- We really
are having a baby. We saw the little one on camera and
- had our first baby picture
taken. I can't believe this active little
- being is inside of me!! It moved its arms
and legs and arched its back
- to stretch. We got it on video for always! Risk
for Down Syndrome is
- 1/4000 based on neck measurements they took today on ultrasound-Whew what a relief! The baby's movements were so cute and precious. I am so happy-despite getting sick every morning. I am getting excited about
going home to
Maryland. Oh yeah, the baby is 5.3 cm long and our due date is October 29th.
- 2 days before
d-day and still no signs of imminent birth besides
- my increasing discomfort and
irritability. I try to walk at least
- twice a day and run errands daily. My
energy level varies from
- day to day and sometimes I get very antsy and need to clean,
organize or bake. In the past week I have made soup, casseroles,
- shells, cookies,
cake, and muffins just because it keeps me busy.
- This waiting stinks!
- Well it's
official, I am a mother and we three are a family!!!
- Wyatt Kyle Sutker made his
delayed appearance at 12:14 am,
- 8lbs. 4 ounces and 20 inches. He has a full head of
- hair and blue eyes. A healthy appetite too. They said to start
- pushing at midnight and after 9 pushes (I guess) and 14 minutes,
- there was Wyatt. I
was not emotional at all at this time just happy
- and totally comfortable with him in my
arms! I nursed Wyatt in
the delivery room and he latched on right away. He is
such a beautiful baby, and so good!!!!
- I am writing with
Wyatt in my arms. He has been very clingy this week. Steve is in NY this week
so I am the only one here with Wyatt day and night. So far so good. Wyatt had
his first smile today! I laughed at him because he made a funny face after
eating and his whole face lit up in a great bug smile. I love Wyatt so much, he is
so full of life and such comfort. It is fun trying to figure him out and get to know
- Wyatt is asleep in
my arms-such a wonderful, sweet feeling. Hs seems to prefer it there and clings to
my shirt with his tiny little hands. Taking care of him is exhausting but we are
working into a schedule which helps.
- My beautiful,
precious Wyatt. Today we learned the most frightening and devastating news.
You have something called Spinal Muscular Atrophy which means that he muscles in your arms
and legs and chest are barely working. The neurologist says the prognosis is
grim-you will not live to see your first birthday. You have just arrived and are
soon to be leaving us. your journey is to be a short one but no less fulfilling or
joyful to those who love you than someone who lives to be 100. As I hold you in my
arms or nurse you at my breast I am overwhelmed with love and grief. You are our
gift, and have been right from the start. From that first sign of morning sickness
to the first kick and hiccup, to your entrance into this world bright-eyed and curious.
I never imagined what motherhood would be like or what I needed to do but, you
patient and showed me the way. We make a great team, you and I. I wish there
was more time to get to know you. The pain, emptiness and ache that I feel now will
not compare to what I will feel when you leave us but it hurts non-the less. Just
know that we have done all that is humanly possible for you and have showered you with our
unconditional love. Your gentle, sweet spirit will stay with us always-just know how
much I love you my sweet, sweet Wyatt.
- What am I going to
do? My baby is dying right before my eyes and there isn't a damn thing I can do
about it. I feel as though the only thing that I can do for him. feed him is the
very thing killing him. He is choking on my milk. There is no worse feeling in
the world. Every time he feeds I begin to wonder as I look at his sweet face if this
is it. And I feel so helpless and alone. I know that I am not alone,
surrounded by friends and family, that love me, but my grief is my own and no one else can
feel it as I do. I have had the gift of carrying him for a year now. He was
living inside of me and no other. There is an incredible emptiness inside already
every time I see my stretch marks I am reminded that my sweet, sweet baby so full of
life is so close to death. At times I want to run and hide, relinquish control and
become the bystander. At times I feel resolved to the facts and accepting of the
path Wyatt will show us. At times I feel like collapsing into a ball in the corner
of the room and weeping like a child. At times I want it to be over, at times I
don't want it to end no matter what we have to do. I don't know how I get through
everyday-they are a blur.
