Waiting

I was recently reminded of when my mother had the stroke that eventually took her life.  The anniversary of her death, July 30th to be exact, thirteen years ago has just passed.  I was watching the movie “The Descendants.”  In this movie the family sits in the hospital room keeping the mom/wife company while waiting for her to die and saying their goodbyes.  This is a sad part of the movie but the plot is more complicated.

The act of waiting for a loved one to die is a miserable yet honorable privilege.  When my own mother was in the hospital dying we did the same thing.  Members of our family, mostly myself and sisters and her grandchildren one or more of us were always there with her.  We didn’t want her to be alone.  And it has taken me thirteen years to realize what a privilege it was to not only help take care of her in her last few years but especially to be with her those last days.  I was alway glad she was my mother even when we didn’t get along in my teenage years.  I knew she was a good mom and a nicer mom than most others I knew.

She took such good care of us growing up and loved her daughters intensely.  What a gift that was, to be able to take care of her.  To this day when I am sick or under the weather I remember all the little extra things she used to do when we were younger and sick.  I have tried over the years to take as good a care of my own children whenever they have been sick.

Madison told me on a few occasions when she was sick that she was sorry to be a burden.  She was never a burden.  When you love someone taking care of them is just what you do.  She could see that at times I was exhausted but she was never a burden.  I love taking cake of my kids and even though Derric and Dallas are adults when they need me I’m there for them. Now that Madison is gone I feel like I am taking care of her memory.  I’m making sure that she isn’t forgotten and that those who didn’t know her personally can maybe get to know her through me.  It may seem that I wear rose colored glasses where Madison is concerned but I really don’t.  She had her moody cranky side too.  If you were sick as often as she was you would be too.  

After we lost Madison I felt as if I were waiting to die.  I would sit on my sofa and stare at the television, not watching but staring.  Part of me wanted to die too.  I felt useless, like a failure as a mother.  What good could I possibly be to my other children?  I didn’t see the signs that led to Madison’s death, I told myself that I didn’t deserve to be here.  I felt like I was sleepwalking through my life.  The fact that my other kids did indeed still need me I believe is what woke me up.   I am awake and we are moving forward, making plans and yes occasionally having a little fun.  I am no longer waiting to die but trying to live!

Before and After

There will always be certain events in our lives that mark a change or turning point.  Sometimes it is a global or national event that affects many people at once.  I have heard it said that when President Kennedy was shot it changed our nation as a whole, with people becoming less trusting among other things.  I have heard it referred to as the day our nation lost its innocence.  Hurricane Katrina affected a whole region of people whose lives will never be the same.  Sometimes it's a happy event like a marriage or birth.  It is the events that touch our lives personally that affect us the most.  We often identify that period as before and after.  We might say before Katrina hit this is how things  worked, but now..."  For myself I used to sleep like a rock before I had children, but after I sleep light as a feather.  Once you get "mommy ears" that's it.

Someone recently commented that my husband is, "different than he used to be."  Granted he has not had much contact with this person in over six years though he tried to stay in touch and had reached out to this person many times.  You know how it is though, we get used to seeing someone almost every day and it’s convenient, then suddenly they are no longer there.  People get busy and caught up in their own lives with work and family and friends who are still logistically close.  

Our family has gone through one of those mentioned life changing events, actually more than one we also moved over five hundred miles away from family and friends.  Other people forget, well that’s not a fair statement.  Our life changing event is not in the forefront of anyone else's mind but ours and that's the way it is.  It didn't happen to them their lives didn't change the way ours did and life goes on.  When you lose a loved one your family, friends, coworkers and so on all pause for a moment out of respect.  Those closest to you pause a little longer because they also feel the loss.  But eventually life does move on for those of us still walking the planet.  It just goes on a little differently for we who are grieving, especially when the grief is for a child.

To put it mildly grief hurts!  It hurts emotionally and spiritually and even physically.  It changes you, it changed me and Mark and my family.  We may look the same on the outside but we don't think or feel the same on the inside.  I know we don't act the same either and I won't apologize for any of it.  Of course things changed someone we love is no longer with us.  She wasn’t just someone we love; she was a friend, a best friend, a sister, a daughter, a granddaughter, queen of the one liners, a confidante, a beautiful creative funny part of our family.  We miss her and always will.

