I Have A Life

I am a late follower to the podcast, “Serial”(https://serialpodcast.org/season-one) and while listening to the first season I heard a great quote, “I have a life.  It may not be the life I envisioned for myself but it is a life”.  

For those of you who have never listened to this podcast, the quote was said by the main character in the first season’s crime, Adnan Syed.  He was convicted by a jury of his peers in the death of his former girlfriend.  

Adnan was arrested at the age of 17 and has never left the correctional system since that fateful day in 1999.  He turned 18 while incarcerated and has spent his entire adult life in a prison; only leaving to attend court.  The podcast chronicles the crime and the conviction of Sayed while trying to determine if he if was mistakenly convicted.  Sayed has claimed innocence from the beginning of the story.

Here is someone who is serving a life term in prison with all of his freedoms stripped away and yet he claims that he does have a life.  He has embraced his religion, taken his imprisonment seriously, and tried to be a role model for other prisoners.  If he can attest to the life he has made for himself then I must learn to accept the life I have been handed.

Too many times, I get frustrated by the uncertainties being the mom to a special needs child.  It is difficult at this time of year to be on facebook looking at all her peers getting excited to graduate high school and getting all kinds of accolades including multiple college acceptances.  I am happy for all these kids but I can’t help feeling envious.  We never knew what her potential was since it was stolen from us that fateful day.  

lifetitleI remind myself quite frankly that she is alive, healthy, and striving.  It may not be the life I envisioned for her or for myself 18 years ago when she was born a healthy baby but we have made the best of what we were handed.  We will continue to strive forward and reach whatever goals we can and live a great life.  

Thank you, Sayed, for reminding me what life is really all about.

 

Advertisements

A LITTLE POSITVITY CAN GO A LONG WAY

500_f_66251322_xsgw73bmx0qkw6prt205dcuhuma7ks88Our society is drowning in negativity.  Everything we hear in the news is filled with despair, sickness, fear, and so forth.  No wonder so many of us walk around day in and day out feeling like we have a big black cloud hovering over us.  Couple that with the weather we have been having on the east coast and it is no wonder that we feel so blah!!

My children have all, at times, come home to me pouring out the horrible moments of their day.  As a school counselor once told me about Middle Miss, “she walks around school with this bright cheery smile on her face and will never let any school employee know how she truly feels.  But once she steps off that school bus and sees her Mom all the despair of the day comes tumbling out as she can no longer contain it.”  When I heard this 9 years ago I finally felt validated.  I had been telling the school how miserable she was but they didn’t believe me since she never showed any signs of distress while she was there.

It got so bad that I would have to mentally prepare myself for her arrival so that I did not drown in all her negativity.  It still happens at times and I try to get her refocused.  Yesterday, I realized that I need to institute “positives” in our family.  Little Miss has been coming home for the past few weeks telling me how awful her day has been.  I knew the last 2 months of school would be challenging for her since her teacher, who she adores, is on maternity leave but I didn’t think it would be this bad.  She is having a hard time at since the class is misbehaving more due to a substitute teacher, the environment is loud and the routine is different.  She, like my other two and my husband, likes routine and consistency.  When the routine is off for more that a day or two her balance is shaken.

When Big Miss and Middle Miss were younger we instituted a “game” at the dinner table where we all had to say the worst thing that happened during the day and then follow it with the best thing that happened.  What a difference it made!  We all had an opportunity to blow off steam a bit but then immediately follow it with a positive which helped all of us end on a happy note.  Somewhere along the way we stopped doing this but yesterday I decided we have to to reinstate this “game”.

I don’t know about other parents but I get hung up in my children’s moods.  If they are happy it makes me happy but if they are sad or upset I can also take on their feelings which does not help me at all and I am sure it doesn’t help them either.  I am learning that when I am sad I need to stay with the feeling and let it run it’s course so I can then move forward.  My old way was to stifle it and bury it with a project but it kept resurfacing again and again.  I am now trying to feel it so I can move forward and be done with it.

I will let you know how this works for our family and if you try this let me know how it goes for you.

 

 

Silver Linings

Sometimes while in the throes of trauma we don’t have the ability to notice the silver linings in the clouds. I learned this in the aftermath of our accident; the realization that we had so many wonderful people who came out in support of our family.  We received cards from friends and families, pictures from children we knew as well as children who heard our story and wanted to do something.  Soon Middle Miss’s hospital room was decorated in vibrant colors and images.  While in a coma the doctors recommended that we play soft music that Middle Miss enjoyed listening to as a way to reach her and hopefully stimulate her brain.   A truly wonderful friend found a CD that included songs with her name in it. What a truly wonderful gift.

