My Children

I loved being a stay at home mom!  It wasn't always easy but I got to hear the first laugh and first words of all my children. We played games and had indoor picnics in the den on rainy days. We spread blankets in the grass to watch the clouds roll by and figure out the shapes. We read lots and lots of books. We watched movies. We danced around the house to any music that struck our fancy. Dallas was great at interpretive dance. We played chase in the long hallway with the dogs. We built blanket forts in the play room. We sang songs, all the time, and we prayed together.

Showing them love and kindness came easy. Teaching them to appreciate the small and everyday things we usually take for granted was a joy. Letting them know they matter to me and our family, that they are each an important part happened in our conversations, prayers and hugs; at least I hope they understood.  I always thought setting a good example, spending time and listening to them were some of the ways to show my kids I love them. I love my children and told them so every day I still do.

As my children grew older and began forming their own ideas of the world, the challenge grew too.  The questions and answers became more complicated. I did however try to shield them  from some of the harder issues of life when they were still very young, like just how advanced Madison's condition was.  Mark and I knew pretty early that she had a more severe case of Marfan syndrome. We also thought that if we followed what the doctors said and educated ourselves, Madison would live much longer than she did.  The National Marfan Foundation while being a great source of information also lead me to think that she could live a close to normal life and span.  Mark and I thought we were doing everything right.  She had made all of her doctor appointments and took all of her medicine as directed and no strenuous exercise. We took care of her as best we knew how.

At some point in high school Derric knew Madison's case was severe.  We talked about Marfan syndrome in front of the kids and with the kids, but kept the most detailed conversations away from them. We also answered all their questions in ways that wouldn't scare them. The last two times she was in the hospital, December 2008 and March 2009, I began to more seriously focus on letting Dallas know that her sister was quite sick and fragile.  I thought she understood and maybe she did for a little while but there were times when I believe she forgot or wasn't sure what to make of what I was telling her.  It's hard to hear at the age of twelve that your sister is very sick and almost died.  It's a difficult concept to grasp about someone you love at any age.

When we suddenly lost her October 9, 2009, even though we knew she was fragile it was a complete shock. We still believed if we just kept doing everything the doctors said to do Madison would be okay. I guess we got our kids to think that way too, because when it all went wrong Derric and Dallas stopped believing in amost everything they used to and for a while I did too. I was mad at God for not answering my prayers. I wondered what I had done so wrong that my child suffered for so long without physical healing. Before we lost Madison I prayed all the time for her healing and gave thanks. Many weeks after she died I realized that sometimes the answer is “no.” My prayer had been answered, I just didn't get the answer I wanted.

I tried to continue going through the motions of daily life and going to church.  I even forced Dallas to come with me.  I thought if I just kept everything "normal" or as close to the same routine as possible we could get through that difficult time and remain close.  I don't know what I was thinking.  I was not in my right mind.  I went through the motions of everyday life, get Dallas off to school, laundry, dishes, grocery, cook.  I did it all like a zombie or crying uncontrollably.  There was no normal.  Then I gave up. The house was so incredibly quiet, no laughter or bickering between the girls. There was no talking or not much at all between any of us.  I stopped trying, I stopped going to church and only did what was absolutely necessary.  After almost three years of wallowing in depression I decided to get a part time job to force myself out into the world; it helped.

I found my way back to church eventually and with a more relaxed attitude.  I'm better but not whole, there will always be someone missing from the equation of my life. I no longer walk through life like a zombie and I hope my children don't think I forgot about them during those days.  I know I wasn't the best mother during those first couple of years.  We all did the best we could to survive; but I believe we are moving in a more positive direction now.  My children are each an important part of our family and loved immensely.  Their well being is what got me out of bed every day.  They are the reason I didn't stay in my pajamas and in bed every day. Hopefully I can still teach them a few things even though they are adults now.  As I get older I find more and more they are teaching me; and I am thankful for that. They are a true blessing to my life!

