Month One-
Uncertainty, overjoyed, unbalanced, blessed, strengthened, hope, fear, immeasurable love, inspired.
These are all the emotions that I went through during Thomas's first month of life outside the womb. That little boy amazed everyone. He was born with a broken body with barely a heart beat, but was able to overcome and persevere through so much pain and other health issues. We could only look on and try our best to comfort him when we were at the hospital and to make sure he knew how much we loved him.
I hated feeling like I wasn't able to be with Thomas as much as I wanted OR with Taylor as much as I wanted. I don't know how parents do it without family or friends to help them. How would a single mother do it? I feel like I barely survived. On top of that I was pumping breast milk every three hours while Shane worked all day long and then went straight to the hospital afterward and didn't come home until Tay was in bed.
Month Two-
Excitement, scrambled, tired, self doubt, frustrated, blessed, strengthened, hope, fear, immeasurable love, inspired.Oh goodness, Thomas was actually discharged to come home! We were able to spend a full week at home before he had his first trip of many to the ER. This became the month of surprises. Every week there was something different we were worried about- feeding, re-flux, aspiration, hernia, breathing, But this was also a great month of learning and growth for all of us. Thomas was doing well with Occupational Therapy and Physical Therapy. Thomas was starting to move more and didn't seem in pain from healed fractures. Shane, his parents, and myself were learning more about Thomas and his cues. We were learning more about what was normal for Thomas and what was concerning. We researched more about respiratory and digestive issues with babies that have severe OI. We became more comfortable with the machines and with handling Thomas. I became associated with the OI Parents group and immediately felt them encircle me with their strength and experience.
One particular night, I know Shane and I felt so tired and were having a hard time handling Thomas's schedule and cries throughout the night. Everytime I heard Thomas start to cry that night, I'd say a prayer to Heavenly Father that if it wasn't serious that Thomas would be okay and go back to sleep. Thomas ended up having such a good night that night...
It seemed that there were a lot of questions I still had about the plans for Thomas and why things didn't seem constant for Thomas. Why were we going up to the ER so often? Why can't I get things figured out for my son so we can stay out of the hospital for at least two weeks? What was I doing wrong?
However, my family was together all under one roof. I was able to wake up and cuddle Thomas while Shane and Taylor chased each other around the house.
Month Three-
Nervous, confidence, tired, frustrated, blessed, strengthened, hope, fear, immeasurable love, inspired.
I was about to return to school. I had a couple of weeks left. Time to start making freezer meals. Time to look at lesson plans. Do I even remember all of my students' names? How am I going to balance teaching, Taylor, and Thomas?
Thomas was still having pulmonary and digestive issues, but we were getting sick of staying trapped in the house. We grew confidence in Thomas and in ourselves and ventured to a family party, sacrament meeting, and to the park. I started looking at our situation differently. No matter how much time we have, I don't want to say that we spent all of it on one floor of our house because we were too scared to live life. I needed to figure out how to live life with Thomas's machines and his fragile body.
Great Grandma B got to hold her first great grandson! This woman inspires me. I was exhausted from being at the ER all night so my grandma came and made me lunch and cleaned the house. She is in her 80s and is still willing to get her hands dirty and serve. I have always been able to count on her and hope she knows that I will be there to clean her house and make her lunch when it's my turn to take care of her.
Looking ahead at the next couple months and looking back at the last few months, I realized that there was no predictability to Thomas's situation. Not only was his mutation completely unique to him, Thomas's story was unique as well. Thomas has never gone more than a week and a half without an ER visit, a sudden need for a primary care visit, or a hospital admission. So given that pretty busy history, it didn't seem doable or even smart to continue working. It seemed like it would only end up hurting my family. I had been praying as to how I can better help Thomas and without a doubt this was an answer. My family needed all of me.
Luckily, we were able to find a replacement at the end of my first week back. Thomas made it the entire week and then needed to be taken by ambulance to Primary's.
Month Four-
Angry, tired, frustrated, unbalanced, relieved, blessed, strengthened, hope, fear, immeasurable love, inspired.
Thomas celebrated his one month, two month, and three month birthdays in the hospital. Maybe his four month birthday will be different.
