Open Letter to the New Mom

First off, congratulations and welcome to the ride! Please keep all hands and feet inside the cart and maybe just maybe you can avoid your baby's bodily fluids.

When you were pregnant I am sure you got a hand full of advice. Possibly from the mother with a few children herself, or the mom with many children and grandchildren, and even from your friend that has no children. You can take it or leave it but nothing you hear will fully prepare you for your life as a mother. Now that you have your own baby also remember everyone's story and child is different so sometimes you will just have to learn as you go. You gave birth to your sweet baby boy or girl, and you are now a super hero with many super powers! So when you feel as if you can't take one more minute of all the chaos that comes along with that sweet baby just remember you have mom super powers.

Your instinct is everything! At first you may not be able to bond with your baby and that is okay and frankly isn't uncommon. Once you become a mother, whether you have bonded with your baby yet or not you will get a feeling in your gut about what your baby needs and what is right. You will also have many voices that may not agree with your instinct. The father, your parents and grandparents, friends, and even the public sometimes try to get their opinion in. You are your child's eyes and hands and feet, you are their advocate for everything. Let that motherly instinct guide you but it's still important to keep an open mind and heart. The father has instinct too for his child and has just as an important role as you do, and your parents have been through it with you so their advice may not always be perfect but it can definitely help you in making the right decision. As hard as it is to admit, your instinct may not always be right, and that's okay too. You will make mistakes and you won't be able to be a "perfect" mother because there is no such thing.

I'd like to give you advice but also just a heads up because there will be many challenges you will face and some people just aren't prepared for what's ahead of them. In my experience the biggest challenge in the beginning was exhaustion. I think the restless nights during pregnancy is training for what nights would be like once the baby is there. People will try to tell you to sleep when the baby sleeps, that's a joke. If you can sleep when the baby is asleep then by all means DO IT! There is always something else to do though. Such as shower, or eat, pump if you are breastfeeding, clean the house or the babies stuff. Once you get the list done your newborn will probably be up and ready to eat again since they are fed every 2-3 hours. If you are able to just lay down for two to three hours while your baby is asleep then your day will be 5x better if you allow yourself to put everything else on pause and rest. My advice is listen to your body. If you listen to your body then you will be in better shape then I was. You will know if those two or three hours should be used to catch up on sleep or if you need to give your body more nutrition, or if you just can't smell the spit up on you for one more minute then hop in the shower! As hard as it is to do with a newborn a schedule and plan will help immensely. Try to be as flexible and adaptable to this schedule and plan because you don't set the routine for the day but your newborn will. Having an hour to yourself a day though is a great time to shower and have a hot meal which will be a foreign concept now. Some days I used an hour to just brush my hair and read part of a book. Find ways to recharge those super mom powers, you need them!

There were days when my baby was sleeping and then I would hear him cry and wake up and I just sighed and looked forward to the next nap. Once I saw his sweet face waiting for me to pick him up I never wanted to put him back down. Even when you feel like you can't get through the day, the love of your new child will give you the strength to push forward. Then there will be breaking moments. At the beginning when your hormones are whacked out and your body hurts and you just want to sleep there will be meltdowns. For me, it happened when my baby would cry and I couldn't calm him down no matter what I did. Somehow I would end up crying even harder then he was. Some one asked me once in the middle of one of the worst meltdowns I had if I could handle it. The tears stopped and I felt a surge of energy and strength and I knew that I could and would handle it. You will too! There will be many tears and breaking points, but I am sure you can get through them and come out of them a better mother. If you don't take away anything else I say in this post that's fine, just listen closely to this. There will be times you feel extremely insecure and you have no confidence with every little thing you do. In those times remember you are your child's whole world! Just holding them can ease their cries and you are what makes them smile, your baby has the purest of love for you. They are totally dependent upon you and no one else can do what you do for them!

Having a newborn is a magical time and is an emotional roller coaster. As I said before Congratulations! I hope you can soak it all in while you are living through it because there is nothing that compares to having your newborn. I also hope you like roller coasters because you just strapped yourself in for a long ride!