Former neighbors came by and dropped off bags full of snacks for both Mike and I because they knew from experience when a child is in the hospital parents do not want to leave to get something to eat in fear that something will happen when they are not “on watch”.  Home cooked meals were delivered to our home for Big Miss and her Grandmother who was helping out and to the hospital for us so we didn’t forget to take care of ourselves.  Friends and neighbors were offering to help take care of Big Miss so her routine could be as close to normal as possible.  They understood that a 5 year old still needs a steady routine no matter what.

Our advocacy for Middle Miss began on day one in the hospital.  Prior to this, I was not very assertive.  I wasn’t a pushover but I didn’t always speak up when I should.  Well, having your child in a coma will definitely bring all that out.  Mike and I started advocating for her immediately.  We questioned the doctors, demanded answers when our questions were ignored, fought her transfer to another unit until she was off the ventilator, demanded second opinions, and the list goes on and on.  Through this I learned how to become an advocate and little did I know that I would become such a huge advocate for her and others suffering from brain injury.  Prior to our accident we didn’t know anything about brain injury and became quick studies to ensure she received the help she needed and deserved.

During the 10 long days Middle Miss was in the hospital and prior to entering inpatient rehabilitation so many people approached and told me how strong I was.  I thanked them but thought deep down that I had them fooled.  I later realized how accurate they were. Friends and strangers saw something in me that I was unable to recognize.  I don’t know if I would have ever known my strength had I never been through a crisis like this.

Along with learning to advocate, I became a public speaker which shocks me to this day.  I never enjoyed speaking up in class and anytime we had a project that included a presentation I would rush through it just to get out of the spotlight.  The first time I was asked to tell my story I jumped at the chance.  I was nervous but confident in the information I had to pass on and each time I told the story it got easier and easier. There are times that I broke down, and it continues to happen today 14 years later, but I know my story is powerful and use it as a tool.  I am educating my audience about brain injury, the long term effects for both the injured and her family, the special education system, and many other aspects of this ordeal.

Marriages can be very fragile or they can be as tough as nails. Luckily, we were able to see that our marriage was tough and became stronger because of this as we worked as a team to get Middle Miss the proper care and help.  She made incredible progress once we entered the rehabilitation center and those around us thought it was due to the strong family unit we had.  Eventhough we chose to go to one that was in another state and further from our home we made sure that one of us was with her at all times.  We never left her side and continually pushed all the therapists and doctors to give her as much treatment as physically possible.  My heart breaks for all the children who don’t have this support.

I don’t talk about my religious beliefs or spirituality very much but during this time I also learned about the power of prayer and forgiveness.  A great number of people mentioned that we were in their prayers or their religious institution had put us in their prayer circle. For many years afterwards I would meet someone and once they heard our story they would confide that they prayed for us.  How awesome is that?

A few years after our accident I was sitting in church listening to a sermon about when all of a sudden I felt this rush of forgiveness for the man who caused the accident.  It was the most liberating feeling.   I was still sad.  I was still angry.  But I no longer felt revenge and the forgiveness allowed me to move on and be the best mom, wife and woman I could be.

Of course, I wish this tragic event never happened but I can’t take it away.  Instead I choose to move forward and help others navigate through their own stories.

 

 

 

Grief

I have been talking and thinking a lot about grief the past few months.  It seems that wherever I turn I run straight into it.  The grief that I am speaking of is not the loss of life but instead the loss of the life I expected.

We all deal with disappointments that sometimes brings us to our knees but we get up brush it off and move forward to bigger and better things.  Afterall isn’t the saying, “quitters never win and winners never quit” ingrained in all of us?

This isn’t what I’m talking about.  I am referring to the loss of potential and a future.  When Middle Miss was 3 years and 3 months old we were involved in a horrific car accident.  She was code blue at the scene, survived and has a severe Traumatic Brain Injury (TBI).  The past 14 years have been full of challenges getting her the services she needs and deserves while also being thankful for her recovery.  I have been in constant survival mode trying to make sure she receives every bit of rehabilitation she needs as well as making sure Big Miss didn’t feel left out and receives the attention she deserves and needs.  Add on, Little Miss born seven years following our accident.

All through this we didn’t have a crystal ball that told us what the future held.  We hoped for the best and moved on to the next phase of recovery.  Now we are entering a new phase.  She is 6 months away from turning 18 and a year plus from graduating high school.  Usually at this point in a child’s life the parents have a clear role of what the future holds.  Of course, nothing is guaranteed, but we still have so many unknowns.   What does the future hold for her?

This is the grief I have been feeling for the past two years.  The grief of lost potential since we never knew what she was capable of being so young at the time of the accident. The grief that once she reaches a certain age I can start focusing on me and what I need. The grief that she may never achieve full independence.  The grief that if she isn’t fully independent who will help her when we are gone.

Hope and resilience have been my mantras and my stabilizing forces.  I, mostly, remain grateful for all that we have learned during this period but some days the grief is so strong I feel like I am drowning.

I look forward to continuing this blog and telling you our story of hope and resilience.