I am so tired. I keep asking myself how much more I have left in me. Four hours of sleep a night isn't enough for me to function on. I walk around crying all the time. "Normal" parents do not get it. One friend says, let the house cleaning go. Can't do that or the three year old would have gosh knows what in her mouth. Same person, get "P" a personal aide. What the heck have I been fights the Children with Special Needs people for?
And I have to admit I am more emotional tired than phyiscally. Yesterday "P"s neuro finally called back. Seems after his 48 hour EEG/EKG with video monitoring we have more answers. My husband and myself really thought we were dealing with seizures. No they couldn't monitor them but if they are temporal lobe seizures they can be very hard to detect. We had braced ourselves to handle that. It seems we must have looked like the scene in Forrest Gump where he runs and his braces come flying off. No amount of bracing could have prepared us.
Before I say what the doctor said let me preface by saying I have always told the doctors not to beat around the bush. Tell me straight out what is wrong that way I know exactly what I have to deal with. That being said...direct quote " P's brain is slowly killing him." I am not sure I have exhaled yet. It seems there is more damage to his brain stem. Neuro explained it as P's brainstem is telling his little body, okay we don't need anymore oxygen. So breathing stops for at the most 30 to 60 seconds. This is why he starts shaking and his hands, feet, legs turn purple. All the oxygen goes to the heart. Also this is why he has started choking on everything. His brainstem says, enough and the body listens. Through my tears I asked the doctor, what do we do now? He says..we do nothing. That is the hardest part for me. I am the one with him 24/7 and now I get to watch him die? And not know when? Oh and meanwhile..still take care of his little sister, my two daughter, my husband, keep the house up and going, meals...Can I do this? I know I have too but it doesn't make the doubt go away. Nor the resentment. Not at my son but at his bio parents that are still out there using the same drug that caused all this for him.
Sigh....
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9 comments:
My heart is aching for you and your family. I don't know what to say to make you feel better. I know only from expierience of almost loosing my son, that you can only take the day minute by minute. It's to hard to look into the future even to let your brain wonder. Stay focused on the minute. Do the best you can in the miute. and you will be strong for your child. At this time in my life I am still living this way for fear that something still could go wrong. I have built unhealthy walls to keep people out and I am now trying to break them down. But I know how hard it is to always have to be the strong one. The one to keep a smile on your face for the rest of the family. No it's not fair, but If you remember you do have a Heavenly Father who loves you and is carring you through these hard times you will make it through. I'm not sure where you live but if you need help with dinner or need to talk give me a call and I would love to be there for you.
Let Peace be with you today.
Jessica 638-1897
I'm so sorry for this. There are times when things seem almost too much to bear. I hope and pray for you to have the things that you need most now.
I am so sorry! I know that saying that can't possibly begin to truly help you, but I do hope you know we are all thinking and praying for you. I don't really know what to say that can even help, other than to try to stay in the minute and try to not worry so much about the things we can't control. I wish there was something I could say or do to help you. If you need anything, you can always vent on here, you can even e-mail me. I know that heavenly father does help us through this and that is hopefully enough to make it through the day. Please feel free to let us listen and help you in whatever way we can. My thoughts and prayers are with your whole family at this time.
Thank you all for your care and kind words. They mean more to me than I can say.
Like everyone else, I wish I had more power to soothe your pain and calm your soul. I'm so sorry. So, so sorry. I will keep you in my prayers. God bless you.
Ditto to all of the above comments. My thoughts and prayers are with you...
Oh, I am so sorry. I don't think I would be able to handle hearing that one. I will keep you in my prayers.
I know the frustration of parents who use drugs. My sister has adopted one boy who was born addicted and foster parented another. Both were preemies. The Mom of both never cleaned up her act. Too bad we can't sterilize them. It's times like this that you wonder if everyone really has to have their free agency. I know we all do and I know it's the plan. It's just not fair to the babies but the Mom will get her "reward" later.
What a horribly sad thing to go through. I don't know why all the burden has to fall on the mothers but it sure seems to. I don't have much to offer except a shoulder. E-mail me if you would like some help with the housework or meals or anything else you can think of in this difficult time.
i agree with everyone else: not quite sure what to say. we'll be thinking of you and praying our guts out for you.
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