THREE
Dear everyone;
As all of
you know, it has been a long time since we've update or added to Daniel's Hope. We have been very preoccupied since moving
to Vermont. For the past 4 months we have been trying to purchase our first home, something to accommodate Daniel. We found
a wonderful 1st home located in Springfield Vermont, all on one level with room to expand. In the middle of the
purchase the home foreclosed and was reposed by the bank. We have since been in virtual limbo. We are renting a condo on Okemo
Mountain; a ski resort in the wintertime. We are still waiting to go to closing on our new home and continue to hope that
it will happen soon.
Daniel continues to do very well and is thriving
in many ways. He has a loner Eye Gaze computer. He is a natural at operating the device. He is able to select items with the
movement of his eyes and watch movies of his choice. He has even so far outwitted us with the system in many ways. For example,
he found the “back button” and is able to navigate out of the system into Windows applications!
We think he has found a new sense of freedom in the ability to make
choices.
As Daniel's dad it had been a very long time since
I have posted to the blog. As a matter-of -fact, it has been nearly 2 years (about the time of Daniels 1st hospitalization
in Salt Lake City). I decided to write today because it is indeed a special milestone in Daniels life, and in my life.
At the five o' clock hour, Daniel will turn three years old.
I feel so
privileged in many ways to see Daniel turn three. There have been many trials, tests, hopes, dreams, silent
prayers, and things that went on behind the scenes to get him and our family to this day. Each day that I see Daniel smile
I am brought to an overwhelming realization that Daniel was a very special gift from god. I believe he was sent to us to teach
our family and all the world some very special lessons. He touches all that he meets in some incomprehensible way. He teaches
us about Hope, spirituality, unconditional love, and patience and fate in things that we have no certain control of.
I love Daniel so much and feel so blessed that
he is with us each and everyday. He is no way near finished teaching us what it is he was sent to for...we continue to learn
more each day.
A few months ago asked some advice for some lingering
questions that I've struggled with for a long time. I found much solace in a friend that I trust. Mr. Michel Jackson, a hospital
Chaplin who was there for Daniel and our family when Daniel became sick in his first few months of life. I would like to share
this with all of you since I am certain that some of these same questions have at one time or another crossed some of our
minds.
To: Michael Jackson
Subject: Hello
Hello Michael,
This is Justin Sacripante, Daniel's
Dad. I was just writing to let you know that I am thinking of you. I keep your card in my wallet, always handy. As you know
Connie, Daniel, and I moved to Vermont last year after leaving West Wendover, Nevada.
Things are going well for
Daniel here. He is getting his new wheelchair soon and a communication device to tell us all what is on his mind. He has become
a lot weaker but is still off his Bipap for most of the day, using it only at bedtime. We returned from another trip to the
Dominican Republic in late April. Daniel will be turning 3 in August.
I felt the need to write to you because even
though Daniel is doing well, I am not doing so well. I am having a difficult time reaching out to others and coming to terms
with the internal grief that I constantly feel. It seems I have lost hope and faith in everything. I am angry at the world,
I am angry with god. Why after 3 years I can not come to terms with the fact that Daniel is dying a little more each
day, is beyond me. I wish that I could find some answers and begin to heal like others have around me.
I thought
you might understand and maybe offer some guidance. I want to change, I want Daniel's life and eventual death to be meaningful.
I am thankful you were with me and my family when we almost lost him in the hospital 2 years ago. I wish that
you were with me now.
Justin.
Hi Justin!
I'm so very pleased to hear from you. The three of you continue very much in my thoughts. And I know I speak
for the rest of the Palliative Care team as well! Daniel's good news is such a cause for celebration, and I will share
that with Joan, Toni, Beth, and Mary-Ann when I see her - She's gone off to Montana to be a college professor…
Where are you in
Vermont? I have a good friend and former colleague who lives in Charlotte, just south of Burlington. What a beautiful
place!
I read your words about yourself with great care and tenderness. I am so pleased that
you have chosen me to share these deep feelings with, and I admire you for the strength it takes to put them into words.
You have given me a deep sense of some of what it must be like for you. I wish that I could be there with you now.
Let me offer
a few thoughts. First, I'm not surprised to hear that you are struggling with Daniel's "big picture".
Your training and knowledge gives you insight into that big picture that most of us lack. And, what would it say if
you could honestly say that all was hunkey-dorey with you? Probably that you had walled yourself off from large parts
of your capacity to care and to love and to feel. I recall how profoundly your father struggled with the question of
"how can this be?"
One of the cool things about Daniel is that he doesn't have that "big
picture" as far as we know. What he has is today, this moment, your love and Connie's and the people who surround
him. Whatever it is like for him is his normal. He really doesn't know anything different. That can be freeing
for him, a gift that you don't have. I know that you and Connie are walking down many roads at the same time - Dominican
Republic - miracle cure; palliative care, and some grieving along the way as well. And I know that the grief transcends
Daniel - that it's about the loss of your hopes and dreams for your child, possibly the loss of your perhaps naïve belief
that this universe is a fair or just place, loss of a predictable future - so many dimensions of loss. And what may
come relatively easy for Daniel may seem like an impossible challenge for you - to live in the present.
How do you ever
come to terms with a picture like that? What does it mean to come to terms with this? To accept it as real?
