Abba's Online Journal
This page contains various journal entries from Shui's father's online journal on www.rachaeli.com.*Rachaeli's Friends
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Today my life changed forever. I’m sure this can be said of
other days, as well, though I may not have recognized it at the time.
As
I continued seeing patients, I waited for the call. All day we had
anxiously awaited the Ophthalmology consult, hoping Rachaeli’s eye exam
would be entirely normal. Rachaeli had been in the hospital now for over
a week. We still didn’t know what was causing the aspirations that led
to recurrent bouts of pneumonia. The geneticist that saw her yesterday
seemed concerned about a metabolic disorder. He asked about any family
history of Tay-Sachs. I took comfort in the knowledge that I tested
negative for Tay-Sachs years earlier, although my sister was, in fact, a
carrier. While we feared the worst diagnoses imaginable, we still
hoped for the best. A clean eye exam would strongly suggest that our
baby did not have a metabolic storage disease; perhaps we could rule out
all inborn errors of metabolism. Even that phrase is strange -- inborn
“errors” -- as if God was careless or sloppy.
At 3 P.M., I was
sitting in my office, counseling an adolescent female about appreciating
the incredible power she has to choose her own destiny; that she truly
had the capacity to “choose life”, so to speak, or, by default, choose
to go on living a largely vacuous existence. When LaTisha [my
receptionist] buzzed me, she insisted that the session was over. She
told me I needed to call my wife. Nicole’s voice was eerily calm and
emotionless. She asked if I wanted to know now or when I arrived at the
hospital. The Ophthalmologist saw a bright cherry-red spot in the back
of my daughter’s eyes. I immediately understood. The process of
neurologic degeneration had begun. Our worst diagnosis was confirmed. I
knew, with certainty, that my life just changed forever.
As I sit
here writing this note, only 8 hours have passed since the phone call.
Yet this feels like the longest day ever. I have cried for much of the
past 8 hours. I spent the rest of the afternoon at the hospital, after
which I returned home to pretend to be normal in front of my kids as I
corrected their homework.
At 7 P.M., I drove to the home of a
woman whose son died at age 5. I had never spoken with this woman
before, yet suddenly we were members of the same miserable club. I
showed up on her doorstep unannounced. I asked if I could come in; I
explained that my daughter was dying. I asked her to tell me about her
son. She did. And for a brief moment, I was comforted. I needed to
dilute my pain. I felt strangely better knowing she understood what I
felt at that second. It was with an amazing sense of urgency that I
sought this parent out. Before I spoke with anyone else, I needed to
speak with someone who has been through this before me. I’m glad God
made sure she was home.
At 9 P.M, M.K. [a dear friend and mentor]
called. He gave meaning to this day. I asked him if God was taking away
anything that I NEED. He explained that we all have a job on Earth.
When we are done, we are free to go. Rachaeli’s job is almost done. We
may never know exactly what it was, but, suffice it to say, it’s almost
complete. When she is no longer needed here, she can (and will) go.
When she leaves, I will not be losing anything I need, because she has
already done her job. I know he is right. He tells me he loves me. I
need to hear that.
It’s 11:30 PM now, and I’ve been back to the
hospital. The baby looks just beautiful and sweet. Nicole is calm and
appears together. I want someone to cry with me, but I can’t bring her
down. I miss my baby. I pretend this is a dream. It isn’t. It’s just the
day that changed my life forever.
**************************
I led the davening [prayer service] at synagogue this morning. I
tried to focus on the words as I sang, investing them with the painful
newfound meaning they now possess. Afterwards, I let M.B. [a sensitive
and spiritual friend] know that my daughter has Tay-Sachs. I remind her
that when she met my daughter many months ago, she described her as an
“old soul”. I asked her, today, what she meant. She says that you can
look in the eyes of some people and simply see a depth; a depth that
tells you that they have been here before.
I recall what M.K.
said; that not everyone needs to be here for a lifetime. Some souls only
need a couple of years to accomplish or complete their goals. Then,
they are done. They need not stay longer than that. They have, during
their short stay, achieved perfection. Perhaps Rachaeli’s old soul only
needed 2 or 3 or 4 years to complete its mission. Then it will be ready
to go. I think I find a bittersweet comfort here, as well.
***************************
Tuesday January 13, 2004
Tuesdays are my day at
home. It’s a special treat to be able to
spend time with my baby. I hate thinking that my Tuesdays with Rachaeli
are now numbered.
I love that she still smiles and laughs. God,
it’s incredible how beautiful she is when she smiles. I melt. It’s like
an angel visiting you for 3 seconds. I’m so afraid when the smiles will
go away. I know that before too long I will see her starting to slowly
drift away. As her vision dims and her brain fills with fatty deposits,
there will be less and less of my baby here with me. The thought of that
terrifies me. Every smile is a welcome reassurance that we are not
there yet. I’m so afraid of the day when the smiles are gone.