As hard as it is we do go on, but our path is altered.  There is no going back to the way we used to be even if we wanted to.  We move forward for the sake of each other and ourselves and to honor Madison.  We know that she would not want us to wallow in sadness and tears.  We know that she would want us to be happy and we are working on that.  In the beginning I didn’t think joy would ever be a part of my life again but little by little I learned to find it; in the beauty of a cardinal or the cuteness of a puppy or a smile on my other children’s faces.  I find joy when I hear Derric and Dallas laughing, now that is a sound Mark and I absolutely love to hear.

My sister Jennifer told me once not long after losing Madison that if I am feeling overwhelmed in depression to just go outside.  She told me to go outside and sit in nature and see what a beautiful world God has made.  She was right, and she should know she has lost two children in her life.  I took her advice and I think it is one of the reasons I like East Tennessee as much as I do.  I spent a fair amount of time our first year here sitting outside on our porch, more time than I usually do, enjoying the four seasons.  I would spend that time contemplating the beauty around me, the trees, birds, snow, fireflies, and an occasional glimpse of the mountains.

So has my husband changed?  The simple answer is yes; anyone who knows him, really knows him can’t help but have noticed the transformation over the last few years.  We have all changed.   Can you say that you’re the same person you were six years ago?  It doesn’t require a life altering event to see that people change a bit as the years go by.  Though we are no longer “happy go lucky” and the smiles don’t come as easily we are finding our happiness a moment at a time.  There will always be sadness that Madison isn't with us to share our lives.  The most difficult thing to do after losing my child was to find and experience joy.  I thought I would never experience that feeling again.  I’ll go out on a limb and say that the rest of my family probably felt that way too.  Maybe one day I’ll have a grandchild named Joy, then she will be more easily found!  :-)

This photo was taken a week before we lost our Madison.

Gratitude

Gratitude

Thessalonians 5:18  Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

I thank my good Lord everyday for all my family and all those I love.  I am heartily grateful for every one of them.  I am even grateful, eventually, for the things that don’t go my way.  All of the experiences in my life, all of the people who have touched my life for good or bad have helped make me who I am.  How I handle the good and bad that come my way helps me grow.  Sometimes I may shut down for a while after a bad experience, and sometimes I have a difficult time letting things go, but sooner or later I do.  Yes this is a bit contradictory to a recent post but we learn things from all our experiences, good and bad whether we realize it or not.  Sounds like psycho babble doesn’t it?  At times I think I am just trying to convince myself!  However, I write what I am feeling, sometimes the feeling is in the moment but usually deeply rooted.

I am grateful for everything, the good, the bad, the beautiful and the ugly.  I have known great love in my life and treasure it.  I know that I am truly blessed and I believe this is why I feel the loss of those I love so deeply.  I think this is true for everyone, the deeper the love the deeper the loss is felt.  And although I have lost people I love the love still exists the love stays with me; I will always love my parents and I will always love Madison.  My heart can be so full of that love that it aches.  I don’t know who I would be without knowing the love I have experienced and experience daily.  The losses in my life help me appreciate that love more and more every day. I have learned that though life is fragile real love is not.  Our love for one another and for God can be completely overwhelming, especially when you think about what some will do for those they love.  What wouldn’t a parent do for a child they love with all their heart?  What sacrifice would a husband or wife make for their spouse?  Think about the ultimate sacrifice that God made for us though we are undeserving..

I believe that gratitude and love go hand in hand.  If I am grateful I show it by how I treat others which is hopefully with love.  A simple thank you, while being appropriate and welcome feels hollow if actions and other words don’t come from love.  Trust me I do at time struggle with the, “other  words,” part.  It’s easy to lose my temper when things aren’t going the way I want or think they should.  Which explains a lot of why I was angry for so long after we lost Madison.  I thought we were taking care of her the way we were supposed to, but I forgot what I always knew.  Sometimes the answer to our prayers is, “no”, or maybe the answer was, “yes” but yes didn’t look the way I thought it would.  I am just grateful that Madison was in our lives for at least a little while.

