I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Friday, April 3, 2015

Walking Alone to the Nurses Office

First Day of Kindergarten
 
We experienced a common parenting panic attack when we sent our first daughter Maelee to school. We were concerned about all the regular things that parents worry about. Will she be safe? Will she behave for her teacher? Will she make friends? Will she learn all she needs to keep up with the kids in her grade?  
But we also worried about increased germ exposure. Exposure we couldn’t control really at all. Would she start school and then have her first throat culture at the CF clinic after and it contain a dozen new strains of things we needed to treat with new meds? Was she going to get really sick (something that every cough we heard her make while she played during the day or slept at night already brought into our heads anyway)? How would she do with taking her enzymes before she ate snacks and lunch? Would the teacher keep them in her desk and dispense them to her, or would she need to go to the nurse every time? Would she be able to use the restroom when she needed to, often frequently and urgently? Could she reasonably take care of herself without us?
Before she even had her first day of Kindergarten many of these questions were answered. One that as her parents we thought was a huge deal was her having to walk to the nurse every day for snack and for lunch time eating before she could participate in these things. It seemed like it would feel completely isolating. We worried it would be a sad time of day for her, a multiple time a day reminder of how she was different from all the other kids in her class.
We also understood that this was an unavoidable part of her (and any other kid with a daytime med requirement) public education. It would not be safe for her medication to be anywhere but the carefully charted and monitored nurses office. We did all we could to keep a positive attitude about it and check it off as something we needed to help her feel as normal about as we could.   
When school started we began to see Heavenly Father’s hand in this part of Maelee’s life. The women in the nurses office quickly proved to be one of the highlights of Maelee’s day. Cheerful. Kind. Positive women.  The kind of people who anyone would make an effort to stop by and see, only Maelee didn’t have to make an extra effort to see them, she got a specially scheduled time of day where she was guaranteed to. And if for some rare reason she didn’t get in there when she should have, they patiently search her out and help her with her meds. For 3 years there have been a few different faces in the nurses office, one constant, all incredibly awesome.
As her mother I remain to be so grateful to these women who do for her at school what I cannot be there to do, make her feel loved, important, and worth helping. Plus it’s not just my daughter that these women help. Of course every kid eventually ends up at the nurse for all kinds of random reasons, but there is a whole group of kids like my daughter who have daily med routines that cannot be done only at home and require the nurses specialized aid and ability. I have had the chance to see a handful of the other kids with these med routines in the nurses office as I have visited Maelee’s school. The nurses role in their day and the boost of love and care that these women give these kids who need to feel normal when doing things no other classmate is doing is constant.
 So the answer to one of our parenting worries about Maelee making friends at school is “yes” she did! We just didn’t realize that one of her best friends would be the school nurse.
 
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