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.

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

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.

A MOTHER'S JOURNAL

Before Diagnosis

After Wyatt's Passing

Second Pregnancy