Lorenzo, who has EOE/EGID and a G-tube, loves to swim!
Surviving a Friend's R-Bombs
by Sharon Berry-Brown
One Saturday night I met up with some old friends and a few new ones. We met at a trendy, hip Hawaiian restaurant and bar, beautifully located right on the water. Sometimes it's nice to be a girl out on the town. Nobody under the age of 12 calling me "mommy." It felt good being with what I affectionately refer to as The Grown & Sexy.
And even though I have a child with different needs, there were still moments that made me as typical a mom as the ones who surrounded me. We enjoyed laughs and traded stories of preteen angst. But inevitably the moment comes when I am again reminded just how different my world is from that of the other moms.
(Read More)
My Anti-Stress Toolkit
by Kristen Davis
The definition of stress is:
Stress is a palpable, uninvited third party in our family system, that permeates the spaces where there used to be quiet, calm, uninterrupted life.
Stress is My Constant Companion: Living with Partial Trisomy 18
by Michelle Seaver
"Mrs. Seaver, the Genetics team really needs to speak with you." I had heard this several times that day while visiting with my daughter in the NICU at Boston Children's Hospital. I knew they wanted to meet with me, but I was waiting for my husband and my father to arrive at the hospital. We were supposed to meet with Renee's team to discuss moving her back to the hospital where she had been born to get her a little stronger before taking her home. I finally relented and told her nurse to arrange the meeting, and I would inform my family about whatever it was they wanted to tell me when they arrived.
by Kristen Davis
The definition of stress is:
A
mentally or emotionally disruptive or upsetting condition occurring in
response to adverse external influences and capable of affecting
physical health, usually characterized by increased heart rate, a rise
in blood pressure, muscular tension, irritability, and depression.
Stress is a palpable, uninvited third party in our family system, that permeates the spaces where there used to be quiet, calm, uninterrupted life.
Stress is My Constant Companion: Living with Partial Trisomy 18
by Michelle Seaver
"Mrs. Seaver, the Genetics team really needs to speak with you." I had heard this several times that day while visiting with my daughter in the NICU at Boston Children's Hospital. I knew they wanted to meet with me, but I was waiting for my husband and my father to arrive at the hospital. We were supposed to meet with Renee's team to discuss moving her back to the hospital where she had been born to get her a little stronger before taking her home. I finally relented and told her nurse to arrange the meeting, and I would inform my family about whatever it was they wanted to tell me when they arrived.
Focus: Stress!
This Stresses Me Out!
If you ask the average Jane on the street about caring for a child with
complex needs, you will probably get an answer something like the
following: "I don't know how you do it. I would be falling apart
emotionally. Dealing with those emotions must be so difficult."
So
is the average Jane right? I asked a whole lot of caregivers of kids
with varying special needs, medical conditions, and disabilities what
stresses them out. While emotions did pop up, they were much less
likely to be mentioned than most other things, like problems with the
medical system, difficulty with insurance, and handling day-to-day care.
Stigmatize Me: Why I'm Now Taking Antidepressants
by C.
How many times have family and friends spoken the words, "Don't forget
to take care of you." Um, can you keep the platitude? Especially when
what would really help would be hands-on help (have you hauled a
wheelchair and walker around lately?) and money (this complex medical
stuff is really expensive).
Four years post-diagnosis for my son, it turn out that maybe the platitude was something to heed. I didn't really think
I had one. But then I watched my fragile-boned sweet boy flip face
first in his wheelchair onto the tennis court. That. Was. It.
Finding Joy in the Midst of the Battle
by Heather Meyer
I have a daily battle with stress and anxiety. Sometimes I win and sometimes it wins. I am the type of person who is more prone to anxiety, and as my daughter's medical issues have become more complex, instead of experiencing occasional anxiety that is easy to control, it has become something that can quickly dominate my life if I am not careful.
I am sure that most everyone has experienced butterflies in the stomach. You notice them, but it's not really a big deal. Over the last few months, the butterflies that were mere flutters in my stomach turned into alligators eating my stomach. My stress levels were getting to a point where they were affecting me physically, and I entered into a vicious cycle of anxiety = stress = physical symptoms = more anxiety. Well, you see where that can lead, and I know I am not the only person who has gotten caught up in this cycle!
by Heather Meyer
I have a daily battle with stress and anxiety. Sometimes I win and sometimes it wins. I am the type of person who is more prone to anxiety, and as my daughter's medical issues have become more complex, instead of experiencing occasional anxiety that is easy to control, it has become something that can quickly dominate my life if I am not careful.
I am sure that most everyone has experienced butterflies in the stomach. You notice them, but it's not really a big deal. Over the last few months, the butterflies that were mere flutters in my stomach turned into alligators eating my stomach. My stress levels were getting to a point where they were affecting me physically, and I entered into a vicious cycle of anxiety = stress = physical symptoms = more anxiety. Well, you see where that can lead, and I know I am not the only person who has gotten caught up in this cycle!
Alleviating Stress
by Elaina Stanford
Having a child with a complex medical condition can be overwhelming and exhausting, even in the best of times. Daily medications, procedures, doctor visits, hospital stays, insurance appeals and lack of sleep. All these things can and do become quite stressful.
I'm sure a lot of you can relate to the feeling of being on the edge, and cautiously awaiting what is next around the bend. Almost five years ago my daughter, Emma, was born extremely prematurely. Little did we know that the end of her nine week, four day, and 28 minute NICU stay would be just the beginning of her medical journey. Each day brought new obstacles, new specialists, new medications, and unfortunately new stressors.
PTSD in Children with Special Needs and Their Caregivers
by Michelle Doty
Shortly after my daughter Campbell’s first medical emergency, I noticed
that I was much more agitated, anxious and always on alert. This caused
me to suffer from insomnia, panic attacks and depression. I began
talking with other parents and did my own research, finding I was not
alone.
As I was researching how parents and children coped with multiple hospitalizations, I kept coming back to information on Post Traumatic Stress Disorder (PTSD). Could I have this? Could Campbell have this?
As I was researching how parents and children coped with multiple hospitalizations, I kept coming back to information on Post Traumatic Stress Disorder (PTSD). Could I have this? Could Campbell have this?
Specialty Article
Autonomic Dysreflexia
by Darshani Sukumaran
Autonomic Dysreflexia (AD) is a condition found in individuals with spinal cord injuries, characterized by suddenly unstable vital signs. It can be very frightening for both the person experiencing it and his or her caregivers, and is considered a medical emergency. If you are caring for someone who has a spinal cord injury at or below T6, it is important to know the signs and how to reverse this condition.
Feature Article
by Kelly De Angelis
Marital bliss and raising a child who is medically complex with a
disability often seems oxymoronic! Or maybe more like a seesaw ride, up
one minute and down the next. Your entire life is turned upside down
when you realize you are raising a child with special needs, and that
includes your marriage. All of a sudden, the balance is thrown off, and
sometimes it feels as if only one of you is trying to ride the seesaw.
In reality, you are both trying to ride, but you're just not on the
same seesaw.