Well, even though I tried not too, I got my hopes up about Peru and shouldn't have. If it were that easy, Sandhoff's Disease and all the others would be gone - but they aren't, they are still very much here. We finally got a hold of one of the doctors who is working with the NTSAD and finding a cure and he told us what we truly already knew, it's not going to work and even though it shouldn't hurt him to try it - there is the possibility that it could. So, once again, we are back to having no hope. Having the rug pulled out from us for a third time this year is really difficult. I find too, that in a "normal" life, we assume too much and take things for granted too often. Well meaning friends say things that are sometimes insulting and innocent strangers have no idea that what they say to you can sometimes dig a little deeper into that open wound. Recently there was an art festival in our little town and businesses have booths set up, as we were headed back to our car a woman from a private school approached us, flier in hand, and said take one of these you'll be needing this someday and as she walked away I looked at my husband and said, I wonder what she would have done if I had handed it back and said, no unfortunately, we will never be needing that. Maybe I'm just too sensitive, but these are the things that make me want to stay inside and never go out.
Thanksgiving has passed and Christmas is coming, these should be our happiest of times, but they aren't. I'm doing the best that I can to make these two holidays the most special ones we have ever had in case they are our last with Kaleb. Christmas lost most of it's wonder for me when I found out that Santa wasn't real, but when Christopher was born it became magical again through the innocence and wonder in that little boys eyes - but it would end for him earlier than it did for me - kids are wise beyond their years these days. Then Kaleb came along and the magic was back, but this time it's being taken away from us in a completely different way. No matter what happens, Christmas will never be the same. Don't get me wrong, I am so thankful that he is still here with us, too many families have lost their babies this year and will have to go through the holidays feeling their loss. But it is all so sad.
I keep thinking some day, this will get easier, but it's been almost nine months since our diagnosis and the tears still come every day, every night - you'd figure by now they'd dry up, but they don't and the ache that I feel in my heart hurts just as bad today as it did nine months ago; actually that may not be true, I think that has gotten worse. It's a pain I can't describe, even if I wanted too.
My shoes - unknown
I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them. I get funny looks wearing these shoes. They are looks of sympathy. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off. I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some woman are like me and ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I will forever walk in the shoes of a woman who is losing a child or one who has lost a child.
The weather has been so nice here lately and between nurses visits and therapy, we went for a bike ride. We were able to rig his bike stroller up so that his tumble form chair fits in it so we can get out of the house. We rode down to the park a couple of days ago, which thankfully was empty and I sat in a swing with him. My limp little baby curled over my shoulder breathing on neck - I'll never forget it.
Since it was so nice out again today we went out on the back patio to enjoy the sun and the cool breeze. He snuggled up and fell asleep and I just watched him for about thirty minutes peacefully sleeping, it was like my own piece of Heaven. I was thinking about when Christopher was born some fifteen and a half years ago, all I wanted to do was be a stay at home so that I could take care of him. That wasn't in the cards back then. After Kaleb was born I went back to work for about a year until I was able to quit my job so that I could fill that position of stay at home mom and I love it. But, today I had time to think about what I had pictured and what it really is. As we sat there, I couldn't help but think about the way things are supposed to be and how unfair it is that instead of running me ragged and talking my head off, my baby is a prisoner in his own body. I just don't understand why these beautiful, innocent children have to suffer this way. He's not in pain but I can't help but wonder what he's thinking, is he wondering why he used to be able to play and now he can't even turn his head? Sometimes I feel like he looks at me like "is this really it". But lately he's been giving us lots of smiles and making cooing noises, it is so wonderful, it's his way of saying "I love you" and it fills my heart!
I thought I'd have more time for this but making time seems to be difficult, I want to spend any free time with Kaleb - but he's getting lovin from daddy right now so I figured this would be a good time.
The more time that passes since speaking with the doctor about the stem cell therapy the more scared I become. There are so many unknown variables, many things that could go wrong. I've solicited as many doctor's as I can in regard to this and they pretty much say the same thing, they can't really endorse it because they just don't know what it will do but I don't think any of them blame us for considering it. The ARNP that we deal with on a regular basis from our neurologist office said she has a son and if she were in our position she'd be thinking the same thing we are but she also told me about a seizure patient who traveled to Mexico for a similiar type procedure and it did nothing for him. But we still keep coming back to, we really have nothing to lose. I scares me to hope and it scares me to think about not doing it - nothing can be easy!!!!
On the up side, we went to see Stephanie at Angels Touch Photography on Sunday and she took some amazing photographs of all of us and I can't wait to share them with everyone!
Saturday I got to talk with Aspen's parents, Brandy and Keith, and they are cautiously optimistic about their daugther. She continues to be able to hold her head up which she wasn't able to do before, she's laughing and her eyes are tracking more smoothly now - all good things. I am still very much afraid to get my hopes up, so all I'm allowing myself to think about is that this procedure MAY give him a better quality of life - but the little voice in the back of my head keeps whispering, maybe this is the answer to our prayers!
Sunday we traveled to New Port Richey to have some photo's taken by Stephanie at Angel's Touch Photography. She took some great pictures of Kaleb at the conference so we are excited to see how these come out. She's posted three already on Facebook - a little teaser for us! It was nice to hear her say that Kaleb still looks really good, not like I'd expect her to say that he looks terrible, but it's somewhat reassuring to hear it from someone who doesn't see him often!
These past couple days have been crazy. We were following Aspen Brown's story, a girl with Tay-Sachs disease, who recently took a trip to Peru where she received stem cell therapy. There were numerous articles done afterward and everything seems very positive. Aspen's dad writes on their website that she is already doing things that she hadn't done for months like hold her head up, sit up, track with her eyes and laugh. We were so encouraged by all of this we called the doctor and if we can put the funds and passports together we will give it a shot on 12/6 - what a Christmas present that would be! We are encouraged enough to say we have to try this and for me, I couldn't spend the rest of my life wondering "what if", the bottom line is, we know what's going to happen without any kind of intervention and this won't hurt him so we have to do it! It's a lot of money, but it's only money, we only have one Kaleb and there's no amount of money that would be too much if it would give us more time with him and give him a better quality of life!
I have said before, I have been finding it hard to not be mad at God these days, but I keep praying anyway, I guess He has been listening to me. I'm scared to hope, I'm afraid that if I hope, something will happen. I live my life in constant fear, knowing that he's going to get worse but not knowing when - I stress over the littlest things with him so fearful that nothing, like a sneeze, means something. I continue to pray that this is what I hope that it can be.
Please remember my disclaimer when you read these entries - this may sound like rambeling to you, but it means something to me. Thank you for reading, and thank you for supporting us!
Sunday I had a revelation, which is kinda why I wanted to start doing this - just to get it out. I went to a fun get together that was just a girl thing. I put on my smile, I sat and listened to the other girls swap stories unable to contribute to the conversations. On my way home, I cried, and I started thinking back a couple of months.
In September my best friend got tickets to see Wanda Sykes and she is so funny! I can't tell you the last time I laughed like that, I mean I laughed so hard my checks hurt, my stomache was aching and my eyes filled with tears (the good kind), but in the back of my mind I kept saying hurry up, I need to be home.
Then in October my husband got an invite to a dinner party with an old friend of his, whom I had never met. I put my best foot forward as we walked into this house full of strangers, and for those of you who know me - I am very quiet and shy. I sat at the table with everyone and smiled, and listened and checking my watch again just wanting to go home and be with Kaleb.
As I pondered through all of this I realized that in the eight months following Kaleb's diagnosis I have become so consumed with fear and sorrow - that I have already forgotten how to live. I am lost. When people come to the house I smile and look like I've got it all together but when I'm alone, I'm broken, I feel lost. I never dreamed, first of all that I would even have Kaleb some thirteen, almost fourteen years after Christopher - but I never imagined that God would grant me another beautiful child and then have me watch him slowly, but too quickly, slip away.
I "borrowed" this quote from another parents website who is going through this same situation:
I'll lend you, for a little while, a child of mine," He said,
For you to love while he lives, and mourn when he is dead.
It may be six or seven years, or twenty-two, or three,
But will you, until I call him back, take care of him for me?
He'll bring his charms to gladden you, and shall his stay be brief,
You'll have his lovely memories as solace for your grief.
I cannot promise he will stay, as all from Earth return,
But there are lessons taught down there I want this child to learn.
I've looked the wide world wide over in my search for teachers true,
And for the throngs that crowd life's lanes, I have selected you.
Now will you give him all your love and 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 this child shall bring, the risk of grief we'll run.
We'll shower him with tenderness and love him while we may,
And for the happiness we've known, forever grateful stay.
And should the angels call for him much sooner than we planned,
We'll brave the bitter grief that comes, and try to understand.