During this hospital admission I have often found myself angry that Thomas isn't being handled with enough care in regards to his limbs and possibility of fractures, angry that not enough was being done to ensure that a definitive plan was in place to make sure that he didn't end up in the ambulance again, angry that I was not being listened to when speaking about experiences of other babies with severe OI.
At the same time, I was also sinking myself into conference talks from the last session and praying daily independently and with my children. In the car to and from the hospital I was finding comfort in Primary songs and conversations with Taylor about the Plan of Salvation.
Tired and trying to figure out how am I going to do this. It's only been a week and half but this is not a quick fix. Thomas needs a lot of help for a long time. What decisions are we going to have to make? Will today's doctor be doom and gloom or optimistic? Will today's doctor be familiar with OI? Blah..... I'm exhausted even thinking about it. But Shane and I know where we stand and know that we do not want to be the ones to tell Thomas when he is done living on this earth. We trust in Heavenly Father and we trust in Thomas. We want to give Thomas EVERY OPPORTUNITY to live his life on this earth and when and if Thomas decides it is more than his precious body can handle, his body will let us know. I will not fail Thomas.
We were blessed to watch the play based on a book by Nathan Glad (one of our dear friends with OI)- "Climbing With Tigers". This kiddo has been such a motivator for us to fight for Thomas. He is the happiest kid and doesn't let OI get in his way from living life. The play helps others to see what life is like through his eyes. Nathan's play also teaches so much about bravery and friendship. We walked away truly lifted and grateful that Taylor was able to experience that. GO SEE IT!!! We are so grateful to know his family and look forward to learning how to pay it forward and serve other families.
Continuing to pray for guidance on how to take care of Thomas, consulting with my army of OI mamas, and relying on friends and family to help us as we scramble day to day... finally a care conference was set. With Thomas's entire team, we were going to finally build a plan for my little guy to not only get him to a barely safe place to go home but to get him to a strong and sturdy place that would be the most promising for Thomas in the long run. We know Thomas needs to get his lungs to mature, the proper nutrition, and the best possible way for us to support his lungs. The days leading up to the conference my prayers had changed. Instead of praying for guidance for myself, I prayed for the doctors and Thomas's team to be guided.
The day before the conference a new attending was assigned who also happened to have a child with special needs and knew the importance of a support group and the value that other parents were able to share with me. She recognized the weaknesses of his current care plan and immediately wanted it to be more driven and goal oriented. She also reached out to other resources that specialize in OI. Between her, our primary care doctor, and the OI specialists I felt that a weight had been lifted off of my shoulders. The care conference was a team of 10 who's primary concern was helping Thomas get the care he needed so he can not only come home but have the best chance of staying home for awhile.
He's needing to have better pulmonary support via High Flow and BiPap (or Cpap... they are going to do some studies with Thomas to decide which). He's now receiving Zole treatments to help his bones and will be starting some respiratory medicine as well. I don't know how our new plan will turn out but I do know that I finally feel peace that Thomas IS in the right hands now and the doctors are going to do the best they can.
Dreams
Tonight when I was getting ready to put Taylor to bed, she pulled out several books that we have read a million times. Finally, I stepped in to see if there was something on her shelves that we hadn't read in a while. I found a book of hers that I had actually never read with her- "Fanny's Dream".
I read about this woman who was waiting for her fairy godmother who never came. She never got to marry the prince or live in a castle or live a life free from hard work. But she did marry a man who loved her. They worked side by side. She had her hands full with taking care of the children and the life they had created for themselves. Their house burned down, but they rebuilt it and pushed forward. Later, her fairy godmother finally came and offered her the dreams she had long ago. She chose the life she had built.
Holding back tears as I finished reading this book to Taylor, I realized that I would not have my life any other way. Yes, of course I wish I could take away Thomas's struggles, the medical bills, the stress, splitting our time between our children, and how tired we are.....
But I LOVE my husband and how hard he works for us and how much he loves being a dad. His patience and his priesthood has been such a blessing during this time. I LOVE what a strong spirited girl my daughter is, how caring she is to her brother, her creativity and her affectionate personality. I LOVE my son's facial expressions, quiet strength, his smiles and coos, his heavenly spirit, and the humility and perspective he has given me.
What has happened to Thomas is not any mother's dream, but I know that we can build an even more wonderful life for our family because Thomas is a part of it.
