Rare Disease Day

This year February 29th marked not only my husband's birthday, but the 9th annual Rare Disease Day. Every year on the last day of February people rally together to bring awareness for rare diseases and raise money for research. These diseases are often overlooked and forgotten, most people never have a need to learn about any of them. This is a wonderful opportunity to learn more about often life threatening diseases that people struggle with every day. 

In March, 2013 my little family added Micah as it's newest addition. The days that followed were both the best and worst of my life. Something that made it a little easier was that I have an amazing mom who battles a very similar disease as the one Micah does. Knowledge was an incredible ally to have. The following is our journey with Micah's own rare disease.

March 23, 2013

On March 23, 2013 our first child was born perfectly into this world after 8 hours of labor. He weighed just over 7 pounds and was the most peaceful newborn baby I had ever met. He slept great and hardly ever cried! He nursed great for the 24 hours, and was such a cuddly baby. It was a relief because I had suffered major anxiety during pregnancy worrying about his health. He had tried to come early several times, when I reached 21 weeks I remember celebrating because now he was seen as viable and if he came early the doctors would try to save him. I worried about all sorts of diseases even though the ultrasound technicians always assured me he looked perfect. I finally felt at peace holding him in my arms and watching him breathe. 

The next day Micah started to show the first signs of struggling. He turned a yellow color from jaundice, and he stopped eating. The nurses said he was okay and showed me how to feed him with a spoon. The problem was when we could get him to eat he would throw it up! I would call the nurses in after and they repeatedly assured me that he was spitting up, not throwing up. I fought them on this telling them I had extreme morning sickness all throughout my pregnancy. I KNEW what throwup smelt like. This was green and smelled of bile, I was starting to think I was crazy from the way they treated me. That same day they told me that if he didn't have a bowel movement he would have to stay, yet they stilled denied that he was throwing up. 

The charge nurse came to visit us and speak about our options since he hadn't pooped yet. When she came in I desperately showed her a blanket that Micah had thrown up on. Her face became serious and she quickly left the room to bag the blanket and put a note on it. Our son was throwing up bile, and finally a nurse acknowledged that. Micah was moved to the hospital's special care unit right after that. We were told I was okay to leave, but that I could stay in the hospital on 'Hotel Stay' if I wanted. 

March 26, 2013

On March 26, 2013 we were told that Micah needed to be taken to Primary Children's Hospital for some tests, but that he would come back to the hospital he was in afterwards. I insisted on riding along in the ambulance with Micah as I couldn't imagine my baby being without me during the ride. I was worried, and being able to ride with him was one thing I could control. They agreed and off we went! When we arrived Micah was taken to imaging to get a barium enema. According to the Mayo Clinic a barium enema is "an X-ray exam that can detect changes or abnormalities in the large intestine (colon). The procedure is also called a colon X-ray. An enema is the injection of a liquid into your rectum through a small tube." We were lucky to be working with people during this that were professional, yet had a great sense of humor. They explained everything and even involved us in the procedure, and knew exactly when would be appropriate while explaining the process to make a small joke. They were very relaxed and seemed like they had done this millions of times, it really helped. 

After they had finished they told us that it looked like this was something Micah would grow out of and that in their opinion he could be sent home. We were ecstatic! I rode back to the hospital with my husband to be able to talk to him, we couldn't wait to bring our son home! When we pulled into the hospital we got a call, and my heart sank. It was the paramedic calling to tell us that a head surgeon had looked over the test Micah just had and told them to turn around and bring him back. He could no longer be treated at the hospital we were at, he needed to be in the NICU at the children's hospital. 

I'll never forget my phone call to my dad on our way back. I call and told him Micah was transferred to be in the NICU, that we didn't know what was wrong but that it was something serious. I told him Micah couldn't come home and that I was scared and didn't know what was going on. He said he would be at the hospital as soon as he could, and then we hung up. I was numb when we walked into Primary Children's. We got our badges to enter the NICU and went to the elevators. None of it seemed real, not even when we scrubbed up to our elbows preparing to see our son. It finally became real when a surgeon walked into the scrubbing room. She told us her name was Dr. Meyers and that our son was very sick, but that she think she knew what was wrong. She explained that on the image from the enema half of his colon looked small and restricted, then the top half looked normal. She said she would need to biopsy his colon and then we would know more. I was then handed intake papers, and on the diagnosis line I read the word's "Hirschsprung's Disease". 

I wasn't prepared for what I saw when I walked into the room to see Micah. When I had last seen him less than an hour ago he looked normal. He had only had an IV in and other than throwing up he was acting like any other newborn. The baby I was directed to was in a crib under a light to help his jaundice. He had an IV, an anderson tube going into his mouth, oxygen, heart monitors, a pulse ox, and a covering over his eyes. I went over and stroked my little angel, holding back tears from seeing him so sick. 

The nurse we had that night will forever be my favorite nurse we've ever had. She explained to NICU to us and brought me a reclining chair so I could put my feet up. She told us not to go home and google what Hirschsprung's was as it wouldn't help, it would only worry us needlessly. She told us it's a rare disease, but that they usually have one baby at a time in the NICU with it. At this point I hadn't done much in the way of relaxing and allowing my body to recover from giving birth, and it showed. I had hemorraged during labor, and I was weak and now swollen from being up all day. She told us we couldn't do anything here tonight and that I needed to allow myself to heal for when I could take care of Micah. She told us to go home, so we hesitantly left. 

Going home was harder than I thought it would be. Seeing his bassinet next to the bed was too much for me and I went to lay in the bath and cry. This wasn't the way it was supposed to be, I was supposed to be wheeled out of the hospital with my baby. I was supposed to bring him home in his special coming home outfit and give him his first bath before feeding him and putting him to bed. I wasn't supposed to be home without my baby in my arms, but that's the way it was. 

March 27, 2013

On March 27, 2013 they did a rectal biopsy which ended up confirmed the diagnosis of Hirschsprung's Disease. At this point I couldn't resist and looked up what this disease was on google. According to the Mayo Clinic Hirschsprung's Disease is a disease that affects the large intestine. It is caused by not having nerves in parts of, the intestinal tract making it impossible to move stool through. I would later learn that while it most commonly affects the large intestine it can also go up into the small intestine. Around 70% of cases are a short section where they can do a pull through surgery immediately. 20% have what is considered a long segment and can extend all the way up to the small intestine, 9% have it going slightly into the small intestine and in 1% it can go all the way up to the stomach. In many babies with Hirschsprung's the first sign is not being able to pass stool after birth, and then becoming distended and unable to eat or keep food down. Hirschsprung's appears in around 1 our of 5,000 live births, most commonly in males and often found in people with downs syndrome. Hirschsprung's is not a disease that can be cured, and most often will continue to affect patients for their entire lives. Early treatment includes having an ostomy for long segment, and then later on after healing opting for a pull through surgery to remove any of the affected intestine. 

We were told to expect Micah to have Long Segment Hirschsprung's Disease because of what they saw on his images. In the same conversation we were told that Micah's biopsy had come back confirming Hirschsprung's we were told that his surgery was scheduled for that friday morning and that he would likely be getting a colostomy bag and not the pull through because of him being Long Segment. At this point we went down to eat lunch and process what we had been told. I broke down crying trying to come to terms with our son having this disease and needing a colostomy bag. My mom has 2 ostomy bags and I've seen how much it effects her. I've watched her tie sweaters around the bags hiding them and asking me if she smelled. Of course she never did smell, but she was always sure she did and self concious because of it. I've watched her miss out on important events in mine and my sibling's lives because she was afraid she would have an ostomy leak and because she didn't want people to see her. I grew up watching my mom cry in pain and nearly die several times. It scared me half to death that my son would have to go through any of this. It isn't the life I wanted for him. I had had visions of him running and playing with friends, being a rambunctious little boy. It took me a long time to realize that the situation is what you make it. Having an ostomy doesn't mean you have to hide away and not be a normal little kid. Having an ostomy is just something that is sometimes necessary medically, and you can still do anything anybody else can. It means you're a fighter! 

