​It's been a long time since I've written here...I think I say that every time I do write something.  It's hard to know what to say at this point, everything sounds redundant.  Monday was the 8 year anniversary of diagnosis day.  I woke up that morning, not feeling like myself and not really knowing why.  Personally, I do not agree with the statement that time heals everything, time just has a way of making you more numb to the pain that you feel each day...just not on "anniversary" days. 

When I woke up Monday, I didn't know what the date was, but my body did.  Grief is a part of my everyday life.  I have learned that you can be both happy and sad at the same time, I know because I am everyday.  I am truly happy, I smile and laugh everyday yet, at the same time, I am always sad.  Sadness is part of me, but on many days, people looking at me can't see it, but I always feel it on the inside.  So on this morning, I didn't know why my sad was showing until Facebook reminded me it was March 19, D-Day.

March 19, 2010:
It was early in the morning, the sun was shining, Kaleb was sitting in his highchair having his breakfast of cereal and yogurt when the phone rang.  We were already 99% sure they were going to tell us he had Tay-Sachs Disease so when she said the word Sandhoff's Disease, for a brief second I had hope that this new word meant he wasn't going to die, but I was wrong.  She explained that Sandhoff's was a more rare form of Tay-Sachs.  More rare than what was already rare?  How can that be possible?  At that time children with Tay-Sachs were expected to live between 4-7 years, Sandhoff's was 2-4 years and Kaleb was 18 months.  The sun may have been shining that day, but my world had just turned black.  Kaleb would live through 2 more anniversaries of diagnosis days after that but we have lived through 8 of them, with many more of them yet to go.

Eight years later I can remember that morning vividly it was devastating, and at that time, I didn't know how I'd still be standing once he was no longer with us.  I didn't want to think about the me I am now, I wondered how I'd manage, how could I possibly survive his loss when the idea that I was going to lose him was more than I could stand at that time.  It's amazing at how much we can adapt to the pain we feel, how we can learn to function and to be productive through the heartache.  Back then, I was sure it couldn't happen, but here I am.  Everyday is a lesson on how to live through the pain of life without one of my children.  But it is not a losing battle, he was a fighter and so am I and I know, one day I will see him again and oh what a reunion that will be!    

I started to write this the day before his birthday last September, and I never came back to it and finished it.  I find writing these are more difficult now because it's, now, almost been five years since his passing and I often feel that people don't want to know that I still mourn his loss.  I've heard so many times, "time heals", "it'll get better", and while these are somewhat true, it's really not what people mean when they say it.  They really mean, you should be better by now, you shouldn't still cry over his death, but those two things are things I will never be.  Grief is a daily, sometimes even hourly, battle.  Time has allowed me to handle his loss better than I did nearly five years ago, but grief is and always will be a daily part of my life.  

When I started this piece, Kaleb was about to turn 8; now that I'm finishing it, it's nearly his 9th birthday.  It's hard to imagine what he would look like now.  It's funny, I have written this post a hundred times in my head as I lay awake at two in the morning, but when I sit down to write, the words are gone.  What do you say about a child that most of the people in my life now, never got to meet?  I've been going back through pictures and looking at that sweet angelic face, that was expressionless and without emotion and often wonder, what kind of life did he have? I have no way of knowing how he felt, but I do know how I felt.  He was a precious gift that I am grateful to have had.  As much as it hurts to not have him with me, I would do it all over again.  He was so special and such an amazing gift; I am proud to have been his mother.  

For his birthday/Angelversary, I asked my aerial instructor, Lauriel, to choreograph a routine for me to record and post on social media.  I did do that, I just never finished this piece to post it here.  I told Lauriel that as this Angelversary passes, he will have been gone, longer than he lived and I wanted something to show the struggle that comes with deciding to get up every morning and keep going when sometimes, that seems impossible.  I chose the song "Tell Your Heart to Beat Again" by Danny Gokey.  You have to decide to live through grief and sometimes that means you have to tell your heart to keep beating, you have to will yourself to get up when you'd rather stay down. This piece showcases that struggle and this song says it all perfectly.  

Again, I DO NOT CLAIM OWNERSHIP OR RIGHTS to this song:
Song:  Tell your Heart to Beat Again by Danny Gokey
Choreography:  Lauriel Marques de Oliveira

​

I’ve been contemplating about how to write this post for a couple of weeks and honestly, I’m not sure how I feel about today. Six years ago we learned Kaleb had Sandhoff's Disease, it's been six long years since we learned our sweet little boy had a terminal disease.  I remember how I felt then, just like it was yesterday; but I don’t know how I feel now. Maybe numb is a good word, the anniversary of diagnosis day doesn’t carry the same sting that it did back then. From
March 19, 2010 until October 3, 2012, l lived each day in fear. The weight of this disease was a heavy burden for all of us to bear and I can’t even fathom what it felt like for him.  Just the pure stress of wondering every night, before I fell asleep, if he’d still be alive when I woke up was enough to make me feel like I had aged a million years. The mental anxiety caused by that fear, coupled with the added stress of trying to figure out how to manage his symptoms and keep him comfortable, made those two and a half years feel like fifty years but at the same time, it felt like only days. Back then, the anniversary of diagnosis day was a reminder of what was to come; now it’s just another day without him, another day to remind me of why he is no longer with us. 

