Transformations, in the past and present, in the face of challenges.

Forever Young

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Bob Dylan’s song “Forever Young” has recently taken on a very new meaning. It used to be so hopeful, a lovely wish of a parent for their child. Dylan wishes his child to “build a ladder to the starts and climb on ever rung”, a very poetic wish for one’s child to achieve their hopes and dreams. For me this line is more literal- I wish my son will continue to be able to physically climb ladders, or stairs, or just be able to walk for that matter. My dreams are simpler now: may you continue to run around acting out your imaginative pretend plays, may you continue to jump up and down in excitement, may you one day walk down an aisle to receive your highschool diploma, may you stay healthy.

Duchenne Muscular Dystrophy is a very sobering disease, something that makes you never take the mere act of sitting up and breathing on your own when you awaken in the morning for granted. As I tucked my son into bed tonight the song “Forever Young” popped into my head. As I velcroed on his nighttime orthotics and helped him get comfortable all I could desperately pray for was that he doesn’t ever lose the ability to roll over in a bed. Such a simple thing we take for granted: the ability to roll over. If I have gained anything so far in this journey its appreciating every small act, every moment.

Sometimes I wish I could just stop time and keep my Yehuda from growing up, but time marches on. The truth is, its the living and longing for the past that hurts the most and impairs my ability to move forward. As a good friend recently enlightened me, we can only tackle difficult situations when we are willing to jump off the cliff, so to speak. Its when we fight it and avoid reality that we become frozen and stuck. When we are able to accept our situation and jump off the cliff, we can then move forward and hopefully face the future with optimism.

I have jumped off the cliff and thrown my worries to the wind as much as I can. I have surrendered to a Higher Power. My prayers for a cure and hopes for a better future for my son and the other boys affected by this disease remains the same. But, instead of wishing for Yehuda to stay forever young, and longing for something that no longer exists, I am jumping off the cliff and not letting the past hold me back any more.

 

 

 

Fiat Lux 4

I think at first I was numb. You hear your kid has a terrible disease and immediately you shift into overdrive. I was hyper-focused on researching everything about Duchenne Muscular Dystrophy. There was so much to think about, so many appointments and decisions to be made. But I felt empowered and there was a real sense of hope and purpose. This is how I chugged along at full speed that first month or so. But then the dark clouds set in.

I found myself watching my son run around the house and ride his bike and the questions starting buzzing in my mind: How much longer will he be able run or walk for? When will we need a wheelchair? Could the inevitable heart and lung complications really be something in our future? How will he deal with this? How will we cope? Why is my life a complete upside down reality of what I ever imagined it being? This can’t be happening, can it? And these questions were relentless and kept me up at night. I was slipping and losing the initial energy and hope I first had. The dust had settled and reality was sinking in. Everything felt hopeless and I was shrouded in darkness. You never think anything like this could happen. Just a few short months ago we were stressing about normal things like when to buy a house and worrying about play dates. I miss that stress. I would give anything to have just that stress again. But this is happening and its either sink or swim.

I used to have this dream when I was younger that I was standing on a train track and a train was headed right towards me. I knew I needed to get off the tracks but as hard as I tried to run everything was in slow motion. My legs wouldn’t do what my brain was telling them to do. Ultimately I would awaken unsure if the train hit me or not. That’s how it sometimes feels these days. I know there are treatments out there and they seem almost touchable but yet they are still so far from our reach.

But today the darkness gave way to some sparks of light. Starting off with hearing the news that we have a new nephew, the first glimmer poked its way through. And this nephew happens to have been born on the same Hebrew date as my 2 year old, the holiday of Tu B’shvat which is the New Year of the trees. With this holiday we feel a sense of renewal, of the world around us blossoming. I started to feel a tiny bit renewed myself. Additionally, for some reason today while driving in the car I had this strong sense that something positive was about to happen in the research and treatment of Duchenne. I was convinced things were going to change soon and this brought me much comfort. You see there were several recent disappointments and setbacks in the cutting edge research and treatments going on to treat this disease. And when I was online a few hours later I saw that in fact something positive was happening! They found after 2 years this certain drug they are running trials with was actually causing boys to not get worse. We may be a little bit away from a marketed drug but this is a major step forward. The sparks were breaking through and I could feel the darkness lifting.

As I write this I do feel more hope but I also still feel the weight of the stress and worry I always carry with me. I guess this is the new normal. But I’m going to keep fighting through and searching for those sparks at every moment. G-d is giving me the strength and I’m going to keep reaching as hard as I can through the dark clouds that surround me. In the end it is those sparks, when joined together, that brings light and joy into our lives. I am thankful for days like today and I hope and pray for more of them in future.

