Max’s Blessings

I met Max at school yesterday at 11:05 so that I could carry him downstairs to the lunch room. It’s the same most days.

Yesterday, as he was on my back he rested his head on my shoulder and told me Wonder was out on DVD. He wanted to see it.

He told me that Mr. A (the teacher of the class just before lunch) gave a speech on being Kind. His teacher told them that somebody might be having the worst day and you can either make it worse for the person or you could make it better. Even a smile can make someone’s day better.

At that point he was almost whispering and he said, “it reminds me of me.”

We were to the bottom of the stairs and I lowered him to the ground. Lots of days be hugs me and I go upstairs to wait for him.

Yesterday there was no hug and he walked off down the corridor with one arm outstretched running his hand along the wall and holding his lunch in the other.

He was deep in thought.

Less than 2 hours later a text from his study hall teacher dinged on my phone. He was telling her he was very tired. She thought he looked a little sad too.

I had a hunch I knew what was going on. It was the melancholy deep thought he was in when I left him at lunch.

He came home. He was sad. I could sense tears just under the surface. He told me his legs hurt when he walked. He looked exhausted.

At home he surfed through the pay per view channels and found the movie Wonder. We ordered it and watch it together. At the end of the movie his eyes were welling with tears.

I sat next to him. I told him he could tell me anything.

The tears started and he told me to go away.

I was fighting back tears. I needed to make sure he was ok. So I asked him to tell me if the tears were because he was hurting because kids are mean or if they were because he felt blessed to have so much kindness in his own life.

He said the tears were because he was so blessed.

He is so blessed. He is 12. He has a rare disease that is slowly robbing him of his independence. He is the smallest kid in his class and is the only one in the building that uses a motorized scooter to help him around. He needs help on the stairs and in and out of the van. He needs help with almost everything.

With all of that in mind, yesterday when his teacher talked about kindness, he saw his blessings.

His friends are kind. His teachers are kind. He told me he never feels like people stare at him unless we are out of town and have all 3 boys on scooters.

He was overcome by his blessings. He felt so much emotion that it exhausted him.

We both cried. He were so full of gratitude for our blessings that our eyes were leaking. Kindness is a beautiful thing. Everyone deserves kindness. I’m thankful that Max is embraced with kindness.

Shrapnel, Memories, Love, Joy & Walls

I want to write about shrapnel. Shrapnel. The word I’ve decided to use when a little piece of something from the past lodges itself into the present unexpectedly.

There is also my first memory and its reality or lack there of. It’s very vivid and has been my whole life. I think I remember it through interpretation. My childhood mind trying to make sense of something outside the understanding of a child. Instead of a memory, it seems more like a story told from a child’s point of view. As an adult I see through the childhood interpretation, but without someone to tell me what really happened, it’s reality is a question.

All of these blogs will someday be pieced together to form the book I know I have to write and this earliest memory is giving that book a shape, a beginning. I’m excited and scared to write it.

I need to write about love. The amazing love I found through this blog. For the longest time, and I’ve shared it previously, I felt unworthy of love (shrapnel). I am loved though.

I realize my true struggle was always loving myself. My defense mechanism for the majority of my life was to be harder on myself, to hate myself more than the way I perceived others felt about me. That way when someone in my childhood didn’t show up or failed me or hurt me in some way, it would never hurt as bad as what I already believed about myself.

Writing it all out, my journey with joy, the loss of my sister…it all suddenly became so clear. I am the one that needs to love me and needs to be kind to me.

I read a passage today in a book about joy.

“There is a wall in my heart that I know was erected as a protection from being hurt. But I am ready to let it come down so that my heart can heal.”

This is the perfect description of where you find me today.

A big part of finding myself ready to let it come down is faith, my family, my husband, motherhood you, your gifts, the little notes, the kind words. They made me realize that if a person that barely knows me can think of me and see good, then it is time that I do so as well.