That was the last time I cried about Micah's diagnosis. I've felt sad sometimes, and scared a lot of times. Yet, it was after that time that I realized I needed to keep it together to be the best mother and advocate for Micah. He needed me to be the strong one, so that's what I became. Something happens when you have a child diagnosed with a serious disease - you realize you can do things you never thought you could. I've put NG tubes in my son, I've held him down while they put tubes in while he screamed and asked me why, I've handed my son over to surgeons and I've held him while he pukes on me. I've tried to do this all in a calm, neutral and confident way. Never crying, my son even as a newborn was watching me to see if things were okay. If I was crying hysterically I wouldn't be able to be there for him and he would be scared seeing me. He already had enough to deal with without me losing it. 

March 29, 2013

March 29, 2013 I handed my tiny son over to surgeons for the first time. We walked down as far as we were allowed and then gave him hugs and kisses. In surgery they would biopsy his intestines slowly up until they found nerves. If it was only a short segment of intestine without nerves they would take out that small section and pull the rest down reconnecting it. If, however, it was a long segment they would create a stoma for a colostomy. A stoma is where they make an incision and bring part of the intestine to the surface. They make an opening in the intestine so that stool can exit through there. After a few hours in the waiting room without receiving a call to inform us they had found nerves we knew it wasn't going to be short segment. Sure enough we got the call, half of Micah's colon was without nerves and he would need a colostomy. 

Micah recovered quickly from the surgery, and now that he wasn't as sickly his personality started to come forward. He cried hard and was no longer a quiet peaceful little baby. He loved music and made it known when he wasn't happy. There were literally times when we were walking down the hall to the NICU and I would hear a baby crying and know it was him. He became a fierce little guy. As much as I hadn't wanted that colostomy it had given me my baby back. He finally had energy to cry!

It took us a while to be able to take him home because he wouldn't eat. He COULD eat, but he wouldn't. Micah ended up being in there for exactly a month. 

After Coming Home

Micah came home with his colostomy, and while it was a struggle to care for a colostomy we learned how to handle it. In August of 2013 Micah was able to receive his pull through surgery, removing half of his colon. He was in the hospital for another month, and we learned during that stay that Micah also had a heart defect called Wolf-Parkinson-White syndrome. This means he had an extra pathway in his heart causing it to be too fast. When it was diagnosed his heart rate was 311. He was put on medicine and we learned how to handle it just like we had his Hirschsprung's. 

Micah has continually gotten infections in his bowels. This is called enterocolitis, and it is very serious. Aboutkidsgi.org says "Enterocolitis is a clinical diagnosis. The symptoms of early enterocolitis may be indistinguishable from a simple viral gastroenteritis: diarrhea, bellyache, a little fever, maybe some vomiting. Because enterocolitis can progress rapidly and even result in death, most pediatric surgeons like to err on the side of caution and treat it with irrigations, antibiotics, and iv fluids even if they’re not sure of the diagnosis."  Enterocolitis is the leading cause of death in Hirschsprung's patients, and is something we worry about every day. 

One day Micah was his normal funny, playful self all morning and I put him down for a nap. I sent my husband to wake him up three hours later as he still hadn't woken up. My husband ran up saying that Micah felt hot and wanted the thermometer. It turns out that in that short amount of time Micah had gone septic with enterocolitis and had a fever of 105. The knowledge that my baby boy can be fine one minute and deathly ill another minute scares me. It is something we've had to live with and haven't gotten any answers from doctors. We continue to try and find ways to prevent this from happening. 

Micah is now almost 3 years old, and he continues to amaze me. Even when he is sick or in the hospital this kid keeps laughing and playing! Nurses have commented that it's amazing how he hardly ever slows down. Hirschsprung's is part of his life, but we fight for it to be a small part. He is smart and funny. He loves to joke around and get others to laugh! He wants to be everywhere at once, and soaks up knowledge. He is now his target weight and continues to grow. Micah is the type of kid who walks into a room full of people and says 'Hello Friends!' He loves cuddling on my lap, and if I leave the room to get something he always runs to me and gives me a hug. 

