Friday, April 9, 2010
Too many children named Luke
Okay so I know I promised to write every night but the last 2 days have been depressing and I feared the blog would take a serious turn and scare all my followers away. But I guess I started it as an opportunity for me to vent to only the folks who cared to read me, since some people don't like hearing Luke's problems all the time on facebook. Many of you know that Luke was born 3 years ago, some days it feels like longer than that! Anyways I could go on to tell you all about his journey over the last 3 years but I know many of you probably know it. If not you can go to www.pawsforlukescause.com and click all about Luke to get the whole story. His biggest issue is seizures, and I guess sleep. His seizures haven't been too well controlled although in the last weeks he has been doing pretty well. In the past few years some have lasted only a few seconds to nearly 40 minutes. To say that my life as a special education teacher has prepared me for him is far from the truth. Yes it has helped me realized what he needs with his therapies (right now 14 times a month) or his special equipment. But my degree could have never prepared me for watching him go through so much in the last 3 years, no degree could. He is truly an amazing little boy who rarely loses his smile in his fight against what we have come to call the "seizure monster." I have become someone I always knew I could be but had hoped I wouldn't have to for every ones sake. I am sure most of my doctors and therapists all want me to go away and stop calling them by now. He has over 15 diagnosis's right now and about 12 regular doctors. All I want everyday is for him to be healthy and happy. My sadness comes probably out of selfishness but it affects me everyday and although he is 3 I wonder when these feelings will go away. When the weather is nice it gets worse because we visit more playgrounds and public places where I see very healthy, whole 3 year old many little boys with his same name. As I hear there moms yell "Luke" or ask them how old there precious boys are it literally breaks my heart that he struggles to climb up the playground, or trips and falls, and can't run as fast as all of his peers. It is horrible for me to compare him but it is almost like I feel a loss. Nothing compared to friends of mine who have lost their beloved children I am sure but I just wish the day would come where we could go to the playground and my mind would not wonder off thinking about what life would be like if he were like their "Luke." Another part of me realizes how special he is none of those "Luke's" could possibly be as "Strong" as he is. And I bet none of them could make everyone smile and light up like they do when they see my "Luke." Whenever I share my feelings about my gloomy days I know people think I am so negative however, the emotions that I feel are real. I guess I hope to some degree others who have been in my place feel the same way so I know I am not alone.
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Jackie, I do NOT think you are being negative AT ALL when you talk about Luke. You are being honest and truthful and I think it is wonderful that you feel ok to vent to people. Like you said, if people don't want to read it, then they don't have to. Just keep doing what helps you, and if it helps to write out your feelings, then by all means, PLEASE do so! I love reading what you write. Yes, it does make me cry sometimes but it also makes me realize what is truely important. Sometimes I FREAK out when Branden has a little cold or a stomach bug or I get angry if he is bothering me. Then I read what you write and I have to tell myself that the time I get to spend with Branden (whether he is being a pain or not) is priceless. They will never be this age again and if he wants to cuddle with me for 5 minutes, well, then, everything else will have to wait 5 minutes. I think you are very inspirational and very strong...which I know you have heard a million times, but it is true. I just wanted to let you know all of this. Keep on writing, blogging, etc. I love hearing about your precious little boy. I just can't wait to meet him :(
ReplyDeleteoops, that was supposed to be a smiley face :) at the end...NOT a sad face!! LOL
ReplyDeleteHey Jackie what you are experiencing is totally normal and is part of the "grieving process" all parents of children who have any kind of special needs or issues go through. It is this process that leads us to the acceptance of who they are and truly takes time to come to grips with. Honestly this is an up and down thing and we grieve on and off throughout their lives, what we had dreamed of for them, what we had hoped could have been their life. We go back and forth between total acceptance and struggling because we wish better for them. It's times on the playground, birthdays where we are buying toys we bought last year, and other holidays and events that bring us back to those grieving moments. Know this is normal, that you are not alone. What I found was extremely helpful was always perspective. I could always see other children who struggled more than Connor and that helped me be thankful he had what he had! I could then just focus on who he was and be grateful. This helped, but of course I had my times of grieving and still do! Hang in there and allow yourself to grieve when you need to. Then go on and embrace those moments with him! Keep on sharing! It is so therapeutic isn't it? Much love
ReplyDeleteDeb
Jackie, I think that people would wonder what was wrong with you or at least think you were out of touch with reality if you were constantly positive about Luke's situation. Everyone loves Luke and the poor baby doesn't know any different so he is happy. Its okay for your feelings to be about you.
ReplyDeleteThanks for making me cry Jackie but I agree with the ladies! That is EXACTLY what you should be using this blog for....to vent and get your true feelings out because you're right...they don't have to come here and read it if they don't want to but the people who truly care WILL come here to read it and they'll want to know exactly what's on your mind and how they can help. That said, I cried because I do tend to compare Luke and Brayden since they're only 6 weeks apart and I'm sad for you and for Luke that he can't run and play like Brayden and Alex do. But...I also see the same very strong, HAPPY little boy that we know Luke is and I remind myself that he will likely never worry about the stupid trivial things and cry and carry on like Brayden over a bit lip because he's already been through so much more and he's stronger than a typical 3 year old. I also remind myself that everything could always be a lot worse than it is (for all of us) and we're all blessed to have the healthy children we do have and to be here to watch them grow up and change in their own individual ways. There's always a bright side and by blogging about the "dark" sides, people will remind you of that when you aren't necessarily able to see it yourself! Keep blogging sis
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