I gave an interview today. It was an interview on parenting children with exceptionalities. It was a more difficult interview than I imagined. There was conversation about what I hope for my children’s future. I cried. It is hard for me to think of the future because when I do my deepest fear of my children not part of it is there, in my future. It forces me to think about the uncertainties. I don’t like it, it hurts.At the end of the interview though, I was able to say to myself that I am doing a good job as a mom. I’m not perfect, I still beat myself up sometimes (shrapnel), but I think I’m doing a good job. I think I am not a perfect mom, but I think I take good care of my children.I might as well have moved a mountain. Love is changing me. The wall is coming down.

Thoughts for My Birthday

I turn 38 this week. I know some think that sounds old, more of you probably think it sounds young. I have had enough hard life experiences though to make me feel much older than I am. I sometimes do not believe how much life has been squeezed into only 38 years.

I have often been told I have an old soul. I agree. I love simple things. I love old music and black and white movies. The fast paced world of today does very little for me. I love living in a small town in a rural part of an agricultural state where life moves slower.

I love a house full of Christmas decorations in the winter and a garden full of vegetables in the summer. I want to be surrounded by my dogs and my kids. I look forward to being the Grandma Betty that bakes cookies the grands love and giving them Christmases at grandmas house that give them happy memories to savor long after I’m gone. I love being my husband’s wive. I love to be home.

As year 37 of my life comes to a close it does not do so without painful memories of experiences life brought me in the last 12 months. It was a difficult year to say the least. It took a toll on me. I’ve gained weight. I’ve lost sleep. I’ve cried many tears. I’m tired. I have anxiety attacks.

I have not counted my troubles though, but my blessings instead.

Counting my blessings, finding joy in the journey; that has been the best medicine for my anxiety, the strongest prescription for my broken heart.

I am broken and changed, but I am happy.

Today I am counting 38 blessings; one for each year. This is my gift to me. This is what I count today.

  1. I am married to man that makes it possible for me to say to my daughters, “marry a man that treats you the way your father treats me.”
  2. My children are happy and smile a lot.
  3. I have a village that is 100 percent committed to all the children in it, including mine.
  4. I like to workout and it makes me feel better.
  5. I have a soft bed.
  6. Although there is no cure for Duchenne, my boys live in a time where treatment is available and research is bringing new and better treatments that may change the outcome for my sons.
  7. We have a chairlift that takes my boys up and down the stairs to play PS4 in the game room.
  8. My children are brave.
  9. My children are not shy.
  10. My husband works hard to provide for our family.
  11. My kids love me.
  12. God is good.
  13. When it is cold outside, I sit inside a warm house.
  14. I have cars that start and that are reliable.
  15. I found a chicken dumpling recipe today that made me remember someone very special. I’m making them on my birthday.
  16. Every time I think I need to paint my living room a new color I remember my oldest saying it wouldn’t look like home if I did.
  17. We’ve given our kids a home, not just a house.
  18. We’ve been happily married for 16 years.
  19. We have access to good medical care.
  20. I have dogs.
  21. My cat sleeps curled up next to me.
  22. I have a husband that hates the cat and still lets it sleep curled up next me.
  23. There is always food in our cupboards.
  24. My children wear clean clothes with no holes.
  25. My kids are in a great school system.
  26. There is a new library in my town. I love to go to the library.
  27. We have a favorite place to eat. Macho nachos are our favorite food at our favorite place.
  28. After 18 years of macho nachos at our favorite place, I can now make them nearly as good a home. There are times when you just need nachos.
  29. I have 6 children. I love having a big family.
  30. My youngest child looks just like me.
  31. My oldest child is a good person. It gives me faith we are doing something right and the youngest 5 will be good people too.
  32. I have hope.
  33. My children know and love their cousins. We love our nieces and nephews.
  34. My husband’s side of the family is my side too. They love me and make me happy.
  35. I have sisters. No matter what, I love them and they love me.
  36. St. Cecilia’s Catholic Church
  37. We have a deck that I can thaw out on when the AC makes me too cold.
  38. That God gave me a heart to count my blessings and not my troubles.