The
baby loves her brothers. They make her smile the moment she sees them.
Nicole is right when she says that they will never once be mad at her.
They will never once yell at her. She will never challenge them, anger
them, or be hurtful to them. When she leaves, they will feel pure
sadness; pure sadness. Nicole says she will always be a baby. It’s true.
She will never sit up; she will never walk; she will probably never say
Abba again (God, I miss that sound.) But I love my baby. My forever
baby. She’s my old soul. She is as pure a Neshama [soul] as you can
find. Yoni [my 8 year old] reminds me that she will never commit a
single sin. Never speak one angry word; never hurt another’s feelings;
never break a single rule. He is wise. She is pure goodness.
I
guess I like to delude myself when I am not ready for the candid
unadulterated truth. After our diagnosis, I painted a picture in my mind
that my child will live until 5. Tay-Sachs kids die at age 5, I told
myself. I suppose I really knew that that was usually an upper limit,
but I continued to envision 4 more years with my baby. This past Friday
night, consistent with my sad new custom, I read from my stack of
Tay-Sachs educational materials. This time, I opened the directory of
Tay-Sachs families, a demographic list including the birth and death
dates of each child with the illness. I start calculating lifespans of
each. 3 years. 2 ½ years. Some even just 1 year old. I lost it. I need
more time. I want my 5 years…But do I? Do I really? On some level I feel
like part of me wants this over. I want to skip ahead to the misery of
the aftermath of my baby’s death rather than sitting and waiting for the
inevitable misery to arrive. How messed up is that? As I think this
through further, I think that what I really want is to be ready. I guess
I envisioned being “ready” in 4 years. I’m not ready now.
I
dreamt 2 nights ago another of my famous vivid dreams. This time I had
left the airport and was driving home. It seemed like I was leaving
LaGuardia. Though I knew the way home well, somehow I found myself going
in the totally wrong direction, along a highway called “Route 2”. I was
torn between just continuing to drive, hoping I’ll find my way, versus
eating the time I have wasted, turning around, returning to the airport,
and starting over. While I felt like I could probably still eventually
find my way home from where I was, I ultimately decided to return the
place where I started, the airport, then making my way home on the route
I knew. I would pay better attention this time. As I drove back towards
the airport, I was clearly speeding, hurrying so as not to waste any
further time. Suddenly I find myself driving through a rather
frightening neighborhood, when all of a sudden a scary man appears in
the periphery, throwing a rock or a hard ball straight at my windshield.
I was going too fast and was too unprepared to swerve to avoid the
projectile. I remember it hitting my windshield with an incredibly loud
bang. I awoke.
With little analysis, I quickly realized how easy
it was for me to find myself completely lost, desperately trying to find
my way back home, where I knew I belonged. Though I knew the route
well, I somehow ended up on the alternate “Route 2”. I did quickly
realize my error and decided not to rationalize that I could still find
my way back through the wrong path (or lifestyle); I knew I needed to
return to what is right and go the way I know best, even if it takes
longer. This dream reflected my incredible subconscious fear that when
Rachaeli dies, I will not be ready. I will be on my way to getting
myself situated and back where I need to be (spiritually, emotionally,
priorities, etc.), and I will literally be blindsided by her death. This
truly terrifies me. M.M. [a therapist and friend] says I want (and
perhaps need) to control as much as possible; to be as ready and
prepared as I can be. This illness is one thing I can’t begin to
control. The dream reminds me of every movie where the protagonist
finally sees the way out of his painful situation, and gets so close to
escaping with the romanticized success he has envisioned. Then, in the
very last scene of the film, he is robbed of his chance to achieve it.
All the rooting and cheering suddenly ends with tragedy. I fear deeply
that this is my fate.
******************************
Wednesday March 10, 2004
I woke up Yoni before I left for
synagogue to ask if he had any
further nightmares about being kidnapped (vivid dreams run in the
family). He immediately conveyed that he actually had a “great dream”
that Rachaeli could walk. He said “we were playing Hide-and-Seek and she
was incredible!” He explained, “It took me all day to find her, because
she fell asleep while hiding under my bed”.
I love him so much
it hurts.
*******************************
Saturday Night March 27, 2004
I returned home from synagogue to find Shui [my 6 year old] sitting quietly alone at the table in our kitchen. “I wish ‘chaeli didn’t have to die,” he said. “She has such a beautiful face.”
********************************
Friday Afternoon April 2, 2004
Ari [my 3 year old] sat next to Rachaeli on the bed, kissing her before Shabbos [the Sabbath]. “You’re the best big brother in the world,” I told Ari. He responded, “If ‘Chaeli gets big, she can wear underwear like me.”