- I feel somewhat
detached about things and about caring for you. Knowing that I feel this upsets me a
great deal. I think perhaps this is because I am no longer nursing you. This
bottle feeding seems so much more tedious. I sometimes have a defeatist attitude,
like why do we work so hard for all of this feeding stuff if you are going to die no
matter what we do. Such terrible thoughts!! I feel so guilty but know that this is
normal. I love you so much and don't want to be without you-what so I do? I am
grateful that we are your parents, that we have this time with you, for caring friends and
family, and for God's love.
- I don't know how
to put my feelings into words. I guess I feel like a surfer riding the waves-content
to be paddling a relatively smooth water riding and facing a challenging wave as I see it
approaching, and taking a dive as an unexpected tidal wave overtakes me. My
emotions-fear, comfort, calm, unrest, anxiousness, sleeplessness, worry, denial,
happiness, sadness, pride-all cycle through me in an unpredictable pattern. When I
least expect it I lose control-when I expect to lose control I somehow find strength and
get through. I enjoy being a mother so much, and know that I will always be a mother now.
But my empty arms will always long for you Wyatt. 20, 30, 50 years from now I
will remember how you smelled, how you felt, how you snuggled, how your sweet, soft breath
felt on my chest. How you always smile just for me and your eyes follow me around
the room, and how only I can calm you. Your world depends on me for comfort and
play. I hold your tiny arms to help you reach for, touch, and hold toys. I
care for your night and day. You are my life-what I look forward to seeing each
morning. What will I do when you are no longer here to touch, cuddle, and comfort?
Will I be able to carry on these things in my heart? In my mind? How will I
make it through the dark death rituals and find myself again? Will I like the new
person facing me each morning? I wish I could think or say something profound but
all I can do is feel and let myself feel everything. I must feel and I must
remember what I feel. I must remember everything.
- My days are
blurring together. I am in a whirlwind constantly fighting to keep my balance.
Everyday it starts all over again. Took Wyatt for a walk yesterday then sat
holding him on the front porch. Feeling the sweet soft rhythm of his breathing while
smelling and seeing the first signs of spring. That is as close to perfection as I
can get. And strangely enough I thought this would be an OK time for Wyatt to go,
while in my arms on this beautiful day. Wyatt now cries incessantly nearly all
morning long-we do everything we can and still it continues. I don't want him to
suffer yet I don't want him to leave. Today Steve and I discussed Wyatt's legacy.
We have decided to donate Wyatt's spinal cord to science in hopes of helping
figure out this horrific disease so that the next generation or 2 of ours will not have to
go through what we have.
- On this absolutely
beautiful, sunny, and flowery spring day my precious Wyatt died. We held him tightly
as he took his final breath. It was not a struggle, it was peaceful and calm.
It just felt right-he wasn't fighting anymore. We took turns holding him and kissing
him and cradling him. All the while knowing that this empty shell wasn't really my
Wyatt. My Wyatt has made his way up to the clouds, up to the sky and the stars, where
he can finally move about in the way he wants. I know deep in my heart that he is
watching over us and helping us cope. He waited for us both to be with him this
morning, he chose a beautiful sunny day to lift our spirits, he waited until after meeting
his cousin-my smart little boy had it all planned. I feel totally empty inside and
deflated. A long walk with Steve helped but we just don't know what to do. We
are going through the motions of everyday activities automatically. The phone keeps
ringing off the hook. Why don't people wait? Why don't they leave us alone at
least a little bit? Wyatt's incredible journey is over and ours now continues.
I can't continuously dwell on the past or I will become nothing. I feel we need to
celebrate Wyatt's life and begin to live for ourselves. I know that Wyatt
would want this and does want this. I miss my baby so desperately already.
Today we placed Wyatt's remains in the cold, dark
ground. It doesn't seem at all real. It was cool and gray before
and during the 10AM service. It was a beautiful service and so many
friends and family were there to show their love for Wyatt and for us.
Then as we were leaving, you showed your smile once again with a ray of
sunshine, Wyatt. Your tiny casket looked so small and plain it all
seems so strange because it is not you. I felt like screaming,
"Why are we all so sad-this isn't Wyatt-he is playing happily above
us!" Steve and I feel a mixture of emotions and feel numb in many
ways. It just doesn't seem real at all. I just feel so
empty. I wear his picture and a locket of his hair in a locket close
to my heart.