May our blessings, mine and yours always outnumber our troubles!

Birthday Boys

My birthday boys, then and now, will be 7 and 9 this week. I’ve been in the worst mood the last two days. At first, I thought it was the more typical mom feeling of being taken for granted and feeling like the last one anyone in the family considers, me included.

I was wrong. It hit me this morning. It’s the fact that my babies are another year older. I’ve not typically struggled with birthdays and holidays with my boys. The celebrations of them being here with me has been such a fun and bright part of the birthday that I didn’t think a lot about the fact that I don’t know how many they will have, or the changes that have occurred in the last 12 months or what they will lose in the next 12 months.

There is no handbook on how to raise a child with a terminal illness, more specifically Duchenne, more specifically three very different boys with Duchenne. I question if I’ve made the right decisions for them. I wonder what the next hard decision will be. I have to accept that I have to trust that I made the right decision with the information I had at the time. And trust that I will make another best decision if that information changes.

This was a hard year full of battles and changes. We are still waiting and fighting for FDA approval of Ataluren, the insurance battle for coverage of another important medicine is still ongoing. At home we installed a chair lift and built a ramp.

We know that soon we need a new vehicle because although I am strong and work hard in the weight room to be able to lift the boys and their scooters into the van, doing so long term is not practical.

When we were first diagnosed we were told the boys would be confined to a wheelchair by the time they turned 9. We found a better doctor and we know because Max that 9 is not the average anymore and that it is 12, 13, 14 and older now before boys stop walking completely.

But, Rowen is going to be 9. There are things that are becoming increasing more hard for my son and he needs growing amounts of help. Bathroom modification is necessary sooner than later. If we are forced to stop using Ataluren in the next year if it doesn’t gain FDA approval, it could be 9 for Rowen.

Last Saturday we couldn’t get a handicapp parking spot and because of snow and frigid temperatures I asked the boys to walk further than usual so I would not have to unload the scooters…there was a door close to us that we could enter and then just walk the hallway to get to the gym on the other end of the school. It was really really hard for him. I’m actually crying now because I felt so bad for not taking his scooter. Seriously, his muscles don’t work like mine and everything is hard for him, but I decided it was too cold to help him by getting his scooter. I feel like scum.

And yeah, I’ve been so damn mad at my husband for leaving me to travel alone with the boys. And I hate that, because they are my children. I hate that sometimes traveling alone overwhelms me. I hate that I’m mad at my husband, he is my partner in all this and really we can’t afford to me mad at each other.

Then last week at church, it was just me and Rowen. He wanted to lift his legs up into the pew. He could not. He had to grab the material of his pants and pull up to get his legs up. It’s those little things I notice that eat at me.

This post really has no lesson to be learned. It is just this. Duchenne is hard. These birthdays are hard for me this year. I do know though, that it would not hurt like this if I didn’t love them so much. To have this love for them, to have them, to be able to celebrate them though….I would take the hurt and stress a million times over…my children are my everything and we will celebrate them this week and always.

Joy, Always

So I’m up at the Y, riding a stationary bike and I realize it is the only time I have to write this.

I wanted this to be profound and my best writing yet, but I can’t find words of my own.

This year I learned than Duchenne is not the worst thing that can happen. Duchenne has actually brought me mercy and grace this year. The many times I wanted to fall apart because we kept losing ones we loved, Duchenne saved me.

I could not fall to pieces. I had to keep my stuff together for my boys. I couldn’t just lose it. I had to keep track of their care, their appointments and keep on advocating for better care and treatments. The job that Duchenne can be, kept me going.

It was not some inner strength. I am an independent person. It would have been my norm to just keep on plugging away on my own. I would failed miserably.

I had nothing left to give of myself. So I gave it all to God. And through the ups and many downs of this year. It was the words in my rosary companion that kept sounding off in my head. That kept me going on the right path.

Please know that it does not mean I prayed the rosary repeatedly, I should have, I should have leaned more heavily on prayer. But I was too tired. I had nothing left to give and so I gave it all up.

These are the words that kept me going. And they are the words that I will take with me into the near year.

  • Start from presence, not impossibility or nothingness or darkness.
  • His presence is basis for true joy.
  • There is no human circumstance that warrants despair because there is no human circumstance where He is not present and so there is never reason to abandon hope and joy.
  • Joy comes from being loved.
  • We experience great sadness in life simply because we forget things, like love.
  • Anticipation is half the pain and sorrow.
  • Anticipation is half of the joy.

I know that I am loved. I know that He is always with me. I don’t ever want to forget love, namely His love. I will never quit hoping, even during the hardest of days. I will always search for joy.

Happy New Year! Prayers for peace, healing, and joy for all of us.

Funeral Dresses

Last spring we stopped at a Marshall’s. I don’t remember what we were looking for, but there was a clearance rack of dresses. I knew I had an important meeting coming up and looked for a dress to wear. I found a black dress with a floral design. It was shorter and more stylish than the dresses I prefer to wear, but it was very pretty and I felt brave. I purchased it. I hung it in the closet and really didn’t know if I would ever wear it, but was happy to know it was mine.

Since spring I’ve attended 4 funerals. In May, my father-in-law died. And although we could see it coming, that 5 AM phone call from my husband telling me he had passed instantly stung my eyes with tears and seized my stomach with fear and anxiety as I knew I would have to tell his grandchildren.

Steve deserves his very own chapter in this blog of mine, and I’m not ready to write it. The one thing I want to say though, is that he was a father figure in my life longer than anyone else that might have called me daughter. It was a loss that left it’s very own void in my heart. Then to watch my husband mourn his father was another heart wound all its own. Even now, there are things we should be calling him for and there is no phone number to reach him at.

I wore that black flowered dress to his funeral. What I remember most about that dress is how it felt against me as my husband tightly wrapped one arm around my waist during the funeral. It was almost as if he was holding on to me so he wouldn’t fall over. I was strong for him that day. I felt brave when I bought it and I felt strong when I wore it. He may never remember holding me that way, but I will never forget it. The grip, how tightly it wrapped the dress around me. It was strong and compelling and comfortable. It’s the way Steve would want us all to feel.

Ten days later my husband’s aunt passed suddenly. She was my mother-in-law’s twin. She was kind and gentle. I can remember a time she sang a lullaby to one of the boys. I remember her sitting on my deck and I love the crystal wine glasses she sent us as a joke.

I wore a different dress that day. It was an old dress. I bought it when I was in my 20’s. It was not a typical dress for a 20 something, but I wanted something traditional. It is a knee length black dress. There is a sparkled broach that pulls it together in the front. It has stood the test of time. Traditional. Classic. Timeless. Beautiful. Things that can be described with those adjectives, they don’t go out of style. They are always. I’d like to think the same of our Aunt Linda.

Then fall came. My sister. My little sister. She had a heart attack and never recovered. This one hurt the very most. She was so young. She had never married and had no children. It still seems not enough. Not enough time. It happened fast and traumatic. And parts of it were slow and excruciating. My time with her was not enough. I am trying to find a way to live with how much time I didn’t spend with her. I miss her, not only her, but I miss the time I didn’t have. Time I didn’t have when I could have and the time I can never have now.

I wore the black, floral dress to her funeral. Dani was beautiful. She could have been a model. I wanted to be beautiful for her and that stylish dress with a pair of heels made me feel beautiful for her.

And then just today. Only a couple of hours ago. A friend’s mother. A friend’s grandmother. I had only met her in passing, but I cared for her in the way you care for the ones that are important to the ones that you care for.

