It's been one month since we last held you in our arms and it feels like it's been years. Daddy and I have taken a couple trips to try and get away for a little bit but no matter where we go, we talk about how much we miss you being with us. Do you know there are still dirty clothes (not like you really got anything dirty) in the hamper in your room, I can't bring myself to wash them. People always ask how we are doing, I tell them we're ok. I really don't know how to answer that, I don't know how I am - I guess ok is the appropriate word to use right now - I manage to get out of bed everyday, but nothing is the same nor will it ever be.
I've been to the cemetery twice this week (today is Wednesday) to "visit" you. I know you are not there but it somehow makes me feel close to you. Some days are better than others, yesterday was probably the worst one yet (since your passing and funeral that is). I don't know why yesterday was so bad, and truthfully - today is not starting off much better either, I can barely see the words I'm typing right now.
I don't know if you can "see" us, if you can I need you to try and understand my tears are for me because I miss you and long to hold you and kiss you. I cannot begrudge you your freedom from this disease, I envision you running around, playing and you are probably talking everyone's ear off, you have a lot of time to make up for - I just wish I could witness it for myself.
Last Sunday, daddy got your portrait tattooed on his arm. It is beautiful, just like you. We carry you in our hearts and now you are proudly displayed on Daddy's arm for everyone to see!
The holiday's are fast approaching which were always hard anyway since you couldn't "participate" in the festivities - you never got to taste the Thanksgiving turkey or get excited about Santa, but this year is going to be even harder since you will not be with us. Daddy and I may just skip it this year, I wish we could do that, but we really can't. It's hard trying to figure out how to go on everyday without you, but we have too. Right now I'm kind of going through the motions, I guess one day, I'll figure it out or maybe it will just be like this. It's been almost five months now since your grandpa passed away and I can't say it's better, it's just different.
Yes, it's been one month since you've been gone which feels like an eternity but I try to take comfort in the knowledge that with each day that passes I am one more day closer to seeing you again. We love and miss you so much!
A child that loses a parent is an orphan.
A man who loses his wife is a widower.
A woman who loses her husband is a widow.
There is no name for a parent that loses a child,
for there is no word to describe this pain.
My Dearest Kaleb,
It's been two weeks and two days since you traded in your broken body for what I'm sure must be the most beautiful wings and with each day that passes I miss you so much more! Don't get me wrong, I am so happy that you are free of Sandhoff's Disease and when I think about you I picture you running around playing with all of your friends and loving on Grandpa, but I am still very sad, I miss you so much.
I miss holding you and kissing you. I miss brushing your soft hair and the feel of your soft cheek. I miss caring for you, the sounds of your food pump, your giant yawns and sighs. I miss your beautiful little face and the weight of our head on my shoulder. My arms feel so empty - I feel lost. You know Christopher is a "grown-up" and doesn't need his mommy, I no longer know what my purpose is. I just miss you so much!!!! Sometimes I feel your presence with me, maybe that's just me making things up but I'm okay with that. This week every evening there are two dragonflies that chase each other around the backyard and it makes me think of you playing. Yesterday at lunch, there was a cute little frog on the table display - just little things that always remind me of you and tell me you're not far.
It is my hope that now you know and understand how very much we all love you. I often wondered if you could feel our love or even if with all the damage your little brain had, were you able to understand our love. I don't know how much of that you knew when you were here, but now you can actually see how many people loved you so much. I have had people write me and tell me how your strength and courage has inspired them to make changes in their lives, people who want to continue to raise funds in your name to help cure this terrible disease. You were such an inspiration to so many people, you were brave, strong, courageous and everyone who met you knew it. The kicker is you did all of this without ever saying a word - just by being in your presence people could see and feel your strength. You were an amazing little boy.
I'm hoping that since you now have the ear of God, you could maybe talk to him for me. I'm going to do everything in my power to be sure that I see you again but maybe you could let him know that I'm sorry for blaming him and being mad at him for not listening to me.
