| |
Elk Grove, California (CA) Trisomy 13 with severe holoprosencephaly,
proboscis & cyclopia Read Newspaper Article : A gift to cherish
Baby Faith never left the hospital. But Tamara Scott's photographs give
grieving parents a life to remember
By Anita Creamer -- Bee Columnist

"We do not see this as the death of
our baby girl, but new eternal life. We brought her into this world to meet
our little angel and give her kisses as we sent her to our father in
heaven." |
August 13, 2006
As Faith’s parents and brother, Mike, Garrett and I in a private moment
alone with God will spread the ashes of baby Faith as a symbol and memorial
of her new eternal life in heaven. We will lay to rest her ashes in a place
very near and dear to our hearts and our home, in the Rose Garden where we
were married. It is where we started our lives together as husband and wife
and became a family and now it will be a place to visit as a family as
Faith’s daddy, mommy and big brother here on earth.
We do not see this as the death of our
baby girl, but new eternal life. We brought her into this world to meet our
little angel and give her kisses as we sent her to our father in heaven. She
was here a precious 37 weeks and 46 minutes and was loved enough for a
lifetime. Some may ask us, “Was she worth it?” And we say yes, she is our
daughter and a part of us forever. I ask any parent that at the exact moment
your new child is placed in your arms, “Were they worth it?” Whether our
Faith was here on earth 46 minutes or 46 years, the moment God gave us our
precious gift we were her parents for eternity. We do miss her so very much
and no amount of preparation can truly prepare for the emotions. But as
parents we want the very best for our children and that is to live a good
life here on earth and one day go to heaven. Baby Faith was loved by so many
near and far and touched so many lives in her short time here and is now an
Angel in Heaven watching over all those who prayed for her and her daddy and
mommy.
For
you created my inmost being; you knit me together in my mother's womb. I
praise you because I am fearfully and wonderfully made; your works are
wonderful, I know that full well. My frame was not hidden from you when I
was made in the secret place. When I was woven together in the depths of the
earth, your eyes saw my unformed body. All the days ordained for me were
written in your book before one of them came to be. Psalm 139:13-16
We would like to celebrate the life of our precious daughter Faith Anne Van
Steyn born August 8th at 4:59 and born into heaven August 8th at 5:45 am. We
will never live with, “What would she have been?” her life here was exactly
as ordained by God before she was ever conceived.
We had a celebration with a potluck luncheon with appetizers, finger foods
and desserts on Sunday August 20th in our home to share in the life Faith
had here on earth and shout praises for her new life in heaven.
Thank you to everyone for your thoughts, prayers, caring, compassion and the
meals, cards, phone calls, e-mails, flowers and gifts. Thank you for
understanding our need for time alone in healing and grieving. Although you
may have not heard from me or I was sleeping during your visits, we have
been touched with tearful gratitude the love of so many God has placed in
our lives so that we do not have to bear these emotions alone.
In Christ’s Love and Many Blessings,
Mike, Jackie, Garrett and Baby Faith in heaven
tojvs-faithannevs@yahoo.com
------------
 