The morning that she passed, my friend text me that her mom was gone. I could read my friend’s pain in the lines of the text. A pain I could recognize from the loss I have endured these past 6 months.

The lines of that same message created tears of gratitude and humility. Her mother had suffered a great deal during a 4 year battle with cancer. She never complained. Instead, she offered up all of it. She offered all of her pain and all of her suffering so that 3 little boys and their family might suffer less. She offered all of it up for Max, Rowen, and Charlie.

I wore a longer black dress. It is cold today, so I wore boots and a black sweater. I wanted to be warm.

DeDe had not spent much time with any member of our family. We did not have an opportunity to know her well, but she loved someone who loved us. It is humbling to be given a gift so big. There are some things that mean so much to you, you know it can never be repaid. I can only hope that someday I can be that to someone else. Her gift was one of warmth, during a very difficult year.

I learned so much about love from loss this year. It taught me that loving someone who is fragile and vulnerable is a soft and delicate love. It is a love with an ability to pull people together and deepen already existing love.

It taught me that having someone to love you and care for you when you are vulnerable and fragile is gift.

Loss taught me that death doesn’t wait for you to reach out and forgive. It doesn’t wait for you to better a relationship. Loss happens on God’s time. Loss taught me that you can’t take advantage of anything, don’t wait for a perfect time or a perfect place. It taught me to hug more, laugh more, cry more, say what you mean, love hard, give freely, forgive always, be kind to yourself, love more and then love some more.

I’m going to find a dress that says all of that. That will be my funeral dress.

No escape

I woke up on a Wednesday morning inspired to write a blog about joy. I wore a ‘joy’ shirt and took a selfie for the blog.

Then came the phone call. I never wrote the blog. I had no idea life and people could change so quickly. 48 hours later I took a second selfie because I never wanted to forget.

How naive of me to think that I ever could. I’m having a hard day. I don’t remember the last thing I said to her and so mad at myself for never answering the last text she sent me.

She’s been on my mind and my heart all day. Last Saturday I swore I saw her walk into a basketball game. The same blonde hair, a big hoodie, I had to look twice. My mind is playing tricks on me.

Today in a waiting room there was a young girl. Something about her reminded me of Dani. She was there with her baby. She was doting on him, grinning, so obviously in love with her child. I hope that somewhere in heaven Dani is holding a baby and just as in love and happy.

A broken heart seems an under statement. There is a hole in my chest. My throat hurts, it aches when I cry. I have to take deep breaths.

She was born on Thanksgiving. Although this Thursday is not her birthday, it does not escape me. I had looked forward to the holidays. I thought it was going to be different for me, that the holidays would be ok. I was wrong.

If she were here, she would have stayed in Oregon for Thanksgiving and I wouldn’t have seen her, just a text to say hi. But for some reason the thought of celebrating when the world is short my baby sister, seems impossible.

You know that grief is going to be hard. It’s like when someone tells you that time with your kids goes too fast. You believe them, but you have no idea until you have your own kids. I knew grief was going to be hard, but until I lost Dani I had no idea how hard it was. There is no escaping this. It has to happen. I just wish it happened faster.

Thanksgiving

When they say, “take care of yourself,” or “get enough rest,” it is a real thing. Life has just been a roller coaster lately. I’m trying to take care of myself and rest, I’ve been getting regular workouts in, drinking lots of water, eating mostly healthy, and trying to sleep.

Sleep seems to escape me. Even when I fall asleep, I wake up in the wee hours of the morning and my mind just goes…and goes and goes. I think about everything from my sister to packing lunches, loads of laundry, clinical trials, the 10 lbs I could stand to lose, the cat, the dogs, Christmas, basketball, stress fractures, a new van, and it just goes. I try to turn it off, I pray for sleep to come to me and eventually it does. However, I know I’m not getting enough rest.

