I try so hard to do justice to your memory, to be strong and move about this world like everyone else does...on some days, I find that almost impossible to do.  You lived such a brave life, you fought for each breath you took, day in and day out; why then is it so hard for me to be that brave? I have no way of knowing how or what you felt, all I know is that sometimes, the ache in my heart is so great that I'm sure people around me can feel it.  I'm trying to be present for everyone else but I'm not sure what that means some days.  I go about my day like anyone else would, I get up, take a shower, eat breakfast and then what? I miss you, and that continues all day, all the time.  I close my eyes and remember the way your breathing sounded, I think about how the weight of your body felt in my arms and my arms start to ache.  I remember how your hair used to tickle my nose as we sat in our chair, how my arm would always fall asleep under the weight of you.  I remember how your drooling would leave a big wet circle on my t-shirt and I remember how peaceful you were in my arms.  It's hard knowing that I have to go on day in and day out without. 

Even though I knew you'd never grow up, that you would never get to do what other kids will, it still doesn't make this any easier.  I still think about the things you should be doing, I see other kids running around and playing and think about how great it would have been to see you do that.  There are signs up all around town for football and baseball sign-up and I wonder which one you would have liked, which one would you have been good at.  I see kids walking to school and think soon, that would have been you.  Even though I knew that would not be your life, it's still hard not to imagine.  Your life was quiet, and comfortable, it was full of love but also medicine and machines - I still find myself putting the dishes away very quietly and get mad at myself when I make a loud noise - I don't need to do that anymore.  I went from being on high alert 24/7 to hitting a wall and I'm still trying to figure out how to deal with the emptiness and heartache.  I thought it was quiet before in this house - now, it's really quiet. 

I'm trying to be as brave as you were, but the truth is, I'm not.  I'm sad and I'm broken and I'm reminded of that every morning when I wake up and you are not here with me.  I have two children, one all grown up who has long since stopped needing his mommy, and one who I can no longer see or touch...

We wrote your name in the sand at Point Loma National Park, San Diego, California....

The annual family conference is never "easy" but it is so nice to be with a group of people who know EXACTLY how you feel.  It doesn't matter if this is your first conference after being newly diagnosed, or your first after the loss of your child, there will always be someone there who knows exactly how you are feeling in that moment and can share their experience with you. 

Sadly, there were only a few "affected" children this year at the conference, many just couldn't make the trip but painfully missed are the one's who are gone from this earth, like our Kaleb.  I remember our first conference - well, I remember being there and meeting people, the rest was a blur because it had only been 3 weeks since we learned about Sandhoff's Disease, but I remember feeling comforted there by the strangers who opened their arms to me and instantly welcomed me into this family.  I remember hearing people say things and thinking that's exactly how I feel, I remember the feeling of relief when I discovered I was not alone and mostly I remember seeing families who had lost their child, functioning, smiling and laughing, something I was sure would never happen to me. 

Preparing for this conference was easier, there were no medicines to dose, no food or pump to tote, no cumbersome suction machine, I didn't have to worry if I had enough seizure medicine to get through the day; this time, all I had to pack were some clothes, a picture of Kaleb and his "baby" (I would have rather had to pack all of his things).  I just keep thinking that only a year ago he was with us, that seems like only yesterday, yet it has been only six months since his passing and it feels like a lifetime.   I was not able to mentally prepare myself for this one, this time I would be attending the bereaved parent groups instead of the groups for affected children.  How would I handle looking into the faces of the newly diagnosed families and telling them they would be "ok" when I am not.  How do you tell them that they will get through everything when I feel like I'm drowning in my sorrow.  By the end of the three days I was so emotionally drained that I could hardly stand, yet I find myself counting the days until next year. 

I got to cuddle my beautiful little Mallory, stroke her little cheek and hold her hand.  I got to wrap my arms around two beautiful little boys, Kuper and Isaac, and I am so thankful for their parents sharing them with me.  Secretly I just wanted to "feel" Kaleb with me, I had hoped that holding those precious little boys would, if only for a second, let my arms remember what Kaleb's body felt like in them...I wanted to close my eyes, sniff their hair, feel and see Kaleb....it didn't work.  I felt privileged to hold these little Angels, but it did not make my longing to have Kaleb in my arms go away, I miss him so much. 