I would love to hear from all the mothers that read this post! What is the best advice you received for motherhood? Thanks for reading.

Birthday Boy

Dear Josh Carter: 

You will never know how loved you are little boy. I wanted to give you the day you deserve. You have gone through unimaginable trials within the first year of life and you deserved this day that was all about you. I think of who you are and the boy you're growing to be and I admire you. Your smile is like a light at the end of the tunnel. Today we got to see that smile often! I was happy to be able to rock you to sleep in your bedroom for a couple hours and be with you when you turned one. I was able to hold you and remember the first night we had together after you were born. You've blessed my life and continue to every day. You woke up and we watched the snow fall and I sang you Happy Birthday. The rest of the day was filled with celebration. Your Smith family and Schneider family came to our house to have your birthday party. 

Your party was jungle themed of course because almost every toy you have has something to do with the jungle. We had a sweet Winnie the Pooh cake and daddy and I fed you a little icing. I think that was your favorite part! Your family bought you perfect gifts! Your presents really showed that your family knows you well and knows what makes you happy. You were given toys that light up and spin, a laser show for your bedroom, a new stroller that fully protects you from the sun, and many new clothes! 

I remember being in labor and writing my last entry to you before you came into the world. My hand writing was scratchy from shaking and I couldn't finish all of my sentences, but I do remember writing to you that I promised from that day forward I would do everything I can to make you happy. Today I'd say that was a success. You've taught me so much about my self and what I want for this life of my own. I can't wait for the years in our future and all the birthdays. Josh Carter, my sweeatheart, you will always be my perfect gift. I couldn't have asked for a more perfect son and know in your heart you are deeply loved. 

James 1:17 "Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change." 

I love you my precious boy. Happy first Birthday! 

Natsukashii

Natsukashii, the Japanese word for nostalgia or sweet fond memories.

Josh and I have many fond memories we have shared in the past year. So with his birthday being on Sunday I have been nostalgic over the sweet moments Josh and I have had. I want to share a few of the most important memories that I have. These are a few at the top of my list.

The first night at the hospital with Josh I woke up and saw him sleeping in the bassinet next to my bed. At that moment I had an emotional realization that he was finally here and completed our little family. The feeling I experienced was that the world was finfally complete because there isn't supposed to be a world without Josh Carter.

Another fond memory I have is dancing with Josh in our kitchen to Ben Howard. I rememeber he was extremely fussy that day but when I danced with him in the kitchen he slowly fell asleep. I will never forget dancing with him while he slept so peacfully.

This next memory isn't a sweet memory but a milestone as a mother. We went to the mall with Grandpa Smith. This was the first time I took Josh out in public. I wasn't just nervous but felt true anxiety. Mostly because Josh at a younger age could have terrible meltdowns in new and busy environments. We got through the trip, with a lot of help from Grandpa! Because of that quick trip to the mall I was able to break mental boundaries I had built up.

Christian and I enjoy holidays more now that we can celebrate them with Josh. We have also been able to go on our first family vacation this past year. We spent two weeks in Florida visiting with Christian's family. As a family we were able to go to the beach for Josh's first beach visit. Christian and I even barried his feet in the sand, which he didn't love but we thought it was adorable!

One late night Josh woke up from a nap and giggled when I picked him up! His first giggle. He didn't stop, for a couple minutes he kept chuckling. I was able to catch a video of him laughing while I was holding him. I was so happy I was crying. He hasn't laughed the same since but every time I get a little giggle out of him it makes me remember that first one.

When Joshwas in the hospital for a week switching from the NG tube to the G tube I became very emotional. There was a moment one of his doctors came in our room the night before surgery and took out his NG tube. She then patted me on the back and said, "that's it mom no more NG tube.". At that moment I broke down in tears knowing Josh wouldn't need the NG tube anymore. The tape on his face caused him so much pain and the NG tube was a hassel and uncomfortable. I was so happy to see my little baby boy be relieved from this trouble.

Just today on December 9th we were able to start moving into our first home. Josh and I were unpacking some boxes while Christan was at work so I decided to unpack Josh's things first. Playing with him and his toys in his first bedroom was exciting.