Tears

 I try not to cry when I tell new people about Madison.  Not because I want to appear strong or am embarrassed but because crying, especially for my daughter is a very personal thing.  Most of the time I am successful.  I don't always get emotional talking about what caused her death.  I will admit that I do get a little shaky if the topic lasts too long.  However when I get asked about her personally, I can usually only go on for a little while before I have to stop. I don't like to share my tears, so I will just stop talking as though I am finished and smile. It’s not that I am afraid to cry. Crying just feels too intimate especially when it's about Madison.  Actually crying in general is not something I care to share; maybe I've become stoic.

Don't get me wrong I cry and usually everyday, I just choose not to share my tears with most people.  I also love talking about my children, even Madison.  There are times though when I have to say, "I really can't talk about this anymore."   There are moments while talking about her that I'll feel overwhelmed and get choked up but I can usually hold it together pretty well.  Just the other day though, I started to cry while talking about Madison and Marfan syndrome.  It had been a stressful few days and I wasn't feeling great.  Someone asked me about Madison and I answered the question then started to lose it.  My emotions were pretty close to the surface and I got very choked up.  It happens, I'm human.  I miss her so much.

Feast Day

I have an acquaintance that also lost a child, her only daughter, many years ago.  She calls that day her baby's feast day.  At first I didn't know what to think upon hearing this, but then realized what a beautiful thing to call it.  In Catholicism we call the day of a Saint’s death their feast day.  As a Christian we believe and are taught that our ultimate goal is to be with God in heaven. We are told that one of the things we’ll do after making it to heaven is sit at the Lord's table. Madison entered that state of grace the evening of October 9, 2009, her feast day. I know exactly where my girl is, and yes that does give me some comfort. Her struggle is over, and my poor child struggled plenty while here on earth.  Now we who loved her most are left to struggle without her. 

At first we struggled with the realization that she was actually gone, then to sleep or just to get out of the bed.  In our heads we/I struggle with our loss, we try to make sense out of something senseless.  The question why comes up a lot in the beginning and even occasionally after five years.  Some of our relationships have struggled, with family, friends and each other. This struggle has touched every aspect of our lives, but in different ways, as we are different people.  None of us are the same since Madison's death.  Sure people generally change or evolve a bit as the years go by, but we fell off a cliff this day five years ago. When we eventually stood up after the fall our personalities had shifted, even if slightly it has made a big difference in the people we are today. 

There is no going back to the way we used to be.  One of the things that didn't change however, is the love I have for my children. They make me laugh and cry and smile and drive me crazy.  l am blessed beyond belief to be their mom.  I miss Madison so much and who we all used to be when she was with us.  Our new normal is still emerging, but we will love and try to accept each other throughout.

So yes we struggle every day, but we cannot stop living because of the struggle.  We will all eventually have our feast day.  It’s our job on this earth to make the best of our time here, I know this is my opinion but I believe it.

Silly

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When my children were little we would have so much fun just being silly.  My children are the only people that I have never been self conscious around.  Being silly was one of our ways of playing together.  As they grew older the silliness was still there but also evolved into jokes and sarcasm. I was okay with the sarcasm as long as it wasn't hurtful or disrespectful.  When the teenage years rolled in the kids would usually respond to my silly sayings with an "Oh mom!" I'll never forget during some of our many drives to or from Tennessee, when we still lived in Louisiana, we would all speak in a British accent. This encouraged us to talk more and was fun at rest stops and McDonald's.  We also listened to a lot of Harry Potter or as we dubbed him Harvey Poncho.

I lost my taste for silly when we lost Madison. We, each of us, went into our own world of grief barely able to help each other or ourselves.  No one expects to lose a child or a sibling so young, even if that child is ill, you just never give up hope. When we suddenly lost her it was gut wrenching. The last thing I felt like being was silly. I was lost, broken hearted, angry, devastated; these feeling don't usually have anything to do with being silly. Silly was very far away and I am not sure I wanted anything to do with it again.