Sometimes I feel like I'm stuck in a world that continues to turn around me, with me unmoving, standing still, becoming more lost in my sorrow, but being with my NTSAD family reminds me that sometime, someday, I will be OK. 

March 19, 2010, started out as a beautiful, sunny  day.  Kaleb was sitting in his high  chair and I was feeding him his favorite cereal with fruit.  Shortly after 8:00 am the phone rang, it was a nurse from Duke (we contacted them three weeks prior when the eye doctor told us he thought Kaleb may have Tay-Sachs).  The staff at  Duke were waiting on the official diagnosis to confirm our appointment.  This was not the nurse I had been speaking with, it was her day off, so this nurse, whose name I can no longer remember, told me that the lab results had been received. Then she said that his results did not show he had Tay-Sach’s (for a  brief moment I heard the Angel’s singing) then she said, his test results indicate he has Sandhoff’s Disease.   I began to cry as my world crumbled again - at this point, from everything I had read, Sandhoff’s was described as a faster progressing, more rare form of Tay-Sach’s Disease, so in my mind we just lost another year with him.  After meeting the families in the NTSAD, I soon realized the name of the disease, or the age of the child really
didn’t matter, some live longer than others and no one could tell me how long that would be.

Last year I took him to the Build A Bear store in the mall, and together, we built us (me) a teddy bear.  If you don’t have a store like this, you go in, pick out your stuffed animal, a music box if you like and a little red heart to put inside your bear.  The red heart you hold in your hands, give it a kiss and then it goes inside the bear.  You get to decide how soft or firm you want your bear, then you give him  a bath, get his birth certificate and take him home. 
I did not know that when we built this bear last year, he would be gone  this year, I feared that would be the case but since that fear has been realized I’m glad we had that experience.  
 
The day that I dreaded for two and half years ago has come and gone and I find myself  still picking up the pieces of my heart.  We watched him over that time, slowly slip away and that was terribly painful.  Grieving over all the things we would never have, all the things he would never do, that list is so long, but nothing was as painful as watching him take  his last breath.  It’s been five months now and I didn’t know how I would survive; the pain in my heart was so severe that I didn’t think it could continue to beat, yet here I am five months later, without him.  The sun continues to rise and to set every day and there is not one moment that I am not thinking about him. My arms often times feel so empty and they long to feel the weight of him and it goes without saying that I miss him so much!  
 
In our special community we often times talk about which day is worse, I can’t say that one day was harder than the other, they were both very painful and, grief is grief.  I still think about all the things that we lost after diagnosis but now, coupled with those losses comes the physical loss of his body, the finality of all of those losses.   Is it harder to watch your child slowly die, or is it harder not being able to hold him? Is it more difficult wondering if today is his last day with you or is it harder knowing your last day was five months ago?   I don’t know how to answer these questions because they are both unfathomable yet for me they are very real.  
 
Kaleb was “gone” long before his body quit working, but his soul was so beautiful and it drew love from every person who laid their eyes upon him.  If love were more than just an emotion you can feel, if it were something you could touch, it would have been Kaleb.  You couldn’t help but instantly love him and who he was, even though for all intents and purposes he could “do” nothing.  He couldn’t look at you, but you couldn’t not look at him, he couldn’t talk to you but you couldn’t help talking to him, he couldn’t say “I love you” but you couldn’t be in his presence and not feel love.  Kaleb demanded nothing from anyone, he didn’t know any better, but Kaleb was love in the purist of
forms.  He taught me more about life in his four short years than I had learned on my own in 40 plus years.  
 
I thought being a deputy showed me a lot about life, honestly it just showed me a lot of the bad things about life. 
I had stopped believing there were good people in this world, but Kaleb showed me the opposite.  The kindness of strangers during this time has been amazing and although I honestly could have spent the rest of my life in blissful ignorance to Sandhoff’s Disease, he introduced me to a world of loving, kind and compassionate people that were truly instrumental in helping us care for him and ourselves.  The lessons that Kaleb taught me came with a price but I am so grateful for the opportunity to love him and learn from him. In our role as parents, we are supposed to be the teachers, but in our case, Kaleb taught us. 