Having a child with a rare disease has taught me:

How strong the human spirit is, I am amazed at how Micah keeps fighting and never gets discouraged. 

That sometimes I need to stand up to nurses and doctors because I know my child best. It's hard to do, I tend to not like to make waves, but it is necessary. I've had to be a strong willed advocate in getting my son proper treatment that has been the difference between him getting to the point of being deathly ill and treating him before it gets to that point. 

Not everybody understand, and that's okay. Most people are lucky to never have to deal with caring for a sick child. Sometimes even extended family doesn't full understand why we can't attend family funtions, but that's okay. We know we're doing what is best for our son, and everything else is so much lower on the priority list that we don't even notice it. I know there have been hurt feelings and misunderstandings, and that's okay too. I hope people learn more and know that our only intention is to protect our son. 

Even though something difficult is going on that doesn't mean life is bad. We're incredibly lucky that Micah's disease is treatable, and even more lucky that we even have him with us. We have a sick child, but there is so much to be thankful for! His illness, and everything that comes with it, are just a part of life. Feeling bad about it, or fighting it, doesn't help. 

We can handle literally anything. Seriously, the biggest thing that this has taught me is we can accomplish so much! I now try to have the attitude that no matter what happens we'll get through it. I have an awesome husband who makes me laugh and we have a kid who we love to death. Even when things get hard, we can get through it. Currently a worry is my husband finding a job for when he graduates in May. I've come to the conclusion that even if it takes a while to find a job, we'll be okay. We may not be able to spend money on fun things for a while, or move as quickly as we would like.... but it's okay. I try to ask myself "What's the worst than can happen, and so what if it does?" and seriously.... short of somebody dying I've learned it's just something we'll get through. 

Realization

I know it's been a long time since I have blogged, however I have gone over this topic in my head for the past two months now not really knowing if I wanted to put it all down into words. 

About two months ago after a completely normal day, where Micah was energetic and ate a normal amount, I sent my husband to wake Micah up from his nap because he had been sleeping for too long. The next thing I knew Urian was hurrying up the stairs saying that Micah had a fever. When it comes to Micah and his health problems we usually do a lot of listening to our gut on what we should do. When it's time to head straight to the hospital you just know. And that is what we did.

When we got to the hospital his fever was 105 and he was very lethargic. We didn't even have to wait in the waiting room, they got us straight back. We walked into the room and there were already around 3 nurses and a doctor already in there waiting for him. They put him on septic protocol, and he was soon admitted to inpatient and put on a couple of antibiotics. 

In the days that followed there were a lot of tests, all resulting in nothing. Labs hardly ever reveal what the exact bacteria is. However, this is the first time they started saying they were concerned about what his lab results were saying about his blood. I was sitting in his room comforting him a couple of days into his hospitalization when a pediatric doctor came in to talk to me. He said that they weren't sure what was going on, but that they wanted to test for several things - one of those things being cancer in his blood. I have rarely seen a doctor so kind, as he sat on the ground next to Micah and started talking to Micah about Elmo and singing songs to him to make him more comfortable as he examined him. Even as I was shocked at what he had just talked to me about, I did really appreciate the way he treated Micah as a human being and not as another diagnosis. 

We waited days for the results, and although his blood did show many worrying things (such as an extremely low white count, Poikilocytosis, Burr Cells and Atypical Lymph) they did come to the conclusion that it wasn't cancer, and rather a possibility of a different blood disorder that was being affected by his infection. 

During his hospitalization, as Micah lay lethargic in a hospital wagon that I would pull around to soothe him, I thought a lot. This was the first time I really thought about the possibility of Micah getting so sick that one day he might not recover from an infection. I had talked with parents online, and I had heard the stories of children with Hirschsprung's Disease getting an infection that goes septic. I had heard about the deaths, and the warnings the parent's of those angel children give to the other parents on the forums. However, we've always been very lucky. Micah had never been septic before this time, and he had always responded to the medications. So even though I knew logically that sometimes these kids don't make it I had never really connected that possibility emotionally to our own situation. And let me tell you, there is no way to put into words how that feels. I was honestly floored by the realization. 

