It has been a LONG time since I could muster the strength to sit in front of a keyboard and bring the world into my life again. Honestly, my silence stems from a fear of coming across as all “doom and gloom.”
While we have had ups and downs this past year, the hardest part has been me. I realized it was time to update those who continue to love and support our family, but also to be a voice for the thousands of moms out there who are afraid to share how they are feeling.
I know how lucky we are that Brian’s condition is controlled and manageable at this time. Even though his food options are limited severely, he is a happy and healthy looking four-year old. We have managed to avoid any hospitals stays since January, and the three endoscopies this year brought positive test results. Dealing with EoE is a slow process and can be daunting at times.
Adjusting to being back home after six months away was difficult. Now after being home for a year, I feel like I have lost the spark that makes me…me.
Below are some scary and interesting statistics regarding being a caretaker (Courtesy of caregiver.org):
Caregivers show higher levels of depression.
Estimates show that between 40 to 70% of caregivers have clinically significant symptoms of depression, with approximately one quarter to one half of these caregivers meeting the diagnostic criteria for major depression.20
Caregivers suffer from high levels of stress and frustration.
More than one-fifth (22%) of caregivers are exhausted when they go to bed at night, and many feel they cannot handle all their caregiving responsibilities.33
While in Philadelphia, I had days where I found it difficult to do anything, even leave the hotel room. Due to the circumstances, this never lasted long before I was bombarded with kind requests for visits, dinners, etc. Home is a different story. Here, life around us continues to move quickly and in many different directions. Not only do I have the responsibility of ensuring Brian eats only his safe foods, receives his medications, attends doctor’s appointments, scheduling endoscopies, etc., I also have a beautiful seven-year old who needs my attention and love. She has lunches to prepare, school events to attend, homework to check, Girl Scout projects to complete and so much more. While at home, I am pulled in many directions with my children, while trying to keep my house from falling down, the laundry done and keeping up with my outside commitments. Eventually, it becomes too much.
I have been fortunate to have some amazing friends and family, who have noticed the change in me and have not stopped in their quests to bring me back. Even when I avoid phone calls or invitations, they are persistent and I am grateful.
I am not ashamed to admit that the past couple years have caused a depression to grow. I am not looking for attention or sympathy from anyone by admitting this, either. I guess I just want all moms to know it is okay to not be okay. I am working on finding my way back to who I was and doing the things that make me happy. I love my children more than words can say, and when I feel good, I can appreciate them for all the blessings they bring to my life.
If anyone out there feels lost or alone, I urge you to find help. Once I opened my eyes, I found a sense of self in places I had forgotten to look. I took on the responsibility of organizing a statewide memorial tribute for Fallen Officers. I didn’t do this project for notoriety or recognition, but because it was the right thing to do. Working on it showed me the truly wonderful people who live in this world and I am honored to be a part of it (It also deserves praise back to Philadelphia, where I first learned of the program – Brian’s illness did bring good things our way).
This post is not meant to be a “woe is me.” It is an explanation and as part of my New Year’s Resolutions, I resolve to share more with those who continue to follow our story and check on Brian’s wellbeing. I do not alway have much to say, but being asked means a lot to our family.
I am lucky to have such an amazing little man. He has five safe foods right now (apples, carrots, potatoes, avocado and pears) and we are trying oatmeal, which means he has the pleasure of eating “oatmeal cookies.” I use quotes, because they are made with gluten-free oats and unsweetened apple sauce. While very cardboard tasting, Brian loves them and he enjoys having a cookie to eat when his sibling and cousins are enjoying dessert. We have managed to stabilize his blood sugars, although since he has grown significantly this past year, the dose had to be raised on his growth hormone (Brian does not produce a growth hormone, so without the additional dosage, he could not grow and stabilize his sugars). Doctors are thrilled with his progress so far, but have come to the conclusion that any type of meat will not be added to his diet anytime soon.
I am not thrilled with the services we have here in Phoenix. I adore our endocrinologist, allergist, pediatrician, and I like our gastroenterologist, but cannot stand his staff or the hospital where he performs procedures. It seems that watching my son go through eight endoscopies in less than two years does not qualify me to know what medication is needed to make a scope successful (sense the sarcasm?). His last scope resulted in a reaction when he awoke and a violent outburst. It is frustrating, but I look forward to returning to Philadelphia this next year to meet with his team of doctors and discuss the right course to take in the future. It is a huge relief to know I have the Philadelphia doctors to turn to when doctors in Phoenix leave something to be desired.
Each day brings trials and rewards. Being Brian and Addison’s mom is my most important job and the one I plan to devote the most attention to this next year. I know I have to start taking time for myself and only doing outside activities that bring me joy. Thank you to our family and friends for your ongoing support, especially to those who stand beside me here in Phoenix and across the country, even when I go silent. You keep me going.
We wish everyone a Happy and HEALTHY New Year. I look forward to the promise of hope 2017 brings, and wish nothing but joy for your families.