I am here to share the trials and tribulations of my daughter, Alexis, who was diagnosed with Ulcerative Colitis at age 3.
Tuesday, July 31, 2012
I was contacted by a member of Girls With Guts and asked to write a piece detailing how I have managed to stay strong throughout this entire process, below you can read my article.
As a mother of a 5 year old with Ulcerative Colitis, you would not believe just how many times I have heard people tell me “I don’t think I could do what you do, you are such a strong Mother.” But the thing is, it’s not strength and it’s not exactly like I had a choice, I am simply doing what I must do as a Mother to care and protect my child when I am forced with no other options.
Alexis was diagnosed at just 3 years old. My world shifted and I felt like I was losing control. As a mother, I felt like I let my innocent baby girl down. Fitting in Doctor appointment after Doctor appointment, to making sure she received her medications on time (at one point I had to give her medicine to her ten separate times throughout the day) was all I could do to ensure she felt as normal as she possibly could. Many hospitalizations later, I was given the option of Remicade or total colectomy. I wasn’t ready to put her through such a major surgery, but the medication had side effects that scared me to death. That saying “Mommy knows best!” isn’t always true, because I had no idea what to do. Her G.I Doctor talked with me several times and suggested we give Remicade a fighting chance, so we did. It failed.
July 12, 2012 was the absolute scariest day of my life. Alexis was forced to have a colectomy with a temporary ileostomy, and again I felt as I had failed her. The pain I felt while she was in the operating room is simply unexplainable. Seeing her in recovery was also a moment I will never ever forget. These are situations you never expect to happen as a parent, but when you are forced to deal with them you must always put your best foot forward and do it with a smile. So we did, and we made it through (sometimes, barely hanging on!). We were lucky enough to prepare Alexis for the transition which made it 100% easier on her. She knew that without the surgery, she would still be sick. She has taken the change so well, and I would like to think that my husband and I had a huge role in that.
So, to ANY parent in any comparable situation: You are allowed to cry, be angry, hurt or sad. These are our precious kids we are talking about here! What matters most is that you are there for your children when they need you. Talk to them; let them know it will be okay; shower them with your love and attention. As a parent, that’s really all you can do when you are left with no other options. Walk tall and they will follow.
“You never know how strong you are, until being strong is the only choice you have.”
I was honored to write for them, and I am very excited to spread Alexis' journey with even more people.
Now, today was a very exciting day for my family. I found out at the beginning of the month that we were expecting (thus , my lack of updates-- I have been sick..and just TIRED!) I visited the ob and had our first ultrasound today. This little guy (or girl) was there for Alexis' surgery, and made it out a-okay. Another little fighter. All the stress, lack of sleep (and food for the most part!) and here they are. Despite all the hurdles we have faced up to now, I know everything is going to be okay. Alexis is feeling good, and she is BEYOND ecstatic to welcome another sibling!