Mother's Day 2015

It is overwhelming to me when I allow myself to think on the losses I have had throughout my life. Mothers day has just passed and it has been a difficult day for me for many years. On this day I pulled out some photo albums and reminisced with myself about what was. I was looking for a good photo of my own mother and maybe one with Madison in the same picture. Many of my Facebook friends were posting pictures of their mothers and I thought I would too, but I didn't. I was fine for a little while then came across pictures of my uncle, then my father-in-law, there were also some of my niece too and my husband's grandfather. I didn't go far enough back see photos of my dad but he came to mind as well. I know other people have lost family members and I'm not trying to diminish another's loss. I just feel like I've been losing people I love for so long, starting at the age of four. Sometimes I'll think to myself, “Why?” That is the ultimate question, not just why do people die but why do some die so young?

I've heard the saying about the silver lining my whole life. I also have heard it said that God will bring good out of bad things. But for the life of me I can't see how the death of one who is so loved or so young can bring something good. The death of my father brought misery, fear and poverty to my mother and sisters and me. Yes my mother became a stronger person but she already was strong even if she didn't feel so. The death of my daughter brought depression, doubt, misery and fierce rebellion. Yes I now speak up more than I used to but that process had already begun. What good came out of these deaths, these tragedies? Where is the silver lining in these two very dark clouds? Yes I guess I'm still a little angry.

I was brought up Catholic and one of the things I remember from Catechism class is that we are not to question God. I think the teachers got it wrong. It is my opinion that God welcomes the questions. How else will we learn? How else can we grow in life and in our love of God? I hear often that God wants a relationship with us. Well, I ask my friends questions all the time, that is how we get to know each other. I realize many of the questions I ask won't be answered in my lifetime, but I can still ask them and not have to confess that I questioned God! So I ask, why was my dad taken so young? Why did two of my nieces die so young? And why did Madison go so young? I used to pray for a miracle of healing for her, I hoped and prayed for her life to be an example of God's healing power. I just want to hold my daughter again. I want Madison to tell her siblings everything is going to be okay. I want her to tell them God does hear our prayers I want, I want, I want! I often think the miracle is that I didn't lose my faith in God after losing Madison. Now I admit my faith was shaken for some time but it never went away and now it grows.

Great loss of any kind usually brings up the question, “Why?” It's a natural response, especially when what is lost is a loved one. I lost my beloved maternal grandmother when I was four years old, at six my niece and shortly after an aunt, my father just two years later at eight. My mother's best friend whom I loved like an aunt passed away when I was about ten. Years later an uncle, then one of my brother's-in-law, then another niece, also my husband's grandparents, then my mom, then my father-in-law then another uncle, and of coarse my Madison. I honestly think the death of Madison could not have been borne by my mother; another woman who experienced great loss throughout her life. This list seems put here so coldly, but I assure you I loved and cared for each one of these people who touched my life and while all of these losses were hard some were devastating. It is very difficult to think of them and not be emotional. So as I reminisced over my photo albums I thought of all these lovely people and felt so sad. I don't usually allow myself to dwell on all of my losses because like I said its overwhelming, as I think it should be when you have loved and lost many times over.

(my mom)Granny & Madison, Baby Grandpa & Madison, (uncle) Edward, Madison & Pawpaw (Mark's dad), Aunt Beverly & Uncle EJ, my dad

Steel Magnolias

When I first saw the movie Steel Magnolias I thought it was a very good but very sad movie, and that was it.  The day Madison was diagnosed with Marfan syndrome the geneticist told us she should never have children.  My baby girl was eight months old and the doctor was limiting her life already in so many ways with the diagnosis then he laid this information on us.  I immediately had visions of the movie in my head.  I would one day have to tell my daughter she should never have children.  I know he wasn't telling us this to be mean but for us to have realistic expectations.  Not only would there be a fifty percent chance of passing Marfans on to her own children but the pressure a pregnancy would put on her body, especially her heart could be fatal to her and the child.  Now there are many women with Marfans that have had children and are doing just fine.  But even at a mere eight months old doctors suspected Madison had a more severe case of Marfans, and they were right.