I feel like the last year and a half never really
happened. I look at pictures of Wyatt, of me holding Wyatt and I can't
remember. I so desperately want to remember how he smelled, how it
felt to hold him close, how he slept in my arms, how it felt to nurse
him. But I can't remember! Why can't I remember?? Thank God for
our videos. At least I can see him moving and feel the
"realness" of Wyatt that way. The still photos don't do
anything for me. I miss him so much my whole body aches. This
hurts like nothing else has or ever will.
On the morning after you died we saw a family of 6 deer
walking towards us not 10 feet away. According to Native Americans, so
I am told, deer represent a link or escort to the spiritual world, a way of
letting us know that you were ok and we should breathe deeply and discard
our worries. On the morning of your funeral, your Daddy saw a baby
rabbit in the backyard. We had been putting off getting ready to go to
the cemetery. The rabbit represents attacking and overcoming fears
through gentle persuasion. Were these signs from you Wyatt? I believe
they were. I look for signs everyday. You are helping us to
accept and feel ok about your leaving and lifting our spirits so that one
day they too may soar like yours. Lost is our innocence, gained is our
strength and courage of true love-to love and let go is the hardest, largest
challenge for any human. I will continue to greet you each morning-you
always woke with a smile-and say goodnight with a kiss each night. my
little angel, I hold you close to my heart and feel your breath in my ear
when I listen-when I really listen.
Well that does it, I'm a 29 year old mother of a dead infant
who doesn't know who she is or what she wants to do or how to be totally
happy. I miss Wyatt so much. 2 weeks ago today we buried my
son. How is that possible-it doesn't seem real to me. I feel
like I am constantly searching for something just out of reach.
Wyatt's garden went in today. I want it to be
children's garden where Wyatt's brothers and sisters can pick flowers and
feel close to him. It will attract birds and butterflies too. So
far we have planted roses, a red bud tree, a flowering pear tree,
strawberries, purple coreopsis, and honeywort.
We attended an SMA fundraiser today and met other families
face-to-face for the first time. It was awkward and I felt sad.
Meeting others who have suffered upset me a great deal. No one should
have to feel the despair and grief of shattered promises and broken dreams
like we did. It was like being welcomed to a club that you would do
anything not to be a part of. I don't want special attention because
my son is dead but I also don't want his life and death to go
2 months ago my son took his last breath as I held him
close. So little time has gone by and yet it seems so long ago.
I wonder everyday what our lives would be like, what we would be doing, and
how happy and fulfilled we would be if Wyatt never had SMA. I worry
that we will never, ever come close to having that again. We
religiously care for Wyatt's grave-the last of our parental
responsibilities, yet every time we visit it seems surreal.
The test was positive. I can hardly believe it. Steve definitely
doesn't believe it. I have such feelings of joy and excitement but fear at
the same time. I want so much to believe that we will have a family and be
healthy and happy.
This has been an emotionally draining day. Our visit with the midwife
was a mixture of joy and exuberance, and fear and anxiety. My tears of joy
knowing we have a 6 week old growing inside mixed with my tears of remembrance
of Wyatt. I began remembering the wide-eyed wonderment and anticipation of
being pregnant with Wyatt. I always had only good thoughts. I
trusted that everything would be fine. And because I was so horribly,
terribly wrong, now with this pregnancy I don't know what to think. if I
have good feelings and believe things will be fine-does that mean that they
Well, one step or hurdle is finished. The CVS went off without a hitch
and after a day of fatigue and soreness in my tummy I feel relieved and almost
back to normal.
I heard the baby's heartbeat for the first time-what a glorious sound.
The baby sounds healthy so now we continue to wait and hope, and pray. I
want this baby-I already love it so much.
It seems as though life is determined to keep me off balance and
searching. Steve flew home with the horrible news that this beautiful,
incredibly loved unborn child has SMA like it's big brother. After the shock and disappointment, I only feel totally and utterly defeated and lost. I
don't understand why, when the only thing we hope for, a healthy baby, continues to be out of reach. Unobtainable. I can't help but think
that I may never hold a child I have birthed, again. I feel like such a
failure. I didn't know I had any heart left to break. Tomorrow,
Wyatt will greet his baby brother.