It’s a little unreal that 2016 is coming to a close.  Reflecting on what has happened the past 365 days reveals how very busy we were, some tough stuff, and plenty of happy family memories.

In January I traveled to Dallas, TX for a meeting about Ataluren (the trial drug the boys are on).  There I made new friends, many of those friendships will last my lifetime.  I left Dallas on my birthday and flew home feeling really positive that Ataluren would receive FDA approval in 2016.

Upon arriving home, a snow storm hit Nebraska.  There was so much snow and some extra days off of school and we had a blast!  We played in the snow.  I have a vivid memory of my husband and all the men of the cul-de-sac out in the snow in all their cold wear drinking a beer like it was a summer evening.  There was a blanket fort up in the basement for days and  Jason and I even had a night-cap in there one night.

February…well I can’t really remember February so I’m guessing nothing big happened or it was bad enough I blocked itfeom my memory.

In March our daughter played in the Nebraska State Basketball Tournament, her team ended up 3rd.  A local newspaper covering one of the games mentioned Lexi “making the biggest shot of her young career…”  It was a great shot and for as long as I live I don’t think I’ll forget jumping up and down like a crazy person when she made it.

By March, the Vertin family was also noticing that Pappa (Jason’s dad) was not himself and in some pain.  We also traveled to Cincinnati for the boys bi-annual clinical visit. Their check-ups were mostly positive, mainly needing some med changes.

Shortly after Easter, we learned that Pappa had cancer.  Jason spent some extra time with his parents those first weeks and months of the diagnosis.   Months after Pappa’s diagnosis, Jason’s mom was also diagnosed with cancer.  She was very strong, she persevered, and showed us all a little about what determination looks like.  There were some tough days; Jason loves his parents so and it is hard to watch someone you love hurt.

In April Lexi turned 15 and is still learning to drive.  She prefers to drive with her Dad because “I” make her nervous.  It’s okay though, because I prefer she drives with her Dad too because “she” makes me a little nervous.

April was also exciting because Nebraska started a support group for families effected by Duchenne.  It has been nice to meet with the other families in Nebraska on a regular basis.

May was a stressful month.  We had become very unhappy with our school situation and had made a decision to have all four of the boys transfer back to Hastings Catholic Schools  in the fall.

The annual MRC Golf Tournament was held in Crete during Memorial Day Weekend and we loved it.  It was also successful enough that we were able to purchase new scooters for Max, Rowen, and Charlie.  The scooters have been a great source of independence for the boys.

In June our beloved cat of 12+ years disappeared, we are not sure what happened and miss him very much, especially me.  The void he left was filled pretty quickly as we welcomed a new dog, Leia, into our family.  She is a good dog and loved very much.

The same day Leia came, Max and Rowen went to MDA camp.  It was a special year because their cousin Emma volunteered as a camp counselor and was Rowen’s counselor at camp.  It was a neat experience.  If the boys continue to go to camp, I imagine that the number of Vertin volunteers will continue to increase! Chance also played in an All-Star baseball game; he enjoyed it immensely.

July was a memory filled month for me.  My sister from Texas was home and I was able to watch her son be baptized.   Max was finally tall enough to go down the water slides at the water park and he told Duchenne to  take a back seat! He was also Michael Darling in the play Peter Pan & Wendy.

I also braved a solo trip to Denver will all of my 6 kiddos.  We watched Lexi play some ball and hit lots of the tourist activities.  We made lots of memories, my favorite was probably our sandy stop at Lake McConaughy on our way into Denver.   We stopped and played in sand and water for a couple of hours and it was awesome!  The kids are begging to go back…I hope we can spend a weekend there in 2017!

In August the kids started back to school.  Mary missed the big kids but is loving her one on one time with mom.  And the move back to Hastings Catholic Schools was absolutely the right move for our family.  The kids are happy there, the kids are learning, and therefore, we are happy parents.  Chance started tackle football that month and it was a great experience for both Chance and Dad, who helped coach.

August also brought a first for me.  The week after the kids started to school, I flew to Washington, D.C. and met with the FDA.  If that sounds scary, it’s because it was a little scary.  But, by that time, we had learned that the FDA had refused to review the new drug application for Ataluren. I had to go to fight for the boys.