His body is now gone from this world, I cannot hold him, see him or touch him, I don’t remember and cannot find his “smell” anywhere in the house but I will never forget how he felt in my arms.  I will never forget that for a brief
moment, I held an Angel in my arms.  
 
Grief is the price we pay for love ~ unknown

I spend a lot of time going over my life with Kaleb and I remember being so sad that I would never hear his say mommy or I love you, and while I still long to hear those things I recently realized, as I looked through photographs and videos, that he did say "I love you" in his way.  I can see it in several of our videos where my face is inches from him and I'm talking to him, he could hardly move but he fought so hard to make eye contact and even though he could no longer smile, it was there.  I often wondered if he understood what love was since that is all he ever received from everyone.  For him, that was a way of life, so I wondered if it was special to him; and again, thanks to the photo's and videos, I know that it was.

I don't spend a lot of time writing here anymore, I write in my personal journal almost daily but it has occurred to me that a lot of what I write is "sad" and people don't want to read that or know that I'm sad.  I don't ask that anyone understand my pain, in fact, I hope that you don't - sadly,  I know many who read this do understand. What I need everyone to know is that, I am sad, I lost one of my children and I will never "get over it" but I will be ok.  You should understand that I am not the person I was four years and five months ago, nor will I ever be and the person I am to become is still undetermined.  You will see me smile, and you will hear me laugh, but I will never get over losing Kaleb.  There will always be a sadness and an emptiness inside my heart that will heal but never go away.  Occassionally, you will see me cry and that has to be ok.  But, if you are my friend, I want you to say his name, I want you to talk about him.  You should know, I will NEVER forget him and I need to know that you won't either.  One thing I am learning is that grief is a journey, it's not something you get over, it's something you get through.  There is no time limit on when things are going to get better; today may be better than yesterday and tomorrow I may breakdown, it's a process and that is what you should know to help me get through.

"If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they died--you're not reminding them. They didn't forget they died. What you're
reminding them of is that you remembered that they lived, and that is a great  gift." -Elizabeth Edwards

Three years ago today, I took Kaleb to the eye doctor and while we didn’t  walk away from there knowing his diagnosis, we did walk away fearful of his future.  Eight days from today, Kaleb will have been in his Heavenly home for five months.  Those two years and seven months in between went by so quickly, yet while we were in it, it felt like slow motion.  Many times after someone passes away, we are left with handfuls of regrets, “what if’s” and “if only‘s.”  While I do have a few “what if’s” and “if only’s,“ I am content in the knowledge  that I cared for him the best way that I knew how to.  

One thing that is for certain, you will never hear me say “I wish I had held  him more.”    I went on auto-pilot after Kaleb’s diagnosis, I enjoyed every  moment with him yet at the same time I held a high amount of anxiety and fear,
(as hard as I tried not to) I was constantly wondering when we would lose him.  I was constantly on "high alert" trying so hard to anticipate his every need.  My priority during this time, was to cram as much love as I possibly could into the short amount of time we would have with him.  I spent hours upon hours of everyday sitting in a chair, or laying on the couch with him in my arms.  We cannot be certain of  what his brain allowed him the opportunity to know, he may not have known  what the word love meant, but I am certain he knew what it felt like.  Oh sure,  I had my days, especially prior to diagnosis, where I needed a “mommy time out”  and there were a few times even in the last couple of years when I would become  frustrated - with my inability to comfort him or know what to do  for him.  Occassionally, I got a little stir crazy from sitting in the house all the time, but I knew that was a small sacrafice for me to make as he was just much more comfortable being at home.  Being one with Kaleb made me so in tune with him that I could tell in the dark when he was having a seizure by listening to  his breathing, and I could tell, also by his breathing, that he would soon spike  a fever.  That was our means of communicating, it was mostly guess work on my part but he always seemed comfortable and my hope was I provided him with everything he needed. 

I knew during the month of September, he was rapidly declining, I could see his body getting tired of fighting this horrible disease.  I was trying to prepare myself for those final moments as best I could but when it happened I fell apart, you just can't be ready to say good-bye. 