These are just a few important memories I have with Josh, I'm looking forward to sharing good memories we have in the future! THank you for reading my post! What is a favorite memory you have with your child/children?

Connecting the Dots

Josh was taken back for his head MRI but first the nurse told Christian and I to give him a quick kiss. That's when my stomach fell. I was worried about the risks of course, but that's also the moment I realized something very serious could be wrong with my little baby and we may find out from this MRI. We got home that afternoon and Josh was still exhausted from the anesthesia. I had a voicemail from his neurologist just a couple hours after getting home and she said they had the results and there was an abnormality so I should call them when I was able. I wanted to call her immediately but at the moment the results weren't all I was worried about. Josh wouldn't take his bottle. They had told us eating could be harder for him because his throat may be sore after the MRI but to not eat anything seemed wrong. So the next day we decided to call his pediatrician as soon as we could. So as we would getting ready I called the neurologist. She wasn't in the office but she had left a note for the nurse to read to me. She told me Josh has Pelizaeus-Merzbacher Disease. This nurse gave me a reliable website to get more information until the neurologist could call me.

Quickly I got my laptop opened up the website and had Christian join me. As I was reading I felt more and more hollow. It truly was my biggest nightmare becoming reality. I don't want this whole post to be describing PMD so I will leave a website at the bottom and I'd love to answer anyone's questions if you have any. I will say PMD is a genetic disorder and affects the central nervous system. We read on the first website that some PMD patients aren't able to walk, talk, or eat on their own. Slowly I would read a couple sentences then read it aloud to Christian. Then slowly and slowly my light crying turned to sobbing. Christian asked me what I was reading and I didn't know how to say the words that life expectancy could be shortened by a little or even a lot. Then Josh woke up from his nap and I knew it was time to leave and take him to the ER but it was so hard to move. I knew my heart would shatter the moment I saw my son. Sure enough it did and my head got all fussy but gladly my body just kept going and going and pushing me to do the next thing that needed done. 

At the ER they gave him fluids to keep him hydrated and after his throat had rested he was just fine. This was the first time that when doctors asked about Josh I had to let them know of the new diagnosis. Although I knew very little I still knew more than most the doctors if not all that we saw. Simply because PMD is so rare none of them knew what it was. While we were there one resident on Josh's developmental team got an "attitude" with me. She didn't understand why he was so underweight because with the feeding schedule he was on he should have been a normal chubby baby. This resident bent down and talked to me as if I had no clue what I was doing and as if I wasn't taking care of Josh. In that moment I decided I wouldn't let anyone speak to me like that whether it's a doctor, my parents, my in-laws, or friends. The people that know me well or have spoken to me about whats been going on with Josh medically know that I am fully on top of it. I am on top of his feeding schedule and all of his appointments, I'm on top of his therapy and knowing as much as I possibly can about his condition. So that day I learned what kind of mother I wanted to be for Josh, I would have to be strong and I will be his rock.

Josh later got blood work done to confirm the diagnosis of PMD and to determine how severe it is. He also ended up getting a swallow study and it revealed Josh aspirates. Meaning his food was going into his lungs and nasal cavity. We were told he would need a feeding tube and we had the choice to get him an NG tube, a tube through the nose, or a G tube, a tube in his stomach. We figured the NG tube would be best so he could gain some weight before getting the surgery for the G tube. The day after the swallow test we had to go up to Shriners Hospital to meet the spine doctor. We were very busy! After meeting Josh the doctor decided we needed to wait four months until he could decide on the best treatment for Josh's scoliosis. He wanted to see Josh develop more and get the blood test back. So we went back home and rested for the night then went back to Riley the next day so he could get the NG tube. Like I said it was just one thing after another. The NG tube ruined Josh! He had the NG tube for a month and only smiled twice. Christian and I had to replace the NG tube once a week and the tape always made his cheeks raw. Josh was also overly sensitive that whole month. Even more than he usually is. I was either holding him or he was asleep in bed. 

