“I have Osteogenesis Imperfecta (OI). I am a full-time wheelchair user and am 34 inches tall. I have restrictive lung disease, severe acid reflux, and have had over 600 broken bones. I would describe myself as determined, inspirational, happy, loving, and I don’t give up if it is important to me. I went to a local community college for 2 years, where I obtained my Associates in Liberal Arts. Then I moved to a university and completed my Bachelor’s in Social Work. After I had my son, I obtained my Masters in Social Work. I have chosen to be a stay-at-home wife and mom and have no desire to focus on my career. My current life is being a stay-at-home wife, mom, and blogger. I hope to share my story with others and show them having a disability doesn’t have to mean you can’t have a ‘normal life.’ My hope is to encourage others to follow their dreams, no matter the cost.
I met my husband in 2008 and we have been together ever since. My husband is 6’1″ tall. We met when we both were in college. We lived in the same apartment complex. We started hanging out every day and after 3 months of hanging out, we started dating. On May 8th, 2009, Michael proposed to me. He took me around the city park where we lived in a horse and carriage. During the ride, I sat on Michael’s lap. After a few minutes, Michael asked me if he could put me on the seat, and I replied, ‘No.’ So he said, ‘Fine, I’ll have to do it like this.’ I was confused. He pulled out the ring warranty and asked me ‘if he could put a warranty on our relationship.’ I said, ‘I guess…’ I was still very confused. Then, he pulled out the ring, and he asked me and I said yes!
On June 18th, 2011, Michael and I had the most amazing wedding ever. We got married outdoors and it was perfect to us. We had all our family and friends there to support us. Michael and I said ‘I do’ in front of our families and friends. It was a glorious day full of love, fun, and happiness! Michael was an opinionated groom, which was interesting to handle, but I wouldn’t change it for anything. He had an opinion on the ceremony and vows, his attire, his hair, his and his family’s boutonniere, where we got married, and who married us. I was very particular myself. I wanted the white dress, my hair up, pink as the main color, my dad to walk me down the aisle, to not see Michael until walking down the aisle, my dad to not see me until I was all dressed up, and also the typical rituals such as first dance and cake cutting. I wanted the wedding party including the officiant to sit down in chairs with me and not be standing.
Being a bride in a wheelchair meant we had to make some modifications to the wedding. I always have to look up or raise my wheelchair up, and I didn’t want to do that at my own wedding, I wanted everyone to be at the same level as my wheelchair. One big mistake we all made is not having everyone stay seated as I walked down the aisle with my daddy. I didn’t consider all the heads. I couldn’t see Michael and I couldn’t see his first reaction as all I saw were the guests. I really regret that, but I guess 9 years later, it isn’t important anymore. I tried to get a lot of spacing between the tables for the reception so I could easily make my way to the guests without getting trapped in between chairs and tables. It didn’t work as well as I had hoped, due to the size of the venue and the number of guests we had. I hate shoes and it is a very known fact about me. One day, Michael and I were at a mall, and we found these adorable shoes in my size (I don’t say shoes are adorable ever)! Michael and I decided I would surprise all the guests with shoes when Michael did the garter toss. Only the DJ, my best friend Anna, Michael, and I knew about the shoes.
It was a shock to all our guests and they loved it! I was very clear I would be barefoot at my wedding! My wedding dress was a normal wedding dress from David’s Bridal. My grandma’s friend was kind enough to modify it for me. It took a lot of work to cut it appropriately. My mom and aunt took the extra fabric and made a wheelchair cover.
In 2014, we bought our first home together. It is very wheelchair friendly. Michael and I have been through so much but he is amazing and has always treated me ‘normal.’ He has never focused on my disabilities and in fact, he expects a lot out of me despite my challenges. I love how he gives me all he has. He is hardworking, determined, funny, and so handsome!
In 2013, I decided I wanted to get pregnant and risk my life to have a baby. I saw a maternal-fetal specialist who was very unkind and told me not to get pregnant. I was very blunt and told him, ‘If you didn’t give me exact reasons for why it’s a risk, I’m going to disregard your medical opinion.’ Michael and I struggled to conceive and it took me 11 months to get pregnant. I tried to ask my primary doctor for testing to make sure I could get pregnant, but because I had normal cycles when I was on birth control, the doctor wouldn’t test my hormones. I was livid but decided to just take matters into my own hands. I got pregnant a year later with our second pregnancy. I got pregnant just five months after the second miscarriage. Maven is our third pregnancy.
