Hello all!  I feel good today. I’m feeling good lately.

I am generally an active person.  I generally feel organized and like I have a plan for my day and my week.  I generally feel l I do a good job of taking care of me so that I can take care of my family. But slowly, I stopped doing all of those things.

Thanksgiving hit and then Christmas and high school basketball started.  By the end of it in late March I was treading water.  Suddenly it was Easter and I was exhausted ALL THE TIME.

I had gain 10 lbs and my clothes were not fitting right and that alone makes a girl feel bad. I  was too tired to do fun little things with the kids.  I was short and was yelling and I didn’t like the mom I was being.

Somewhere in a 6 month span I stopped taking care of myself and I did not have enough left to give to anyone else.  Moms read this all the time.  We know we are supposed to take care of ourselves!  And not feel guilty! BUT, it was very easy to tell myself I was taking care of myself  because quite honestly, I didn’t want to extend the energy I did not have to do one more thing.

Oh the difference a little time can make.  At the urging of my husband and the realization I might have been a little crabby I went to get my nails done 2 months ago.  It felt good but was like a band-aid.  The next step: I bought some wrinkle cream for my face (something I had just stop doing somewhere along the line for God knows what crazy rationale I was using).

At that point I’m starting to enjoy a little time to myself.  I’m starting to see that I was, in fact, not taking care of myself.  I scheduled a hair appointment and I had my hairdresser die my hair instead of the box die I had used for the last 6 months.  And I started working out regularly again, not a lot, but like 2 times a week.  I even went to the library and checked out a book (I haven’t started to read it yet, but hey, I can re-check it out!)

I slowly stopped taking care of myself and I had to slowly start again to really see the value. Two weeks ago I started a 30 day workout video program.  20 minutes of exercise everyday and I feel like it is a good workout… I mean, I am dripping with sweat when it is over, seeing some results and it is a  great stress reliever.  And just this week I started a natural supplement to boost energy.

Why did I ever quit doing all of this things?  I feel so much better.  I am laughing and joking more.  I keep busy during the day doing laundry and meal prep so that my evenings are more focused on the most important 7 people in my life.  I am so much less stressed.  I found time to do things I enjoy like working in the yard and spending time with other DMD families, this week I even met a friend for a walk around the park.

If you are reading this and you are a busy mom or you are reading this and you feel like you are treading water:  take a break and do something for yourself and then make it habit.  I feel like my old self again.  I would have never let my kids go so long without doing the things that keep them healthy.  Not only, I was setting a bad example, but by not being healthy and energized I was not the mom I like to be.

 

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.