My days are now free of anxiety and I can honestly rejoice in the fact that he is no longer suffering,  but my heart is heavy with the loss it feels.  I’m doing “OK”- it doesn’t hurt any less, on the contrary I think each day it hurts a little more because it’s been that much longer since I’ve seen him, held him, touched him or kissed him - but I think my heart is getting used to it’s new normal.  I’ve run across this saying many times in the past couple of months “Fall down seven times,  stand up eight.”  It’s hard trying to get back on my feet, but I haven’t given  up, I know I can do it and I will do it, eventually.

My friends, hold your children a little closer today, never take a single  moment for granted, only God knows what tomorrow holds.  Christopher I love you  with all my heart - I wish you were here for a hug!   Jessica, Andrew and  Charlee - I love you guys and I am grateful for the opportunity to be in your lives!

God sent an angel to the earth 
by Unknown Author

God sent an angel to the earth... 
The sweetest angel too
and for such a tiny little thing, 
he had so much to do. 

He knew he did not have much time 
upon this earth to stay, 
so he did not waste a second; 
he got started right away. 
 
His eyes were bright and sparkly, 
he took in every turn. 
He did not miss a single thing, 
because Angel came to learn! 
 
God sent him here to touch the hearts 
of those he could not reach... 
He taught them courage, 
strength and faith, 
because Angel came to teach. 
 
His tiny little body was 
so full of God above, 
you felt it when you held
him,
because Kaleb came to love. 
 
In four short years he managed 
what many never will. 
When he went home to Jesus, 
his purpose was fulfilled. 
 
He learned and taught, 
loved and played, 
he learned his lessons well. 
I know He was so proud of him 
when he went home to dwell. 
 
But when I miss him 
OH-SO-MUCH, 
I can almost hear Him say, 
please understand, his work was done...
Kaleb did not come to stay.

There are a handful of things that have happened in my life that I know I will never forget. One of those things is when I held Christopher for the first time. My heart grew the minute they placed him in my arms as I held him I was sure my heart was going to explode with love. I had no idea that you could feel both an immeasurable amount of happiness and an overwhelming amount of fear all at the same time. Christopher showed me what it meant to be a mom, to know I would give my own life to keep him safe, protected and loved. Nearly eighteen years later, he has become a remarkable young man that I am extremely proud of. Christopher taught me how to be a mom, he taught me the meaning of the words “unconditional love” and I don’t know what I’d do without him.

I will never forget the day Dave and I said “I do.” What it felt like to watch him profess his love to me through tears in his eyes and for me to do the same.

Then, there’s Kaleb. There was a point during labor that I feared we were going to lose him, I remember looking at Dave with tears and terror and asking why they weren’t doing something, why didn’t they just take him, what where they waiting for??? It was an eternity before I actually got to hold him in my arms and I was so relieved and happy, my heart full of love. This time, I knew how to be a mom, I knew what to do and when to do it, it was going to be easy….I was so wrong. Before we got the terrible news, Kaleb gave us some beautiful smiles, he had such an infectious laugh and millions of cuddles, he was spoiled he wouldn‘t sleep anywhere but laying on us! Images that will forever be ingrained in my memory.

Then of course there is diagnosis day - the day I learned that Kaleb was “terminal” that his mind and body would slowly fail him and that we would be lucky to have him for the next couple of years. The seizures, the suctioning, the feeding tube, and all of the medicine we used to keep him here with us. We lived in anticipation of what was to come for him and watched as he slowly slip away, helpless to do anything about it.

My lessons from him where very different that I had expected. I learned how to be a caregiver, a mind reader, a doctor, a therapist. He taught me to live each day as if it were my last, he taught me tolerance and patience (ok, so I’m still lacking in that area but not like I used to be) he SHOWED me unconditional love and trust. He taught me to renew my faith and my hope in God and humanity and he made me stronger than I ever thought I could be. My children showed me what it was like to live, to love and to be loved.

I was with my father when he took his last breath, I will never forget seeing him lying in that hospital bed the strong man from my childhood lay looking helpless and so much older than he really was - with wires and tubes coming from all sides of him. I will never forget what he looked like as they turned the machines off that were keeping him alive. I held his unresponsive hand in both of mine as the last breath escaped his body , that fast and he was gone.

