It’s not often I post a photo of just myself and not because I think it’s a bad or weird thing, I just tend to post photos mostly of my son, family, friends and places.
In this picture I was sixteen years old and had recently moved to Charlotte. I had been through a lot in the months leading up to my move here. I had recently left my hometown and moved to an unfamiliar place. It was a season of change, and one of breaking but also one of restoring and finding pieces of myself I knew were still there but were lost for awhile.
This day my close childhood friend, Jonathan Volk took me to his school for the day and to the city for a photo project. I got to help develop film in the dark room and learn more about the art of taking photographs and I was absolutely fascinated. It was confirmed then that I wanted to pursue the art of capturing moments in photographs.
I dreamed of going to school for film and photography and that was the plan I had set for myself. I still remember stealing away my friend, Kristen Lassen’a camera to take photos when I was sixteen and I so badly wanted one of my own besides the few small digital ones I had been given throughout the years.
Four years ago on our very first married Christmas together my husband blew me away and gifted me my canon 60D camera, a MacBook Pro and Lightroom editing program so I would have the tools I needed to move forward with my dream and start school. He saved and saved to help me reach my dreams and I couldn’t be more blessed by his constant encouragement in anything and everything I do.
Our first year of marriage I worked full time as a teacher and school didn’t yet fit into our busy lifestyle. Then the best and most beautiful surprise came into our life when I found out we were expecting our first baby. Pregnancy for me was a challenge as we received the news that Jude had a form of skeletal dysplasia pretty early on. I was then put on bedrest at thirty two weeks and hospitalized for awhile. Jude was born and right away we were swamped with hospitalizations, doctors appointments, therapies, surgeries, MRI’s, x-rays, sleep study’s, EEGs and grasping onto anything we could to learn about his diagnosis and to give him the best quality of life.
Jude is now 2 1/2 and I have spent more time by a hospital bedside then I ever thought I would, we have traveled far multiple times to visit specialists, he has five hours of therapy every single week, nurses visits three times a week, he has doctors appointments nearly every week and his medical routine is an all day cycle. I never knew I would learn so much about feeding tubes, oxygen, treatments, medications, seizures, skeletal dysplasia, therapies and so on. It has been a full time all in journey. It has been terrifying at times but also so incredibly beautiful and has brought such joy and meaning to our life. Jude came into my life and gave me the most beautiful and meaningful title “mom”
As a mom I didn’t even have to learn to push myself and my desires to the side when my son arrived. I instantly had one and only one motive and that was to give my son the best of everything I had to offer. I wake up everyday thinking what can I do to make his day great and it will ALWAYS be that way. His happiness and comfort is the most important thing to me.
For a long time, the guilt that weighed on me when I even thought anything about my own dreams and what I wanted to do for myself was almost unbearable. How dare I even try and pursue something that doesn’t involve Jude. How dare I pursue something that could take any of my attention off of him. I felt like if I put my effort or time into anything else, it was taking away from him. I didn’t want to be selfish when I knew he needed all of me.
This was a mindset I struggled with not only with my existing desires but I also told myself I would be a terrible mom if I even thought about having another baby one day. I didn’t think it would be ok to give any of myself to another child when Jude needs me.
I have always loved to make things whether that be paintings, handmade cards, headbands, decor items and many other things. My craft boxes are huge and overflowing and have been put away and hardly touched for over two years and the sewing machine we purchased years ago has been used once. It is rare that I let myself do any of that.
Several months back we moved into our own home after not having one for a long time. I was so excited! But moving in, I instantly felt swamped and overwhelmed with anxiety. How on earth was I suppose to stay on top of all of Jude’s care and therapy and give him all my attention when I now had my own house to keep up with. It was a a major change and in someways a hard transition but I quickly found a way to balance it all. I realized I am more than capable of keeping our home clean and cozy and not taking away from Jude while doing so.
Last month I was invited on a day trip to Savannah with some of my closest friends. One who was visiting all the way from Australia. My mom kindly offered to keep Jude as that would have been a long day and a lot of car time for him. I wanted to go so badly! But I literally kept myself awake all night contemplating it and crying my eyes out all while I tortured myself with “what ifs” I was terrified I would go and be hours away and something would happen and Jude would need me. Last minute I decided to go and I frantically used every bit of my strength to hold myself together in front of my friends as we left the driveway and made our journey that would take me several hours away from my son.
Let me tell ya, we had such a great day. Yes, I missed Jude so much. But my mom kept the picture texts coming and kept me updated on how he was doing the entire day. I was shocked and relieved to realize that I didn’t have to feel like a terrible and selfish mom for letting myself have fun and do something I wanted to do.
These are just a few examples of the the things I have struggled with. I’m not saying I am totally set free from it, but I am defiantly doing much better and this is why.
Jude is filled with so much love and joy. When he is in a room with me and I start laughing, he almost always has a huge smile appear! He loves to hear that his mommy is happy. Lately I have started to realize that pursuing my dreams doesn’t mean I am selfish and forgetting about Jude. Jude is actually a motivation for me to purse them. And even if he’s not present for each one or able to do everything I do, he is apart of each and every single one of my desires! He is my reason for joy and passion. He gives me the strength to walk out this journey and is my comfort if ever I feel I have failed. He never sees my failure, he only sees my strength and love.
Why am I sharing something so personal?
Here recently I had a long talk with another mother who is so very near and dear to my heart. She also has a child with special needs. We were able to open up and share a lot of our personal challenges, desires, victories and even failures with one another. While talking to her I felt so encouraged. She didn’t judge a single feeling or failure I shared with her, rafter she had an incredible way of turning it around and pointing out the strength that was coming from my moments of weakness. I also learned that I am not the only one who struggles with some of these challenges and I learned that it’s ok to have struggles now and again, it’s ok to pursue my dreams and it’s ok to feel.
These twenty to thirty minutes of conversation with her was such a affirmation in so many things The Lord was already trying to show me. I only hope she also took something valuable from these moments that I will now always remember and cherish.
To all of the other mothers with special needs children who may struggle with some of these same challenges,
Please let me tell you what I have learned and what I am still learning. Jude is the most beautiful masterpiece in my collection of dreams. He is my motivation to live my life to the fullest. He’s my reason to go about each day with joy. His diagnosis is not who is he, it is just a part of him. It will not dictate his happiness and future and it will not steal dreams from him nor I. Jude has so much passion for life, love to share and joy that is beyond contagious. He is not held back by RCDP. And I know my loving little boy wouldn’t want it to hold me back. You see, Jude is my greatest dream and with him by my side, we can do anything.
Jude is only two years old yet the lessons I learn from him on a daily basis are incredible and so valuable. He may not have words to speak with but his life truly does speak volumes. I am so blessed to call this precious dream of mine, my son. Thank you Jude for giving me the joy to walk through each day, the strength to accomplish what I thought was impossible, the motivation to keep standing and for showing me
such a beautiful and perfect display of love. You’re my reason to keep dreaming. The dreams I have for you are unending and so beautiful. I can’t wait to fulfill so many dreams with you by my side, my warrior boy ❤️