***************************
The baby has been sick all week, with some wheezing, followed by
increased irritability, more neurologic symptoms, and what seems like
an increase in seizure activity. More Benadryl added to her Reglan
cocktail hasn’t seemed to help. The same arm and neck movements that 2
weeks ago seemed like a baby trying to navigate her environment have
been reduced to a collection of purposeless, even painful, choreiform
movements associated with further white matter disease. Of course,
nothing has really changed. It’s just that, once again, medical science
has robbed me of the capacity to view my daughter’s existence as
anything but pathology.
Within minutes of the nurse leaving this
morning, I found myself again unable to soothe my dying child. As each
wave of seizures comes, I’m greeted with a humbling reminder of how
little I can do to stop the process that is ravaging her brain. I now
feel her whole body jerk in my arms, like she’s being shocked by some
sadistic force, each jerk sending her into another round of unconsolable
tears. I wonder if she can see me. Am I any comfort to her at all? Her
crying reinforces my deep seated fear that I am entirely powerless to
help my daughter. Her mother comes in to relieve me. Rachaeli settles
down. I’m both hurt and relieved.
At synagogue, Yoni and Shui
behave beautifully. They leave for groups, and I am seated alone until
J.A. [a dear friend and neighbor] arrives. J.A. turns and asks how we’re
doing, how the baby’s week went. I suddenly start crying, something
I’ve done frighteningly little of since returning from the Tay-Sachs
conference in April. I apologize for reacting like this and try to
regroup. The Rabbi starts his talk and I pack my things and leave. I’m
too emotional to listen. I find an empty classroom and start to cry.
It’s a good cry, even tinged with some anger. There’s an emotion I
really haven’t made much room for so far. I spend 30 minutes crying
before I regroup and pick up the kids. I feel good that I gave myself
this time.
At home, Ari sits with me on the couch after lunch, as
his brothers play outside, his sister sleeping upstairs. Nicole is
reading at the table.
“Why is ‘Chaeli going someplace for a long
time, Abba” he asks.
I immediately feel like I know exactly
what he’s asking. I ask him to explain his question, anyway.
“Why
is she going someplace for a long time?” he asks again, somewhat more
impatiently.
“Going someplace…you mean, like to Shamayim
[Heaven]?” I ask him.
“Yeah, Abba. To Shamayim. Why is she
going?”
“Because she is sick inside her body,” I try to explain.
“When
will she go away?” he then asks.
“I don’t know, Ari. I guess
when God decides that He wants her back, He will take her up to Shamayim
to be with Him.”
“How will she get there – to Shamayim?” he
asks.
“God will take her there Himself,” I say.
“But God
doesn’t have any hands, silly Abba,” Ari says.
I do my best to
explain how it works, though I realize midway through my explanation
that I have many questions of my own about the whole process.
“You
know when ‘Chaeli is in Shamayim, she will be able to walk, and talk,
and run, and play tag,” I explain to him.
“I want to play tag
with ‘Chaeli,” he says.
“You will one day. When you are very old
and you die and you go to Shamayim, you will see ‘Chaeli again and she
will be so happy to see you and play tag with you.”
“How old,
Abba? Like when I’m 4?”
“No, Ari,” I explain. “When you are very
old you will go to Shamayim and you will see Chaeli again.” And as I
explain this to him, I am overwhelmed with the awareness of how
incredibly confusing all of this must be to a 3 year old. Why does he go
to Shamayim when he’s very, very old, but his sister goes when she’s
still a very little girl? Again, more questions I can’t answer for
myself, much less for my 3 year old.
After lunch, I settle down
to read some passages from Lisa Aiken’s book, Why Me, God? about the
“Jewish response” to suffering. The passage about Rabbi Meir and his
wife Bruria comforts me. Upon finding their 2 sons dead, she asks her
husband what to do about some gems a man entrusted her to hold a number
of years ago. “He now wants them back”, she explains, and asks if she’s
obligated to return them, even though she’s grown quite attached to them
after taking care of them for years. “Of course you must return what’s
not yours if the owner is asking for them back,” Rabbi Meir explains.
She then shows him the bodies of their 2 sons and reminds him of his
words minutes earlier.
I read that Rav Nachman also lost several
children to Typhus. Ms. Aiken quotes a Tefila [prayer] he wrote, asking
for the capacity to better understand Hashem’s [God’s] plans. I think I
connect with these sentiments.
It seems that we all come to
accept the reality of our losses; our comfort and healing comes through
being able to make some sense of these events. I’m still stuck on why
she has to seem to be suffering though. I can much more readily accept
my suffering than hers.
