Life with a medically
fragile newborn and four children at home:
When
our daughter Myra was born under traumatic circumstances, my husband and I had
four other children under the age of five at home. We had generous family to help watch them for
the first week as I recovered from my C-section, but after about 10 days
everyone else’s life had to go on, so we were left to manage our five children
between the two of us. Because of my
attachment parenting style, I never wanted to leave my daughter’s side. And I didn’t for the first week. My children came to the hospital to visit Myra
and me. Then, the H1N1 virus caused the
hospital to not allow children under the age of 18 in the hospital at all, and
we had to come up with a new plan. I had
a very needy newborn in the hospital that wasn’t promised to make it through
her difficult circumstances, and four very needy children at home that didn’t
understand why their Mommy wasn’t around and why their baby sister was hooked
up to all these machines and not snuggled in their arms at home.
We created a schedule that allowed both of us
to visit Myra and spend time with our other kids, trying to make life as normal
as possible. And thankfully my husband
was able to take off work all 30 days she was in the hospital. I would stay the night at the hospital and
come home early in the morning. My
husband and I would switch and he would visit Myra for about two hours while I
visited with the other four kids. Mid-morning
we would switch again and I would spend the day at the hospital. At dinner time I would go home and eat with
my family, all six of us together at the table.
After dinner my husband would visit Myra for another few hours, and in
the evening we would switch again and I would stay the night. My kids always had a parent home and knew we
would all be together every evening.
They seemed to do great through the whole process. We had an amazing church family that provided
meals for us for many nights that made our life a little easier.
In
these 30 days we read books to our kids about sick siblings, discussed Myra’s
condition and prayed with them. A friend
put together a brag book of photos of Myra and we looked at them often with our
kids. We explained all the tubes and
wires and how they helped her get better.
When they visited her the first time at two days old I think they still
were shocked, as anyone would be, but they were able to see through all the
‘stuff’ and smile and love on their baby sister. We put the pulse oximeter on them and let
them touch her and ask more questions. And
I’ll never forget their faces when they saw Myra again the day she came home,
weeks since the last time they had seen her.
There have never been four more proud siblings in the whole world!
Mommy and Myra bonding
Kangaroo Care
Day 2, swollen
MommyK and Mr. Prince
Day 14, surgery for g-tube and Nissen Fundoplication
We both cried on and off for 15 hours while did a poor job of managing her pain
Day 11, First Family Photo
Day 30, Homecoming!
Princess Pea (5), Angelica Pickles (3), Sid the Science Kid (6)
Boo Boo (18 months)
Angelica Pickles (3)
Princess Pea (5)
Adapting to being a parent
of a child with special needs:
Perfect. That’s what we all want as we rush to the
hospital in joyous expectancy of our newborn.
I had experienced four of these types of births. I couldn’t wait to delivery our fifth. But, our daughter Myra was born via C-section
after broken waters, with significant amounts of meconium, and when her heart
rate rapidly declined during early labor.
Myra suffered ‘severe global brain damage’ from lack of oxygen. The doctors painted a grave picture while we
were in the hospital with scary words like ‘cerebral palsy’, ‘mental
retardation’ and ‘developmental delays’.
As any parent, I just wanted the best for my child and the expectancy of
having a ‘healthy’ or ‘perfect’ baby seemed to be buried in the sand somewhere.
We clung to our faith, praying that God
would do a miracle in Myra’s life. We
had a difficult 30 days in the hospital and brought home a tiny little newborn
with only questions for her future. She
had many doctor appointments in the first few months, sometimes as many as 12
in one week. I had five children ages
five and under that I dragged around with me to every one. She seemed to be developing ‘normally’ for
the first weeks and we thought all would be well.
Then, I
started to questions whether she was hearing okay. And she didn’t seem to look at me like my
other babies did. It was hard to change
her diaper because she wasn’t as limber as my other children. And at a few months old, she still wasn’t
trying to play with toys or hold up her head.
All those words the doctors had mentioned started to repeat in my
head. I think my heart broke over and
over in that first year as the milestone charts were thrown away and we realized
that raising this child would not be like our other four children.
Our first
year was filled with therapies multiple times a week, numerous doctor
appointments, hospital stays due to seizures, disorders that required me to
give her shots for 4 months and other medical emergencies no child should ever
have to endure. Through it all, we were
able to snuggle with our little girl and watch our other children love on her,
and were so thankful she had made it through those first 30 days. It was hard with so many sleepless nights and
trying not to worry constantly, but we persevered and started a ‘new normal’
for our family.
Over
the next few years the diagnoses came.
Many of those scary words the doctors had mentioned after she was born,
but not all. ‘Microcephaly’ (small
head), ‘epilepsy’, ‘cortical visual impairment’, ‘hearing impairment’, ‘developmental
delay’, ‘oral feeding dysfunction’ …the labels stacked up. The kicker: ‘Cerebral palsy’. I eventually came to accept this as a
diagnosis of her body, not a diagnosis of her being. This is just a description of how her brain is
communicating with her muscles, it’s not who she is. What gives a child real quality of life
amongst all these labels? I’m still
learning the answer to this question, but I’m on a path to find out.
At
around 20 months our therapist suggested we get a wheelchair since Myra was
growing out of our stroller and high chair.
I felt like if I ordered it, I was giving up on her. It took me a number of months before I
realized that this was just a tool.
Something to help her right now in her current circumstances, but didn’t
define her future abilities. This
pattern repeated as we added hearing aids, hand splints, adaptive stroller,
Ankle Foot Orthodics, a stander and a gait trainer to her list of assistive devices and
‘tools’.
No
matter what, Myra will always be our miracle.
God has proven his love to us over and over and we have seen so many
miracles as Myra has defied her circumstances and done much more than the
doctors ever thought she could. And they
need to keep watching, because I know there are more miracles coming!
Having
a child with special needs isn’t a cake walk.
But, it is the greatest adventure as you learn the true value of a
person, learn that service is more rewarding than receiving and learn that life
is more than milestones, achievement tests and labels. And the byproduct of having four other
children watch Myra grow is amazingly compassionate children, un-phased by
physical or mental disabilities.
Children who see value and potential in all persons. And I personally have a new definition for
life, happiness, contentment and unconditional love. I can look back and see how positive this experience
has been for not only our family, but friends and acquaintances, and I know
Myra’s complete story is not yet written.
So, we continue to press on…proud of our daughter and all the more
better because of her existence, exactly as she is.
Perfect.
Therapy
Seizures :(
Sisters
Cuddly
Daddy time
Sisters playing
Stander
Bike at therapy
Cousins
Gait Trainer with Ankle Foot Orthodics
Unconditional Love
Sibling Fun
Therapy Cat, Oreo and Miracle
Joyful!
No comments:
Post a Comment