Small Vessels

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.

 

 

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My Son is Just Like Me

Rowen

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.

Small Acts of Love

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A note I sent in Rowen’s lunchbox that came back with a little note for me.
This past fall, in an attempt to do something for myself, I went back to a Mother’s Prayer Group that I had previously attended.  It didn’t work out for me to attend very regularly, but I kept working through the study, Momnipotent The Not-So-Perfect Woman’s Guide to Catholic Motherhood by Danielle Bean.

I doubt myself.  I do.  I wonder about the decisions I make, I get mad at myself for getting mad at the kids, I get tired, etc.  Parenting is hard.  Being a grown up is hard. Too often, I reflect on all the things I think I do wrong and how I can be better.  This is what I took from the bible study: God gave us the gift of his very life. He waits for us to return his gift with our complete gift of self. We can do this one small act of love at a time.

All of this was bouncing around in my thoughts the week my kids went back to school after Christmas break.  I was full of anxiety.  We had a great Christmas.  We were able to give the kids the gifts they wanted the most.  We dressed up and went to Christmas Eve Mass (usually it is a struggle to get them to wear a collared shirt). We spent Christmas morning together just the eight of us.  The kids spent the day enjoying their new gifts and we all delighted in the stress free relaxed feel of the day.  The day after we were able to spend time with my husband’s family and the following day with my own mother and some of my sisters.  On New Years Eve my husband and I went out to dinner with good friends and then made it home in time to do our homemade balloon drop and ring in the New Year with the kids.

It may not sound like much, but it felt perfect and my heart of full.  Why was I full of anxiety when break was over?  I was scared.  The break was so good, the holiday was exactly as I wanted it to go.  I was scared to let it end.  What if it would never be like this again.  What if one of the boys takes a turn for the worse?  Rowen will have his first cardiac MRI this spring.  What if they find something wrong?  Those are the types of thoughts that were haunting me.  Typing them out just now makes my heart race and eyes are welling with tears.

Life always goes on, tomorrow always comes.  The kids woke up that Monday morning and I packed their lunches like every school day.  I put little love notes in the lunch boxes to help me with my anxiety.  While they were at school, I took the tree down and had lunch with my oldest daughter.  The day went on and the days kept going on.  My anxiety eases.

But that very first day, that Monday, as I unpacked their backpacks and lunches after school, I found a note in my first grader’s lunch box.  It was the note I sent, but below my message, his teacher had written, “I love mom.”  He blushed and was embarrassed when I found it, he wouldn’t tell me if he had asked her to write it.  (My son has very weak hand muscles and often dictates to the  aides and teachers.)  It made my day.  It was such a small gesture, but it made me smile and laugh and breath.  It was one small act of love. I was very grateful to the adult that helped him. I was grateful for my son’s sweet heart.

One small act of love.  That was all I could think of.  That small act of love meant and still means so much to me.  I have the note tucked in my windowsill above the sink so I can see it when I’m doing the dishes or cooking.  I was focused on how to give those small acts of love, I was completely blown away to receive one.  It made me feel the way I want others to feel, my children, my husband, my friends, everyone.  Grand gestures are wonderful, but in my life the most meaningful ones are often small.

 

 

Weathered Storms

I’m very new to blogging.  In fact, I have started and deleted several blog posts over the past 3 years in an attempt to start; this is the first one I’ve had the courage to share. This is something I’ve been encouraged to do by the ones I love, my husband and 6 children, brother-in-law, and lots of other friends and family.  It is also something I feel called to do. And so here it goes:

I think if this blog is to be successful, readers need to know me.   My childhood was rocky at best, a series of weathered storms. I never really knew my biological father and my step-dad was in prison for several years of my childhood and then died when I was a teenager.  During those years my siblings and I often lived in foster homes or shelters.

Surviving that and finding my husband and starting a family was supposed to be my happy ending.  Then my son was diagnosed with Duchenne Muscular Dystrophy, a genetic fatal progressive muscle wasting disease.  His diagnosis then led to the same diagnosis for two of his brothers. Life since D-Day (diagnosis day) has been another series of weathered storms.

I use the words ‘weathered storms’ because I think they best describe surviving, coming out on the other side of a difficult situation but not coming out unscathed.  I weathered the storms, but each of them affected me, changed me.  I used to tease my husband that I was like a bargain wife…he got a good deal because I was damaged goods, like the dented cans you can buy out of the clearance cart at a grocery store.  Looking back that was probably a harsh way to describe myself and it was a description my husband would never accept. But accurate, in that I was damaged, but still good.  Surviving something hard changes you, sometimes for the better, sometimes for the worst.

I remember a conversation with my older sister.  After my boys were diagnosed she was hurting for me.  She had said something along the lines of it not being fair that after a hellacious childhood, half of my children would have this awful disease. There were times I thought those same things, but what I believe is that all of those childhood years of challenges and heartache taught me to fight.

I survived my childhood. And although full of quirks because of it, I did become a strong fighter…the exact kind of fighter my children need me to be…the exact kind that has the courage to tell doctors I think they are wrong, the exact kind that can be with my children at hospitals and keep them smiling and happy no matter how much I am hurting on the inside.

Surving starts to mean something else after a storm.  It is not just living through something, but learning to live after something.  It wasn’t until my children were diagnosed that surviving meant making the most of every minute and enjoying my family in spite of what the disease was doing to the boys and to our family.  I learned and am still learning that even strong fighters cannot do it alone.  I need the kindness and support of others, the love of my husband and children and the faith that God is with me every step of the way.

The first series of weather storms made me a fighter, sometimes a viscous fighter; too independent; and sharply jaded.  The second storm in my life, the diagnosis and beginning stages of Duchenne rounded out the jaded edges, lowered the walls I had built around me.  I had to learn to accept help and love. Weathering the storms in my life is helping me become the mother I never knew I would need to be.