When you were first diagnosed I talked to God more than I talked to anyone else and I begged him to heal you. People kept telling me that God heals, just pray and believe, and Becky and I talked about this... as I watched you decline I felt like I wasn't praying hard enough or asking for the right things and she said the same thing then she said it takes awhile to realize that He is listening and he does answer prayers but "sometimes the answer is no". Once I realized that your healing was not going to come while you were with me I focused all that energy on loving you and caring for you. I know that God's answer was not really no, because I know you are healed now.
It was always my goal to make sure that you were comfortable and I did the best I could to make sure that was the case - which was hard. I tried to move you often so that your arms or shoulders wouldn't hurt, but I always wondered if you were hot, cold, hungry, thirsty, did you have an itch that needed scratched, did you have one of my hairs tickling your arm. Your comfort was my job and I feel like in those final moments I let you down.
A couple days ago, I wrote of your passing and how it happened, what it looked like. The day before you left, we ordered your morphine, it was due to arrive Wednesday morning, it didn't make it in time. Doug texted me Tuesday night before he went to bed to check on you and see how you were doing, when I told him you weren't doing any better he said we can call around and find a 24 hr pharmacy and get you enough morphine for the night and I didn't do it - I will regret that for the rest of my life even though I'm not sure what one dose would have done for you. I watched you fight for that last breath and I can only hope that because of the damage to your brain that you could no longer feel pain. I'm sorry, I am so sorry!!!!!
I have so many things I want to say to you but my mind is in a jumble and I can't think straightlove you my baby boy!!!!
WARNING - This post is going to be about the days leading up to and Kaleb'slast moments. This is going to be hard for me to write but I need to get it out - and it may be even harder for you to read; especially to any of my friends who are having to watch this awful disease steal their child away....
About a week prior to his passing, I noticed Kaleb was looking a little puffier than normal and in hind sight, we probably should have decreased his feedings then but, there isn't a "how to book" for Sandhoff's Disease and we all did the best that we could. We celebrated his birthday on Saturday the 22nd and he appeared to have a good day - he was awake and seemed comfortable, his startle reflex was definitely gone so there is no way of knowing if he could even hear us at that point. It was a great party and family and friends got to see him and spend time with him, which we are all thankful for.
It wasn't until Sunday night/Monday morning that things started to get a little worse. He had developed a rash or hives, again, we aren't sure and there's no way of knowing. He wasn't going to the bathroom by himself, we were having to stimulate his bladder to get it to release and we really couldn't do that until it was full, we were having to give more laxatives and other things in order to move his bowels. He had been oxygen dependant for almost a week and we watched him struggle to keep his saturation levels up while his pulse continued to be high. I knew we were nearing the end but he kept up the fight. He barely opened his eyes in the days that followed his actual birthday on Tuesday, and the swelling seemed to be getting worse. We slowed down and even withheld his feedings until he started taking medication to help draw away some of the fluid. I talked to him a lot and through many tears I told him it was okay to let go, he was struggling too much and I couldn't stand to watch him that way. I prayed to God every night before I went to bed to keep him comfortable and to please let us be with him when the time came.
The day prior to his passing our nurse had to place a folly catheter (complete with a bag) which was going to make moving him and holding him more difficult. Within the first two hours of the placement his bladder emptied about 200cc's of urine - a good sign....or so we thought. After that initial empty, nothing more came out that evening or by the time we got up the next morning - a very ominous sign. That night, Kaleb was not tolerating being on his left side. Every time we tried to change his position his O2 stats would plummet, again not a good sign.
Usually in the mornings, Dave would go out at 6am and relieve our nurse, that gave him quality Daddy/Kaleb time, time to cuddle. Because I was so worried I came out too. We couldn't hold him so we curled up on the bed around him, Dave cuddled his waist and legs and I wrapped myself around his head and I was stroking his hair, kissing him and telling him I loved him. He gave a couple of loud and unusual sighs, the kind that make you jump up to see if he's ok. We watched as his O2 stats again took a nose dive down into the 50 range. We gently tried to move him thinking his side may be hurting but again, his stats dropped. We moved him back to where he was and I noticed his arms and hands were looking purple and for a brief moment his stats came back up to the 80's. Dave had just come back from the other room and we were both standing/kneeling by his bed - he sighed that awful sigh again, his body stiffened and he was still purple - through my stream of tears I selfishly began begging God not to take him. I wrapped myself around him as best as I could and cried and kissed him and begged him not to go....then I remember the stiffness left his body and all I could hear was Dave saying "he's gone honey, he's gone - he's not suffering anymore". The time was 7:36 am, Wednesday October 3rd.
It was true, his still, lifeless little body laid there, his chest was not moving and he still had the oxygen on. Dave turned the oxygen concentrator off, removed the canula from his nose, had me sit in the chair and he gently placed my baby in my arms - he said "just hold him honey, hold him close to you" and I did. I sat in our chair for two hours holding and rocking the still body of my beautiful boy. I was truly happy and relieved for him but so very sad for us. I cried, stroked his hair, his soft little cheeks, I kissed his head, his nose, his lips and kept whispering I love you. I could feel my heart breaking into tiny little pieces as the reality of his death began to set in.
Somewhere within the next 15-20 minutes, his sister Jessica called and my heart broke again as I heard Dave tell her he was gone. Our next call was to Doug, our Hospice nurse - who arrived at our house around 8:30. I was still holding him and he said it was ok and I could take as much time as I needed, he just needed to listen to him and of course there was nothing to hear.
Another hour passed and the funeral home was on their way, I had to put him down and get dressed before everyone started coming. I placed him on his bed and asked Dave to stay with him until I got back. Doug and I gave him a sponge bath, put a clean diaper on him and covered him up. I stayed with him until the funeral home arrived, we wrapped his little body in a sheet and Dave carried him to the gurney where we said good-bye. Doug helped wheel him to the van and stayed until the doors were closed. Then I watched the van drive away with my baby inside of it.
I know with all of my heart that he is pain free and in a much better place, but each day that passes is another day without him to hold and I miss him more everyday! I love you my little man!!!!
It's been one week since my baby flew home to Heaven and I still can't believe he's gone. I miss that sweet little face and his soft little cheeks. My arms ache to hold him and to whisper I love you's into his silky hair. My heart hurts, and I think I am grateful for the pain, it reminds me that I am still alive. For a very brief moment in the morning I wake up thinking I'm going to find him in his bed waiting for me to come kiss him. But then reality hits me like a ton of bricks, I remember he is gone and I have to say goodbye again.
Hospice came and picked up his equipment the day after he passed so I hate sitting in the house staring at the place where he used to be yet being outside, where I am reminded that life goes on, is just as hard. Every time I see a blonde headed little boy I have to choke back my tears. It's hard to keep up a brave front when all I want to do is curl up in a ball and cry.
I miss you Kaleb!!!!
Please check out the following link for funeral information. The burial service we are reserving for family only but we welcome anyone who was touched by Kaleb's life to join us for the funeral.
It's been a long time since I've posted here. I've been spending as much time as I could holding my precious boy. This past week was very tough on him and I knew we were losing him. Our beautiful boy gave up his brave fight this morning and flew home to Heaven to be with his grandpa. He was with us far longer than we thought he would be and could not be more proud, humbled and honored to have had him as part of our lives. My heart is breaking with the emptiness his passing has left me but I am comforted by knowing that his is no longer suffering and he is free of this dreadful disease.
This is a repost from his CaringBridge site that we posted earlier today:It is with much sadness that I share our precious little boy earned his Angel wings this morning. He fought a long, hard fight and is now free of this horrible disease. He was an amazing little boy and did more in his four years than most people will do in a lifetime. He touched the hearts of people around the world and we are proud to be his parents. We love you Kaleb and already miss you so much.