I knew Kaleb was preparing to leave us, his body had begun to swell and he was unable to open his eyes. I will always remember with great happiness the hours upon hours that I sat holding him, the millions upon millions of times that I kissed him and told him I loved him. As hard as I have tried, I cannot forget what it looked like and sounded like as he took his last breath, before I even realized it was happening, he was gone from me forever.

I will NEVER, EVER forget what it felt like to hold his lifeless body in my arms. I guess it’s only fitting that as his mother I was the first and the last to hold him. Engraved on my memory is the image of Dave placing him on the gurney, we stood at the window with complete numbness as his body was wheeled away from us, placed into the back of a van and the doors closed. By the time his funeral came around I was on auto pilot but the tiny little boy that laid in the adorable little coffin, did not look like my son - I guess maybe that’s because the most beautiful part of him was already gone, his soul was already in Heaven with his grandpa. As they closed the lid of the casket and later lowered it into the ground I felt that my life has been forever changed, part of me went with him that day and the other part is left trying to figure out what to do now.

My life has taught me so far that, as cliché as it sounds, “bad things happen to good people”, and “life isn’t always fair” but I have also learned that God is good and Kaleb is healed. He is at peace and rest with his grandfather waiting for the rest of his family to join him.

Isaiah 57:1-2 “The righteous perish, and no one takes it to heart; the devout are taken away, and no one understands that the righteous are taken away to be spared from evil. 2 Those who walk uprightly enter into peace; they find rest as they lie in death.”

I'm sitting here tonight in the place where your bed used to be and I was just thinking about how many hours I sat here in silence with you, holding your hand and stroking your hair. I miss you so much. It's been 8 weeks since I've held you in my arms and the last time i held you, you were already gone. My arms feel so empty without you.

I am grateful for the sleep I get now because that's a good 6/7 hours that I don't have to think. Waking up is a different story, it's like starting the process all over again. Some days are easier than others but lately its been pretty hard. Maybe it's because Christmas is coming, it's always been pretty sad knowing you couldn't enjoy it and thinking each one might be your last, of course that fear has now been realized.

I try not to be sad but it's so hard. I know you are enjoying yourself, you are free and happy, which is all I ever wanted for you, I just wish I could see it.

This was Kaleb's first picture with Santa at only 2 1/2 months old, December of 2008.  Seems like a lifetime ago and yet it has only been four years. 

Thanksgiving just passed and the day was pretty good, all things considered.  We started off the morning by going to the cememtery to spend a couple minutes reflecting at Kaleb's grave, there were some tears shed but it was to be expected.  We then made the three hour drive south of here to spend the day with my brother and his new wife, mom and Dave and I.  This was our first holiday without my dad too, so as I said we all knew the day would be tough but we made it through.  We had a nice dinner and some laughs as we talked about past holidays with Dad.  When the evening was over we drover over to my brother-in-laws house to spend the night (he lives closer to my brother than to us).  It was as we got in the car to head over there that everything really hit me and I didn't think I would ever stop crying.  I realized that the last time we were at their house Kaleb was with us and that brought me down hard, he had never been to my brothers, even though his presence was missed he had never physically been to his house so I guess somehow that made things a little easier but that wave crashed down on me pretty hard and it took me awhile to get back up. 

Now you can't go anywhere without seeing everything Christmas.  I just wish I could go to sleep and stay asleep until after the New Year.  We recently attended a  Grief Share seminar called "surviving the holidays".  We broke down into small groups and shared our stories and what I find most difficult about this type of sharing is making people understand that we have been grieving for two and a half years, it's just more intense now because he is physically gone.  People think that you have a "normal" child who just gets sick and passes on.  We have to explain that we thought we had a normal child for about 7/8 months and then were forced to watch him decline little by little until he could no longer do anything.  That he was never able to crawl or walk or talk, to lose a loved one is hard enough but to lose one in such a cruel way, in my opinion, makes it worse.  He was never able to say I don't feel good or my stomach hurts or no I don't want anymore food, he couldn't tell me that he was having a hard time breathing or tell me if something hurt....so sharing our grief takes time to explain in a manner that people might understand how we are feeling.  To understand that after his first Christmas, (we were still in the dark at his second Christmas but we knew something was wrong)  the holidays have never been a happy or easy time for us but will be even more painful this year and the years to come. 

If we could, we would avoid Christmas all together, but that is definately not possible. 