GBO Black Belt “Fight for a Cure” Seminar (in honor of Kaleb’s Cure)

February 6, 2016 (2 seminars)
Kids seminar 11:00 am to 12:00 ($20)
Adults 12:00 to 2:00 pm ($25)
Photo Op at Noon with everyone

Proceeds will go to the 38th Annual NTSAD Family Conference that will take place from April 7 – 10th of 2016 here in Orlando Florida. http://www.ntsad.org/index.php/event-listings/family-conference/2016-family-conference.

Over 20 GB Black Belts will offer a once in a lifetime seminar to help raise awareness and monies for families and children affected with rare terminal illnesses.  Our proceeds will help create an amazing experience for 20-25 siblings of terminally ill children during the family conference where parents and affected children gather to learn about the latest medical research, counseling and ascertain much needed family support.

Let’s show how Tough we are when over 20 of the top BJJ Black Belts in the Central Florida area gather to help support these families and make a difference in their lives.

Oh what I wouldn’t give to wake up this Christmas morning and find my stocking full of this.  My heart aches to hold this sweet boy in my arms again!

As I sat down and thought about what I would write, I realized that I will probably lose some of you in my next few sentences but please, hang in there with me.  Whether you are person of faith or one of fate and destiny….you are here, reading this, for a reason.  I, not like many of you I’m sure, have had more than my share of “bad” things happen.  I grew up going to church, believing in God and even made the decision to be baptized in my early teens.  I didn’t have the understanding then to seek God during those times of trail, and instead, I blamed Him for my circumstances.  People often believe that if you are a Christian, bad things aren’t supposed to happen to you but the Bible warns us in John 16:33 “…In this world you will have trouble.  But take heart I have overcome the world.”  Those things, as bad as they were, shaped the person I am today and made me capable of not giving up during my most difficult trials.  Little did I know then, I hadn't experienced anything yet!  

I can’t think of too many things worse than losing a loved one, that’s hard to make it through, but to lose a child to such a devastating disease as Sandhoff’s, feels unbearable.  Three years after losing Kaleb, people still tell me they admire my strength and tell me they don’t think they could make it through something like that.  I don’t have that strength either on my own, I get through this loss with the love of my family and the renewed faith I have found in my God.  (Right now some of you are thinking I’m preaching, maybe a little – but stick with me.)

Kaleb’s life had a purpose, and his message was delivered in exactly four years and eight days.  It’s our job as his parents, to carry out that message.  I know people wonder how I can still have faith in God after going through what I have and what we have as a family, all I can tell you is this - His word reminds us in so many different places of His love for us, of His desire for us to follow Him, to trust in Him – to put our faith in Him, and we will have the wishes of our heart, in His timing:

Jeremiah 29:11 “for I know the plans I have for you declares the Lord, plans to prosper and not harm you, plans to give you hope and a future”

Isaiah 40:31 “but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint”

2 Corinthians 12:9 "my grace is sufficient for you, for my power is made perfect in weakness"

 and one of my personal favorites,

 Romans  8:18 “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.” 

These are the things that give me hope; these are the promises that give me strength.  I guess it would be easy to give up, and I certainly think people would understand in our circumstance that the pain is so incredible, it can be hard to bear – but even through all of the bad things, we have been given so many great things and that’s what we have to remember. 

Next week, Dave and I (mostly Dave) will be sharing Kaleb’s story.  One of Dave's gifts includes being able to stand in front of a group of people and tell our story - mine is sitting at this keyboard!   But, we will get the opportunity to talk about him and to share with people, even though we lost one of our precious children, we are “stronger because of it”, his life made us better and stronger people!

I am often reminded of what a friend told me - Kaleb is not in my past, he is in my future, and that is a promise I can hold on to.  So for all of you parents out there reading this who have lost a precious child, or to any of you who are going through a loss or hurt remember this:

                Romans 61:1-3  “The Spirit of the Sovereign Lord is on me …to comfort all who mourn, and provide for those who grieve in Zion-to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair.  They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.”

May you all have love and feel His peace this Christmas!

This is not a very good picture of Kaleb or I, when I took it I knew it would be one of the last ones I would get to take.  His birthday was a tough day, but the anniversary of his passing is even harder.  I've spent the past week thinking about his last week with us three years ago.  I agonize over whether or not he was in pain, this picture is heart breaking, and when I look at it I feel like I did that day.

