I
have read the medical reports time and time again from the early days after Lauren's accident trying to make some sort of
sense over what my daughter has endured over the last several years. The medical
reports are crystal clear, she suffered a closed head injury that was
complicated by brain herniation, frontal lobe contusions, and diffuse SAH
resulting in tetraparesis. Or is it? What does all of that mean? I had to
google tetraparesis. Tetraparesis or tetraplegia is a neurological condition in
which all four limbs are weak (paresis) or paralyzed (plegia). Translation, my
kid was so injured that she was unable to move a muscle. Nurses and doctors had
to pinch her on the fatty part of her arm, next to her armpit, sometimes just
below her knee on the bend of her leg every few hours just to see if she
responded. Brain herniation was another term I googled; Brain herniation is a
potentially deadly side effect of very high pressure within the skull that
occurs when a part of the brain is squeezed across structures within the skull.
Once
I knew she would live, I began my quest for all the information I could find on
Traumatic Brain Injury (TBI) success stories. Who knew they actually have a book
entitled Chicken Soup For The TBI Soul? That book actually made me the most
annoyed of all the other TBI books and articles I have read. Many of the
stories were written by the survivors themselves. I guess I should have been
inspired but instead I found myself rating the extent of their injuries. I
flipped through that book reading story after story and with each one I
thought, “really, you don’t have a severe TBI, you were back at work 3 months
later enjoying life again with a hard time remembering where you left your
keys. Logically I know that isn’t fair to those who have lost so much and
shared their stories. I was on a plane coming back from being with Lauren (when
she was an inpatient in Omaha) when my epiphany hit me. The reason there weren’t
any stories in the Chicken Soup for the TBI soul book that were similar to her
story was because most of the people who had sustained such extreme injuries didn’t
make it. Those that do, remain in a semi vegetative state.
One
thing I have learned is that I am constantly learning. Navigating this primary
Caretaker TBI ship isn’t easy. Sometimes the pressure can really get to me. Am
I doing all the right things? Is she getting the right therapies? Should I ask
about other medications? Is she happy? Was I too crabby this morning? Is it
okay if I am not always patient with her? Am I making enough time for my
husband? Am I too distant with my other kids? Do my other kids know how proud
they make me? Will this ever be easy? Is life really supposed to be easy..for
anyone? Can God hear me? Why do I love cake and not carrots?
I
have made many friends along this journey and met many fabulous doctors,
therapists and nurses. They all seem to be amazed by my daughter and the
progress that she has made. Some even scratch their heads in bewilderment at
the fact that she has accomplished so much despite how severe her injuries
were. We are now at the point of her recovery that she has begun to take an
active role in trying to get better. Things are still hard for her and her
injury has actually made her a little quirky (like her dad). For instance; when
we are going somewhere she will grab my purse and keys and stand by the door
for 10 minutes until I am ready to go. If someone is coming to visit or picking
her up, she will sit on the dining room chair for 20 minutes waiting for them
to show up, if they are late, each minute is agony. On the days that I drop her
off at work with her friend Shae, she always calls me 20 minutes before I am
scheduled to come and get her. For the record, Dave’s quirks are different than
Laurens. He doesn’t grab my purse and keys, when we are leaving the house, he actually has to be the last one out of the
house. Then he has to make himself an ice water and grab some snacks while his
family melts in the hot car waiting for him. If only Dave and Lauren could get
on the same quirk schedule, I could at least grab his keys from Lauren and
start the car.
This
blog post was started because I was bored tonight while googling different
therapies and TBI strategies. I have a few more tricks up my sleeve this year
in regard to trying different types of therapies and brain injury computer
programs. Lauren is normally pretty receptive to all the crazy crap that I come
up with. We have a few Aphasia workbooks that we work on each week and often
she will bring them to me and ask if we can practice. I can’t even imagine how
hard it is for her to function each day. She has recovered enough to realize
what has been lost. Her mental sharpness is on point but her understanding of
language and her ability to talk fluently is still very poor.
My
prayer for her has always been, will she ever have the ability to fall in love,
get married, bring children into the world etc. This summer while on vacation
she had a seizure that caused a bit of a setback. For four days she was unable
to speak any words that made sense and she couldn’t understand anything that
she heard. It was really scary. Life is fragile and how quickly my prayer for
her changed from, will she ever get married to a prayer of, will she ever be
able to understand me or speak again? Thankfully our prayers were answered and
she is back to her old spunky self.
I
will continue to second guess every move I make and wonder what I am missing.
The puzzle is coming together nicely but there are still so many pieces that
are missing. I, like every other mother on the planet have been second guessing
myself every day of my life. That will never change, unfortunately neither will my love for
cake. But for now I will celebrate
the miracle of my daughter’s recovery and try my very hardest to be thankful
for what I have. One of the countless quotes I have pinned on Pinterest (I alternate between Pinterest quotes and
Google TBI searches) is “Recovery is a process.
It takes time. It takes patience. It takes everything you got”
Our
family has changed so much since the date of Lauren’s accident. Sam got married
and now she is having a baby…in that order. Dave and I were super excited
especially since we ourselves messed up the order. Erin is a nurse and is in
the process of looking for a house, not sure why because she has excellent roommates
(us). Shannon is in South Africa working with sick kids in the hospital. She
texted me tonight to tell me that she went zip lining, she pet a cheetah and
was going to go shark cage diving today. Shannon is the kid that brought band
aids with her to the movies when she was little just in case something started
to hurt (thinking she may have been brainwashed in South Africa). Kelsey is
finishing up her summer working as an intern with an awesome company and
getting ready to return to college for her Junior year. Ryan just finished a
week in DC learning about our government and politics and Maggie just got her
permit and is learning how to drive (God help me.)
Despite
all the hard things in life, life is still good and I am eternally grateful
that Lauren survived a bunch of words that I can’t pronounce, and I’m going to
be a grandma! How awesome is that? God is
Good!
