Monday, June 3, 2013

Three Feet Deep

The past month and a half have been quite challenging. All of the excitement of the Bar Mitzvah is in our wonderful memories, family has all gone home, and we are trying to get back to normal. Actually, we are trying to figure out what normal is right now. We are stuck in a holding pattern.  As of now there is no known cure for ALS, but there are many clinical trials and research that G-d willing will bring a cure.  We are Thank G-d too healthy for certain trials, and just waiting for other trials to become available, and then hope and pray that we are going to be one of the lucky twelve to be selected for it.

So we wait, we pray, we hope, and we cry (or maybe that's just me). Some days are good days. The kids are happy, Yitzi is feeling well, there is an atmosphere of joy and excitement that permeates our home. We know how many people around the world are doing extra Mitzvos on Yitzi's behalf and how many are praying for us.  For those of you who don't know, there is even a website called!  We can feel a miracle just around the corner. I love these days and cherish every second of them. I even answer my phone on happy days. 

Some days are downright bad days. The fear is so all consuming I cannot breath. It is like ice has begun to form deep in my soul and is spreading from there outward. Just waiting, frozen in my grief while the one I love continues to get worse and harder to understand. Sometimes for a second, I forget. He looks the same, still has the same smile and twinkle in his eyes, and then he tells me he is going to record his words, so in the future, he can communicate with his own voice through a computer. I am surprised that the tears do not come out frozen.

These days are followed by shame. Shame that I do not have enough faith and belief in Hashem. Shame that although I know the Rebbe is rooting for us and guarding us from above, I am still terrified. Shame that because of my previous blogs, people think I'm a lot stronger then I am.  I know Hashem makes miracles all of the time, some cloaked in nature and others quite obvious. I also know that not every deserving person gets one. That is what turns my heart to ice.  Are we miracle worthy?

Most of my days fall somewhere between these two. Moments of joy and hope, and moments of fear and dread, and of course hours of laundry.
Then the sun comes out again, and I remember a family trip to Big Bear Lake about six years ago. (I know it's another water analogy, but I really love water.) After watching the kids play in the lake for two days, I finally decide to jump in. I was fully dressed, and jumped into the lake, while my husband stood on the dock laughing at me. The water was incredible and very refreshing until my legs got caught in my long skirt and I started to panic. My husband very calmly says, “put your legs straight down”. I did that and found, to my embarrassment, the water was so shallow that my head and shoulders were completely out of the water. Aside from feeling foolish, (and yes, my husband was laughing his head off) I learned a very valuable lesson. It is possible to drown in three feet of water.

Right now, I am standing in murky water, where the bottom is not visible to my eye. That does not mean it is not right under my feet, but I surely wont find it in my state of panic.  I think Hashem does this purposefully, to see how we behave, and what we reflect, when we recognize our vulnerabilities.  Do we look for help, or drown in our own panic in three feet of water.

Every day we wake up with the belief that today is the day Moshiach will come. The next day we have the absolute same belief, for thousands of years.

Every day I wake up thinking today is the day a miracle will occur. At the end of the day I do feel a little less certain, yet the next morning I will wake up with the same belief.

Although I think one can definitely drown in just a few feet of water, I don't think we will. The difference between the lake and our lives is the amount of people around us. Thank you all, from my entire family, for holding us up, and keeping us from falling.  For being there when we need help, and letting us know constantly, we are not alone.  You are our life preservers.


  1. D-
    you are not, and have never been, alone.
    holding your hand...

  2. Wow Dina, your writing is so clear and meaningful. You really have a gift. None of us can of course understand how you feel, but these moments you are able to capture and explain are so powerful. Your family is in our prayers and we love you when your strong and on days your not so strong we love you more. lots of love, strength and miracles are coming your way. I know it . Alyson

  3. We are thinking about you guys all the time and your family is in our family's prayers. Thank you for all that you do for the community and our kids especially. We all love you and are all better people for just having known you and your family.

  4. dont know me but my daughter and son-in-law are shluchim in austin tx. i have been following your blog and just want you to know I am praying for your husband and the entire family. Your words really penetrate and I wish there was some tangible way to help. you can be assured for every tear you have shed the Rebbe has shed a just cannot be that one of his shluchim can be afflicted like this. please continue to be strong and open because that gives chizuk to everybody ..
    May Hashem please bring an immediate refuah

  5. I just read the first comment where the person writes "none of us can understand how you feel....."
    I would like to say that I am actually one of very few people who can somewhat understand how you feel, considering that my husband has been diagnosed with ALS in November of 2009 at the age of (almost) 36.
    I can very much indentify with the pain and the indescribable fear, a fear that just blocks out everything. It would be almost impossible for me to share my last 3 1/2 years with you in this forum. However, if you are interested in talking or writing, feel free to email me at

    Thinking of you and wishing you and your family all the best,

  6. In Mishpacha magazine's women's section, Family First, a wife of an ALS patient wrote a letter which says:

    "We'd like to let readers know that there is a support group for wives of ALS patients. We can be contacted via Mishpacha."

    the email address is: