Eighteen years ago, I was counting
down the days to May 24th. This was our upcoming wedding day. I know
at some point I would become a mother as I wanted children. I loved children
and had always worked with children in some way. What I did not know then is
that by this point in my life that four of the children would be medical needs
children, or that I would deal with a body wearing our earlier than normal as
well. What I did know is that I would become a mother and do the best I could.
What have I learned from my
experiences as a medical needs mother? Well, like any other mother we get
excited, make plans for our kids, learn to adjust, and keep plugging on through
a lack of sleep and total exhaustion.
Emily Kingsley’s poem Welcome to Holland is commonly used
within the special/medical needs communities as parents try to help others “walk
in their shoes” as one could say. Sometimes we expect and welcome in a child
that is not born perfect. Other times we do not expects, but still welcome that
child. Then sometimes, these children are neither expected nor welcomed.
This poem relates life as if one is
preparing for and taking a trip. As a medical needs family, with each
additional child, we have had to adapt in a new way. Yes, this is kind of like
learning another language for the next flight. The things my children have
taught me, I could not have learned without them.
Our
oldest was early in all her milestones. I had the joy of watching her grow and
develop. Our second child needed lots of help and intervention to become the
amazing child she is today, yet is as brilliant as her older sister. Even if
she prefers to hide this brilliance. Child number three continues to battle
against his body with is platelets. Then we add mischievous personality child
four into the mix and he keeps us on our toes. Bringing child five near the
end, even as a baby, he has always been our Mr. Attitude, and making sure
everyone gets what they need to accomplish their goals and tasks. Finally, but
not least we have child six. This little one sure loves keeping everyone on
their toes. She lights up the room with her smiles and makes sure everyone
around her is smiling.
Our
first child Celidah, was a very energetic little red headed bundle of joy. Not
only was she very energetic but brilliant and met all her milestones early. She
was brilliant enough that we had friends telling us we needed to give a head
start and teach her as an infant through “special” flashcards that would have
her reading and doing complex math by the time she was eighteen months. After
watching how the learning style worked and the time involved, we decided this
was not right for us.
Instead, I created cut out alphabet
letters, laminated them, and placed them where she had access to see them
daily. She had access to blocks, magnets, and many other learning toys to
encourage her creative side and academic as she was ready. This process worked
for her as she was asking for help learning to read just before her 3rd
birthday and sounding out simple words. Not long after, she took off and
developed a love for reading which she still has today. Would she have the same
love for school and reading with the flashcard method? Maybe? Yet, that was not
my style.
Our next child Jade, was my first
real challenge. She was totally the opposite of her sister. She met all her
milestones late. Many were very delayed. In time I would learn to accept that
each child will be different and sometimes very different. These milestones
were delayed enough that intense early intervention would be required to help
her out. We would learn that this child too was brilliant, she just needed help
finding a way to understand her potential and learning style. Later, we learned
that she was autistic and would need more intensive therapies than she had been
receiving up to that point.
Like her sister, she too had access
to the same educational toys and creative tools. She needed help communicating
her needs, wants, and desires. To begin with lots of pictures were used within
the house to show what was needed and expected. In time, we realized that the
household rules needed to be adjusted. Why? I realized we had to have only one
set of rules. I did not want one rule for my oldest daughter “you have to the
good girl because nothing is wrong with you” and another for my younger
daughter that told her, “you are disabled and have a lower standard to meet.”
Instead, we re-aligned the rules for the kids that would allow all to follow.
Other than food allergies our third
was fine until November 2007, when his body decided it was time to go haywire
and attack his platelets. At first we were told to take him home and keep an
eye on him because a spontaneous drop in platelets like he had would rise like
it did in 99% of children facing the same thing. Two weeks later at a follow
up, his platelets still had not gone up any, he was still sitting at 1,000. The
normal is 400,000-500,000. With no rise, he was put on prednisone (steroids)
and a referred to the hematologist. Again no rise, steroid level increased,
appointment bumped up, IVIg treatments started. To date our son Corbyn, has had
hundreds, of IV’s, and blood work pokes, IVIg infusions, many meds he did not
respond to. Yet he keeps plugging on.
