was still being weened off pain meds and he was still suffering withdrawal symptoms. But we were the one in control now. Everything was overwhelming. Life outside of our little hospital bubble seemed more stressful.
By the time Thanksgiving rolled around I was sort of ready to see people again and the feelings of shock were wearing off. Life seemed to be getting as normal as it could be. My husband went back to work. Ryker’s meds were shedding, the Dr visits are less frequent. Then Christmas came and I sunk back in my hole. I should be happy, I’m experiencing Christmas with both my boys, we got our first Christmas tree as a family! It was a real one too, we were convinced by family that it was the only way to go ;). But I sunk more and more. I couldn’t find the time in my day to pump anymore so naturally I was losing my milk supply. It was devastating, I felt/still feel like a horrible mom because I couldn’t keep going. The one thing I could still do for Ryker I couldn’t anymore. Fighting with my husband, we never fight. Fits of crying, yelling, uncertainty. Is this my life? This happens to people? Why am I not happy? Where has joy gone and will it ever come back? And then I look down and see the most precious eyes smiling up at me and am reminded that EVERYTHING we have been through was worth it and I would never want to know what life is like with out Ryker.
My littlest man.
One day we will have to go back to the hospital and be in a similar situation with Ryker. As he grows, the new parts in his heart will grow old and will need to be replaced. So I take it in strides and tell myself this is all part of the coping process, some day the crying will end, there won’t be so many worries in a day. And hopefully the constant feeling of if I’m doing things right or being a horrible mom will go away. Maybe some day i will be a small part of who I once was. But for now that person is gone, i don’t know her anymore. I just try to enjoy the little things, like Sy finally being able to give his little brother real kisses, and that my husband can hold Ryker whenever he wants. Ry’s wide open big mouthed smiles that he refused to give us in the hospital. They kill me and bring me down to earth.
Remember Brigs grandma the was on her death bed? During the last month living in the hospital we celebrated our 4th anniversary of being married, on October 23, and on the same day Fannie, Brigham’s grandma received a second heart transplant and is home and slowly but surely regaining her strength.
“ I am, I can, I will. ”
A quote from my brother in law, speaking for Ryker. But i think it is fitting for both Ryker and their grandma. They both won’t give up.
I have failed to mention our support group through all of this. They were amazing, helping us with our struggles while they were dealing with there own struggles in life. My mom had just lost her father and a nephew. My mother in law was juggling her grandson being in the hospital for his heart and her mom was in the hospital for the same thing at the same time. She had two battles. She had to be strong for her son and mom. Both of our moms having some serious emotional turmoil and they have to be rocks for their kids. Being strong for us when we couldn’t anymore. My father in law visiting us often to help us out and give us support. Our sisters being supportive making shirts supporting Ryker, starting a donation site to help us with expenses. Helping me take care of my son when i’m just too sick to get out of bed. Calling and checking on us to make sure we’re doing okay. And the families we met a long the way that helped us in ways they will never know. The doctors and nurses being your only source of communication. Being 1200 miles away from support through the most difficult time in your life is hard. It breaks you.
Not only did we receive amazing support from our close immediate families. But extended family and friends, and people we don’t know and probably never will know. Strangers praying for our son, and keeping good thoughts about him, hoping and praying for a little baby they don’t know to survive. My husbands coworkers donating their hard earned paid time off to us so that he could be with Ryker and me the whole time. My husband, he’s one of the greats. I could’t have survived this with out him. It was overwhelming and amazing. We can never thank all these people enough.
If you have taken the time to read this, and are experiencing something similar i hope my words will help. Our son was diagnosed with Ebsteins anomaly with pulmonary atresia. A nice man shared his story with us about his son having a congenital heart defect, and how he didn’t leave his sons life in the hands of people he didn’t trust. he used his resources to find the best care for his son. We too did the same, we chose a Children’s Hospital out of state because after doing research and discovering our sons condition was rarely seen and there were rarely any survivors, that he would need the best care possible. If you or someone you know is experiencing something similar, share with them that there options are not limited to those around them and that they too should learn as much as they can about there babies condition and make sure the care they’re getting is what is right for them.
I don’t write much, i never know how to put words together to express myself. I feel like a photo or image can really capture a feeling. Words are hard for me. Photography i can push a button and capture a sweet smile. This year, my camera was not used much. The things i was going through, and the pictures i took were sad, graphic or for documenting the journey we embarked on. I usually try to post my own work on my blog. I hope, i hope maybe one of my photographs can help someone through what ever it is they are dealing with whether its sad or happy. It helps you express what you’re feeling. Because for the past 9 months thats what has helped me is reposting peoples art work and words, music that helped me express what I was going through and feeling. Our past is now some ones present and will be someones future, i can only hope that my words or experience will help someone.
Thank you to everyone who supported us. TEAM RYKER.
Evelyn Marchman August 30, 2018
Unbelievable all that you went through! Thank you for sharing your journey!