Eventually silly trickled back into my life. When I found myself saying something silly at one point, I felt a little like I wasn't supposed to do that. Slowly I began to be a little silly again with Dallas, she was often not receptive. Her grief journey has been different than mine. I wasn't there for her the way I should have been as her mother. I didn't know what I was doing and I've made so many mistakes. I know I wasn't there for Derric either.  These realizations, and they're not new ones, make me so sad.  After almost five years we are all now further along on the path, and I hope more enlightened, but we are in progress. 

I think I've gotten some of my silly back.  Working with children you cannot help being silly. I am convinced little children are born to be silly; what a wonderful thing. I am blessed to have been able to have all those silly fun times with my own children. I am also blessed to share some silliness with the children I spend part of my days with at work. What makes me really happy is that my children and I can share some silly moments again. It doesn't matter how old we are, a little silliness is a good thing.

April 10, 2014

Most people I know have issues of some kind.  I have learned that things or people are rarely what they seem to be on the surface.  We all wear a mask at some point in our life, we are all actors.  The man you see in church every morning seems to be the definition of a good Christian.  He may be there asking forgiveness for his volatile temper that he displays at home.  The most popular girl in school is the picture of confidence.  She might be someone filled with fear and self-doubt.  As I am thinking about this subject, I recall the final performance at Tennessee Governor's School for the Arts. It's title "Identity Crisis."  Dallas was a part of that production and it hit home for me.  She did a wonderful job too.  This production proved to me just how young we start wearing these masks of life.  Some of us wear them by choice; others have it thrust upon them by the people who are judging.

I used to be quite judgmental.  Well I hope I can say used to be.  Over the years I've realized everyone has something going on in their life that they find difficult to handle.  I try to think twice before I am critical of another.  There are still moments when I speak before I think.  Children are great reminders of our imperfections.  There have been times when one of mine has called me out for saying what I should not.

Madison used to become quite sad when people would judge her, or stare at her because she looked a little different.  She understood why kids did it but was always disappointed at the adults who stared.  This usually happened when she was in her wheel chair, but not always.  Madison had the typical Marfan look.  She was tall for her age, quite thin, double jointed, had long skinny fingers and toes and arms and legs.  She also had a long narrow face, and those are the features that caused people to stare.  What they failed to notice were her beautiful blue eyes and shapely lips, her creamy smooth skin and long thick wavy hair.  Because some people judged her by appearance, they missed the best part of her.  She had a wicked quick sense of humor, an infectious laugh and a sensitive heart of gold.

She would have turned 21 today.

Mama

The two people I miss most in this world are of coarse Madison, but also my mama.  Other than my daughter, it's her I miss most.  She's the other person no longer with me that I think about daily.  This may sound weird but there are times in my day when I just feel the urge to say, “mama” out loud and if I'm alone I do.  My dad died when I was only 8 years old, and I miss him too but my mother was everything to me.

My mother taught me, what I think, is the most important thing I could have learned in my life.  She taught me how to love.  My mother had many situations in her life that could have caused her to be an angry woman.  Sure she got angry but her faith always brought her through it.  My mother wasn't perfect.  Yes she had a hard life and sometimes got mad at the world but she was so full of love for her family and God that I never saw anger take root.

I called her “mama” or “ma” and sometimes “mother.”  She was without a doubt the most selfless woman I have ever known.  Dorothy is her name and she was born to Cajun parents and spent her childhood living in New Orleans and Cajun country.  She married quite young and became a widow young as well.  After the death of my father she was angry, but when you have young children to raise and bills to pay focus is necessary.  When I grew up and stopped being a self-centered teenager I was proud of my mother and all that she accomplished.  Since loosing her husband after only 20 years of marriage she got her GED, and a full time job.  She went to a trade school then got an even better job.  She worked through debilitating and chronic illness, often at two jobs.  She was also an amazing seamstress using that talent to supplement her income.  She kept a roof over our heads, paid all the bills, saw her daughters marry and have their own kids.  She was there when we needed her.  She lost her father just a few years after getting married. I saw my mother loose her mother, her husband, her best friend and two of her older grandchildren.  My mother was the strongest woman I have known, even at her weakest.  I know with all my heart that she was there waiting for Madison as my girl arrived in heaven.

