It’s been a month since my last post.  I had hoped to post a weekly blog but life has other plans and we’ve been busy living it.

A month ago we traveled to Cincinnati Children’s Hospital with the boys for their biannual visit.  The visits take some wind from my sail and it takes me awhile to process everything, not to mention brood and mourn and celebrate all that we learn while we are there…part of the reason I’ve not blogged in a while.  I shared an update from our visit on our Facebook page, you can read it here if you would like:  www.facebook.com/MaxRowenCharlie/.

We celebrated Easter.  The kids had a nice long break and we spent it enjoying family.  We traveled to Kansas City to spend it with extended family we do not see often enough. It was really great because it was the first time in well over a year we traveled for reasons other than doctor’s appointments or a sporting event.  We spent time enjoying each other and were surrounded with love.  It was great.

Last week was busy.  We had two track meets, an all day field trip, a baseball scrimmage and two practices.  Over the weekend my husband played 5 or 6 games of basketball in an alumni basketball tournament.  I love the man, but I am still trying to figure out how they won so many games.  It was fun; but it definitely kept us busy. I’m going to quote my 8-year-old son here, but it sums up the fun and wonder of the weekend.  “My favorite part was watching the fat guys play!”

And yesterday.  What a great day.  We spent it in Lincoln with several other families living with Duchenne.  We cried together, we laughed together, we shared a lot with families that just get it, who don’t require explanation.  It was so rewarding.

As I reflect on it today, I’m thinking about Divine Mercy Sunday, which also happened to be yesterday.  I think, what a great example of Divine Mercy.  The people we spent yesterday with all live a version of the life we are living.  It is not easy.  It makes me remember a weekend almost 6 years ago that we were spending with a family at a youth track meet in Iowa.  We had just been diagnosed and I shared the information with my friend and the mother of the family we were with.  She said something that I have never, nor will ever forget.

She said, “You are not alone.  God gave us each other to be there for one another.  Even Jesus needed help when he carried his cross.”

Spending Divine Mercy Sunday with the people mentioned above was reassurance that God gave us each other.  We don’t have to do the hard things alone.  My heart is a grateful heart for the many people who we share this journey with and the many people that support us.

This week should be a slower week for our family. I need to clean this house because it looks exactly like the landing pad it has been for the last month.  But my heart is craving time outside, admiring and breathing in the new life that spring brings. Mostly though, I want to love on my little people. Spring feels like new possibilities and is good for my soul.

Life has been in overdrive lately.  I guess that is how life goes in a family of 8!

There has been some good and some bad in the past couple of weeks.  Sometimes I am happy to be so busy because it stops me from obsessing over the things I can’t control.  Then I look in the mirror and I see the gray hairs, the bags under my eyes, and the extra weight and I know that being so busy wears on a person. I really hate to slow down sometimes though because then I start to think and worry.

I know I write a lot about Duchenne; but it plays a huge role in my life.  What I hate most about it is what it is doing to my boys.  But what I hate second most is that it robs me of dreaming about the future.  I hate to think about the future because I don’t know what it will look like for the boys.  I don’t want to dream about amazing things because I don’t want them to crush me if it can’t come true; but I don’t want to imagine the worst because without hope life could be unbearable.

A little update on what is keeping us busy these days.  Our oldest daughter plays on a good high school basketball team and they just finished three weeks of sub-district, district, and state play.  They finished third in their class at state.  Jason and I made it to every game and took all the kids to the state tournament.  Our daughter has 5 younger siblings who adore her and think she hung the moon; although, they would never admit that.  It was fun and we are proud of her.

The day after state, our 8 year old had two basketball games and baseball practice and because the weather was so nice we took our daughter out for discus practice at a park where the little ones had fun playing in a large dirt pile. After an ice-cream break, we did some chores, made supper, and went to evening Mass.

Sometimes our family life seems like an oxymoron.  We have healthy athletic, sport loving kids that keep us busy with non-stop leagues, tournaments, and practices.  We also have children living with a chronic progressive disease that keep us busy with non-stop doctor appointments, specialist visits, runs to the pharmacy, clinical trials, etc.  It is like living in two worlds with very little overlap.  It can feel like living two lives at once.  It is probably while we are tired.