It is a real thing when people tell you to get enough rest. Because when you don’t, your body doesn’t function normally. I am sick for the 3rd time in 2 months. I never get sick like this, ever.

I’m feeling better today than I did last night when I ran straight into a brick wall (figuratively). But to be honest the color of things coming from my nose tells me I’m fighting an infection. Against my nature, I decided I better stay home and take it easy today before I get worse.

I’ve been practicing #30daysofThanksgiving this November. Each day, I post on social media something I am thankful for. My husband, my children, my friends, family, sisters, daughters, nice days, good books, anything and everything that brings me joy. I’ve posted mine already for today. But I continue to think of more and more.

Rather than post multiple time and annoy everyone in my newsfeed and because Mary is totally vegging out watching Paw Patrol I thought I’d get to work on another blog.

I woke up in a soft bed, with warm covers, and a toddler’s leg hanging over my waistline. I took a deep breath in and although I could have stayed there for another couple of hours, I followed my husband out to start the day. I smiled at a couple of sleepy looking kids and asked about their ‘sleeps’ on my way to a hot pot of coffee waiting to be poured and mixed and my pumpkin spice creamer.

That’s it, those first 3 minutes are full of a lifetime of blessings.

My bed. This means more than you can imagine. There were seasons of my life that the same bed every night, in my very own room was not a thing. There were nights in shelters where after a couple of days I could sort of breath and adjust to a new normal and a new bed and new blankets, none of which were mine, to find out that a foster home had opened up and we were moving to a new house, in a new room with a new bed and new blankets, none of which were mine.

Time would pass and I’d adjust to the new family and new bed and then it’d be time to adjust again. Then in college, there were months that if I didn’t spend the night with Jason, I’m not sure where I would have slept. So to wake up each morning in my own bed, it is a blessing. Not only did I wake up, it was in my own bed. I am blessed from the very the start of my day.

The toddler’ leg. That leg belongs to the child that completed our family. She is strong willed, and competitive and caring, and hilarious, and spoiled and brings large amounts of joy each day.

The husband. My best friend. The man I love more today than I could ever have imagined on our wedding day. My partner in everything hard and sad and beautiful and amazing.

The kids. I spent my entire life looking for what it was I was supposed to be. I have a master’s degree, two bachelor’s degrees, a resume full of a variety of jobs, experience as an educator and a consultant. All of that, it was always just work. It took me awhile to figure it out, but the kids, they were always what I was supposed to be. I was meant to be their mom and that vocation of motherhood it gives me all the purpose and more than I could have ever imagined.

The sleeps. It means I have sisters. After years of living a bit separated, we have pulled together. One of my sisters and her children call it sleeps. It stuck with me and I now love to ask my kids the same question every morning that I know my sister is asking my nieces and nephews. I have family. It means that even if I wanted to be left alone and forgotten, it would never be possible. I have people. The ones in my house and the ones thousands of miles away and we are connected.

The coffee. It means we have electricity. It means that I have a kitchen with cupboards full of more than just necessities. The coffee will sooth my sore throat, warm me on a cold day, and reminds me every morning of the loving man I’m married too.

As I write all of this, I don’t forget that life is not the way I would have planned. If I was consulting on this plan, I’d put a little less broken heart, a little less uncertainty, a little less loss, and a lot more cure for DMD.

But if I were writing this plan, would I have included even half of what I’m thankful for. Probably not, I’m too human and too selfish and would not have thought of the blessing each of the lessons and people are.

Maybe I will annoy my newsfeed. But I love November. It gave me a sister, it gave me a son, if gave me the Chicken Noodle Dinner & Bazaar, it gave me Thanksgiving, and right now in the middle of my grief and this new bout of crud, thanksgiving is my lifeline.

When I count my blessings they are greater than my sorrows. Does a hot cup of coffee make up for the loss of a sister, or the fear of losing a medicine that is helping my sons? No. But, the lifetime of blessings that I can reflect on and count, it soothes my aching heart and even in the midst of my grief, my heart is a grateful one.