When Madison was in her early teens we had that talk.  She talked about having five children from a very young age.  One day she asked if I thought she would be able to have five children.  That is where the discussion began.  We talked about her heart and how being pregnant puts a lot of pressure on a woman's heart and lungs and body in general.  We talked about how adoption could be the answer for her wanting so many children.  We even joked about how she wouldn't have to go through labor pains.  Then one day I was scrolling through the television channels and paused for a few minutes on the movie Steel Magnolias.  Madison had walked into the room behind me and was there for a little while before I noticed.  I went to change the channel but she asked me to leave it on.  After we watched the movie together for a while she said, “That's just like me, the doctor said I shouldn't have children.”  After thinking about it she said, “That's okay, I'll just adopt.”  She was so matter of fact about it and her mind was made up.  We did watch the movie until the end and I think that sealed her decision.

Every once in a while she would talk about how her future husband better like large families.  She wanted to adopt five children and it didn't matter what their race would be.  As a matter of fact she hoped to adopt children of all different races.  Madison could never understand the hate some people felt toward others because of their skin color.  She loved having friends of different races.  It's not that she didn't mind the differences it's that she loved them.  We went to a Catholic church just outside of the French Quarter one time, Our Lady of Guadalupe, and the church was filled with people of many different races.  She leaned over to me and said, “This is how church is supposed to feel and be.” 

The Half Matters

I hear many conversations everyday. I can't help it I work with school age children, and they don't filter anything they say. Sometimes it's very amusing, sometimes annoying, often they actively involve me in their conversations. I try to remember when I was their age, did I talk about the same topics? I'm pretty sure I did.  The other day a little girl, a first grader, told her friend, "I'm six and a half years old." An older girl, (ten years old) chimed in saying, "The half doesn't count, it doesn't matter." This particular older girl, a fifth grader, is very critical of people and I've noticed especially of someone who is supposed to be her best friend.  Today, after making that statement, she took it upon herself to reprimand some younger girls for making fun of another person. Then, just a few minutes later she called her best friend a name for disagreeing with her on another topic. One of those younger girls, a second grader, called out her hypocrisy but not in those words. I thought to myself about the second grader, good girl. So the 7 year old and the 10 year old started having a small argument. The discussion started getting a little intense so I interceded by changing the subject with a question about school.  I wish now, after thinking about it, that I had asked a different question.

I wish I had asked the ten year old, "Why doesn't the half matter?" You see I think it matters tremendously and obviously so did the six and a half year old or she wouldn't have said it. Very young kids often get things right but we dismiss them simply because they are very young. I remember the first time I met my step daughter Noelle, she told me she was, "four and a half." That half was so important to her. As my other kids were growing up if I left the half off of their age when saying it they would quickly and proudly add that half.  It is a measure of their time, God, yes I'm talking to God, I wish I knew another concept that didn't inconveniently fluctuate so randomly as time seems to.  It is hard to unlearn a concept that's been drilled into your head since you could understand the spoken word. I would love to find and learn a new way to measure our passage in this life. I wonder though if my brain could comprehend such a thing. 

That half has been very important to me since losing Madison. I had her with me for sixteen and a half years.  I'll never give up that half. That half came after her near death just seven months earlier.  That half means the world to me, my kids mean the world to me.  Every moment I spend with them is important to me whether we are getting along and having fun, or arguing with each other. My children are worth my love, my time, my tears and my fight. I'll never stop loving my children, and I'll always have time for them.  I will always pray for them and fight for them and when I am so inclined shed tears for them.  What matters to one person may not to another, so we shouldn't diminish what another person feels is important just because we don't feel the same. Being around children I am reminded everyday of the person I am and the person I want to be.  Life is a constant learning experience, and children have a way of making you really look at yourself.  I'll hang on to my half, thank you very much, and I'm sure most kids and some adults will too.

 No halves today though. Today is Madison's birthday.  She would have been twenty two years old.  She is missed everyday!

Throwing Stones

"Let him who is without sin among you be the first to throw a stone at her." John: 8

This blog is a memory, a diary, a confessional and therapy for me. I open my heart to share the memories I hold of life before and after my greatest loss.  Some of these memories are very dear and some are quite painful, but I feel the need to express them.  This particular post begins with a smooth black stone.  Mark handed me this stone one afternoon when I was feeling especially defeated. He said, "hand this to anyone who thinks they have the right to throw it."