At Synagogue tonight, I’m standing near
R.B., who, at 21 or so, puts her head on her father’s shoulder and says,
“I love you, daddy”. I want to cry again. More things I’ll miss out on
ever hearing from my daughter.
It’s late and Shabbos draws to a
close. It’s been a heavy one. I’m not sure who opened the window, but I
feel it’s time to close it some. We’ll see if my children let me.
********************************
It’s been a really long while since I’ve written anything. I’m
not even sure why I’m writing now. It’s not as if anything is different.
In fact, it’s beautifully, perfectly, miraculously…the same. Rachaeli
inhales; Rachaeli exhales. Sometimes she gives us a sweet soft sigh.
Nicole tends to her every need. I kiss her; I sing to her. I squeeze her
like she is the most precious gift in the world. Each day with Rachaeli
is beautifully, perfectly, miraculously… the same. I could ask for
nothing more.
This morning, I got to thinking about my
relationship with God. I think about this theme often, though rarely
quite like today. Today I contemplated the nature of my desire to truly
know God; to experience the kind of closeness and connectedness that
effaces any of the interpersonal loneliness I sometimes struggle to
ignore. As I strive for the closeness of that connection, I find myself
wanting to latch on, to feel the tangible presence of God’s love. Like a
young child for a parent, there is an all-encompassing comfort in the
security of that physical connection. It is difficult to elucidate what
makes it so powerful. It's simply unlike any other bond.
Today I
observed a small child sitting quietly with her stuffed animal in the
waiting room of my office. The plush monkey clearly was a favorite. She
clutched the small, tattered toy next to her chest as she waited for her
mother to return. I watched her stroke its fur. Several times she
kissed it. She held it tightly, as if this transitional object was the
key to her parent’s return. It was clearly this child’s temporary
connection to her mother. This soft, small, inanimate object was infused
with such love and the intense capacity to connect this child to her
caretaker. I immediately understood the message.
As my perfect
angel has lost more and more of her physical capacities – her speech,
her sight, her laughter, even her ability to move on her own – she has
become my precious, perfect, plush toy – my perfect connection to my
Parent in Heaven. Rachaeli is the most wonderful gift – a fragile,
perfect soul that requires only my nurturance and love. God has sent her
to us to care for her, to love her, to cradle her, and to comfort her –
but also to comfort us. She is His gift to us -- my tangible connection
to my Creator. This is my chance to come closer than ever to touch, to
feel a piece of God. As I squeeze and kiss and stroke this perfect
little being, I am transported to a level of spiritual connectedness
that allows me, even for just a short moment, to physically, tangibly
feel God’s love. He has given us the perfect transition object – the
sweetest symbol of His closeness to us – that I can ever hope to be
blessed to touch. I am awed by the beauty of this opportunity, as I hug
my Rachaeli more tightly than ever. She gives me a sweet, soft sigh,
then inhales deeply and exhales again. Today is beautifully, perfectly,
miraculously…the same. I could ask for nothing more.
-ef
*******************************
Monday December 28, 2009
It’s been almost 18 months since my last entry. My little angel
is seven. Since her diagnosis, I never believed I would be able to write
those words... Seven… What a beautiful gift God has given us – and
allowed us to keep far longer than I ever permitted my post-diagnosis
dreams to conjure.
As I look at her sleeping beside me, I am awed
by the angelic presence of this little jewel. But I also feel a quiet
fear overtake me. It’s a not an unfamiliar fear, but one I haven’t felt
in quite some time. Several days ago, Rachaeli began breathing
differently. Her respirations are now slow and shallow. There are longer
periods without any breaths at all -- punctuated by the sound of the
monitor alarm indicating that her oxygen level has fallen dangerously
low. I watch this with unease, fighting to suppress what I know this
pattern signifies. This is different for Rachaeli. It’s not a pattern
I’ve seen before. One poignant reminder that we are inching towards
exhaustion. A sad sign that my baby is growing weaker.
I suddenly
crave yesterday -- and every Tay Sachs day before that – when each
breath was a sweet word of comfort. I worry that tomorrow I will miss
today.
I’ve allowed myself to bask in the wonderfulness of the
status quo – a perfect island of sameness that appeases all my fears of
letting go. But now I feel myself being pulled back into fearfulness, as
I struggle to find ways to prevail. Its pull is as strong as my
greatest defenses. I wish I could be strong like Rachaeli. Or like her
mommy. I am not.
I watch Rachaeli breath again…then pause. I wait
for what feels like an eternity until her next breath. I wonder if she
is visiting God. If He is hugging her so tightly she can barely breathe.
If each apnea is a Godly hug. I see suffering, but she feels love. I am
briefly comforted as I contemplate this imagery. Then I wait for the
next breath, and wait…quietly wishing that God wouldn’t squeeze her
quite so tight.
-ef