Then finally the blood work came in and we were able to meet with the genetic couselor. She was starting to tell me about PMD but as I said before I had done my research and known just about everything she was trying to tell me. I was then informed Josh has connatal type of PMD which is the most severe. The first couple days I wasn't too upset about the blood test results but then it started weighing heavy on my heart. I remembered everything that first website had told me about PMD and I became extremely scared for the life that my son will have. For months I was terrified of the future so much that I had nightmares and anxiety attacks. Gladly things started looking better for Josh. We had an appointment with Josh's developmental pediatrician and he told me Josh was so underweight he was malnourished. He admitted Josh into the hospital and was monitoring him and we worked on finding a feeding schedule that helped Josh. We were in the hospital for a week! By the end of the week he was able to get the G tube. Since then our lives have changed so much. I think Josh progresses every week. He has been gaining weight and is able to do more in therapy. Such as, role from side to side with minimal help and lift his head in tummy time for a couple seconds. He is also babbling more and smiling often. Finally our schedule isn't filled with doctor appointments or surprise runs to the ER. He has gotten splints for his wrists and ankles and we are waiting on a helmet and a back brace from Shriners as well. Things aren't what I expected in the least but I love it more and more as we go along. 

Thank you for reading! I'm so glad I could catch you up on some major stuff that has happened in the past year. This is much more so don't forget to read my upcoming posts.  https://rarediseases.org/rare-diseases/pelizaeus-merzbacher-disease/ this a link to a website about PMD. If you have any questions about this disease or how its effected Josh I'd love to answer them for you.

Not What I Expected

Josh was born on December 11, 2015 at 1:20 p.m and he weighed 6lbs and 7oz. He was beyond perfect and everything and more than I'd hoped for. It was exhilarating finally meeting the little boy I had written to. So when the doctors came in our room and did the routine checkup it burst my bubble when I saw them whispering and had faces of concern. They mentioned how his wrists and ankles bent in and they weren't sure what the cause was but we needed to keep a close eye on that. They also said Josh's eyes "wobbled" and he couldn't pass his hearing test. We were to watch if anything got worse or better and get his hearing tested at another time.  So we were able to take our little Josh Carter home with us but it wasn't at all what I expected it would be like.

The first two weeks at home with Josh honestly were the worst of my life. Before I explain I will say I was immensely happy to have my newborn and we had many sweet moments together. For the first two weeks I stayed at my parents house every night because Christian worked third shift and I wasn't comfortable staying home alone with the baby. Which made me really insecure because shouldn't a mother be able to take care of her baby overnight? Well I thought so but I was in a lot of pain for the first couple months. Exhaustion was my constant battle. There is no way to get good sleep in between the two hour feeding time and even worse, Josh never slept! There was one day that I was watching Josh and I felt the exhaustion hit me like a brick wall, and I fainted. But I stayed down for 20-30 minutes. I fell asleep there on the living room floor. It was terrifying and I remember waking up and seeing Josh in his swing just patiently waiting for me to wake up. I told myself I wouldn't let it get that bad again because it was unsafe for Josh and myself. Another struggle was that we couldn't get breastfeeding down! Now I know it was due to medical reasons but at the time I just thought I was doing it all wrong. From the beginning I was very determined to breastfeed Josh and I was feeding him every two hours day and night. But when we went to the first doctor appointment he had only lost weight which they say is normal for a baby to drop a little at first and then gain again. So when we went back that second week and Josh had lost even more we were all very concerned. I felt guilty and frustrated and annoyed with myself. Around this time is when we noticed a couple other symptoms. Josh has very low muscle tone and his eyes darted back and forth but his first pediatrician said it would get better with development. Just like all the other little problems we were finding. She also wanted to get a swallow test but Josh wasn't having any reflux issues and hardly spit up so we decided to get a second opinion.