I don't claim to be perfect, I have made and make mistakes, daily; and I hope not to be judged too harshly for them.  Those that do judge, I ask if they would like to walk just one day in my shoes?  I know we all have our hardships and difficult life experiences but to trade for a day would maybe give me one where I don't have to live with the fact that Madison is dead; that Dallas watched helplessly as it happened and her parents fell apart; that she lost her best friend and confidante. I wouldn't have had to call Derric and tell him his sister was gone while he was over five hundred miles away.  The pain was unbearable but I did bear it, we all did in our own imperfect ways.

To be able to forget those terrible things for one day may give a moments rest, but I wouldn't trade my life or family for anything.  I have shared a life that is beautiful in its simplicity.  Yes it is a simple life, mostly, that I lead because that's how I want it and that is what helps me feel closer to my God.  I would never trade one day, even if I could because that would be an insult.  I can't forget and won't deny my life experiences; for better or worse they are what make me who I am.

Some people may see my mistakes as catastrophic or disastrous.  I may be seen as weak, a push over or stupid.  There are those who may call me unreasonable or crazy.  None of these descriptions faze me.  I know myself, and the temperament God has granted me.  I don't always have the right answer but I am usually methodical in getting to the solution. Slow and steady, that's how I try to be. I try not to speak without thinking, though it has been known to happen. I will not rashly make decisions or follow advice until I see how it will work in my life and family.  One "fix" does not fit all. 

Life is filled with trial and error. Some people are blessed to be able to learn from the mistakes of others. Some of us must learn from our own; then there are those who never seem to learn. I pray that I am in the first category, but am probably a combination of the three; it's my opinion that our human nature makes most of us that way. I think we all have some aspects of our lives however that seem to repeat as on a loop.  If we're lucky those moments are few.

My flaws make me grateful for the people who remain.  I know heavy emotions can affect what we do and say at any given moment. When feeling defeated and like I have failed, that smooth black stone comes to mind. On days when I have a "high and mighty" moment, again I think of that stone and am quick to get over myself.  I try to remember that everyone has something they find difficult to handle. I know I've said some harsh and unkind things while feeling stressed. I could never throw that stone and don't know anyone who could.

I live every day with the decisions I've made in my life, good and bad. It took me a long time to start forgiving myself for the mistakes. I'm not completely there yet but I've made some progress.  So if the choices I make don't seem sensible to others, that's okay. They only have to make sense for my family and me. 

Fear

Fear. I am well acquainted with fear. I've been living with it since I was a child. I used to live in fear of embarrassment, what others thought of me or being laughed at. I used to be very afraid of strangers and new situations. Change was very difficult for me. I used to be afraid of making people mad, especially those I was close to. I lived in fear of losing the people I love, not just in death but losing their love. Fear ruled me for too much of my life, and unfortunately some people exploited that fear which lead to trust issues as well. It's sad to think about all the time and life I have wasted on fear.

As an adult I knew that I was hurting myself by having so much fear but I was often paralysed by it. I read scripture about not being afraid over and over but didn't know how to “give it to God.” I couldn't let it go, I guess it became sort of like a security blanket. I would find reasons, really excuses, not to do certain things or not to try new things because of that fear; and I often didn't trust my own decisions. I think I hid in my house in the country so as not to deal with too many people or possible uncomfortable situations.

I can honestly say the night we lost Madison that fear disappeared. Granted I was slowly coming around, the year or so before I was learning to not care so much about what others thought of me; I even stopped wearing make-up not that I ever wore much. And I did agree to move ten hours from all my extended family. But that night after she passed I realized I no longer feared death because Madison would be there waiting for me. That was it, my fear of almost everything else went out the window too. I no longer care if people think I'm strange or weird. I don't care if they look down on me because of what I wear or the way I talk or what ever else people can find wrong with me.

So as we face another new year I am thinking about new beginnings without fear. Change is inevitable in every person's life, good and bad. Uncomfortable situations will occur, and we will have to make difficult choices. This is how we grow; that is why the cliché's are true, “growing pains.” I don't know what the next year will hold for me and my family but I am not afraid of what may come. I know that I have been given a gift of uncommon patience; so when change comes my way I will be okay and I believe my family will too.

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."