Bears have the right idea....hibernation!!!

I wake up every morning with an ache in my heart and an image of that sweet face.  Today, my first thought this morning was, did I clean the inside of his mouth enough in his final days, was his mouth dry and I should have swabbed it more?  It’s been seven weeks today, I don’t know how it’s happening but life just keeps moving on and with it, so do I somehow.  A friend told me that grief had been described to her in this way….it’s like you’re standing at the beach with your back to the ocean, right now things are fine but then out of the blue a giant wave comes crashing into shore knocking you down with it and that is SO true.   I was in Target the other day, one isle over I heard this little boy “momma, momma” I started wondering what Kaleb’s voice would have sounded like and once again wishing I could have heard him call me mommy, just once – my “ok” day just took a serious turn and I had to come home.   

When I was a child, we often went to church and Sunday school I was baptized at the age of 13.  Then I started thinking about some of the bad things that had happened in my life and decided that I wasn’t worthy of God’s love and quit going to church.  I never stopped believing in God or the idea of Heaven and Hell I just gave up on it.  When we discovered that Kaleb wouldn’t be with us for very long I started thinking about my relationship with God and realized that I needed to “fix” it.  My interest for renewing my faith and spirituality may seem to have selfish motives,  but within the last couple of months I discovered that the only way I was going to make it through this was with the strength of my family and by putting my life back in God’s hands.  Dave and I have started going to church and we talk about God and the Bible, mostly about Heaven and what we think it is like for Kaleb.  When Kaleb was here, people used to say “I don’t know how you do it” and my answer was “I have too, he needs me” now when people say “I don’t know how you do it” my answer is “neither do I” but I get out of bed each morning and that morning turns into another and another.  I still have my days where I fall flat on my face but I get back up again and somehow keep going even on the days that I don’t want too.  Sometimes I can feel myself becoming stronger –it’s like God has his hand on my shoulder reminding me that I have a strong husband, supportive family and friends, telling me that if I put my faith back in Him, He will give me the strength to l make it through this.

This is the lyrics of a song from Mercy Me, shared with me by a dear friend...

"The Hurt & The Healer"

Why?
The question that is never far away
The healing doesn’t come from the explained
Jesus please don’t let this go in vain
You’re all I have
All that remains

So here I am
What’s left of me
Where glory meets my suffering

I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into Your arms open wide
When the hurt and the healer collide

Breathe
Sometimes I feel it’s all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord take hold and pull me through

So here I am
What’s left of me
Where glory meets my suffering

I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into your arms open wide
When the hurt and the healer collide

It’s the moment when humanity
Is overcome by majesty
When grace is ushered in for good
And all our scars are understood
When mercy takes its rightful place
And all these questions fade away
When out of the weakness we must bow
And hear You say “It’s over now”

I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into your arms open wide
When The hurt and the healer collide

Jesus come and break my fear
Awake my heart and take my tears
Find Your glory even here
When the hurt and the healer collide [x2]

Jesus come and break my fear
Awake my heart and take my tears
Find Your glory even here

It's been five very long weeks and my arms feel so empty without my 30lb "baby" to hold.  I've come to the conclusion that things are never going to get any "better" than this - I'm going to spend every day missing you and wanting for you.  I spend some part of at least every day, going over your last hour and a half with us.  Every time I'm in the car I, without even thinking about it, look over my shoulder to the place you are supposed to be and you aren't there.  I spend hours staring at the corner where your bed used to be and when I close my eyes - I can see you there, but when I open them, you are gone. 

I physically got to be your mom for four years but,  for two years and nine months I spent every waking moment being your everything - your mom, your nurse, your doctor, your nutritionist, your mind - like I could read it, I had to try to know everything for you and now, I am a mom without kids.  Christopher is grown and doesn't need me, and you are gone.  I somehow manage to keep myself busy through out the day, but the night time is the hardest.  If I could sleep all the time, I wouldn't have to think or feel.  I see you sometimes in my dreams, but its the you that you were while you were here.  I don't know how to think of you as the "you" that you are now - what does your voice sound like, your little frog like legs now strong and standing, your feet walking across the streets of Heaven - it must be a beautiful site and a wonderful feeling for you....

I miss you so very much.