We ask that in lieu of flowers and cards, donations be made to Kaleb's Cure via the Orlando Federal Credit Union or on our website www.ogdenfamily.weebly.com
We welcome all to join us in saying good bye to our beautiful little boy and will post funeral information as soon as we have it.
"I'll lend you for awhile, a child of mine, He said
For you to love the while he lives and mourn for when he's dead.
It might be six, or seven years or twenty two or three
But will you, till I call him back, take care of him for me?
He'll bring is charms to gladden you, and should his stay be brief,
You'll have his lovely memories as solace for your grief."
"I cannot promise he will stay; since all from earth return,
But there are lessons taught down there I want this child to learn.
I've looked the wide world over in My search for teachers true
And from the throngs that crowd life's lanes I have chosen you.
Now will you give him all your love, not think the labor vain
Nor hate Me when I come to call to take him back again?"
"I fancied that I heard them say, "Dear Lord, Thy will be done!
For all the joy Thy child shall bring, the risk of grief we'll run.
We'll shelter him with tenderness, we'll love him while we may
And for all the happiness we've known, forever grateful stay;
But should the angels call for him much sooner than we planned,
We'll brave the bitter grief that comes and try to understand"
Rest in peace my sweet baby, until we are together again.
Pictures will be coming soon!!!!!
It's been awhile since my last post...we are about a week and a half out since our NTSAD conference, we missed last year but thankfully this year it was here in Orlando. It's very hard to put into words what it feels like to be with our "extended family". The conference this year, for me, was all about comfort and drawing strength from people who have lived and are living our life, if you will. It was very hard not to compare this one to our first one. The first one was very overwhelming, yet we were still able to find comfort with this group. This one was just as emotionally exhausting, but in a different way. There were lots of tears - the first family we ran into was the Benson family. I was so happy to see them, as a I threw my arms around Becky for that first and long overdue hug - I couldn't help but cry. The recent loss of her beautiful daughter was and still is something I think about every day.
I was remembering how Kaleb was at the first conference. He was still able to hold his head up and support his body, he was laughing and smiling - this time, all those things are gone. I remembered sitting in a room with the other "newly diagnosed families" who I have kind of attached myself to since I could relate to them a little better at that time. There were four families in that room, Dezi passed away shortly after the first conference. Her passing was particularly hard for me because she was the same age as Kaleb and also had Sandhoff's disease. Miss Elliott passed away this past February, which was a huge shock to all of us - she was an inspiration, so strong - at three and a half years old, she was still feeding on her own, AMAZING!!! Her passing reminded me that we may not know when it's going to happen, I'd always told myself, there would be signs of organ failure or he would be sick - but that's just not the case. Then there is Ali - who we lovingly refer to as Kaleb's girlfriend (see picture below), it was good to see her looking so pretty and well. At our first conference, Ali was all smiles and laughter - sadly, she has changed too.
You can't help but compare these events, as so much has changed. As a newly diagnosed family, we had read everything there was to read about Sandhoff's disease, but seeing it and hearing it was a big shock and we still had hope. I see that in the faces of the parents with newly diagnosed children and it's hard to find the proper words to give them comfort being careful not to step on their hope - we all have to deal with this on our own terms.
For those of you who have been around Kaleb you know the most noise he makes comes from coughs and raspy, wet breathing - this draws a lot of attention when we are out, especially if there is a suction machine involved. In this group, no one cares or looks at you in horror if you turn on a suction machine during dinner or while someone is talking. In this group when a food pump starts beeping, instead of hurrying to shut it off before everyone starts staring, we all look to see if it's our machine. No one stares as you "inject" medication into a G-tube. Yes, in this group, we are free to be the parents of a child with special needs, without drawing attention. I don't blame people for their reaction, if I'm being honest, those noises and machines terrified me at first too - but for different reasons. It's just nice to not have to explain what or why you are doing something.