In August I start s to work out and a regular basis and found that I really loved a class call “body pump.”  It is a weight lifting/ cardio class.  I am getting much stronger physically which is a great help to me as I manually load and unload the boys scooters each day for school.

By September, I had started getting the hang of the blog thing and celebrated Mary’s 2nd birthday with a blog to explain all that she had done to heal and complete our family.

I harvested my best garden to date this past summer and was able to freeze and can quite a bit of vegetables.

September was a tough month though.  I traveled alone to Cincinnati with Max, Rowen, and Charlie for their clinical appointments.  I got pretty sick with a terrible cold while there and received  tough news.  Rowen’s abilities had started to diminish quite a  bit since the previous appointment and they saw an area of concern on Max’s heart.  We had to start preparing our home and van for a time when Rowen may not be able to walk and started, what I felt like, was a new stage of Duchenne care by adding cardiac medication for Max.

In October there was a lot of volleyball.  We attended a great family wedding and I finally got some good pictures of the kids all together, in nice clothes, with a great back drop! 

The kids really started to settle in and find their niches at school and we finished off the month like most families, trick-or-treating!

Thanksgiving was special this year.  Jason’s parents hosted Thanksgiving in their new home and the entire family was there to celebrate and give thanks. 

As soon as we got home from Thanksgiving, I knew it was time that our home had a cat again.  Lucky for me, the one I wanted had a brother and I had to adopt both.  Benji and Kendall are now members of the Vertin family.

December is coming to a close.  I havr always been told that holidays were hard for many Duchenne families. That had not been by experience until this year.  It was a hard Christmas season, but I was held together by a faithful God, the love of my family, and many many Christmas blessings from our community.

During 2016 we shared out story more that ever, in an even a bigger way, including an article in peoplemagazine.com.

Of course, there was some backlash, but for the most part people embraced us and have lifted us up.  

I have often thought over the last year about this:  I grew up a foster kid.  I was convinced I was un-loveable.  Growing up I always put the blame on myself, if I had been a better kid, my mom would have loved me.  If I had been more worthy of love I would not be in a foster home.

Over the years that has changed.  First and foremost because of the way my husband loves me.  He has been the greatest blessing bestowed on me.  He loved me first and made me believe I had always been loved, was worthy of love.

And now I have an entire community, a Duchenne family, and many strangers that love me and love my family and give so freely of themselves for me and my family.  This year Jason and I have grown even closer. As I have grieved the FDA decisions and grieved the progression Duchenne is making in my sons…he has lifted me up and loved me even more.

There was a lot of good this year and a fair share of tough. I pray for even more good and a little less tough in 2017 for me and for all. 

Happy New Year!
 

Today we celebrated my youngest daughter, Mary Pearl’s, second birthday. And after two years I am finally ready to tell that story.

About two years after the boys had all been diagnosed with Duchenne Muscular Dystrophy I had my heart checked.  As a  carrier, there was a chance my heart could be affected.  And it turns out, my heart was affected. I was diagnosed and started medicine that did not make me feel good.  After four diagnosis-es I was distraught.  At the time I would never had admitted it, but now I can see I was depressed and reaching to make things right again.

I home-schooled the boys that year, trying desperately to slow down time.  At that point, I just wanted the hands on the clock to stop turning.  I wanted to be stuck there.  I wanted to be stuck forever where all of my children were healthy and alive. That was also the year Max was accepted into a clinical trial that was showing promise,real promise, at slowing down progression of the disease.

Those things, home schooling and the clinical trial were distractions.  I could tell myself I was tired and sad and lost because those things were hard and those things were exhausting.  Now, I know I was trying desperately to do anything except feel; feel the pain, feel the joy, feel any support; I did not want to feel anything.  I was praying and begging not to feel.  To feel meant to hurt and I did not want to hurt anymore.

After meeting with our parish priest, he suggested a healing Mass.  Jason and I were completely willing.  Our priest was able to get a relic from Father Michael McGivney.  We sent a novena to all of our friends, family, social media accounts.  We prayed  it everyday until the Mass.  The Mass was beautiful.  We prayed for healing, we prayed for a cure.

Four or five months later, I realized I was pregnant.  Honestly, I was not happy.  I was scared to death.  I already had three sons with Duchenne and I was as scared as I have ever been about anything that I was pregnant with another son with Duchenne.  For 17 weeks we did not tell a soul. I even begged my husband to call our doctor.  I  didn’t want any “I told you so’s.” Jason asked him not to question our decision and just be our doctor.  We were blessed to not only have the doctor be a doctor, but he turned out to be a support system and friend through it all.

After the three boys were diagnosed.  We decided we could not have any more children. We didn’t decide if we wanted more children or not, we just decided we could not.  We could not risk another son with Duchenne.  And yet we did not do anything permanent.  We decided to stay with Natural Family Planning.  Duchenne already promised to steal so much from us.  We decided we could not let it steal our faith.  We continued to follow the teachings of the Catholic Church.

At 17 weeks pregnant we were scheduled for a ultrasound to find out whether the baby was a boy or a girl.  Our appointment was scheduled for 1:00.  I went to Noon Mass.  I went to prepare myself for another son with Duchenne.

After Mass I lingered.  I sat in the pew for awhile; avoiding any rush to get to the ultrasound and preparing myself for another son with Duchenne.  How do you prepare yourself for that?

I was sitting there and felt a peace come over me.  I heard an inaudible voice say, “It will be okay.  Call her Mary.”

Call her Mary?  Her? Mary is a girl’s name. The baby will be a girl?  I couldn’t understand.

I went to my appointment.  The ultrasound technician said girl.  We questioned her.  She was adamant it was a girl, that it was very obvious.  With tears in my eyes, I looked at my husband (who had no previous knowledge of my experience at Mass) and said, her name is Mary.  Half expecting him to look at me like I was crazy, he looked at me with a smile and said, “Okay!”

Mary Pearl Vertin was born September 25th at 4:47 am.  She weighed 6 lbs, 5 oz and was 21 inches long.  She was our miracle.  When I first laid eyes on her, my breath was taken away.  She had the darkest brown eyes I had ever seen and she looked directly at me; her look was slow, she was not flailing or screaming. She just keep eye contact with me.  It was powerful.

Mary has brought so much light into our lives.  She brings laughter and love and cuddles into our life.  She brought life back  into my life.  We were so muddled in the diagnosis.  We were so focused on the 20 year future that meant we would lose our children.  I was distraught.  I was not a good wife or good mother.  I hurt the ones I love because I was hurting so much.  When Mary came, there was light again.

All children are heaven sent; but Mary’s purpose…well I think I know, but always wonder. Remember that healing Mass I talked  about.  I believe Mary was the answer.  We prayed for healing.  I had a cure for Duchenne in mind.  God gave me Mary.  Mary was glue for my broken heart.  She helped me piece it together again; maybe she helped me peace it  back together again.

She brought his wife back to my husband.  She was a sister to my sister-less daughter, she was small and innocent and needed help that even a weak boy with Duchenne could give her, she was a healthy sibling, she is a soul sister to a little boy with brown eyes, and a play mate to our youngest.

I will never stop being thankful. Had we followed the temptation, the suggestions from many to have done something permanent instead of following what our hearts were telling us to do, we would have robbed ourselves of the joy and healing power of this one beautiful child.

 

 

I changed the name of the blog and now have my own domain!  The first blog I wrote nine months ago was titled Weathered Storms.  That is what I should have named the blog then.  My life is a series of Weathered Storms.  I am an on demand mom, but the things I write about are the storms that come along with life, not just motherhood.

I am ready to step it up a notch on my writing.  I hope to see my blog grow some more over the next year or so.  I want to be a writer.  There, I finally said it!  It only took me 36 years and two degrees that have nothing to do with writing for me to finally admit that is what I want to do.  I will go one step further by saying I really hope to write a book in the next year or two using the blogs as an outline.  It is time for me to take this serious and pursue something I always wanted to do, but never thought it could be.  Seriously, God has given me a lot of life to live thus far; it is like paint for my canvas.

September has been a hard month for me.  It is what spurred me to change the name of the blog and use it to find peace.  Writing is therapeutic to me.  I make realizations when I write.  I let go of a lot of baggage when I write.  It is one way I take care of me and it is time to take care of me.

The first week of September I was at the hospital with my three sons who have Duchenne. It was the first visit since diagnosis that progression of the disease took front seat.  It hurt.  I found myself in an intense grieving, again.  As the last two weeks have gone by, each day is a little better, but I’m still visiting that grief much too often.

It is has thrown me into a state of storm.  Anger, tears, fighting the understanding that God is trying to give me.  I have a lot brewing around inside of me.  I’ve realized that I have open wounds on top of open wounds.  For years I have been in survival mode.  Overcoming a traumatic childhood, finding some happiness with my husband and growing family only to face Duchenne and all the fear and pain that comes with it. I too regularly think, “what’s next?”

My home life as a child was abusive.  I survived and I forgave.  And I thought that was enough.  But I’ve realized I believed all the terrible things I was told about myself as a defense mechanism.   I never want someone I love (or anyone) to say or do something that can hurt me like I was hurt before.  As a result, I am not gentle on myself, in fact, I usually believe the very worst about myself; because if I already believe how horrible I am, it can’t hurt me if someone else tells me that (at least that is what I tell myself).   But it is not fair to me or the people God has put in my life. I am carrying a cross I was never meant to carry when I do that.  I don’t know why it has taken my so long to finally admit, I need to change.  I also know it is part of the other open wound on my heart.

I am a carrier of Duchenne Muscular Dystrophy.  And although my brain tells me one thing, my heart is holding on to something else.  My heart cannot forgive me for passing this genetic killer onto my children.  I know it is not my fault.  I had no idea what Duchenne was, much less that I was a carrier.  It is not a punishment for something I did. God doesn’t make mistakes and my boys are meant to be here just as they are. I have to let it go.  I cannot  blame myself.  And I’m beginning to understand that it is not something I need to forgive myself for.  Because again, it is not a cross I was ever meant to carry.

I have these big things brewing inside of me like a storm.  And then there are all these other components of the storm circling like dark clouds in the sky.  I am trying to hold on to all this pain because I struggle to believe that I deserve not to hurt. I forced myself to believe all those terrible things I heard as a child. And sometimes I just want to pout and be childish and ignore God’s will for me. And sometimes I just want to hold onto all of it because giving it to God may not give me what I so desperately want.  I want my children to live a long healthy life and I am so afraid to give it to God because I am scared he has other plans. And maybe his plan it exactly what I pray it is.  I need to take that leap and find that healing.

But I tell myself I want to be miserable.  If my children have to suffer, then I think I must suffer too.  But, if any of you have met my children…they are not suffering.  They are happy children, bursting with life and a real zest for it.  All that suffering is not meant for me.  I have to stop punishing myself, because God isn’t punishing me.  He is loving me and forgiving me, and  being patient with me.

Those are the storms I am weathering now.  It will be a process, but now it is my turn to love me, forgive me, and be patient with me.  I hope to write more about those storms, specific feelings and memories.  It will be a healing process for me.  And I hope sharing my process can help others with their own journey. It is time for me to see the rainbow after the rain. I know there will be other storms, but I am going to learn to remember there will be other rainbows too.

This is a blog that I’ve been thinking about for a while now, but thanks to coffee with a friend this morning where I explained it out loud, I was inspired to write it down.

Strange title I know.  But my world, my reality…it is strange to me. There are many days that I think this must be what Alice in Wonderland felt to wake up in world completely backwards and foreign to her.

We had pie the other night after supper.  Dishes were done and the kitchen was clean.  I was wrapping the pie in Saran Wrap when my 23 month old Mary, stuck her arm straight out and excitedly motioned for me to wrap it around her arm.

The toddler goes with us to a majority of the doctor appointments.  We don’t have family close by to help watch her and we have way too many appointments to pay a babysitter every time with our already tight budget.

Mary has been with her brothers through countless blood draws. When our 5-year-old Charlie has a blood draw he is scared to death. Over the years we figured out that a little bit of “numbing cream” on his arm before the blood draw makes a world of difference for him.  Instead of holding him down kicking and screaming, he will sit on our lap and hold our hand.

We keep the numbing cream on with Saran Wrap.  Because the toddler wants to do everything her brothers do, we  wrap Saran Wrap around her arm (without numbing cream) each appointment.  In her world, in our world, in this world we never dreamed we would be part of, that is what Saran Wrap is used for.

This makes me think of the term “service toddler.”  This is a term I first heard a couple of years ago via social media.  I remember thinking, “what?”  “How odd?” But I didn’t have a toddler at the time and my sons’ needs at the time were not as great as they are now.  But now, it is a term I know in my heart.

Now, this little girl we have been blessed with; this little girl who goes to all the appointments; this little girl knows her brothers’ needs before they do.  If they forget something she takes it to them.  If something is too heavy for one of them she carries it for them. Yes, the 23 month old can more easily carry her 7-year-old brother Rowen’s iPad than he can…one of the heart wrenchers that is part of this world we never expected to be part of.

If they drop something she picks it up.  And when they are scared or tired or burdened, she is the one that brings them smiles and calms them. Even more amazing and awe-inspiring is that with the 7-year-old she shares a twin like connection.  I don’t know how to explain it except that it is  like watching a piece of a miracle unfold every day of my life.

We have six children.  Three of them have Duchenne. Three of them do not; but it affects all six of them.  The love these six kids have for each other, it gives me goosebumps (at this point I am actually typing through tears).  It makes me wonder what I ever did to deserve to be part of it.

The youngest has learned to serve others at a year old.  The only healthy brother, is forever their defender.  If a wrong is every suffered by one of his brothers, he is the first to know and the first to act.  And their oldest sister, she is a caretaker that can give their medicine, put on their night braces, stretch their muscles; and she has shown an early interest in the medical field.  It stems from her desire to be the most help possible to her little brothers.

This love I see in action everyday; even between the normal sibling arguments, annoyances and jealousies…  This love is stronger, more fierce, more inspiring than anything I could ever have expected to be part of my world.  It is a hard, sad, joyful, blessed, stressed, strange world I am part of.

 

I’ve been treading water for the last month. June was fast and furious but we played a lot of baseball, spent a lot of afternoons at the water park, and worked hard in the garden!  So when it was time for me to leave for 5 days to attend a conference on Duchenne Muscular Dystrophy in Orlando, I was very excited for a few days to myself.

First mistake.  I was thinking about a conference on Duchenne (my worst nightmare) as a vacation.  What?  I don’t even know what I was thinking.  I spent 3 full days talking about the hardest thing in my life; the very thing that threatens to steal my children from me.  I also spoke some truths out loud there, that I had not had the courage to say at home.  By saying it; a whole new set of realities were born for me.  Realities that I was not ready to accept and that I am still struggling to fit into my world.

It was probably best to say it out loud and admit it to myself; because not two weeks later, my son is hurt, wearing a boot, and using his wheelchair daily.  I’m worried about everything from getting a lift put into the van to how quickly he will heal to how many months or years he will be walking until he can’t anymore.  And worse, is what I see on the outside, happening on the inside?  How are his heart and lungs?

Heavy stuff.  I’m not sure what my next move should be.  I’ve simply surrendered to prayer.  Admitting that I don’t know what is wrong with me, I don’t know what to do next.  But the purpose of this blog is not to burden any of you with all of that, but to share with you how those prayers are going.

I’m still feeling overwhelmed, but I can not just stop living.  We have kept up with our usual activities. I am still laughing and loving with my family for hours and hours of each day.  It is just that there is this little something nagging at my heart, like little injections of sorrow and ache when I am least expecting it.

But this is what keeps happening…like little injections of hope and peace when I need them the most.

Last Sunday before Mass I prayed one of those surrendering prayers. An hour later I was making lunch and the babysitter showed up an entire hour early.  I checked my text message to see if I told her wrong, but I didn’t.  She came an  hour early and I seized the opportunity to spend a quiet hour alone before my scheduled activity.  I went walking through a department store and found a necklace that I would not normally have bought for myself, but it was part of a huge clearance sale and was only $9.99.  It was a silver heart with a cross in the middle.

Then Monday night I spent an hour in perpetual adoration and let it all out and thought about all that was burdening my heart, weighing heavy on my soul.  At the end of my hour, no one came to take my place, so I stayed for a second hour.  That hour brought me peace I had been longing for.

And today, well I share a lot of our journey on our Facebook page for the boys.  This week I had shared how my 10 year old fell at the  end of a play he had a role in.  He fell hard and hit his head, was bruised and upset.  It was a bad night.  The very next day, he went back to his play and did it all over again.  He didn’t give up and give in.

I also shared how my 7 year old had hurt his foot, went in for an early morning x-ray before camp.  He got the bad news, got a boot to wear for an indefinite about of time, and then went straight to camp with a go-getter, positive attitude.  He didn’t give up or give in.

Someone who follows the page, stopped me this morning after dropping the kids off at camp.  She told me that my boys are and should be an inspiration to all of us.  With all they go through, she said, they never let it stop them.

She is so right, and gave me a message I so needed to hear.  I get caught up mourning all the things I wanted for them and suffering because of all the things that they have to experience.  But the thing is, they just keep on keeping on.  They are happy and joyful and mine. I am blessed.  And on top of that, God has given me a total of six great children and a husband I love to walk this path with.

God has kept me afloat always.  But as of late, he keeps reminding me that he is there.  Right now, when my cross is feeling especially heavy, he will not let me forget he has me.  It is like footprints in the sand.  When life is especially hard and you can’t go it alone, he picks you up and carries you.

 

Those of you that follow me on social media may have noticed this use of this hashtag as I’ve shared posts taking about what today is in the Duchenne world.  It is the day the first ever drug to treat Duchenne Muscular Dystrophy may be approved by the FDA.

Hundreds of Duchenne patients, parents, doctors, researchers, and advocated have traveled to the advisory committee meeting with the FDA today to share their knowledge, experiences, and support of approving the first ever Duchenne drug.  Some of those people have committed their entire lives to getting the duchenne community to this point.

I couldn’t be there today and I would be lying if I did not admit that part of the reason I am not there is that I’m heartbroken.  There are currently 3 drug companies working to get FDA approval for treatment of Duchenne.  One of the companies has already had their meeting with the FDA and it was turned down.  A second company, the one that makes the drug Translarna/Ataluren that all three of my boys are on, received a refuse to file letter. Our community can not be turned away again. Everyone is very hopeful that today is the day we will make Duchenne history.

My mind has been with my friends and Duchenne family all day, they have rarely left my thoughts and I’ve followed their updates all day.

Corticosteriod regime.  Shower chair. Van lift. Handicap accessible. Manuel wheelchair. Mobility scooter. Power chairs. ACE Inhibitor. Cough Assist. Wheelchair-bound. Fatty Embolism Syndrome. BiPAP Settings. Hospital bed. Compression fracture. Heart failure. Ventilator. Death.

Five years ago, before the boys were diagnosed, I could have read those words and assumed it was a list of things describing life in a nursing home.  A nursing home filled with many people who had lived full lives.  People who had been married and had children, grandchildren, and even great-grandchildren.  People who had careers and maybe some career changes.   People who can tell you stories about the good old days when they were young and strong and competed is some rugged sporting activity.  Or people who could tell you about their hobbies, their love for gardening and getting their hands dirty. And people whose childhood was full of running, jumping, climbing, playing.

Today, I read this list of words and it describes a my life, my boys’ lives, my family’s life.  It describes life with Duchenne Muscular Dystrophy.  And it is a nightmare.  Children diagnosed with this disease have their childhood stolen for them.  These words are the things that are happening to them at the beginning of their lives, as young children, and teenagers. As parents of children with Duchenne, we do our best to give them to opportunity to do what other children do like running, jumping, playing.  But it is a race against time, because they are progressively getting weaker and we know one day will be the last day they get to do them and that day will come far sooner that it is supposed to.

Around the time my boys get fitted for their first communion suit, they are also getting fitted for their first wheelchair.  And once comes wheelchairs, next comes van lifts and a ramp on the house.This summer we will purchase mobility scooters to use because sometimes the work of using a manual wheelchair, even with power assist wheels is too tiring for their arms.  My oldest son stayed home from his elementary school track meet today because he can’t compete in a track meet, even one designed for 4th and 5th grade students. It is difficult to try to think too far into the future, because without approved treatments for Duchenne, the future is full of loss, the loss of my beautiful boys and many many others.

But wait.  That is the point of this post.  That is the point of today.  That is why it is absolutely necessary that today Duchenne history is made!  Because there is this drug that has been developed, it treats a specific mutation, so not everyone, but the science used for this drug can be adapted to treat many more mutations and can help many more children. The boys that have been taking it in a clinical trial are walking as teenagers.  Their heart function and lung function is good. The drug is safe. This drug is drastically slowing down the progression of a fatal disease and when you slow down progression, you prolong their lives.  Parents and their children want access to this drug, they understand Duchenne and the science behind this drug.  They drug has to be approved.  It will save lives and it will promote the development and approval of other drugs to save even more lives. God willing, a drug that will save my boys too.

#makeduchennehistory

 

I’ve previously mentioned that I grew up in and out of my mom’s house.  I lived with her from the time I was a baby until the 2nd grade when I went to live in a foster home.  Then I went home for a couple of years, then a shelter for kids like me and then another foster home.  Then home for couple months, back to the shelter, another foster home and then I was done.  I didn’t want another foster home and I didn’t want to live at home.  I didn’t do it gracefully, but I made my own way.

All of those years I just wanted normal.  I wanted to live in one house, I wanted my parents to drive cars that worked, I wanted a refrigerator full of food.  I wanted a mom that came to my school concerts and have after school snacks for me.  I never wished for a big fancy house or fancy vacations.  I just wanted my mom.

I want to say that over the years my mom made it to some of my concerts or other events.  I do remember a picnic that she went too and there may have been more that she was there for, but I can’t remember in any detail her being at any other events.  I was in track from 7th grade through all 4 years of college.  I don’t think she ever saw me throw.

After a lifetime of her not being there, I did not want her there.  I didn’t invite her to high school gradation, my wedding, college graduation, to see my first child.  I went years without speaking to her or having any relationship with her.  I didn’t want to build a relationship with my mom, I didn’t want one…it was easier to ignore her than deal with all the hurt and baggage that was our relationship.

Lots of years have passed since then.  My mom is in my life again.  I let go of a lot of anger and I forgave.  We are doing the best we can.

Those things I wanted were something my mom was not able to give me.  I was mad for a long time, but time healed those wounds.  Without sharing with you my process of healing, I did come to understand why things happened the way they did.  Her life was not easy, she did try. But life is messy  and it is hard sometimes and too often it was overwhelming.  I know that she wanted to be the mom I wanted her to be.

When I found out I was pregnant with my oldest daughter I was scared to death.  I was so afraid I would be a bad mom.  It was a hard time for me, I wanted my mom and I did not want my mom.  I was scared.  But the minute I held that baby girl in my arms, all was right in my world and I became exactly what I was supposed to me…her mom.

With all the background I want to share something.  It may seem mundane or run of the mill; but it was a very rewarding mom moment.  Before I was a mom and before she was a teenager, I thought those moments I was waiting for were gradations and medal ceremonies.  But those moments I was waiting for are the moments that make up my days.

I have six kids now and finding one on one time with each of them can be a challenge.  For my oldest and I, track has always been our thing.  I’ve coached her in throws since she was 8 or 9 years old.  We spent summers traveling all of the midwest going to track meets so she could compete.

Last Tuesday, she had a great day.  She had been struggling in the shot put; but I went to her practice the day before helped her with her technique.  The day of the meet, she barely made finals and was mad.  I know what to say to her to get her going, we talked and she went and threw her first throw in finals and it was a big throw.  A personal record by over 4 feet.  She actually looked at me like, what did he (the guy marking) just say?  But she had this huge smile on her face and she was looking right at me.  She was in disbelief, I told her what her mark was and she hugged me.  Now get this, she is a teenager….in high school and she hugged me…in front of people….and did not pull away.

I was pretty caught up in the meet and was busy texting my husband.  But later that night, I was smiling from ear to ear.  I was so happy I got to be there.  Happy because the memory of that smile on her face is permanently burned into my memory.  Happy because she hugged me.  She was happy and she wanted to be happy with me.  Those are the moments people.  Those are the moments I live for.  I love being a mom.  I love being there.