Our fourth son Jairon, joined our
family with spunky and mischievous personality. He truly took after his Poppy
with this, looks and personality wise. They are totally two peas in a pod. This
munchkin was active but healthy (only had asthma). Most important to Jairon was
to be involved in whatever his brothers and sisters were up to. He also loves
making those around him smile.
Next came child five. When
preparing for Zach we were not prepared for anything. We knew the pregnancy was
high risk and there was a potential for problems, and the delivery did not go
as planned. The delivery was filled with many complications, but things seemed
to be okay after birth. This proved to not be the case. His lungs were born
without the surfactant needed to lubricate his lungs. Without the lubrication,
every time he exhaled, his lungs became stuck a bit more than before. In
addition to that, the hospital he was born at, did not make the call to
transport him for 36 hours. Due to this, the timeline for injecting the artificial
surfactant into his lungs was borderline. Would this process work when he
arrived to the NICU?
Later he was discovered to have a congenital
heart disorder, a VSD. We did not know if his heart would require open heart
surgery or not. He also was spitting up really bad and burning to many calories.
This too would require a surgery. At that point they decided to put off the
heart surgery to see if his heart would heal on its own, do a nisson fundoplication,
and place a feeding tube for easier feeding and increased calories. During this
surgery they discovered he had a hernia that needed repaired ASAP, so that was
scheduled for the week after his feeding tube post op appointment. Right after
that surgery he went right back into the OR for tubes in his ears because he
kept getting really bad ear infections.
Somewhere around this time we
realized his heart was healing despite the recurring surgeries. The next
surgery he would have would be to remove a quarter he had swallowed. Due to his
nissen, the quarter had to be removed because it could not pass through the
esophagus. His next big surgery was to have a hemangioma removed that was
attached to the main artery leading into his heart.
Due to his “many” surgeries,
feeding pump, and “tons” of medical supplies, we had decided that if we would
have another child, we were going to wait until all of Zach’s medical supplies
were gone and out of the house. This was far from the Lord’s plan for us.
Right after delivering Zach, I was
given a blessing. This blessing let me know that my family was not complete and
the Lord would let me know our family would be complete. I think most hearing
this in a blessing would be comforted. Me, I was not. At that point in my life
I was terrified. Before Zach I had lost a baby, and the delivery was filled
with complications. Zach’s pregnancy and labor was filled with complications. Not
to mention at that point I was not even sure I wanted anymore, but had been
haunted in the past by conceiving through birth control.
The day I found I was pregnant with
our sixth child was a bad day. I was very sick with pneumonia and the meds to
treat it best would terminate a pregnancy, could not be given if the test came
back positive. Yeah, my test was positive. The kids were their gymnastics
class, my husband in the field, and a very good friend with me (thank
goodness). In the end this pregnancy was complicated, but not the worst. Labor
was much easier than Zach’s.
Again like with Zach, everything
looked great right after birth. Within a few minutes it was clear this was not
going to be the case. At first Ellie was taken to the NICU to be placed on
oxygen, an antibiotic, and watched. Within the first hour she started to take
her first downhill turn. Before long she needed to be intubated, then suddenly
she was on full life support. The next thing I knew they were talking taking
her off the ventilator and putting her on ECMO to help her lungs because she
had such fragile lungs.
There were tubes, wires, alarms, IV’s,
pumps, all over her. However, eventually she came home, and added to Zach’s
medical supplies. He had a feeding pump. She brought a feeding pump too. She
also had a pulse-ox, apnea monitor, and oxygen. These had to run 24/7.
Eventually we slowly removed machines here and there until she is now currently
down to 2 feeding pumps and her GJ feeding tube.