Always the Same Answer: Love

I am full of sadness today. It hit me like a sniper.

My plan was to drop kids off at school, work out, go to a meeting and then to order a cake for Max’s birthday tomorrow.

Last night though, Chance had asthma attacks all night and I was up with him for quite awhile at 2:30 helping him catch his breath.

I woke up tired. He stayed home from school. Plans are never made to last anyways, right?

I set out to accomplish what I could. My meeting was so hard. I met with a man from the parks and recreation department to pick out a spot for my sister’s memorial bench. My other sisters and I had discussed whereabout we wanted it and I never expected to get emotional.

I was okay in the beginning; but as I started to explain why my sister Dani loved this park…that we had lived near it as children, that she spent a lot of time hunting for crawdads in the creek that runs through it, I could feel my eyes begin to water and my voice began to crack just as I finished speaking.

I went home and cried and cried. Ugly, snot every where, bawling. It hurts so bad to know she’s not here anymore. I try to stay busy, but every day I feel a heaviness creep into my chest and a loss of breath as I remember she is gone. The tears really catch me off guard. It hurts to even think about her right now because it hurts so much to miss her.

I gathered myself and had lunch with Jason, Chance, and Mary. I took it easy until it was time to pick up kids early from school. I went with Max and let him pick out his own cake. We laughed as he told me he talked Sister into letting him bring Birthday snacks to school tomorrow and subsequently picked out cupcakes.

I laid down for a couple hours this afternoon. I needed to rest. I got up to get supper started. As I began to prepare the food, I thought about Max. He’ll be 12 tomorrow. He loves his birthday. Every year, it is his favorite day. He waits and waits for it. He’s been planning phases of celebration for over a month!

I could not help from letting my mind wonder…

Is 12 years half of his life? Is my time with him half way over. 12. He is doing so well. I thought he might be in a full-time power chair by this birthday. He’s not close to that. We are doing things that have never been done before in Duchenne and he is benefitting. So much could change very soon if the FDA denies the appeal for Ataluren. Will he still be doing well in 6 months, if he has to stop taking it?

There are days I dare to dream he might still be walking in college or across the stage for his high school diploma. But inevitably, there are days like today that I could not help but worry none of those things will happen, that he might not even be here.

A dark truth, especially with the death of my father-in-law and sister happening so recently, I think about burial plots for my children.

It’s awful. Here I am the night before his birthday and I just wrote that. I could throw up for just thinking it. But. I. Think. It. Sometimes.

Mary’s voice interrupted my thoughts. She needed help. I walked out of the kitchen and passed Max drawing at the table, caught the dogs sitting together at the front door waiting for Jason and Lexi to come home and found Mary and the other boys playing cars on the floor.

It was perfect. My family is perfect for me. They bring me light in my darkest hour. They bring me joy when I forget it exists. My heart warmed and then melted actually. I tried to take a picture but didn’t get exactly the moment I described.

I am so thankful for them and the lesson I continue to learn over and over again. Their love, our love, our relationship with God, our joyful nature…that is what is important. No matter the length of years together on this earth. What matters is that those years are spent well. That we live well. That we experience the fullness of love.

In a couple of hours, I’ll wrap birthday presents from his Tayta and decorate the house for the birthday boy. We’ll leave decorations up until next weekend when he celebrates with his friends. Saturday morning we will head to Lincoln so that he can ‘shop’ for the present he wants from us and spend the night at his favorite hotel with his Aunt, Uncle, and cousins.

We are going to celebrate life well lived and by celebrating life we will live well. We will celebrate love and faith and joy. We will remember the measures of love, faith and joy that are now heavenly in nature and remain with us.

I hope in the end, when we know the full experience of our life on earth and all of the truths we don’t know yet, long after we are gone, I hope our legacy is one of living life and of love.

Uprooted

My miscarried baby was due the day of my sister’s funeral.  