Being a little person with restrictive lung disease and fragile bones was very hard. I started requiring oxygen at 20 weeks gestation. I had gotten pregnant during the first week of my Master’s in Social Work. The program was a year-long program, and I quit at 18 weeks after finishing the semester up. I had to go 2 weeks past the semester ending from missing so many of my classes due to doctor appointments and not feeling the best during the pregnancy. Once I was 20 weeks along, Michael set up my hospital bed, which was in storage in our living room. I basically lived on that the remainder of the pregnancy. Michael put our living room couch next to the hospital bed and slept next to me. I struggled to get in and out of the bed and my wheelchair.
As my belly grew, it was hard for people to lift me also. I was on oxygen full-time from 18 weeks gestation. Michael had to wash my body at around 15 weeks, due to the size of my belly and how short my arms are. We announced Maven was a boy at 16 weeks gestation. Michael building a snowman and wrote the gender on the snowman.
I was admitted to the hospital at 31 weeks and 5 days because I was coughing so much I couldn’t even answer my OBGYN’s questions without coughing. I was sick from a cold and had a rib fracture from coughing so hard. We later realized I was also coughing from my body trying to make more air to breathe due to the growing size of the baby. Thanks to the University of Utah Hospital, we delivered our baby boy at 32 weeks 5 days due to preeclampsia. Michael was 3.5 hours away at home working and it was actually snowing that day in March so he had to rush to get to the hospital in a snowstorm. I was taken to the OR while Michael was still driving to us. I was put under general anesthesia, so I was not awaken during the birth. The main reason for this was because I have severe scoliosis and kyphosis of my spine. Getting numbing medication in my back would have been nearly impossible. I do get sad at times when I realize I didn’t get those first few moments with Maven. Maven was born at 3 pounds 13.7 ounces and was 17 inches. So, he was exactly half as tall as me when he was born. Michael arrived at the hospital about 15 minutes after I was back in my room.
I was the first to hold him in the NICU. Michael held him after I did. It was the best feeling in the world. My stomach hurt so bad. I thought putting Maven on it would be awful, but he was the best pain medication I have ever had. I would spend another 3 weeks in the hospital due to an infection in my stomach. The hospital was amazing and moved Maven to a NICU room closer to me so I could go visit him easier. Michael spent 15 of the 30 days in the hospital with us. When he was not with us, he was at home working. Maven spent 21 days in the NICU before coming home.
It was more important to give Michael a baby and have a baby myself. I gave my entire life to bringing a baby into the world. I told the doctors, ‘I will fight for myself and my baby and do all I can to make the pregnancy successful. I needed you to handle all of the medical aspects of pregnancy and delivery.’ Maven is my greatest wish, pride, and joy, and the greatest gift God has given me. I love watching him grow and seeing his passions and dislikes in life. He doesn’t know what it is like to have a mom without a wheelchair and he will tell people, ‘That’s my mom!’ Michael and I love taking Maven on outings, trips, and showing him the world. We love to do family walks, go to parks, sightsee, go swimming, and go out to eat — anything with us three. Michael and I hope to adopt a baby someday. I choose to not risk pregnancy again. I wouldn’t want Maven to have to risk losing his mom to having a sibling. I was scared and felt very alone in my pregnancy but I never shared that with many people. I was quiet because I had such a negative reaction from people, including family and friends. I only told everyone the positives. I know people were scared, but so was I. It was more important to me to be excited and show how blessed I was rather than focusing on how scared I was. We knew by 15 weeks Maven did not develop the OI.
Caring for Maven has been a learning curve as he has grown. During the pregnancy, we got a lot of negative feedback and a famous question was, ‘How will you care for Maven?’ That question upset me severely and my answer has remained the same! ‘I don’t know how I will do it but I will figure it out.’ We had a crib donated to us that opened in the front. Michael built me a playpen that was up high so my wheelchair could pull up to it and access Maven. The playpen is where I changed Maven and played with him. I used a high chair that sat on a folding chair, and I was able to pull up to it.
When Maven was a baby, I put him in zip-up sleepers and used them to help me lift him and carry him from place to place. I put my right arm under his head and used my teeth to hold the sleeper on his belly. When he learned how to stand, he would ‘climb’ up to me, and I would hold him on my footrest. When we went in public, he would ride on the footrest of the wheelchair, and I would strap him in with my wheelchair seat belt so we were both strapped in.
I have never let my disability or health affect my life and that will always remain to be the case. I got married and had my son because it has always been my dream to be a wife and mother. I am so grateful to Michael for always believing in me and being my rock throughout my adult life. He is the best husband and father I could ever ask for. I am so grateful to God for allowing us to become parents to Maven and that I was able to be pregnant three times. I know many women who long for that and aren’t as lucky as we’ve been. My advice is to never give up on your dreams, no matter the cost.”
This story was submitted to Love What Matters by Trisha from Idaho. You can follow their journey on Instagram, YouTube, and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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