August 9, 2006
To our family and friends, It is too early to work out and express the
emotions we are feeling... I did, however, want to send out a short update
to let you know our Faith Anne is a special little girl and was a fighter.
She was born alive and we were able to meet her and send her to heaven just
as we had prayed for. She was 4lbs 9 oz and 18 inches long. Our Pastor was
at the hospital in a moment's notice at 4:30 am in the morning to be there
for us and our baby girl in
this very special and important moment, and for that we are eternally
grateful. We can't thank all of you enough for your prayers as we felt and
continue to feel every one of them. I have attached just a few of the
amazing photos taken by the Now I Lay Me Down To Sleep Organization in the
very precious moments we had with her. As most of you know we had made
arrangements to have Faith's earthly body donated to research so that maybe
one day more will be found out about Trisomy 13 and Holoprosencephaly.
And now these three remain: faith, hope and love. But the greatest of these
is love. 1 Corinthians 13:13
In Christ's Love always,
Mike, Jackie, Garrett and Baby Faith |
I will write
again soon with memorial service information, but in the meantime, we
continue to ask for your prayers of comfort and if you wish to send
remembrances or gifts we ask they be made in honor and memory of Faith to:
www.nowilaymedowntosleep.org
- Nonprofit organization specializing in creating special and lasting
moments of the death of a child at birth.
www.sungrove.org - This is home
church to many of you and would love if you would like to place your special
remembrance in Sunday's offering whether it is at Sun Grove or your own home
church.
www.stanford.edu/group/hpe/centers/who - Research dedicated
specifically to holoprosencephaly (Nancy Clegg 214-559-8411)
www.trisomy.org - SOFT is a
nonprofit volunteer organization offering support for parents who have had
or are expecting a child with a chromosome disorder, and education to
families and professionals interested in the care
of these children. |
-----------
August 7th, 2006
Hello and we pray this e-mail comes to you with many blessings. We wanted to
keep everyone updated while we still can. We are now at 37 weeks and Faith
is now considered full term. She is still very active and has a strong
heartbeat. The doctors said we would not likely make it to term and here we
are! I have been on maternity leave for two weeks now. We went to the
hospital late Saturday night with contractions 5-7 minutes apart (mostly 6)
and I am dilated to 2 cm. They had us there until almost five in the morning
walking, but finally discharged us and said to come back when the
contractions are 3-5 minutes apart or my water breaks. We are really tired
only getting 6 minutes of sleep at a time…
My due date is not until August 27th, but it is only a matter of time now
and we wanted to take time to thank everyone for your continued prayers and
support. We could not have walked this road without God and the amazing love
and support of our family and friends that he has placed in our lives near
and far. We will try and keep you updated as we can or make sure someone
does. We humbly ask to be kept in your prayers at this time of excitement,
pain, fear, love, joy, rejoicing and so many other emotions happening all at
once.
"Have faith in God," Jesus answered. "I tell you the truth, if anyone says
to this mountain, 'Go, throw yourself into the sea,' and does not doubt in
his heart but believes that what he says will happen, it will be done for
him. Therefore I tell you, whatever you ask for in prayer, believe that you
have received it, and it will be yours.
Mark 11:22-24
In Christ’s everlasting love,
Mike, Jackie, Garrett and Baby Faith Anne
-------------- June 30, 2006
My name is Jackie Van Steyn and my husband is Mike, we live in Elk Grove,
CA. Our daughter’s name is Faith Anne and is due August 27th, 2006. We found
out at 22 weeks in a level II ultrasound that our daughter has
holoprosencephaly. There is the presence of a proboscis and they say she has
cyclopia and were told termination was the only option. We along with many
others prayed as to what to do next. At 24 weeks we had an appointment with
the genetic counselor and had the amniocenteses done and that is when they
confirmed Trisomy 13. My pastor advised us that God would put in our hearts
the right thing to do and that no matter our decision God is a loving and
forgiving God. So we prayed for many hours….days…we finally made the
decision to carry our baby girl as long as God allows. I found an online
support group for holoprosencephaly and was given an incredible amount of
support, love and prayers. There is where I came across the scripture:
"For you created my inmost being; you knit me together in my mother's
womb. 14 I praise you because I am fearfully and wonderfully made; your
works are wonderful, I know that full well. 15 My frame was not hidden from
you when I was made in the secret place. When I was woven together in the
depths of the earth, 16 your eyes saw my unformed body. All the days
ordained for me were written in your book before one of them came to be."
Psalm 139:13-16
That is when I knew for sure that she was exactly as God created and
intended her to be and who was I to decide if her life is worth living as
her mother…let alone doctors who were complete strangers to us. We are now
about 32 weeks along and loving everyday we have with her. I have contacted
the “Now I Lay Me Down To Sleep” organization and the photographer here in
Sacramento has been a true gift to us. She has been out to our house and
took maternity and family shots of us with our little girl in the womb
alive, kicking and beautiful. Faith is our first child together as I have a
13 year old son from a previous marriage. Our photographer was able to
capture the love and excitement we have for our baby girl in photos we will
forever cherish, she will also be in the delivery room with us. We have been
assigned an equally gifted hospice nurse who has been caring, encouraging
and supportive in not only the prognosis of death but supportive in helping
plan for Faith to live. At the holoprosencephaly support group I made
contact with a woman in another state who was four weeks further along than
I, also with a baby girl diagnosed with the cyclopia. Her baby girl has
since delivered at 33 weeks, they were able to spend precious moments
meeting their daughter face to face and handing her to Jesus together and to
say goodbye. They don’t for a minute regret their decision to carry her as
long as God allowed. Heaven has never been more real to them than it is now.
With so much support from family, friends and the blessings of so many that
God has brought in our path, I know more than ever that God is holding us up
every step of the way. Thank you for this website and the lovely pictures
and encouraging stories of HOPE and FAITH. I have another appointment July
7th and pray a prayer of blessing each new day we have with her. I will pray
for all of the unborn babies being lifted up to God’s will and healing
touch.
May God Bless,
Jackie Van Steyn
tojvs-faithannevs@yahoo.com

|
|