I am not sure who first said, “Absence makes the heart grow fonder,” (I did try looking it up…must be the English major in me) but whoever it was, was dead wrong.
Absence makes the heart hurt. Bad.
After learning of Brian’s diagnosis, Matt and I sat down to discuss our options. It had been recommended to us multiple times that we take Brian out of the state for treatment, so I researched the best options.
Children’s Hospital of Philadelphia (CHOP) has an amazing Eosinophilic Esophagitis clinic, and it made the most sense because it is close to family. We talked to our insurance representative and found that “guesting” was the best option for us. This means that Brian and I have to reside here for at least sixty days.
We have an appointment scheduled with CHOP and I asked to be placed on the cancellation list. And now, we wait. While the guesting requires sixty days, after his appointment there may be tests and more appointments, requiring us to be here even longer.
Before I go any farther, I have to give thanks to my extended family. I have cousins who have opened their homes to Brian and me. I know one extra person can disrupt a routine, but also adding a toddler to the mix can be overwhelming. They have been wonderful and have done more to help make the best out of a difficult situation than I probably deserve. I am humbled by their love and support. One cousin has bounced from bed to bed to couch so that Brian and I can have a bed to sleep in each night. On top of that, I am amazed by their willingness to learn more about Brian’s condition and help monitor what he eats and drinks. They have even begun looking at ingredient lists so he is included at dinner.
Even with all the support, my heart still hurts. I miss my husband and baby girl.
Don’t get me wrong, I love the bonding time Brian and I are sharing.
Even more than bonding with me, Brian is LOVING being the center of attention. It has been a while since there was a little one running around here and he is eating up all the time they are spending with him.
But I worry about him not seeing his daddy and sissy.
With modern technology, we are able to FaceTime every day. Usually when Matt or Addi call, Brian is racing around and playing. It is hard to settle him down long enough for a conversation. At most, he runs full force into the phone and gives Matt or Addi a “hug.” It is the cutest thing I have ever seen. Unlike me, he doesn’t seem to realize how long we have been apart.
Brian and I arrived on Sunday, June 14. To me, it seems like we have been gone forever. There are good days and bad days for me, but poor Addi just doesn’t understand. Some days she calls in tears, begging me to come home. Other times she tells people I will be picking her up this weekend and taking her home. She has heard talk of “60 days,” and that number has stuck in her head as a definite. I don’t know how to tell her it may be longer.
She has been staying with my sister and brother-in-law (as long as I live, I will NEVER be able to repay them for everything they are doing), and spends time with Matt on his days off. Matt makes sure to visit with her every day and tries to take her out on special “Daddy/Daughter” dates. Besides that, she fills her days with swim lessons, summer movies, Irish dance, fun visits with other family members and playing with her cousins. I keep hoping she is entertained enough to not notice the days passing by.
I can’t pretend though…some nights I just cry.
I know I am living an impossible situation. This decision allows for the best possible future for Brian, but it means being away from Addi. I want Brian to have a happy, healthy life, but I fall apart a little more inside every time I hear Addi cry.
There is no way for me to win. Whatever decision I make, one child will suffer.
Hopefully, someday Addi will understand why Brian and I are living so far away. Hopefully, she will forgive me for everything I am missing. Hopefully, I will forgive myself.
Until then, I will continue to be grateful to family who have offered beds, food and hugs when I need it most. I send Matt and Addi happy pictures of Brian and me, and count the days until I can hold them in my arms.