Posted 4/23/2017 1:31 AM (GMT 0)
Through the eyes of the other half...
The year 2015 is a year I will not forget. It is a year that changed my entire future... and for reasons that most would never think of. I had been with my other half, Michael, for three years at that time. We were not only lovers, but the best of friends. We would care for one another in different areas of our lives, and help each other grow into better people. In the beginning of 2015, Michael began not feeling well. It started with just a little blood in the toilet, which did not seem to urgent at the time. A few days after seeing that, his belly button began to bleed... this made us concern and we decided to get it checked out. After a few visits from the doctor, he was scheduled for a colonoscopy. At the same time this was happening... I found out that I was pregnant. Nearly 6 months along, we only had 3-4 months to prepare for our first baby boy to arrive in this world. The news was, understandably, shocking and yet well accepted. He was our miracle baby. A child we were both told that I may never be able to have.
Soon, our world turned upside down. Michael was diagnosed with a disease called 'Ulcerative Colitis'. That was just a word to me... what did that mean? What could we do? How did he get this? The answers were not so pleasant. As I am sure you are all aware, Ulcerative Colitis in essence is incurable. It is a very nasty disease that changed everything in our lives. In the course of 4 months, Michael had lost 130 lbs due to the lack of eating, flares, and getting sick from the disease. He became steroid dependent, and his personality began to change drastically. He was no longer the same man that I fell in love with. One day we would be discussing names for our son... the next day I am sleeping in another room.
However....Through the mood swings, personality shifts, fights, rumors, drama, and all of the hardships of being pregnant on top of that... I stayed by his side.
On June 25th, 2015, our baby boy Connor was born. Michael weighed less than I did at the time, and was very anemic. He stayed by my side as we changed from a couple to a family. It was a magical time for the both of us. To this day... I am so thankful that he was by my side. I cannot imagine the amount of pain and suffering that he was feeling during those few days. I am still in awe of it. However, only a few days after being released from the hospital, I had to go with Michael into another hospital for a flare that took more blood out of him than anything else before.He was told from that point on that the GI he was seeing (Who we no longer trusted at this time) wanted to put him on Humara. Looking into the side effects of this biologic and Michael's medical history.. we all knew that this drug would have killed him easily. We asked, begged even, for any other option. The GI said the only other option was surgery, and he refused to give Michael that option. So, we all talked together as a family and made a decision. In a few months time, we all moved to Florida for better medical care for Michael. In all reality.. it was Michael's last hope for life, and we were all aware of that.
I was only 21. Michael was only 20. We both just had our first son who was no more than 2 months old... yet I stayed with him.
The move did not start off well.In September we lived in a hotel for about a month. Michael began getting worse by the day and he ended up staying in the hospital more than the room. Hope seemed to be a joke for us at this time. From October to December 2015, Michael contracted so much more than just Ulcerative Colitis, and suffered so much more than any person should at his age. Pancreatitis. C. Diff. Toxic Mega-colon. And even pre-signs of colon cancer. This lead to an emergency surgery to remove his large intestines. We weren't sure that Michael would have survived the surgery... but he was not going to survive keeping his colon any longer. His mother, father, son, and I all waited for hours in the waiting room. Remembering. Crying. Praying.
Through the hardest and longest wait of my entire life... I stayed by his side.
He made it. With a temporary colostomy bag, he began to show the first signs of improvement I have seen in almost a year. He gained a healthy amount of weight back. The color of his skin returned to normal and the steroids were no longer needed to help him survive. He began to laugh and love just as he once did, only with a few minor restrictions. During 2016, he began the long process of reversing his colostomy bag into a J pouch. The surgeries were still scary and dangerous, but not nearly as bad as he had already had it. Through it all, we had hope and faith. It faltered at times.. and it was hard to keep it going. But we had to. It was the only thing we had at times to keep us going.
I am proud to say that now, in the beginning of 2017, My Michael no longer has a colostomy bag. He had the reversal surgery and just had a scoping done a few days ago. The pouch healed beautifully with no hindrances. He is able to play with his soon-to-be 2 year old son with no signs of pain. No worry of his toddler trying to grab for his bag and pull on it (It has happened before.) For the first time in the last two years.. he felt as though he could be a true father.
Through all of this.. I stayed by his side.
I wrote this to give an insight of what it is like on the other side. Most of you here knows how it is to be 'Michael'. That person who suffers through the physical pain with no real explanation of how or why you are forced to suffer. I wanted to show this community that not all of us leave because of a disease. A disease does not change the heart or soul of a person. Yes, this disease is hard. It is challenging and hurtful in so many ways, even to us on the outside. Driving to the ER at 11pm and sleeping in the parking lot while waiting to see if your loved one will be admitted or coming home. Feeling helpless while your other half is in pain and crying for help and release that you cannot give.
It is very hard. In fact, going through all of this was one of the most hardest things I have ever done in my entire life. It was worth it. All of this... was worth it. True love is real, and not just in stories or fairy tales. It is shown through trials and tribulations, and will be tested to the very breaking point of your soul. Perhaps not to everyone in the world... but to me, it was well worth it all. For now, I have my family. I have a love that has been through Hell and back. I have a son who can look up to his father as a real life superhero.
To those that read this and are alone: Do not give up hope.
To those that experienced someone leaving them through their journey: Do not give up hope.
To those that are looking at their loved ones through other eyes: Do not give up hope.
Things always happen for a reason. Although we may never know that reason, or understand it, the reason is always there. And even though I may never meet you, laugh with you, cry with you, or hold your hand.. I hope that whoever is reading this understands that I have faith in you. I have hope for you. And I sincerely wish that things will get better for you in your own life and in your own journey. Just as my story is not yet finished with Michael and Connor, your story is not over either.
With love,
Abbie.