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 amitzvahforyitzi.org! 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.
D-
ReplyDeleteyou are not, and have never been, alone.
holding your hand...
Inga
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
ReplyDeleteWe 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.
ReplyDeletehi..you 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 tear...it 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 ..
ReplyDeleteMay Hashem please bring an immediate refuah
yaakov
I just read the first comment where the person writes "none of us can understand how you feel....."
ReplyDeleteI 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 ravstein@gmail.com.
Thinking of you and wishing you and your family all the best,
Sara
In Mishpacha magazine's women's section, Family First, a wife of an ALS patient wrote a letter which says:
ReplyDelete"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:
familyfirst@mishpacha.com