My mother had a stroke the same day that a doctor said he had never expected Madison to live as long as she had.  Madison was nine years old at the time, and that doctor was her cardiologist.  Crazy thoughts began to run through my mind.  I know after a tragic event we sometimes look for signs to have it all make sense in our head. My mother was in a coma for a week before she died, and I started to think my mother traded her life for my daughter's.  To hear what the cardiologist said and then loosing my mother so soon after, that was my conclusion.  It's been eleven and a half years since I lost my mother and I still think about that day and everything that happened.  Sometimes it still feels like there was a trade made behind the scene between God and my mother, buying time;. There's that concept again.  I believe she was that selfless.  She adored her grandchildren and worried about Madison so much because of her health issues due to Marfan syndrome.  Maybe I am being self-centered to have such an idea, maybe.  I know that time can make the past seem rosier than it was and my mother was not a saint; but she loved her family with all her heart.  She was a devoted mother.  She was my biggest supporter, my biggest fan and losing that unconditional love of a parent was devastating. I always knew my mother loved me no matter what.  That is how I have tried to make my children feel, loved, no matter what.  I can only hope that I love them as well as my mama loved me.

Traditions

Where have our traditions gone?  They disappeared, poof, in a cloud of smoke, or it might have been a fog.  Since we lost Madison it hasn't been the same, for any of us, no doubt.  I barely put up the Christmas tree this year. I put it up later than usual and didn't put ornaments on until 3 days before Christmas.  I know that if I don't keep our few little traditions going they will go away and never come back.  We'll end up a family filled with apathy; more apathy than we already have.  We used to be so excited about Christmas, and I know it wasn't just me. 

It's not just losing Madison, it's compounded by being so far from the rest of our family.  There is no doubt she is greatly missed.  Our first Christmas in Knoxville was also our first Christmas without Madison. I know her absence is a big part of my growing indifference; our lives, my life is so different here in Knoxville.  I feel the absence of my extended family quite keenly especially around the holidays.  I miss the Christmas chaos. I miss visiting with people I have a long and history with, weather I've known them my whole life or the last 10, 15, 20 years or more. I want to talk to people who knew and remember Madison.  I want to talk face to face and say, "remember when?" I want to reminisce about when we were kids or teenagers or about our parents, any topic will do.  There is a quote from a Jane Austen book called Mansfield Park; where the main character is asked why she chooses to go back home.  “The remembrance of all her earliest pleasures, and of what she had suffered in being torn from them, came over her with renewed strength, and it seemed as if to be at home again would heal every pain that had since grown out of the separation.  To be in the center of such a circle, loved by so many…to feel affection without fear or restraint; to feel herself the equal of those who surrounded her…” Though I was not torn from Louisiana, I feel that Madison was torn from me.  Also there is something about being surrounded by not just people I love but people I have a shared history with that makes me feel more equal.  Others who have had similar experiences, who are going through some of the same issues or joys. It just plainly feels good to sometimes be surrounded by the very familiar.

All of that said, I am not moving back to Louisiana and do like living in Knoxville very much.  After four years it is starting to feel more home like. I will admit that even in Louisiana I have at times felt out of place. I always assumed though that, that was just my own social awkwardness. Here, at this time of my life is where some apathy works, because I don't often get that uncomfortable feeling like I used to.  After all that I have been through in my life there are very few things that make me feel uncomfortable any more. Maybe I should have had more apathy toward some things in my younger years, it can be quite liberating.