It was hard watching Micah be so sick. He is a toddler who is so completely full of life, who never slows down for anything. Yet he laid in the wagon not even turning his head when we passed things or when spoken to. He slept through painful medical procedures. 

Over the days he slowly regained his personality, and although it took him a while he began sitting up in the wagon and interacting. Slowly he started wanting to walk instead of sitting, and then he wanted to play. And then we got to go home, and start returning to a normal life. 

I am thankful to the hospital staff we had. The nurses who stroked his forehead and covered him in icepacks to bring down his fever. I'm thankful to the nurses who sought out sesame street books to give him when he was too weak to play, but enjoyed looking at books. When they would order him food even though we knew he probably wouldn't eat it. To the doctors who treated him like any other toddler even when he wasn't reactive enough to care. To all of the staff who treated him like a child in need of kindness. The nurse who took him to a balcony to watch the fireworks even though he wouldn't have known he had missed anything. I'm thankful that when he was hurting so badly, they cared and how they made it their mission to make him comfortable. I'm thankful that some of them visited even when they weren't assigned to him. 

I'm amazed at so much kindness I witnessed. I'm amazed that even though we didn't want to be there, I'm thankful that I got to share my son with them because I know that he received an incredible amount of love from them. 

The Last Month

The last month hasn't been an easy one. It started with the normal winter viruses, and for Micah turned much bigger. Our family all got a winter stomach bug around the beginning of December, nothing big and most of the people in our area got it. After a while of Micah having it, though, we began to get concerned. He would vomit up everything given to him and after a while he was refusing to eat. 

With Hirschsprung's Disease it isn't uncommon for a simple virus to effect if GI system, or for a virus to turn into enterocolitis. Even a cold could do this to him sometimes. We try to be very careful - even limiting how many people we see because even if somebody isn't sick they could be carrying something. His reactions to any given virus could range from normal, to slowing down his digestion and him having no appetite for a few days, or if we're unlucky it could turn into enterocolitis. A brief description of Hirschsprung's Associated Enterocolitis (from http://research.peds.wustl.edu/) is: "Enterocolitis is a potentially dangerous problem for children with Hirschsprung disease.  Symptoms may worsen over the course of hours and include "explosive", foul smelling or bloody diarrhea, abdominal distension, lethargy and fever.  If a rectal exam is performed there may also be an "explosive" release of gas or stool.  In some cases of enterocolitis, bacteria can enter the blood stream from the bowel to cause sepsis, a problem that can be fatal."

When we became more and more concerned that Micah wasn't recovering like he should have been we did end up taking him into the ER. When there several of the nurses were very concerned about him. By this time he was very lethargic and still throwing up. The doctors weren't overly concerned, though. They sent Micah home without running any tests and told us it was probably a virus. This happened a couple other times after that trip, so we decided to make an emergency appointment with the surgeons.

When we called the surgeons office at the hospital they were able to get him in, but his normal surgeon wasn't working and wouldn't be in for a few days. It was now two weeks after our first December ER visit and Micah hadn't been eating hardly anything. He had lost some weight, wasn't overly interested in playing, and more often than not he just wanted to be held. He did have periods of time were he would play and be happy, but not like he normally does. We were enthusiastic that the surgeons would be able to help us and that he would finally start feeling better. Shortly into our appointment we started to feel much less hopeful. It became clear that not only did the surgeon not usually work with babies and toddlers, but he knew very very little about Hirschsprung's Disease. We left unimpressed and ended up in the ER again later that week.

When we were finally able to see our surgeon in office Micah was laying in my lap, cheeks flushed, throwing up, lethargic and very very ill. We were desperate at this point because most of what had been done for him when we had been taking him in was rehydrating him and then sending him home. Our surgeon didn't even do a physical exam at that appointment, she hospitalized him immediately. After blood tests, x-rays, and many other tests it was confirmed he had enterocolitis and his Alkaline Phosphate level was at 1377.