I appreciate everyone’s support and feedback. Please be sure to visit the donation page for Yehuda, to help support the much needed medical research and trials going on to one day bring a cure to end Duchenne.

My son is my biggest teacher

This almost 6 year old never seizes to amaze me with the things that come out of his mouth. He is really an old soul inside a pint sized body. Here is some recent wisdom from Yehuda…

- While talking in the car about Duchenne Muscular Dystrophy (the disease he was recently diagnosed with), he said to to me, “Mommy, its all for the best. Everything happens for a reason. It will be ok.”

- While doing his daily stretches to help loosen his muscles, we were chatting about why we do the stretches. Yehuda says to me, “The Duchenne is like Pharoah, my body is like the Jewish people and the stretches are like Moshe (Moses). The stretches are fighting the Duchenne.”

There are more and I think maybe I will come back and update this post with more ‘top sayings by Yehuda’. I feel so blessed to have such a insightful special boy as my son. I only hope to be the best mother possible and nurture and care for him the way he needs and deserves. Having his positive attitude and acceptance of life’s circumstances should serve us all well!

Sometimes I just want to scream “why??!!”

Sometimes I think the world is crashing in around me and I can’t breathe

Sometimes I’m so angry no one figured this out sooner

Sometimes the frustration burns inside me and I think I might combust

Sometimes I’m so angry at people for being silent, and pretending they don’t see me as to avoid an awkward encounter

Sometimes I want to yell at friends, even family, “why don’t you get it?!”, “why aren’t you giving, reaching out?!”

Sometimes the check list grows so long, with so little time, and I’m running out of paper

 

But, most of the time I feel lucky

Most of the time I feel so much joy being around my sweet boys

Most of the time my heart is so full of love I cannot imagine there being any more room

Most of the time I feel blessed to be entrusted with such a pure soul to take care of in this world

Most of the time all the research, drug trials and therapies bring me sparks of hope

 

And now I know…

I know what it means to love so intensely, and the strength this gives me

I know what a true friend is and how generous even complete strangers can be

I know that I am the luckiest woman alive for having the most amazing, supportive man by my side

I know how much simple words of encouragement mean, and sometimes I’m moved to tears by what others express

I know there is so much hope and we are finding out more each day

I know somehow we are getting through this and its only making us better, stronger, wiser

Now I know

Timing is Everything

I’m starting to see how the pieces of my life come together into a complete tapestry when I reflect back and simultaneously look at my present situation. For so long I wanted certain things to happen at a certain time. Isn’t that what we all do? We dream, we plan and then we execute. But, what happens when the dream never materializes? We are disappointed, insecure about what the future may bring now that our “plan” isn’t coming to fruition. If only we could fast forward, and see how it all works out, perhaps then we could let go of our need to control. But, alas this is not possible- until time travel becomes a reality- and we need to exercise patience and faith that there is a greater plan. This sort of patience never came easily to me but today I can honestly say that I see how “disappointments” can sometimes turn out to ultimately be transformed for the better.

When my husband and I got engaged over 9 years ago (I cannot believe its been that long), we had dreams. Our biggest dream is perfectly reflected in the location in which we got engaged. On a beautiful sunny afternoon during the festive holiday of Succot, my husband proposed to me overlooking the famous Western Wall in the Old City of Jerusalem. What better location then right next to where the former Holy Jewish Temple once stood? Our hearts and souls were both so connected to our homeland, Israel. This was where we planned to move as soon as the time was right, and we saw no other option. But, as we settled into married life, and then our first son was born we began to have “reasons” for not making the move. Every time we would sit down to discuss it we both still had that deep burning love and longing for Israel, but for one reason or another there was something holding us back. It broke our hearts that this dream was not happening, but we chose to focus on our family and our current lives, and hoped things would one day change.

Years later, we decided that moving to the suburb I grew up in was the best place for us, if we couldn’t be in Israel. Here was a small, growing community of people with a real sense of commitment to Judaism and to each other. We also longed for a safer place with more nature. We felt connected to the community, and we felt we could contribute and thrive in a real way. But, after crunching numbers we saw this was not a financial reality. We had to sit tight for another few years. In the meantime, we had thank G-d filled our 3 bedroom apartment and were in need of more space, and we were also lacking a sense of real community in our current city.

