The words, “Mommy, I had an accident” have become words that we hear quite often now a days. Generally, we are not out when Ollie has his accidents but recently, we were out at the playground at Countryside Greenhouse. Ollie walked up to me, soaking wet, and all I felt was such an immense anger. When I asked him why he didn’t tell me that he had to go, he simply replied that he just couldn’t feel it. Why now? We have been successfully in underwear for months without any accidents. I stewed all the way home and it wasn’t until the boys were in bed for nap time that I sat down and really thought about all of the accidents that Ollie has been having.
Ollie’s specialist increased his Sirolimus dose at his last appointment. As I looked up more of the side effects, urine incontinence jumped out and slapped me right in the face. He honestly couldn’t feel it. All the rage and self pity I was feeling drained until I felt the tears coming. I had jumped to the conclusion that he was doing it on purpose, instead of looking at his circumstances as a whole. In that moment, I felt like the worse mom ever.
To make matters a little worse, Ollie was helping in the kitchen later that day and wanted to see what I had taken out of the oven. As he leaned in, he burned a section of his cheek with his malformation. Now any cuts, scraps or bumps are extremely serious for Ollie. It is a direct pathway for any kind of infection to wiggle its way into his cheek. Needless to say, I was freaking out. He didn’t make a sound and was perfectly content to eat his dinner with mom holding an ice cube to his cheek. The kid is a tiny superhero I am telling you.
After talking with his specialist, we decided that putting vitamin E oil on it, was the best choice for now. The goal was to keep it soft and prevent it from cracking. After a few days of applying the oil four times a day, the initial scab came off and it looked to be healing very well. Better than we expected honestly. Then this morning happened. As I put his oil on, I noticed a patch of redness. We have started to dread this redness. Cellulitis or better known as, the infection that puts us in the hospital every year for a week. My heart just started hurting. Why does it seem like we cannot catch up? It is one thing after another.
As we have progressed through the past few weeks, I have felt lousy and like I am drowning under it all. The house work slacked and my attitude along with it. Having had it, I decided that the only person who could make me feel better was myself. If I didn’t love myself, why would other people? And for that matter, why should I base my happiness or self worth on what others think of me? I have started what I call, Operation Personal Time (OPT).
I have OPTed to put myself first in certain areas. In the morning before the boys wake up and in the evening after the boys are in bed, I have started doing a daily workout. Feeling the ache of muscles is so satisfying. It is a reminder all day long that I am working toward making myself a better me. It has helped my attitude through out the day and has increased my energy level. Along with working out, I find I am more conscious about what I eat. I find that my body craves fresh things, fruits, veggies and plain old water. Now it hasn’t been a perfect journey to be sure, but I find myself reaching for those sugary items less and less. It is definitely hard dragging my butt out of bed by 6:30 in the morning just to work out but totally worth it.
I have also made it a priority for some ME time. Just this week I was able to spend some time over at my parents without any littles. It was wonderful just to catch up with them and squeeze in some much needed Mother Daughter time with my mom. I have found that being outside has also helped. Being a sun goddess is in my blood so I have started to make a habit of soaking up the rays for 30 minutes of the boys nap time everyday that I can. The sun can work wonders on my heart!
So now you know how to pray for us in the next few weeks. Ollie is back in pull-ups, which he is not happy about, as well as on antibiotics for the next week. At this point we take his infection day by day and sometimes by the hour. Hopefully now that he has antibiotics in his system, we will see improvement soon. If not, perhaps a hospital stay. I’m a little overwhelmed just saying it.
*Well I wrote this yesterday. We have officially been admitted for IV antibiotics and we will see how many days that we need to be here. Hopefully not a whole week like our last admits have been. His blood work has all come back good, so that means that we were able to catch this infection relatively fast. Now we just need to get the redness, swelling and heat to leave his cheek. He has every nurse, doctor and child life specialist wrapped around his finger already! His superman cape has been a life saver today too!
Declan is having a blast with my parents and could not have cared less that we left him there this morning! Hopefully he will be able to come down tomorrow for play time with Ollie. Ethan and I have been so blessed with parents and family who live in town and who are more than willing to help.
Special shout out too for the staff at Rustic Corner who keep it all going and making it possible for both Ethan and I to be here with Ollie.*
So if you are feeling overwhelmed by whatever has been thrown in your life the past few weeks, just take a minute. Step back and figure out what those triggers are. For me, it was lack of personal time to recharge. Once you figure it out, find possible solutions. Start by making a small change to your life and slowly build from there. Start your own Operation Personal Time (OPT). I would love it if you would all share your own OPT stories! Until next time!