November is National Caregiver's Month, and as Rosalynn Carter so aptly stated; “There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” Let us take a moment to remember, honor, and thank the caregivers who faithfully give of themselves each and every day.
Several caregivers have sent beautiful entries of their experiences. I want to thank them so much. I hope to hear from more of you.
The first posting is from Wendi, who is a young wife, mother, nurse, and friend who tirelessly gives to her family day after day. Often, caregiving is only thought of as providing for an elderly person’s needs. Wendi is a member of a very large and incredible group of parents who care for a child with special needs.
Hi all, I am a mom of two children, one who is 2 years old named Abby and one who is five years old named Emma. When Emma was born, we brought her home, thinking we brought home a normal healthy child. Seven days after she was born, I received a phone call at 9:00pm from Emma's pediatrician that changed our lives...being a nurse myself, I knew that this could not be good for a physician to be calling that late in the day. We then found out that night that Emma was to go to Children's Hospital to be tested for Cystic Fibrosis because she screened positive for it during newborn testing. Cystic Fibrosis is the most common genetic fatal illness in children. Scares us so much. My husband ran up and grabbed Emma out of the crib where she laid and began to hold her and cry his eyes out, and me, I began to scream and pull out all my nursing books about everything I could find about CF. Once I started reading, I realized mine and my husband's lives would be changed forever. Cystic FIbrosis requires an everyday rigorous medical regimen for the child and the caretaker (me), you basically fight Cystic Fibrosis from taking a toll on the health of your child everyday and strive to keep her well. The medical regimen increases in intensity as the child gets older because unfortunately the median age right now is 37 years old, however 50% don't reach their 18th birthday and symptoms and the disease worsens as time goes on. We are very hopeful for Emma, through research and fighting this illness, we feel that CF will be cured or at least managed to the point of Athsma. (we hope!) As a caregiver, I've sure had some ups and downs. At first, I walked around like a zombie, when Emma was first diagnosed, felt like I was dreaming a horrible dream when this first happened. Then, yes, I got into fundraising for Cystic Fibrosis research...hoping to gain control over how I was feeling or control over anything at that time. It was hard, a baby can't tell you what is wrong, especially scary when it's your first child, because I remember thinking, "I don't even know how to care for a baby, let alone a baby with Cystic Fibrosis." I wish I could tell you some "Glory story" about how GREAT I handled it emotionally and mentally but I don't have that story just yet, and it's been 5 years now. It is challenging everyday, especially since having our second daughter who is a pistol with a capital "P" :)...and in the terrible two's...She does not have CF, but is in constant competition with her sister about who can get more attention even if she has to do it in a "bad" way. Abby (no cf) sees how much "attention" sissy (Emma with cf) gets and gets a little jealous. Right now our current situation is, I was unemployed due to my unavailability to my company, (prior to Emma, I was always available and worked my butt off for the company) but after having her, my time became very limited and I just couldn't maintain a job...I was laid off right after my maternity leave with Abby...I worked for them for about 8 years and then one day, BAM...YOU'RE LET GO??? Grrr...makes you mad when you were trying to do the BEST you could do, while having a very "sick" little girl at home. Currently Emma is on 45 pills/ day, 2 different routine antibiotics, 6-7 breathing treatments/day, 3 rounds of 30 minute chest PT/day as well as some other miscellaneous drugs. With her being on this regimen, I have felt that people have chose to leave us, so they did not have to help...easier to play the blame game, then step up to the plate for us, I guess. Emma does not get home health at all...no other care but mine and my husbands.
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