Wyatt's Web Site

                     Home Page

What's New


What is SMA?

For Parents

Family and Friends



Throughout pregnancy and since, I have kept a journal of my thoughts 
and feelings.  Originally this was meant to be something reflective that 
I could one day share and give to my child.   Then it became a way for 
me to fully express my inner-most thoughts, as I often have a difficult
 time expressing them to the same extent verbally.  I have found that
 keeping this journal has been very therapeutic and feel something
 askew when I don't take the time to jot down a few lines each night
 before sleep.  The following are excerpts from my personal journal. 
 I share them not to frighten but to comfort. I hope that it might help
 those who haven't experienced the loss of a child, begin to understand 
just a little bit, and that it may help other parents experiencing this 
unique loss to know that even though their grief is solely theirs alone,
 that they are not alone.

I have placed my entries in chronological order for easy reading.  However, if you prefer to read about certain time frames just click on the appropriate area of interest below.

Before Diagnosis During Wyatt's Journey
After Wyatt's Passing Second Pregnancy


Before Diagnosis

Took second home pregnancy test today-am definitely pregnant-WOW!!!! 
 I feel great physically and mentally.  I am looking forward to this 
adventure and know I really need to take care of myself and Steve. 
 I am scheduling a doctor's appointment tomorrow and am excited 
but a little bit leery, being in Australia and all.  I don't really feel 
any different-hard to believe a life is growing inside of me.  I can't 
wait to tell Mom and Dad.  I wonder how they will react???  Must wait 
another couple of weeks or so!
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 reddish blond
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 him truly. 


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 were 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.

After Wyatt's Passing


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 unnoticed.  


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.

Second Pregnancy


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 won't?


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.