That day they started Micah on a strong antibiotic and upped his rectal irrigations to 3x per day (we were already doing 2x per day at home, these help to wash bacteria out of his colon). They also put him on intestional rest, which means no eating or drinking. Because of this (and because he had eaten basically nothing at home the past 3 weeks. Yes it was 3 weeks by this point.) they put in a picc line and started him on TPN and lipids.

Micah was in the hospital for about a week, which was hard on us as a family. Even though it was draining to have him there, and to be there all day with him, we were VERY relieved that he was finally getting the treatment he needed to feel better. He started acting like himself a few days after arriving there, and I swear by the time we went home he had more energy than BEFORE he got sick!

Even now that we're home I'm still pretty angry about his lack of treatment. I feel like if he had been treated right away then he wouldn't have been in the hospital for a week, and even if he had been hospitalized it would have been for only a couple of days most likely. I don't know this for sure, but that's how I feel. I still love this hospital to death. They have been very good to us and given him a much better quality of life. I feel unlucky to have met so many that didn't know how to treat his disease, but treated him anyway. Things like this happen in every hospital, and now I know to be more assertive going forward.

At the moment, Micah is doing great! His digestion is still a bit slow but getting back to normal every day. He has an incredible amount of energy! It's great to see him getting back to himself. He has some follow up appointments which I'm sure will go good.

I guess it's just a reminder that with his disease it's a marathon, not a sprint. There won't be an immediate cure all, but hopefully with time he'll get better and better with much less risk of complications. Even this past year I've seen him do better than his first year. Hopefully this next year will be even better!

My Best Friend

Yesterday, as some of you know, my husband and I celebrated our first wedding anniversary. Even though it came at an incredibly stressful time, it was just nice to be with him. I would have spent the day anywhere with him as long as we were together. Since we've been together for a year, and since I'm doing this blog, I thought I would post our story.

Urian and I met in my junior year of high school. I was dating somebody else, and quite honestly I didn't have those kinds of feelings for him. Being around him, however, made me happy and boosted my self-esteem. He was so open in his feelings for me, and even though I didn't return them this made me feel good. Who doesn't like somebody who is goofy in their love for you and compliments you freely, right? No, it wasn't fair to him. I regret not setting him straight earlier than I did every day. I regret that I didn't chase after HIM, quite frankly. I was in high school girl mode, though, and my boyfriend was a handsome, athletic football player. And even though he didn't make me happy, and he never made me feel good about myself, I felt like others envied me. 

And others did envy me, they told me that they did. I was thin, I was talented on the flute, I was talented at acting, and I could make others laugh quite easily. People knew my name, and they would tell me that they envied me having such a good relationship with my boyfriend. Because in public we were an "It" couple, even if we weren't when we weren't around people. I was depressed, and even though I only weight 120 pounds (which is actually considered underweight for my bone structure, muscles, and height), I felt fat. I didn't only FEEL fat, I was told by my boyfriend that it was going to be a condition of our relationship to lose weight. 

Now, mind you, I'm no longer struggling with the things I'm about to talk about. I am a much bigger weight, and I'm actually working to lose weight because I need to. Birth control will do that to ya, mkay? I was a healthy weight and without changing my routine or what I ate I ballooned. It sucks. Anyway, the above pictures are of me my junior year, that is why they apply. 

I was frantic to lose weight, at the time. I felt absolutely huge, and even though I ran for an hour every day I felt fat and unhealthy. I started to save up my Adderall, and when I had enough of it I took 3x the dose I was on per day. I did this because it sped up my metabolism and made me not hungry. I stopped eating, and when I had to eat because my family was watching I would throw it up. I knew I had a problem, and I knew that it was wrong. Honestly, I didn't care. I didn't care one bit about the health risks or the psychological reasons. I'd been depressed for a long time, but this is when it started becoming dangerous. And my boyfriend encouraged it. 

After a few months, and when I was getting dangerously thin, the doctor who prescribed me Adderall started to notice. My blood pressure was low, and I was unsteady on my feet. When she weighed me she was shocked at the amount of weight I had lost. I told her that I was just working on increasing how far I could go when running and that I would do better at increasing my intake. I pretended to be genuinely surprised that I had lost weight, and it worked. 

