Caroline continues to do well with her daily tasks. She is always happy and does not have all the burdens that I carry. She is here to teach me to be selfless and learn the true meaning of unconditioinal love. I am at another loss. When I start worrying and focusing too far ahead it can get scary and lonely for us. Caroline is eating baby food and cereal and seems to be handeling all veggies so far. We have had green beans, carrotts, sweet potates, and squash. I think it must be funny to not know what you are goingu to eat that day until it is in your mouth. No wonder she makes funny faces.
I have been fortunate to be in touch with another family who has a 24 year old son with Diploid Triploid Syndrome. She is a great mom and is full of wisdom and encouragement. Although it is hard to see what things Caroline and I may go through in the years that lie ahead, it is nice to have advice. The best thing is to have another human soul know my thoughts and feelings even though she has never met me.
You can read about David on a new site that his mom Julie created for Diploid Triploid families.
Here is the new site for all of us who hope to meet one day.
www.Xanga.com/diploidtriploidsyndrome
3 comments:
Hi, Sweetie!
And, thank you so much for your very sweet words! Kimberly Sweetie, you are doing just fine, Hon...JUST FINE!
Just remember, today is all you need to live at one time. Don't try to live all your tomorrows today, and don't try to live all your yesterdays today. Just today, one day at a time. And if that's too much, an hour at a time, or a minute at a time...each breath as it come. You can handle this breath. You can handle walking across the room and getting a glass of water.
Some days, that's all I can focus on...just the next step, then the next, then the next. Some days, that’s just the way it is…yanno? You have to remember that God is carrying you on those days. And interestingly enough, those days are the days that HE shines through the most! When we are weak, HE is strong, and all of heaven is rejoicing that we are walking in HIS strength, not our own! We glorify the Father in our dependence upon Him, and that makes Him happy! Wow, huh!?
He says, “Blessed are the poor in spirit, for theirs is the Kingdom of Heaven.” When we are poor in spirit, nothing of ourselves, and everything of Him (His strengh because we're too weak; His compassion because we're too tired) then the Kingdom of Heaven rejoices because God has just shined through!
Being at a loss is good, because it is then that the Kingdom of Heaven is yours. Walk across the room, get a drink of water, and know you are carried, Sweetheart.
Hey! Thank you for listing our website!! That is so great of you to do that! I noticed that the website you gave contains the word 'syndrome' instead of 'mosaic'. The correct site name is http://www.xanga.com/DiploidTriploidMosaic.
In closing, just remember headlights. You can’t make a turn before you get to an intersection, and if you’re in the dark, by the time you get there, you’ll have the light you need from your headlights. No matter how fast you go, you cannot make the headlights shine a mile down the road so that you can see your turn from a mile back…okay, unless you’re in Texas, and it’s so flat you can see a tumbleweed from 60 miles away. But, in most cases, you can’t see the turn, til you get there, and when you do, you’ll make it just fine, because you were adequately trained to slow down before turns, etc, and you’re headlights will light the way for you do make the turn safely.
Kimberly, I can tell you’ve been well trained. You’ll have everything you need to do the things you need to do, once you get to tomorrow’s turns.
Hey, btw, I LOVE that point you made about babies not knowing what they're going to eat until it's in their mouths! Yanno, I think I'd make funny faces too! haha!
Hugs, from across the miles, Kim. Trust your instincts, and keep the faith! Your new sister and friend, Julie
Julie,
I'm Kimberly's Mom.. Terri. I can't tell you how much you've encouraged Kimberly and a lot of us FOR HER. I'm her Mother in many respects but now she has another Mother to guide her through this new blessing she has to cope with everyday!! Thank you sooo much. I'm so happy you two found each other. I have 2 grown daughters( Kimberly of course being one ) and I have no experience with some of Caro line's issues. Yet I still have things to tell her that do relate!!! Caroline is such a HAPPY HAPPY sweet child I have never been around a baby that is so easy and compliant and seems to have such a content and sweet spirit!!! I just want to squeeze her little cheeks and eat her up and bring her home with me and love on her all day long. Anyway.....I really just wanted to thank you and tell you as Kimberly's mother how happy you've made her feel these past few days and that YOU are an answer to prayer. Thannks again Terri
Terri,
Thank you soooo much for your message! There is so much for us moms of these kids to remember, I'm concerned about passing along too much too quickly, and overwhelming a precious soul.
These babies ARE soooo precious!
I will tell you, Terri, that I would not have made it without my mom. She came to live with me for months after David was born. It took both of us to keep things going. There were some weeks that she went back home, and I had a collaboration of the Health Department, and ladies from 3 different churches, all that came in to help. David took SO MUCH TIME, that Mom and I both were totally focused on him. The ladies cleaned my house, watched my other children, brought in meals...it TRULY took a village! Literally DOZENS of ladies came in and helped keep us both going!
Times when I get discouraged, my mom tells me things like, "Julie, David didn't come with a manual. NOONE knows how to deal with him. You can't know EVERYTHING...give yourself a break, Honey..." ..and I would break down and cry, and she would hold me, either in person or over the phone. She has always been GREAT encouragement and support, and the first person I would call when something happened with David, good or bad.
If you are close by to Kimberly, that is EVERYTHING. My mom was 1500 miles away, and would come out to help as she could. Now she's 75, and not able to help out physically so much, but she's here in spirit, and always my cheerleader.
Terri, I read your last post to Kimberly, and it made me cry. You're doing a GREAT job being a supportive mother and grandmother! Know that.
Thank you again for your wonderful supportive message! I look forward to becoming better acquainted with you and your family!
Hugs, Julie :) xox
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