Today, I see that this was all for the best. Just two months ago we received a life changing diagnosis for our oldest son. He has Duchenne Muscular Dystrophy. His muscles do not produce the protein dystrophin, thus there is a steady progression of loss of muscle strength overtime. Thank G-d he is doing well and there is a lot of hope for treatments, but we have had to adjust our lives in a profound way. Our son will need to see a team of specialists in the Muscular Dystrophy clinic every 3 months as well as ongoing physical therapy and a daily regimen of medication. How could we have possibly navigated his treatment in a foreign county in a language we are not totally comfortable speaking? And now we know that buying a home without stairs is best for our son, and we may have bought the wrong type of home earlier. More than all this, right at the time we received the diagnosis major accomplishments were beginning to happen in the treatment of Duchenne. If we had found out earlier about his diagnosis (this could have been possible since it was something he was born with, but that story if for another time), there would not have been the same amount of hope as there is currently is today.

It has all become clear why things didn’t happen the way we had wanted. There was a bigger plan. My level of patience for when things aren’t budging is forever altered. Today, our dreams may not be coming to fruition, but if we are patient we may one day see the bigger picture.

Letting the Challah Rise

Yesterday my son wanted to make challah. My first thought was ‘what a wonderful idea!’. So after naptime he was ready to get started. With great enthusiasm my son helped carry all the ingredients to the table and was more than eager to begin pouring and mixing, ‘by myself’. He climbed up on a chair and was ready to go. We dissolved the yeast, added eggs, honey and salt and were ready to begin mixing in the flour. Upon setting up my gigantic 20 lb mixer I realized we were missing the actual mixer attachment. I vaguely recalled this being used as a toy recently and started to look in my son’s play kitchen, but there was no mixer to be seen. Ok, ‘let’s try the hand mixer’ I told my son. I pulled out my high-tech hand mixer, plugged it in and began to mix. As more flour went in, the mixer was working harder and harder until it got completely tangled up in all the dough and would no longer budge. I felt hopeless and thought this was the end of our challah baking escapade. But wait! I vaguely recall that dough used to be made without such electronics, you know, back in the shtetl era. So I rolled up my sleeves and dug in; kneading, pulling, punching. I got quite the upper body workout.(By this point my son lost interest and was busy conducting an elaborate game involving his stuffed animals and refrigerator magnets.)

While I’m standing there covered in flour head to toe, with my arms deep in dough, I realized there was perhaps something to glean from this seemingly frustrating dough making situation. Sometimes I find myself aiming so high and having high expectations. I want to be the best mother ever and the best wife ever. I want everyone to be happy with me, accomplish all my tasks and still have time to grow and work on myself. Some days I achieve it all and some days I don’t. But sometimes on those days that I am sapped of energy I am able to just focus on the tiny happy things, and people, in my life. I cannot fold another pile of laundry or make that important phone call, but I can get on the floor and play with the cutest little 3-year-old around.

The mixer may not work, in fact both mixers may not work, but then I go back to basics. I let go of the gadgets and somehow the dough does rise to produce beautiful challahs and rolls. Sometimes we need to just forget about all the fancy gadgets and multitasking goals we have, and then we will truly ‘rise to the occasion’.

For more about how to conduct your daily life in a meaningful way please check out Rebbetzin Tziporah Heller’s Q&A class on Naaleh.com in which she addresses a question from a woman about how to fill her day meaningfully:

Gaining Perspective

This week a young woman I know became very seriously ill from an infection in her brain following complications after giving birth to her first child, a healthy baby girl. Baruch Hashem she has overcome hopefully the worst of the infection and is making steady progress, yet her condition still remains serious.

Of course something as serious as this situation makes you stop in your tracks, and realize just how fortunate we are. Here I am complaining to my husband about having a cold and still needing to work, and someone else is suffering so much more intensely- a young mother like myself. Its times like these that I hug my son and remember to enjoy every diaper change, every bath time, and all the other ‘mundane’ daily occurrences. Instead of wishing I was elsewhere having more fun, I begin to appreciate the blessings in my life.

Its the collection of what appears to be the mundane everyday actions that turns into something truly profound- a full, wonderful life, and a chance to become a giver and not just a taker. What better purpose is there in life than to move beyond our own needs and concerns in order to help someone else? And who needs and deserves our chessed (acts of kindness) more than our loved ones?

May Batya Shira bat Chasida have a complete refuah and return home to her new baby in good health.

Check out this class by Rebbetzin Tziporah Heller  from Naaleh.com in which she discusses the meaning of trust and the meaning of suffering:

 

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