Dave listened to the research updates and we are happy to learn that they are still planning on going to human clinical trials at the end of this year. They have decided the criteria for selection, they will begin with the kids diagnosed with the juvenile form of Tay-Sachs. Children with the juvenile form tend to get diagnosed a little later but have a life expectancy into their early teens. While we absolutely support research, do fundraisers to help fund research, we have always known that no matter how fast they work, it is too late for Kaleb - but I know that other families had the opposite hope and this decision was hard for a lot of people. When the President of NTSAD talked about this (his son had Tay-Sachs) he reminded everyone through tears that this is a win for everyone, we've all worked hard to get to this point and will be part of saving lives.
As we always say, this is not a family you WANT to be part of, but we are so thankful to have!
You may not know this, but Whinnie the Pooh is a very wise bear:
“How lucky I am to have something that makes saying goodbye so hard.”
― A.A. Milne, Winnie-the-Pooh
Ali and Kaleb (mom Abby and me)
March 23, 2010 - Two years ago today the opthalmologist saw cherry red spots in Kaleb's eyes and we learned about a horrible disease called Tay-Sach's. Today is not our "official" diagnosis day as the blood test would confirm our fears on March 19th and we would discover another scarey word, Sandhoff's. But this is the day, two years ago, that filled us with fear and we have never been the same since! Since that time, as most of you know, we discovered a wonderful organization, NTSAD, that has connected us with so (too) many families who have been or are going through the same emotions, and fears that we are. This has been invaluable to me - I don't know what I would have done without these people! During this time, we have grown close to the families and their children, and we have suffered through so many losses.
Usually when you are standing in a line you are anxious to get to the front and get - whatever it is - over so that you can move on to the next thing. We have been standing in line with these other families for the past two years and no one wants to get to the front, everytime we lose a child we are reminded that we are getting closer to the front, where no one wants to be. In this month alone we have lost two beautiful girls, one of whom was a "newly diagnosed family" that we met at the conference. I remember sitting in that room with only three other "newly diagnosed" families, 3 beautiful little girls - Ali, Elliott and Dezirae - Dezirae earned her Angel wings only a few short months after the conference, she was barely two years old, and this month Miss Elliott earned her wings at only three years old. Half of the babies who we met as "newly diagnosed" are gone - very sobbering, very freightening.
A couple months after diagnosis we traveled to Duke University hoping to get a cord blood transplant. After a day of developmental and behavioral "testing" we were told that our 19 month old son had the capacity of a one month old baby. That was the first kick in the gut we would receive during that trip! Of course after receiving the results we were then told that Kaleb was not a candidate for the transplant, they told us to take him home and love him as much as we could because we likely had a "year maybe two" - I will never forget hearing that. While we are not at two years yet from hearing that a Duke, we are at two years from learning about this horrible disease, and as I said in my last journal entry - it's only been two years, which has felt like an eternity and the blink of an eye all at the same time.
Our little warrior keeps on fighting, he is having more difficulty with controlling his body temperature, he has been getting fevers pretty frequently, but I don't think he's ready to give up!
RIP Angel's ^Elliott Bensen^ and ^Brooke Urban^ - we love you!
I have spent a better part of the last two years living under the shadow of the darkest rain cloud in the sky, just waiting for the bottom to drop out and drown me in rain. Living with a terminal diagnosis and watching this disease slowly rob your child of all of his abilities is devastating. Knowing what is going to happen but not knowing when causes me to live almost every day in fear. Oh sure, for a little while, when things are going "well" you can almost get complacent, but every time there is even the tiniest bit of a cold, terror wraps its hand around your throat, and you can't help but think, "is this the last time I'll get to hold him in my arms". That very thing just happened to another family, they lost their beautiful daughter to Tay-Sachs. As with all of us, we know our children are dying and, maybe it's just me, but I have it in my head that I'm going to know when it's time, that there will be a sign, he'll be sick, or his body will show signs of shutting down. But, that is just not the case, it doesn't always happen that way, and that is a frightening thought.