I will, however work hard to be less indifferent toward keeping some of our traditions going, because one thing I am not apathetic about is my family. Our traditions are not big or spectacular, but they are ours.  For example, one thing we used to always do is put up a Disney Christmas tree.  This is the tree the kids loved decorating most.  They started by putting on their favorite characters' ornaments.  It was a lot of fun to do and watch.

Maybe we will start a couple of new traditions. I am determined to do better next year.  I’ll begin by mailing the Christmas cards I bought.  I will put the tree up like usual, ornaments too. We will also put up the Disney tree.  I will decorate in a timelier manner next year, not waiting until a couple of days before Christmas. I won’t wait until the last minute to shop or plan or send packages. Knowing which traditions to hold on to and which to let go of will be one of my goals for the new year.  I think that the letting go idea will work for my closets and garage too.  Missing my family and always my Madison very much!

Quilts

Madison's mermaid quilt, she drew & I turned into the quilt

She said this was a mama & daughter quilt, she spilled a little chocolate on mama

Dallas' quilt she also drew pictures & I turned into a quilt & ChaCha

Some of the quilts I made for the kids in my class

I love to make quilts.  I enjoy the whole process, from the idea forming in my head to drawing it on paper, to cutting and piecing the different materials together, to the quilting.  I get great satisfaction from finishing a quilt. My mom taught me how to sew but I could never quite get the making of clothes the way she or my sisters did.  I am mostly self-taught as a quilter. I've read a few books and practiced a lot, but did take one class in 2002. 

Over the years I've made a few quilts and each one took a pretty long time to finish. Until recently I did all of my quilting by hand. I purchased a new sewing machine after my old one broke beyond repair. My new machine can quilt and do so many things I have yet to try.  Because of this new machine I decided to do a rather large project for Christmas. I made a small quilt for each child in my class, plus a few extra for some kids I’m very fond of that used to be in my class.  I have lots of material, and I made purchases over several months to spread out the cost. Each quilt is different in color and design, and I enjoyed making each one. Like I said, I love the creative process, from beginning to end. I also enjoyed all the practice, and learning my new sewing machine.

One mom told me that my gift to her child was too much.  Several parents seemed very surprised when they learned that I made the quilt for their child. Upon finishing the last quilts I became a little nervous about giving them to the children. I didn't want parents to read too much into the gift. I didn't want it to be weird, especially for those who are not in my class anymore. Then I thought to heck with it, I made them I'm giving them.

I began to really think about why making the quilts was important; there are several reasons. I wanted to do something nice for the children in my class.  These kids make me smile and laugh every day that I am with them. Sure they can also make me want to pull my hair out, but that is rare. They can be so sweet and I love being greeted by a hug and a smile.  Even if the initial greeting isn't so sweet I eventually get that smile.

Another reason for making the quilts is I have a great need to do creative or artsy things. Quilting, drawing, or painting, are the things I do that make me happy. When doing these things it's not a chore or labor to me, it's fun! Doing something creative has helped me tremendously throughout my life, especially after losing Madison. After her death I found myself lost in my own head, constantly dwelling on what I should or shouldn't have done to keep Madison healthy. I had too much time every day to cry, blame, hate, dwell; I just wanted to die too. But I would never do anything to hurt myself, and I would never want to cause my other children more grief, they have been through enough.

Not long after Madison passed I began to paint again, it felt good, even if the paintings weren't.  Then I pulled out a quilt started for Dallas a few years earlier. While working on that quilt ideas came to me so I sketched them in a book, and began to search my stash of material to make more quilts.  This creativity I have is a gift from God and not to use it would be an insult to Him.

I have to be creative in that artsy way with fabric or paint or what ever comes to mind.  It is who I am, good or bad the art has to happen.  So I sometimes make things for people; and hope my work isn't judged too harshly.  My home is full of the things I've created over the years, quite full.  My answer to anyone who may ask why I made the quilts; "it's just what I do."