Sunday, July 11, 2010 6:01 PM, EDT
Today is such a hard emotional day for me . Tears have flowed all afternoon and I actually feel sick .Days like this are not so often but when they happen they are awful. I feel like my heart is just breaking.
I wonder what makes days like today happen. And the hardest thing is I do not see it coming . So it hits hard.
Philip just upped a second sezuire medication and added another medication.
So I layed back down and never went back to a good sleep. I woke up and made sure he was okay.
It is now 6:20 PM and he is still asleep. I look into his room and I see my son laying in a hospital bed .A hopsital bed. How did things get to this point. I have to sometimes take a double . How can that be my son...Phili
I watched him sleeping a while ago and he was smiling in his sleep. I really wondered what he was smiling about. What was making him happy as he slept...and praying I could find a way to make him smile like that.
I fight with myself. I KNOW we are so very blessed. It is a true miracle to have a child survive 19 brain operations and a stroke. Is it selfish of me to want more? Most days I wake up and am so thankful for what we have. But days like today I just hurt. My son...my baby boy is hurting. He is down. He is medicated. He has pain pumps, shunts. And yet he is here and in the next room. I feel guilty for even thinking like this..but I can not help it. I know there are so many moms out there who would do anything to have their babies in the next room. And while I am more thankful then I can even explain. My heart hurts today. Tears have fallen all day. I feel defeated. I am digging deep today for some peace.
I love you Philip. I am so very proud of you. I feel so very blessed to be your mom. If I could I would take this from you. If there is a way for us to make this better. I will. We will not stop till we KNOW we have done all we can.
10 comments:
(((HUGS))) and prayers! I just can't even begin to imagine what you're all going through so I'll just continue to send my prayers.
Amy,
I know exactly how you feel. I watch my Taylor have big seizure after big seizure, knowing in my head that we have exhausted all meds and surgeries.
I watch her lose abilities and slowly slip away from us. My heart cries out to find another doctor, try another med, even though we've tried them all.
My heart aches when she sleeps later than normal and I'm scared to open her bedroom door, fearing I'll find what the doctors have predicted...that she'll have slipped away in her sleep. I know that would be the best way for her to go, but the selfish part doesn't want her to go at all.
I know she sometimes has pain and that the seizures interfere with her life but I still want her here...with me. She's my baby. For the past 20 years, my life has revolved around Taylor. Big decisions are made with her in mind.
What am I going to do when that isn't the case anymore? I know that I've not said anything uplifting to you.
I guess I just wanted you to know you are not alone. We are on basically headed in the same direction, maybe just on different roads.
You and Philip are in my thoughts and prayers.
"He heals the broken hearted and binds up their wounds" I believe that is in Psalms 147. I am praying for God's healing and comfort for you and Philip.
Thinking about you and your beautiful family today and everyday!
Hang in there :)
I am praying for you and your family. Take heart, friend.
Take heart, my friend. Many people are praying for you and your family.
Oh Amy - my heart just bleeds for you! I know exactly what you are going through. I'm crying as I read your blog and as I'm typing my response. The memories just keep flooding back to me.
Hopefully tomorrow YOU will have something to smile about.
Love and many prayers - Cheryl
This tugs at my heart too. What a blessing it is to be able to be Philip's mom. God knew what he was doing when he picked You.
You write that when you saw Philip smiling in his sleep you wish you could find a way to make him smile like that... well I think you already have. He could have been dreaming about his wonderful mom or how you and Jimmy will go to the ends of the Earth to do all that you can for him. Yes... that is what brings a smile to your young man's face. I believe it with a 100% heart.
Tears are falling down my face after reading your post! NO, it is not selfish to want MORE!
You are doing amazingly well....you are amazing! I am so sorry to hear you are going through a rough, rough time.
There is such an element of having to turn your mind off in these situations, I'm sure you are a master at that....but I realize there are many times when I just can't do it. I see her laying there and my heart shatters into a bizillion pieces.
It's so hard! And you are light years ahead of me!
Today, I will pray for peace for you and your family!
Love you,
Jen
Praying. Lots of love.
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