Perhaps. To accept it as fair or to be ok with it? I can't imagine how anyone could get to that place without
a lot of self-imposed illusion - or delusion. I get the anger. We're not talking here about some abstract unfairness
or injustice. We're talking about this beautiful kid, this little soul - who may possess a wisdom and character beyond
anything we can imagine or comprehend. We're talking about Daniel - his life, his time here, his experience. This
seems so wrong.
Justin, how can you heal your heart when it is being broken every day? This is not the
time for healing, I think. This is the time for experiencing what is. A time for questioning, certainly.
A time for feeling. You are tapping into the root of human suffering and grief that is and has been part of the human
experience for as long as humans have walked the earth. That is not to diminish the particularity and concreteness of
your's and Connie's experience. Rather it is to offer a perspective that what is so very real for you is also, at the
same time, part of something bigger, if you can imagine that. Any guidance I might offer would be to see if this makes
any sense to you and ask yourself if that matters.
I think there are times in this life when honest people feel, as you describe
yourself, as if faith and hope are so absurd and meaningless, and really quite irrelevant to the narrative that is unfolding
in their present experience. Your connection with the faith and hope you once knew is forever changed. But your
process has you on a journey that has many dimensions - geographical, emotional, intellectual, and, certainly, spiritual.
Things like hope and faith ebb and flow along that journey, but "lost" doesn't mean "lost forever".
And another piece of guidance I might offer is that just because we can't see something in a particular moment - or even month
or year in time - doesn't mean that it isn't there.
What may look to you like "healing" in others may, in fact, be coping.
And that is a moving target as well, because that also changes from day to day, even hour to hour. People put
things in places emotionally and spiritually that allow them to live their lives as best they can. I'm not sure that
what looks like healing on the surface is always healing in the deepest sense of that term. You might want to check
that out for yourself.
Finally, I have some good news for you! It is this: The meaning and
significance of Daniel's life and eventual death is not in your hands. Even though he is not yet 3 years old, he has
established and expressed that meaning in many ways. You are his father, his guide, his advocate and his custodian,
along with Connie. You are giving yourselves to those responsibilities with a passion and ferver that is inspiring to
many of us who care. You are doing what you must do and what is in your heart to do and be. Whatever happens today,
or tomorrow, that is beyond your power or control, is just that.
So, my last word of guidance for today
is that you both continue to love Daniel as you have, believe in him, and trust that this world in a place that sustains life
and love, whether we can see it or not, feel it or not, trust it or not.
May God bless you and your families.
May God grant you wisdom and courage for the living of these days. And may God bless Daniel!
Thanks for writing.
Write again. Or call me. Call any time.
With care,
Michael
"If I could mend your heart” -- I would invite you
to touch your sorrow and feel your feelings, and not pretend to be strong, or capable, or composed. I would listen without
comment to all that is unsettled in your soul, your doubts, your anger, your fears about the future. I would heed your cries
and probing questions, what might you have done wrong, or, what you might not have done at all. I would promise not to say,
"Look how well you're handling things" or "Cheer up, God wouldn't give you more than you can handle," or "You'll be over this soon." Instead, I would whisper in your ear, "We live in a
fragile and imperfect world tinged by brokenness and cloaked in unanswered questions. Some things truly aren't fair. This
is hard."
"If
I could mend your heart” – I would draw you a plan and perfect map
to light your path from confusion and despair, to a place of new tomorrows and rewarding journeys. A place where anger could
release its grip on understanding, and anxiousness might speak to acceptance. I would shape for you a fresh way of seeing,
through prisms of sunlight, that warm your emptiness and guide the way to a new adventure. Prisms of sunlight that temper
your pain with compassion and replace your doubts with faith, your grief with gratitude, your fear with trust.
"If I could mend your heart” – I would open wide the doors of renewed hope - a hope much larger than wishes. One that waits patiently, willingly,
expectantly, anticipating future good and knowing that life is worth living after all. The hope that I wish for you would
predict no answers but invite you to live the questions. It would not demand exact outcomes but ask you to risk letting go
and bid you to move forward, even in the face of unease. This fresh hope I send would let you step up with courage to the
new day trusting that even pain can be transformed.
"If I could mend your heart” – I would lead you
by the hand to this place of healing so that you might once again walk your own path and make memories. I would share with
you a secret, "Joy is not about music and dance and laughter, but about the
acceptance of life." Healing happens only where fear and love, joy and sorrow,
tears and smiles, can forge a lasting peace. The healing I speak of lies not in some safe place along the way, but in having
made the journey stage by stage. Until you reach that place, a place you may not now believe exists, I will save your space
and watch with confidence for your smiles yet to be.
Amen.
Mr. Jackson is a very special person.
His words have helped me heal through a time of intsense questioning. difficult time. Daniel is here for us, to
teach us. We are there to learn from him.
Daniel met
a very special family 2 weeks ago, the O'Neil family of Milton, VT. Casey, Collin, Sue, and Jean were all awesome and we hope
to see them again real soon. Please visit their blog spot and read about our visit there. Sue O'Neil puts the visit into perfect
words. Check out the July 18th posting!
http://oneillboys.livejournal.com/
Thank you all for reading. We are so thankful in all that stand by our
side during this journey.
Love as always and Happy Birthday to you my Son
on this very special day.
**PS. We will be updating the site with new pictures
and a new layout soon.