People try to understand, they try to sympathize with our struggles, but unless you've been here you simply can't imagine what it's like, nor should you. I stay behind these four walls of our home, our safe haven, germ free, not wanting to leave and people don't really understand my fear for leaving. I have not become agoraphobic, but every time I leave the house, without Kaleb, I fear he'll be gone when I get home. It was best told by another family who lost their daughter shortly before Christmas. She told about a piece from a book called Life After Death which is about a daughter dying of cancer but, "she could not die with her mother around. Her mom wanted so badly to keep her here. The daughter had visited the angels so many times already, but she just could not break her mothers heart by leaving and her mom would never leave her side. Finally when a nurse convinced her to take a break - to go home and shower or something the daughter was able to leave...". I could not have worded it better, that is why I hate leaving him. This is the same reason I have trouble getting to sleep at night, if I close my eyes, the next time I open them, he may be gone.
Twenty days until Christmas, we bought our tree, put it in the stand and wrapped it in lights - but that’s it. The Christmas spirit hasn’t found its way into my heart yet this year. These last several months have been very hard for many different reasons. With each holiday that passes I say I didn’t think we’d see another one with Kaleb, yet here we are coming up on another Christmas, and I guess the more holidays we have the more aware I am that they are drawing closer to an end and they will never be the same. I’ve been looking at the glass as ¾ of the way empty, instead of half full and it’s hard not too.
The situation we are in really causes you, on a daily basis, to take a long hard look at everything around you. Kaleb and I spend most of our days sitting here at the house together, cuddling when we can (some times it’s just to hard for him to be in any position other than laying flat on his side) and that leaves me with A LOT of time to think. I’ve been looking at my life and at how I got to where I am today and I started thinking about a jigsaw puzzle. It’s kind of like a 5000 piece puzzle you get, you open the box, pour it out on the card table and start looking for the corners. Once you get those in place you make the rest of the border and then start filling in the middle. It seems like I keep getting that part done then the mean kid down the street comes and kicks the table over sending pieces flying everywhere. I find myself having to pick up all the pieces and starting over again. Only now, several of the pieces are missing so I’ll never get it fully together, which means the puzzle no longer looks the same, there will always be holes in it.
Think about when you were growing up, maybe this applies more for girls than boys, but it seems like from the time we are teenagers we spend a large portion of our life looking for love. Some people are lucky enough to find it at a young age and others not so much. But I am here to tell you that you do not know the true meaning of love until you have your first child. You love your family, your friends, your spouse but nothing comes close to the love you feel for your children - it’s a different kind of bond, unconditional and unfaltering from day one. No matter what they do throughout their life, you will always love them as much as you did the first day you held them. You really can’t say that about anyone else you’ll have in your life. When I had Christopher, I thought my heart would burst with all the love I felt and watching him grow into a young man stepping out into the world was a real eye opener for me. I always knew he’d grow up and have a life of his own but I was not prepared for it when it started happening, when I stopped being “mommy“ and become “mom“.
When we found out we were having Kaleb, I had already experienced some of that little boy, pulling away from mommy so I thought I’d be better prepared with Kaleb for being able to let go when the time came, and maybe I would have if that time were to come 20 years from now - but that is not an option. I’m faced with losing both of my children at the same time, one to life - his own life, and one to death. My jigsaw puzzle is missing a lot of pieces, it’s no longer looks the way I thought it would and I don’t even want to continue putting it together, I think for now, I’m just going to leave it on the card table and maybe some day, I'll try to put the pieces back together. For right now, I’m just going to hold on to a couple of those pieces, as tight as I can, for as long as God will let me.