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.

Saturday, March 14, 2015

Reaching Rena

I was born in March and she died in December of that same year. So I never had a relationship with her on earth. But I am pretty sure that Rena is one of my best friends. I aspire to reach Rena status some day. She adopted my Dad when he was a baby and moved to Arizona. She owned a restaurant with her husband in Safford, Arizona called Brown's Café. When her first husband died very suddenly when my Dad was 16 she raised him alone and continued to run her restaurant. Eventually she remarried to a sweet man named Leo and they moved to Lakeside, Arizona where she was self employed as a seamstress.
 
It was their home in Lakeside that I got to know her. Even though she had been dead for a long time her magic remained in the home. She could make anything. Evidence of her skills were all over the walls of her home. She would sew swimsuits for my older sisters when they were kids, she crocheted intricate doilies, she had incredible taste in color and furniture, and her artwork was unique and one-of-a-kind. 

Rena and her first husband Ralph alongside a mirror from her bedside table and dishes from her kitchen.
My favorite thing to do at her house was carefully go through her sewing machine drawers. My parents would take us up to visit my Grandpa throughout the years and being there in there home is a pivotal memory of my childhood. I have had a chance recently to work on finding more names on her side of my family tree. That is when I saw that her older sister's name was Ruby. I tried to sell my husband on the name "Rena" for a long time, but it didn't fit. When I mentioned the name Ruby though, it sounded good to both of is. I am sure that naming our new baby Ruby after my Grandma Rena's sister will make her just as happy.  Hopefully she also appreciates the fact that I have learned how to do victory rolls to my hair because she inspired that too.
Rena and my Dad fixing a car together.

Rena in Brown's Café in Safford, Arizona
 
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