If that alone was how life happened this year; we would agree that is enough.  Instead of spending September 30th with my family, shopping for the things a newborn would need and donating them in memory of our lost baby, I was crying because my baby sister was gone forever.

ENOUGH.  That should have been enough.

It was not. Between the last moment I last saw my sister’s lifeless body and the day of her funeral, I traveled to Washington, D.C. 

There, with what felt like an empty heart, I pleaded for my children’s lives.  I begged for hope, asking that they approve a life-prolonging drug designed for and benefiting boys with nonsense mutation Duchenne Muscular Dystrophy, including my sons.

I felt like that was ENOUGH. Except the panel that listened to my testimony asked for more.  

I’ve spent the last 2 weeks doing everything that’s been asked of me to help get FDA approval.  I shared our story at the National level that included an article in Newsweek. I unleashed a social media frenzy to raise  awareness and gather support.  

At my request, people all over the great state of Nebraska and beyond were contacting their congress members, asking them to put pressure on the FDA to do the right thing.  I’ve emailed decision makers at the FDA.  

I could have done more. Right now, sitting a thousand miles from anywhere, waiting for an answer that will come sometime next week, I feel like I’ve done so little.  I know some of you think otherwise, logically, I should think otherwise.

Here is the thing.  As I walked from my baby sister’s hospital room, with swollen eyes, an aching chest, exhausted, and distraught; I was with my sisters. In the hallway, 5 or 6 rooms from where our sister’s body lay, one of my sisters said, “I never want to do this again.” 

I sobbed, as I had done for days.  This time I cried because and I confessed it to them, “I’m afraid I will have to do this 3 more times.” It was hard to console me or my sisters.  But the ache in my heart was 4 deep, for my sister and for 3 my boys. I would do anything to keep from ever having to do that again.  I just don’t know what I’m supposed to do to prevent it.  It seems like it will always be too little.

I’m in a fog.  Some days it lifts, on other days I’m emotional, vulnerable, exhausted and can’t sleep and eat with no appetite and only because it is time. 

Next week we will be at the Nueromuscular clinic with my boys and I will be seen in the carrier clinic.  I don’t feel well most days and I do think it is because of stress; but am also afraid my heart is struggling as a muscle, not just as a vessel mourning past and future loss. Heart failure symptoms look a lot like extreme stress. 

I’m always afraid that we will hear something bad about one of the boys’ test results. I feel as though I am conditioned to always expect something (bad) to happen.

Please pray for me. That this stress will be lightened, that I will feel better soon, that we will win one of these battles.  Pray for peace. My heart is in turmoil and I seek a little bit of peace.

I don’t know much.  I don’t know what the future holds, how the boys will be, when the grief will become something I can live with. But, I do know that God has this.  

I am scared that what I want for my boys is not what God has planned for them.  I know that I am faithful because despite the agony that my fear brings me, I still trust HIS plan. I know that what I want is because I don’t ever want to know what life on this Earth is like without them.  I know that HIS plan for my children is the plan. I can only trust it.

Two weeks ago, I was questioning God’s timing.  I could not make sense of it.  Today, as hard and as exhausting as it has been to fight the FDA, it has prevented me from crumpling as a heap. 

Heartache has been ever present, but love, love for my family, love for my husband and children, and love for my sisters. Love has allowed me to put one foot in front of the other.  I’ve continued the fight, I’ve cared for my children.

I’m weak, but HE is strong.  It’s a lyric I remember from my Sunday School days as a child.  It is through my weakness, that His strength is truly present. It is a gift.

He is not done with me. I’ve almost always been the sturdy one, the strong one, like an aged tree. 

Through loss and by HIS hand, I have been uprooted.  I can no longer cling to what I know.  He wants me to know more; that is all I know.  

He’s got this.  I have to trust that.  For now and let’s hope, for always it will be HIS hand that I gravitate towards and cling to.