Josh's second pediatrician said he didn't think he needed a swallow test so we decided to wait. He was about a month old at this point and this is when I waved the white flag and gave up breastfeeding. It had to be the toughest decision still to this day. But once Josh was getting formula he started gaining weight! I was so relieved that every ounce he gained I cried. This second pediatrician did find more concern in his eyes and sent us to an Neurologist at Riley. After looking over Josh she thought it would be best to see an Ophthalmologist. We saw them when Josh was two months old and they told us he had nystagmus, which is darting back and forth of the eyes. They did an eye test and said Josh had no pigment in his eyes. They then diagnosed him with Ocular Albinism. Which mean he would be very visually impaired and his eyes would be sensitive to sunlight. My heart was broken when they told me he could only see shapes and colors and no detail. With Ocular Albinism can also come hearing defects. I began to think what this may mean for his future and how we will need to adapt for Josh. Getting this diagnosis explained some of his symptoms but didn't fully connect the dots. He was still only slowly gaining weight even though I was still pumping him full of liquids and it didn't explain his low muscle tone. 

One day Josh had the hiccups pretty bad, but looking at his chest I noticed something just wasn't right. One side of his rib cage was larger than the other. Then I had him on his tummy and noticed his spine was clearly curved. So when we saw his pediatrician they took an x-ray and it showed Josh has a 54% curvature of his spine. He had scoliosis due to the low muscle tone. We had just started Josh in physical therapy as well so I spoke with his therapist and she recommended splints for his wrists and ankles and most likely would need a brace or cast for his scoliosis. Christian and I decided we want him to go up to Shriners Hospital in Chicago for orthopedics. The wait time to see the spine doctor was a couple months but those were very busy and stressful months. At this point Josh is 5-7 months old. Everything in these months were and still are a complete blur. Josh was still only gaining 2 oz every month and his pediatrician was starting to treat me as if it were my fault and he didn't believe me that I was feeding him properly or as often as I were saying. This  brought back many emotions from when Josh was first born. It was also infuriating, Christian and I were busting our asses trying to make Josh healthy and he thought we were just slacking off as parents. This was very upsetting. On top of worrying about my baby's health, I had to worry about proving that Christian and I are good parents and make Josh's health our priority.  Soon after this we were able to see Josh's neurologist again,whom I like very much, for a second checkup. At this appointment she decided Josh needed a head MRI as soon as possible to rule out any issues with the development of his brain. When she said this I thought, "but if there were problems with the development of his brain wouldn't it be more clear to us?". Little did I know the results of the MRI would finally connect all the dots for us. 

Back to the Beginning

On April 16th, 2015 I took the most important test of my life, a pregnancy test. I will always remember that day so vividly that I can still recall every detail. I woke up early and sat in my dorm room for what seemed like hours just building up the courage to go take the test. First I decided to get my bottled up feelings out and onto paper. So I started by saying, "Dear Josh Carter:" because if I were to be pregnant I was so sure it would be a little boy. So I wrote how I was feeling to my possibly unborn child. When it came back positive I wept. Honestly I can't say exactly what I felt in that moment. I know there was fear and uncertainty, but also excitement and peace. And every day I wrote to Josh Carter telling him how I felt and what his father and I were doing to be prepared for him to join us. It helped me process the big news and also allowed me to make a connection with my unborn son.

This blog is to let others see this journey of motherhood I'm still figuring out, while also telling Josh's story. I would like to think of it as an extension to my entries that I'v written to him. I want to reach out to my friends, family, new families, and mothers and be open and honest about what it has been like being a new mom. Which comes with many struggles but also new adventures! I learn more about myself, my husband, and our son every day.

Our son was born with a rare genetic disease and it has been a huge challenge for our family. He is close to being a year old but some days I feel like he has already been here for years. Josh has been through so much in just the first year of his life and I know we have so much more to come. I have talked and met with families that have disabled children in their family and hearing their stories have made me stronger and given me much hope for my own family's future. I hope I can do the same through this blog and I would love to hear from more families. As you will learn while reading my posts I am very open! I will allow myself to be vulnerable and honest so that I can fully share this story with every reader and give insight on what life is like for us. I appreciate everyone that takes the time to read this blog and as I stated before I would love to hear your own stories as well! I'm very excited for you to be on this crazy journey with me.