Night comes to a close and the tension is palpable. Not between me and nancy or Allie or God but with yourself. How do you go to sleep when all you want to do is continue going in her room to check on her but you can not do that. This is just another path on the road to Full recovery and as she heals, so do we. I don;t know the lessons here and may never but right now I don;t like them - don;t have to I know as I have said many times - I will never leave you and I know that to be true but dang will the day ever come when we don;t worry about this little girl - we know it will but there are times you wonder.
Tomorrow is a great day for a breakthrough.
Allie's Dad
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7 comments:
I am only a Mommy to one - and only for 7 years, but I don't think there will ever be a day that you don't want to peek in and make sure all is okay after a traumatic brain injury or even a severe asthma attack or (currently in remission and has been for 4 years) seizure disorder. I STILL (on the rare occassions that I actually GET to wake up before my early-riser! :o) have nightmares rushing through my head as I debate with myself: Is he okay? Should I peek? Stop being stupid/overprotective/ridiculous - you can fill in your blank - he is fine. But he is usually awake by now...and on and on and on. I only know from MY situation, but I doubt you will never feel like you don't need to peek in. I don't think I ever will. I just try to fight the urge as much as I can because I don't want him to know I am so paranoid - he doesn't even remember either situation, he was too young. But every day, God grants us another day with our little boy - some are pleasant and calm and others are frustrating and discouraging - and I want to enjoy each one of those days while I have them because they DO GROW UP SO FAST! So when you have to peek in on your little angel and you can't talk yourself out of it - peek in and remember to say a little prayer...and know that there is another parent out there doing the same thing! :o)
Cagen's, I was working on a blog when for some reason the screen went blank, so if you get some incomplete pages that is why. I will wait until tomorrow before I re-enter the info. Mary
Hi Steve,
Loved your comment about will the time ever come when we don't worry about our children. For me the answer will ever be NO. However, I learned when pregnant that the child is no more mine than the air I breathe. Children are a gift from God and thus I continually release my child into His care...For if He cares for the lilies of the field how much more He cares for us. I cannot possibly be everywhere at once which even one child, let alone more than one! I often wonder about how God cares for us as His children. Does He have ANY hair left? Are His nails bit down to the quick? How many worrylines does He have anyway?????
Seriously, we just have to accept the number of days they have been gifted to us and make the most of every single one...because we never know...things happen every day...whether our children be newborns, toddlers, teenagers, newlyweds, young parents, or grandparents in their own right.
In those wee morning hours when your not sure if that baby in the next room is breathing or not, or whether that precious child laying in the hospital bed next to you is slipping away, all we have is God to breath a prayer to. A prayer of thanks for the time we have had, of the lessons yet to be learned, of the hope that we need for tomorrow.
Our children are a gift from God to be thankful for each moment and to release back into His precious hand and praise Him for the time we have had, and are praying to have more of with them.
Hang in there Steve. Give Nancy, Matt, and Allie our love. We sure do care about you all and want you to be assured that the prayers are simply here, without you needing to ask. And remember, in the evenings, when we are the most exhausted, we see things for their worst. Be sure to get as much rest as you can, it really does help.
Love, Marla & Fam
The prayer chain continues, Steve, you are on the right path. This girl is not used to medication, remember that. The meds have to work their way out of her system one way or another. Continue what you have believed in for all these decades, believe in what you have studied and know about the body. Believe in yourselves, you and Nancy and continue to pray, we will all pray with you.
Dear Cagan's,
You, indeed, are ever in our prayers.
Peace,
Christina
I have been reading your blog for a while and have wanted to comment on so many things. First, I live in Brevard and have a seven year old son who has a history of encephalitis, brain stem stroke, and epilepsy. At the moment he is in his bedroom with his two best friends getting ready to go on a long hike and out for a day of swimming in the lake. Full Recovery- Never Doubt! Have we reached there yet? NO!, but the process is the product in the making.
When my son was having his stroke, I happened to be in Greenville and took him to GMH--big mistake. They treated us poorly, took bad cat scan pictures, handled my poor son roughly, and misdiagnosed him. After being released with the assurance that I was an overanxious parent, my son went into status epilepticus and the good team of doctors and nurses at Transylvania Hospital saved his life. He was airlifted to Mission, remained in a coma on life support, and diagnosed with a major brain stem stroke. It has been five years. He has been off seizure medication and seizure free for two years. Is he the same child? Yes/No. Am I the same parent? Yes/No. We change everyday. There will come a time when you don't relive the horrors every hour/every day. There will come a time when the pictures of "before" do not cause gut wrenching stabs of pain. There will come a time when you think, "I should check on her. Nah, she's fine." (Then you'll check on her, not because you are afraid something is wrong, but because you are her loving father.) Good health and healing to you and your loved ones. Shana Cloer
Happy Labor Day! I was correct in thinking that my blog got lost when the screen went blank. I wanted to assure you that the reaction is exactly what my grandson and brother had from Dilantin. They were both switched to Tegretal. Be cautious with Benadryl after the rash has gone away because it caused my grandson to have seizures. The doctor told us that many years ago they used Benadryl to envoke seizures for EEG's.
I'm sorry that you had to deal with a physician who has no self confidence or empathy for his patients family when it comes to treatments. I have a chronic illness and have been to many physicians and have experienced one physician that acted like that, so I never returned. Most doc's fully understand your concerns and let's be honest here, medicine is not an exact science. I have been blessed that in my dealings with physicians, both personal and professional, that the majority of them don't act like that.
I wanted to mention something to you about insurance and guardianship. In Texas, when a child turns 18 they are no longer covered on their parents insurance unless they are still in school. Also, the parents need guardianship papers to make medical decisiions for them. Although this will be short term, Full Recovery-No Doubt, you might want to check into this, as it can be a mess to get straightened out. Also you can apply for disability for Allie in the short term. I don't want you to get caught short along with all of the other headaches you have to encounter daily. As you know goverment stuff is always an ordeal. You might want to check with your social worker. Please know that the entire family is in my prayers daily and I just lift you up for peace each day. As parents we will always be a little overprotective, so don't ever feel that you don't have that right. Take care my friends and have a restful night....Mary
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