This kept up for a few months more, and I got more and more sick and more and more well... unstable. I was suicidal, I was angry, I was cutting myself every night and it STILL all seemed worth it. Urian was one of the few people who noticed (or at least talked to me about it) and this made me confide in him about how I was feeling. I grew closer and closer to him in this time, and I started to have feelings for him. Feelings I was scared of having at this vulnerable time. I ran away from those feelings, and months later when my boyfriend and I broke up, I hurt Urian by dating his friend I had no feelings for. 

I have no excuse for this behavior, and I wish I could take it back. I didn't find his friend attractive at all, his kisses revolted me, and he was creepy to be honest. After one week he started talking about our future together and other marriage. It was really weird, but every time I tried to leave he would hint that he would commit suicide. I didn't want to be the cause of his death, even if I didn't love him I didn't want him... well... dead! Eventually I broke up with him and immediately called the cops telling them he was suicidal and asking them to check up on him. 

I grew more and more unstable every day, and quite honestly I drowned in my depression. I didn't want to go on, and I was honest about it to the therapist my parents were making me see (they'd gotten worried a month earlier and made me see her). My therapist was really worried, and when I refused to sign a safety contract, she told my dad it was time to take me to the hospital. She said it couldn't wait until the next day, and the next thing I knew I was in the emergency room. From the emergency room I spent over a year in a residential treatment center receiving therapy most weekdays. From this I grew more confident and learned how to deal with my depression and how to care about my health more than my weight. I was 112 pounds when I was admitted. 

I share this information in hopes that it makes parts of Urian's and mine relationship clearer, and because it really is a big part of the story. 

Over a year, maybe closer to two, after all of this happened Urian and I started talking again. Soon we were meeting up for coffee. One thing led to another, and a tickle fight led to a kiss. It was the most real, most romantic kiss I'd ever had. It was spontaneous and there was no over thinking. There was no planning to make it less special, and everything about it felt right. That moment changed us forever. We were dating in no time, and our relationship was easy and fun. 

Urian is nerdy, brilliant, funny, and very very awkward. He's not at all the person I envisioned myself marrying, but he is so much more. He proves his love for me every day, and it's the small romantic things that mean the most to me. 

After almost six months of dating, Urian proposed to me. He proposed to me in the same place we realized we needed to be together, the park where we brought our coffee and kissed for the first time. He had even asked permission from my dad to marry me. The diamond was small, but there was so many artistic details about it that made it unique and perfect. I started planning the wedding immediately for the next summer. 

He came with me to pick out my dress, and to make sure I got the one I wanted he paid for it. He bought me a beautiful necklace to go with it, and a veil. We spent every moment that we could together, and he continued to help me though things I wouldn't have gotten through without him. I learned to completely let go of everything to do with my eating disorder by leaning on him. 

Our wedding day came sooner than I thought it would. My weight had gone up because of birth control, we had it in my parent's backyard because of money (and to make my mom more comfortable. Because of her illness she doesn't have a lot of energy.), and I didn't look the way I had wanted to. I didn't care about any of those, though. Everything looked perfect to me just the way it was, because day was to join me to my best friend. It was about the commitment, and finally I didn't feel as scared and superficial. And it took an incredible amount of trust for me to walk to that alter. 

Urian was more handsome than I had ever seen him. None of the details that had gone into planning all of it mattered the moment I saw him. I didn't see the suit or the color I chose for flowers. I saw my best friend waiting for me, waiting to commit his life to me. Our wedding was the happiest day of my life up to that point. 

Everything that followed that day only added to the happiness. We found out we were pregnant, we enjoyed our time planning and enjoying the pregnancy. We found out that we would soon have a son, and we picked out names for him. We welcomed him into the world and we knew joy. 

There will never be a year quite like this one. This year has been wonderful and hard. It's been full of joy and full of trials. I've had my husband with me every step of the way, and he's taught me trust and happiness. 

There will be many more years, but this one will always stick out for what it is. A year of firsts, and a year of togetherness. 

Heres some pictures showing special moments shared between the two of us: