Samantha's seizures have gotten worse again lately. We have to drive six hours to see her specialist at the end of February to see if there is anything else we can do to help control them. I'm not sure there is anything else we can do. She has an implanted device called a Vegal Nerve Stimulator, that is like a pacemaker for seizures, and she has already been on almost every anticonvulsant available in the United States. We had fifth Sunday singing at church tonight, and we thought she had fallen asleep during the service. That is until I tried to wake her up. She was having seizures and we had to rush her home to give her emergency medication. She is fine now, but I feel so helpless.
I hate to see her like this.
One of the ladies that goes to church with us kept telling me how scared she was, and how she didn't think she could handle it to see one of her kids go through the things Sam has. No one ever thinks they could handle it. I certainly didn't. Not until it WAS my child. I never thought I was a strong enough person to do CPR on both my kids... But I have. I never thought I could handle watching my daughter go through more operations and tests before her sixth birthday than most people experience their entire lives. I never thought I could handle watching my son stop breathing time after time, and have a kidney removed at three weeks old.
Its amazing what you can handle when it is your child.
I never knew, before my kids were born, how absolutely in love with someone I could be. When it comes right down to it, the reality is, unconditional love is such a very rare thing. I am a very lucky woman, because I know that kind of love, here and now. My children, even with all their problems, are the center of my universe. Its hard to describe to someone who doesn't have children, the emotions that well up inside you when your kids are sick.
I wish that Samantha's seizures could be brought out and turned into a physical form, that I could beat the crap out of. I wish I could stop them, and regrow the mylan around her brain and nerves with the sheer force of my love for her. I wish I could wrap my soul around that missing chunk of her fifteenth chromosome, and magically remove Angelman Syndrome from our lives.
But I cant. I am helpless against this enemy that threatens to kill my little girl every hour of every day. All I can do is sit here and cry, and pray that I don't loose her. I never cry where she can see me. I don't want her to know how scared I am every day for her. I don't want her to know that I am so much weaker than I let on. I am so tired of having to fight so hard just to keep her healthy. But I will keep fighting for her, because she cant fight for herself, and because I will never loose hope that maybe...
just maybe...
my love for her will make a difference one day.
Sunday, January 29, 2006
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5 comments:
Melissa,
It is BECAUSE of your love for Samantha and your awareness of all her physical and medical needs that she is alive today! According to several Drs., she should have been dead 3 yrs. ago. But, they do not live with the gift of this precious child, and mostly just take stabs in the dark to try to treat her rare condition because there is still so much they do not know about Angelman Syndrome. NO ONE can know enough about these wonderful individuals and thier individual needs until they have walked in the shoes of the parents who have to go through what they do in the care of a special needs child 24 hrs. a day, 7 days a week. The Drs. have the luxury of being able to know they have done what they can to treat them, then they can send them home and forget about them, because they are not involved emotionally...if the child lives or dies...well, they did what they could. Thier job is over. You, on the other hand, have no such luxury, because she is so much a part of you and who you are. You spend all of your time and energies making sure she is comfortable, and healthy. You spend hours doing research to see if there is any other drug or treatment that can ensure her a better quality of life. You fight with Drs. and agencies who have her pigeon-holed and catagorized while they know nothing of the specifics of who she is or her individual needs. You have spent countless nights worrying and weeping when she has a bad spell of increased seizure activity, and you beat yourself up because you forgot something, or didn't see something you feel you should have.
You are only human..SUPERHUMAN to some. You are Samantha's strongest ally and advocate. She loves you as unconditionally as you love her.
Your love for her DOES make a difference....EVERY DAY!
Anonymous - thank you.
Charity - Thank you.
Sol - Thank you. If I have the time to get my head on straight again and let my butt catch up with me... I will email you. I am interested in your ideas for seizure controll and pain management.
melissa, my heart broke reading that entry. You're a good Mum. You children are lucky to have you.
Love does empower us beyond what we might think we are capable. I have to say that love for my wife and children has been the greatest motivating force in my life to make changes in how I function. I would have given in to the depression 14 years ago if my wonderful daughter hadn't entered my life. She changed how I looked at myself and now I'm better for it.
So kudos to you for your efforts. My brother has epilepsy and it was touch and go for many, many years. My mother was stressed and worried and fearful but hopeful. Seek out the best neurologists in your state. Keep that girl under observation as you have been doing. My brother has grown into a man and is now on his way to being a university professor with two children of his own. Hang in there, and thanks for all your comments on my site.
Love,
Douglas
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The Splintered Mind - Overcoming Neurological Disabilities With Lots Of Humor And Attitude
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