A couple of weeks ago we received news that the clinical trial drug that our three boys are on received a refuse to file letter from the FDA.  In summary, it means that the FDA refused to even consider approving the drug for commercial use in the United States.  For close to a week we did not know what that meant and were worried that it would mean our boys would have to come off the drug.  

At this point, this drug is our best chance at slowing the progress of the disease and changing the outcome for our sons.  For now the boys will stay on the drug and the drug company is doing what it can to continue to seek FDA approval.  I am taking the boys to Kansas City tomorrow to pick up another 12 week supply of the medicine for the boys and we just hope that it will not be our last supply.

We will get home in the middle of the week.  Then leave on Sunday to take the boys to their specialty clinic in Cincinnati, where they will endure three days of procedures, consults, and appointments.  They generally have the best attitude during those days.  The hardest part is keeping them fed, because we have such a busy schedule it is hard to find time to eat.  The other hard part is getting them through blood draws and any IVs.  

As long as we make sure they get to eat, they really do a good job and get through the days with smiles and minimal tears.  They are usually so tired afterwards that they fall asleep on the drive to the hotel.  But after some rest they are absolutely contented to go eat out or swim in the hotel pool.

We are busy and sometimes sad and sometimes stressed.  But at the end of everyday I am able to thank God for a long list of things.  We have six happy children; they smile every single day.  We laugh together every day.  I am doing all of this with my best friend, whom I am still in-love with and still makes be feel absolutely adored.  We have warm beds, cupboards and a refrigerator full of food, a home full of happy memories.  A dog and a cat that add to our funny stories.  The list goes on and on.  It is all of those things that give us fuel for the busy days.

  
Anchor my heart in you, Lord.

I read that in a prayer during adoration last night.  They were the words I needed.  I was trying to ask God to come and fix me.  For weeks now, I’ve felt lost, and this is the thought that had been fumbling around in my heart and I could not express.  Anchor my heart in you, Lord!

I have been so tired and overwhelmed.  Everything is hard some days.  Some days I can fool myself into a state of normal, but lately something has been amiss.

I have always been a religious person.  I have early memories of my mom dressing all of us girls up every Easter and taking us to church.  I remember my first foster home, they went to a Presbyterian church every Sunday.  I received my first bible from that church.  

When I moved to Hastings to live with my mom again, I walked myself to a small brick church I had spotted a few blocks from my house.  There I received confirmation and was baptized with all of my sisters. When I went to live in another foster home I started to attend church with them.

Faith and belief were a constant in a not so constant way of life. The churches changed and the deominations changed but the feeling I had when I allowed myself to be open to the Lord did not.  As a child my life was a bumpy ride and Jesus was my life jacket. He kept me safe.

When I met my husband in college, I believe the holy spirit was working though him to bring me to the fullness of my faith. It was in the early years of our marriage I began to love the Catholic faith and after my sons were diagnosed with DMD I began to cling to it like a life preserver.

These past few weeks I have not been myself.  For Lent this year I decided to go to confession once a week.  I was going through the motions of Lent.  I did not put a lot of effort into my first confession of Lent but found myself to the brink of tears when I heard myself say I was having a pity party instead of trusting the Lord.  The Holy Spirit working through the priest encouraged me to tell this to the Lord.

I didn’t not go to adoration that week and I found myself dreading Mass that weekend.  I didn’t want quiet.  I prepared even less for my second confession and kind of winged it when I got in there. I was rendered speechless when the Holy Spirit working through the priest told me I was down in the dumps and needed to ask the Lord what was going on with me.

I went to adoration.  Although afraid of the quiet, I wanted to be there; but for the first 45 minutes I could not hear. Finally, I looked up at the crucifix and said, “I am broken, please fix me.” That is when the words, “Anchor my heart in you, Lord,” started to make sense.

I opened my bible to 1 Peter and everything I didn’t want to hear was there in front of me.  I had been pushing God way because I didn’t want to hear him.  I wanted to feel sorry for myself.  I wanted a break; but I didn’t  want to have to need help.  I didn’t want to wait to feel better. But pushing him away was making me feel worse.

This is what I read.  

1 Peter 5:2 “Tend the flock of God in your midst, not by constraint but willingly, as God would have it, not for shameful profit but eagerly.”

1 Peter 5:6 “So humble yourselves under the mighty hand of God. 7Cast all your worries upon him because he cares for you.”

1 Peter 5:10 “The God of all grace who called you to his eternal glory through Christ Jesus will himself restore, comfirm, strengthen, and establish you after you have suffered a little.”

I’ve read and re-read the passage.  It really speaks to me and gives me guidance and assurance.  I will keep working fat it and keep praying: Anchor my heart in you, Lord.”

I just have a few minutes to blog this week. Literally! I need to leave to pick the kids up from school in 15 minutes! But, I really want to try to post something at least once a week.  

All week I’ve been writing a couple of blogs in my head about how special needs dads are sexy because of the way they love, especially my husband and another about the value of moms..I’ll post them once I actually write them but today it all seems irrelevant.

Today, actually, all week long I feel like I’ve been swimming upstream through waves of impossible decisions and no right answers.  Maybe all moms can relate, but today I am writing as a mom of children with a rare disease. A rare disease that has no cure.  A rare disease that has no cure and is slowly progressing through my child’s entire body.  A rare disease that has no cure and is slowly progressing through my child’s entire body and effecting every single thing they do every single day.

Do you feel overwhelmed reading that last paragraph?

Man, it feels very overwhelming to write it because behind every word is something I’m worried about, or battling, or fearing will happen to my babies.  It is a hard way to live.  

Everyday is not like that.  I try hard, I’m sure all of us are trying hard to take care of ourselves, to get away for a little bit here and there.  And I say trying ‘hard’ because it is actually a very hard thing to do when you are caring for someone with a rare disease, a chronic illness, a progressive debilitating disorder.

On the days we can’t do that…get away, take care of ourselves…it is usually because something has hit like a tidal wave.  It seems like just one thing never happens…it seems like it is always 10 things that happen all at the same time.

The only point to this blog is to say I hear you out there moms.  I feel you.  It is one of those weeks.  But we will make it through, we always do.  We will be able to decide on a medicine that will help our little one…we will find one with the least side effects.  We will resolve that issue with the IEP, we will shove the fears about the future out of the way. We will find time to spend quality time with our other children.  We will laugh with our kids.  We will get our snuggles in at bedtime.

We will have that day at the spa someday. For now, take a deep breath.  Find a quiet minute and then keep on.  Because you are a good mom and you are doing the best you can.

Trust me, that last line is intended for me as much as anyone else.  Sometimes we just have to remind ourselves that we have a hard job and we are doing it well.

As I sat down to eat lunch today I logged into Facebook.  I clicked on the link that shows me what I posted years prior.  Five years ago today I posted that we learned Rowen also had Duchenne Muscular Dystrophy.

Max had been diagnosed six months earlier when I was pregnant with Charlie.  We waited until Charlie was born to have Rowen tested.  I was scared that if Rowen was tested and diagnosed during my pregnancy, my grief could put my pregnancy at risk so we waited.

I don’t remember the phone call or who I talked to. I do not remember very much about that day.

I remember July 10, 2010.  That was the day Max was diagnosed and I remember every horrible detail.  But when I realized that today was the anniversary of Rowen’s diagnosis I can only remember one thing.

I remember sitting in the hospital cafe and watching my 2 year old son with the biggest brown eyes eating a bowl of ice cream.  Rowen had screamed during the blood draw and I wanted to make his day better, so we had ice cream.

I know the reason I don’t remember the phone call or much at all about that day was because I did not need a test to tell me what I already knew.  The minute we learned that Duchenne was genetic and that our other sons could be at risk if I was a carrier, I knew in my heart the 18 month old baby sitting at home with his grandparents also had Duchenne.

The six months between the the two diagnosises I was in mourning and I was in denial.  I was a crying, begging mess.  I was desperate for it not to be true.  I remember rubbing Rowen’s calves each night until he fell asleep stubbornly praying that I could heal him. Large calf muscles are a symptom of Duchenne and Rowen’s were as big as his brother Max’s.  I desperately wanted to pull the Duchenne out of his body.  I cried many of those nights begging God to take it away.   Many of those nights I begged God that the baby I was carrying would be saved from Duchenne as well.

I spent a lot of time begging and bargaining with God in the 18 months it took for all three boys to be diagnosed.  I desperately wanted God to be wrong.  I wanted to wake up from the nightmare my life was becoming.

By waiting six months to have Rowen tested and another six months to have Charlie tested the only thing I prolonged was having to accept the truth.

That was five years ago.  Our family has come a long way since, we have accepted the truth and we are living our lives the best and happiest way we know how.  We survive the hard days, we celebrate the good days, and we hope for lots of days.

I don’t want today to be a bad day.  The only thing I remember about this day 5 years ago is ice cream.  So I’m going to the store and I’m going to buy a bunch of ice cream and as many toppings as I can find and we are going to have the biggest bowls of ice cream for dessert.

Life has a way of beating you down sometimes.  I think all of you could feel the weight of what I was feeling last week in my blog post.  I was feeling pretty beaten up or down I guess is better way of saying it.  The way I was feeling was draining me and the last thing I wanted to do was wake up on Friday at 3:45 am to catch a flight to Dallas to attend an advisory council meeting for PTC Therapeutics and return home around midnight on Saturday.

PTC Therapeutics is the company that makes the trial drug Ataluren/Translarna that my sons take as part of a clinical drug trial.  PTC invited a small group of parents to a meeting to better understand the impact Duchenne and the trial drug have on the lives of children, young adults, and families and how they could help.

As I mentioned, I was wanting to stay home. Thursday of last week, it felt like Duchenne broke me a little and the last thing I wanted to do was leave my home and my family.  My home is my safe haven and that is where I felt like a needed to be. But I had committed to the meeting I was going.

Once I made it to airport and survived the early morning drive in the dark and cold, I felt better about going.  It had been years since I had flown without kids and that alone made it a more relaxing experience.  When I arrived in Dallas a car was waiting to take me to the hotel.  I felt spoiled when the driver had a little sign with my name on it, carried my bag for me, and had little water bottles and a newspaper waiting in the back seat for me.

I know it may not seem like much, but it meant a lot to me and as I look back at it now, a reminder that it is necessary that I quit sacrificing all of me for the ones I love.  Part of the reason I have felt so defeated lately is because I am running on fumes. It took 6 hours away from home and I was able to figure that out; already the trip was helping.

I felt pampered the rest of the trip.  I had a quiet lunch alone on a balcony, I took a nap before my meeting, and was able to take a long shower a long time getting ready.  A dinner had been planned for those attending the meeting.  Nobody spilled food on me, I didn’t have to remind anyone about table manners, the waiters never let our wine glasses empty, and I enjoyed great conversation.  The next morning the group had a beautiful breakfast and as we worked through the agenda of our meeting, we discussed important things  in our lives and the lives of our children and we were productive.

We were treated very well; but the best part was being with people who live a version of my life when they are home.  It was very good for me to be with the parents I was with; because we all share something. It is something unspoken, but very well known. It is something that is felt, not anything that is said or written.  It is a safe place to be happy, to grieve, to laugh and to cry.  If there is a silver lining to Duchenne and I believe there to be more than one, it is the community of parents, advocates, scientists, and doctors that I became part of at diagnosis.

I end this post with a grateful heart for those parents living and thriving and fighting for their children in spite of the challenges. They make me better.

I try hard to be positive and find the joy in the little things. Sometimes though, I just can’t.  And if my body is a vessel, then today my vessel is too small to hold my soul and my heart and my love and all the suffering, stress, anxiety, and sense of sadness I’m holding now.

January is catching up with me.  Most months are not like this, thank God.  But this one has been something. And please do not read this and want to fix anything…I’m venting and I’m sharing so that the other parents out there that are feeling the same way know that they are not alone.  We all have these days and weeks and months and it is okay to feel defeated for a little bit before you get up and dust off.

This is what life has looked like this month.  There was a teacher at school who made a big deal about helping one of the boys get a chair to sit in so he could have back support, as in, she would not get it for him (that means I’ve had a meeting at the school and I’m working on a ‘cheat sheet’ of his IEP to give to faculty and staff that do not work with the boys daily).

We’ve consulted with an oral surgeon to decide if the risk of anesthesia is worth having wisdom teeth pulled out (we are not having the procedure done).

A man in a parking lot harassed me in front of my son for using a handicap stall for my son (to the point I was afraid to go back out to the parking lot in fear that he would still be there).

We found out our son was receiving a placebo for the first year of the trial he participates in (while grateful he is in the study and has been receiving the actual drug for the past year; it was a kick in the gut to learn that another year of allowing the disease to progress through his body had passed.)

Kids have had strep throat, my husband was traveling for work, I’m behind on sleep, I going to miss two of my daughter’s games because I’m leaving on a whirlwind trip to Texas to attend a caregiver/parent advisory meeting hosted by the pharmaceutical company.

I don’t usually like to admit it, but I’m exhausted and overwhelmed.  There is no book or list of recommendations anywhere on how to do this.  I know I’m doing things wrong, but I’m trying really hard to do things right; to raise my children; to love my husband.  Lots of times there is nothing left, I’m a lousy friend, and sister, and daughter.

My vessel is not large enough to hold all of this…not today at least.  All I can do today is offer it up. I’m thinking of two special women from my church community and I’m offering my suffering and stress and all of the feelings spilling out of my vessel for them. And I have to trust that God will be the wind to fill my sail and get this vessel moving again. And soon (I’m hoping very soon) I will feel better.

This is my beautiful son Rowen.  Today is his birthday.  He turns 7.  The years are flying by lately.  I remember holding this boy when we was just 8 pounds and wrapped tightly in warm blankets.  And now, he is in the first grade with plans of his own…trust me, if it’s not his idea, it’s going to be a hard time getting it done.

Rowen is not my first child, in fact he is my fourth of six.  Almost 15 years ago, when I was pregnant with my first child I was scared out of my mind.  I was a junior in college and up to that point becoming a mother was not something I was sure I would want to be. Obviously, God had planned on me being a mother and I love being a mom.  I started loving it the minute the doctor laid a baby girl in my arms.

I did not know that before I held her though. I didn’t know how to be a mom. My relationship with with my  mom did not exist at that point. Foster homes and the social service system I grew up in never left me feeling loved.

I was scared I would give my child the same life because that is all I knew.  I did not want my beautiful child to ever feel the way I had as a child.  At that point in my life, I didn’t see a lot of good in myself.  In fact, being a mom, no matter how young or unexpectedly I became one, was the one good thing I knew about myself.

I prayed that my children would be like my husband.  I wanted them to be un-scarred.  I wanted them to make friends and to laugh as easy has he did.  I wanted them to have the confidence that he possessed.  I wanted them to know happiness. I did not want my children to be like me.

My first child, a daughter, is her dad through and through.  My second child, a son, has his dad’s sense of humor and people are naturally drawn to him, just as they are to my husband.  My third child, another son, makes a new best friend everywhere he goes and has never met a person he doesn’t like; just like his dad!

Rowen is not like his dad.  He is not like one of his brothers or sisters.  Rowen is a force to reckon with (but the good kind though, like “May the force be with you”).  He is strong willed.  He is independent. He is smart.  He is an introvert.  There is no reasoning with him; mostly we just spin it so it sounds like it was our idea! He always thinks he is right. He likes to be in charge.  He is just like me!  After all those prayers asking God to have my children take after their father, Rowen took after me.

God gave me a beautiful baby boy.  He gave me Rowen.  Rowen is amazing.  I see his strengths and his beauty everyday.  I am in awe of the way he handles the challenges his disease throws at him.  God made him to do this this life.  All of those things that Rowen shares with me, makes him exactly the child God wanted him to be. Why can I see that it Rowen and for years I could not see that in me? It is one of those ‘God works in mysterious ways’ things. Rowen shows me  good where I used to see something else.

Happy Birthday sweet boy.  I am so glad I am your mom.  I’m so happy you take after me.