When we got up that morning we surrounded him with our love and we watched him struggle, he fought so hard to stay with us.  I will never forget holding his little face in my hands and with tears streaming down my face, I leaned over and put my cheek on his and whispered into his ear, I will never be ok without you, but I can't stand to watch you struggle this way, it's ok to let go baby, I love you with all of my heart and I will miss you until we are together again.  A few minutes later, at 7:36 am, he let go and just like that his suffering was over and mine increased ten fold, but if I had to do it over again, I'd say those same words.  As a mother, and through my selfishness, I would have taken care of him for the rest of MY life, but also as a mother, I couldn't watch him struggle anymore.  It brings me joy to know he is free, but the ache in my heart from missing him is unexplainable, there are no words to describe this ache.

So, as the third anniversary of his passing approaches, all I can say is "I love you and miss you and wait for the day I see you again."

Revelation 21:4
"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."

Kaleb John Thomas Ogden
9/25/08-10/3/12

In one week, this sweet little baby would have been seven years old.  I can't even begin to imagine what he would look like.  I often wonder what his voice would sound like, would he take after his dad and love sports, or more importantly Jui Jitsu.  Wold he be with his dad tonight taking class (I'm sure he would be)?  What would his interests be? Would he like school, like his big sister Jessica or would he hate it, like his brothers Chris and Andrew? What kind of birthday party would we be planning for him this year?  I try not to dwell on these things, but this time of the year, it's hard.

Throughout my life, I have heard SO MANY times, life goes on.  No matter how much my heartaches, when I wake up in the morning feeling like today I just can't - somehow, I always do, and....life goes on.  We have gone through some major changes in these past several months since my last post.  I'm thrilled to have Christopher home with us, although I know he'd rather be out on his own - it makes my heart happy to have him close.  Dave and I bought and completely renovated a condo, that was a lot of work; and I recently went back to work.... life goes on.  

I have had the opportunity on several occasions to hear my husband tell our story in a public format, his message is a beautiful one; a message of turning grief into hope.  When I meet new people, they almost always say "I can't imagine..." but the truth is, they did, just for a split second they thought about what it might be like to lose one of their children and because it's such a horrific thought, they put it out of their mind.  That is then followed by, "I couldn't be as strong as you, how do you manage?"  We are not stronger than anyone else, we do not posses some special skill that keeps us from falling deep into that pit of sadness,what we have is hope and a promise that we will all be together again.  Dave and I have renewed our relationship with God, and His promises give us both hope.  We draw our strength from Him and each other.  We have both learned that we deal with grief differently, but we respect each other's ways of handling it.  We have learned together that grief is and always will be a part of our lives but it's not a place we stay in.  We do not go through grief, we live with it each and every day, it's now a part of how we are and yes, some days are easier than others.

I am grateful for the new friendships I am developing at work and I am grateful that I get to continue talking about Kaleb with people who did not know him, but want to.  I am grateful for my friends who continue to be there for me, nearly three years after his passing.  For friends who say his name and think of him often.  Too many times, I hear from other grieving parents, they do not get the support that we do.  I am most grateful for a closer relationship with my God, who has given me a wonderful husband, and for my children and grandchildren - they remind me that even though I have an ache in my heart, I still have so much to look forward too.  

Happy 7th birthday Kaleb.  You are gone from my eyes but never from my heart.  

1 Corinthians 13 (WE)


13 If I talk with the tongues of men and even of angels, but if I do not love people, then I am only like the sound of a big horn or a loud bell.

2 If I speak words from God, if I can understand all secrets, and know everything, if I can move mountains by believing, but if I do not love people, I am nothing, even though I can do all of these things.

3 If I give away all I have, and if I give my body to be burned, but if I do not love people, I get nothing out of it.

4 Love is patient and kind. Love is not jealous. Love is not proud and does not boast.

5 Love does not do things that are not nice. Love does not just think of itself. Love does not get angry. Love holds no wrong feelings in the heart.

6 Love is not glad when people do wrong things. But it is always glad when they do right.

7 Love forgives everything. Love is always trusting, and always hoping, and never gives up.

8 Love never ends. The gift of speaking words from God will end. The gift of speaking in different tongues or languages will stop. The gift of knowing many things will end.

9 Now we know only a little, and we can speak only a little of God's words.

10 But when everything becomes perfect, that part will come to an end.

11 When I was a child, I talked like a child. I understood like a child. I thought like a child. But when I became a man, I stopped doing things like a child.

12 Now it is like looking in a looking-glass which does not make things clear. We cannot see and understand things plainly. But when things become perfect, then we shall fully know and understand everything, just as God knows.

13 These three things will remain for ever. They are faith, hope, and love. And love is the greatest of them.