When I Just Want to be Normal

WEGO Health's National Health Blog Post Month has gotten me thinking about and writing about things that I haven't give much time to in the past.  Today our assignment is to write about how, when, and what we reveal about the chronic illness that we, or our loved one, suffers from.

Fortunately, I was in a wonderful job as a dental office manager when I gave birth to Evie.  I'm so thankful that the leaders of the dental group knew me, knew my work ethic, and knew my heart; otherwise I don't think it would have been quite as easy to "believe" that I needed as much time off after returning from maternity leave as I did.  Evie's first year of life was filled with eye exams under anesthesia, ultra-sounds, and eye surgeries.  We were blessed with an amazing daycare provider who would allow me to bring Evie back after she had received her post-surgical check-ups; and she would fearlessly deliver the 12 + eye drops required for Evie's full recovery. 

Also, I was blessed to work with doctors who put family first.  There was a day that I had a complete mental breakdown and had to call in to work and say, "I just can't stop crying!  I don't know what to do."  I was told to stay home, rest, and allow myself some time while Evie was at daycare and I could just take care of myself.  The next day I went in to work and one of the doctors, Brad, pulled me into a meeting room and we talked about what had happened the day before.  I told him I started panicking about what our future would be.  Would Evie have autism, would she have cancer, would she have behavior issues; what was our life going to look like and how horrible of a mother was I to look at other children and to think, "Would Evie be able to do THAT if she didn't have WAGR?"

Brad then explained to me that what I was experiencing was normal.  I could actually benefit from treating myself as a person "recovering" from a traumatic experience.  He told me that I needed to recognize something; no matter how much I worried about it, I couldn't control what would happen tomorrow, let alone 5 or 10 years down the road.  Brad recommended I get the daily affirmations from Hazelden so I could remember to stay focused on "today."  The co-workers I had, that God put in my life, were no coincidence.  He surrounded me with just the right people to get me through.

Family Medical Leave Act (FMLA), the law that enables a person to take a set period of time off for a health condition without jeopardizing their job, helped cover my maternity leave.  It takes a year of working for your FMLA to renew.  It was no coincidence, I believe it was a God-incidence, that my FMLA renewed on September 14th of 2005 and Evie was diagnosed with cancer on September 22nd, just days later.  I had the law to protect me, but God to orchestrate it all.  In order to maintain our financial solvency, I had to work while Evie underwent chemo.  I worked Mondays through Wednesdays, 10 hours a day to maintain our health insurance.  My mother in law took off from her job those days so we didn't need to expose Evie to all the germs at daycare.  (Another blessing, another miracle, was that our daycare provider held Evie's spot at daycare even though we couldn't pay her for those 18 weeks.  That is a TRUE sign of God's provision.  Thank you, Doni...you will never know how much you mean to our family.)

Thursday was chemo day, and I'd take Evie to the appointments, and Friday was "the day after."  They were never easy days, and often we would end up back at the clinic because she would spike a fever and need antibiotics to treat pneumonia developing in her lungs. 

Back to the topic at hand though!  I'm so glad I didn't have to "explain" all of this to a new employer.  I think it would have been overwhelming to say the least.  So, for Evie's first 6 years of life, I never worked for anyone but those initial doctors who were with me when Evie was born.  They had faith in me, faith in God and were always so supportive of our family. 

Once Evie started getting "up there" in grades at school, it became evident that she would need more help with homework, as well as more support from her "mommy" who would observe things and try to make them right for her (like if the homework was too overwhelming).  I never really had time to take her to all the appointments she SHOULD have had either while I was working full time!  So, we ended up only do the "MUST-HAVES" like oncology, ophthalmology, and nephrology.  I left my job at the dental office and started to stay home with Evie a few summers ago.  This took some hardcore budgeting, but it was well worth it.  I started to go through all of the "recommendations" for Evie's health.  We were supposed to get her orthotics to help her walk, speech to help with her speech apraxia, and neuro-psych to help with her anxiety.  All of this was too much to handle with my full time job.  I signed on to be a substitute teacher and paraprofessional in our local school district and that became a dream come true. 

The people in the school district knew me and knew Evie.  Again, I didn't have to explain a thing!  AND, what's more, I didn't have to ask for time off as a sub, which always felt mentally draining as a manager.  To me, asking for time off was like saying, "I can't handle my job and these appointments too.  I can't fulfill both roles in my life."  For many years, Jeff took Evie to many of her appointments because at his job there was comp-time he could build up and use.  But I felt out of the loop and like an inadequate mother when I would miss all that time with Evie and her doctors. 

Who wouldn't love more time with this girl?

I'm now a permanent part-timer at the high school in town.  Evie and I are able to walk home from school together (which has diminished her behavioral issues after school that she used to have.)  The time that I have now with Evie has shown me that I CAN be a good mother to her.  I think I struggled for years feeling that I really had no relationship with her~I would be at work before she would even wake up, and would get home in time to feed her and bathe her and get her into bed.  That was no way for me, or for my family to live.  I'm glad I toughed it out at my full time job as long as I did, because I will never take this time I have with her now for granted.  I made a deal with God that if I got lazy and started to just take naps in the morning, or not use the free time for volunteering and giving back, that he could send me back to a full time job like I used to have.   Let me tell just say, I am a staying busy, but it's what works for me and for my family now. 

So, I guess it's clear to see that I haven't really felt the need to explain much to my employers.  I often feel I talk about Evie and WAGR (www.wagr.org)too much, because I think it often connects me to others.  I may meet someone who is blind, or has cancer, or is the parent of a child with sensory issues...I start talking about Evie, because it's common ground, it's a way to feel a sense of community, togetherness, unity.  I have mission to reach out to the hurting and connect with them, so how can I hold back when I know that Evie has taught us so much, and we have so much to offer others.  Educating others on rare diseases is a way to create a more universal understanding of "pain" and "recovery" from it.  Hopefully others can see it that way too, and not feel the need to hide their conditions.