Posted by: Nancy Brown | January 25, 2007

Some things that I just have to say…

Usually when this type of post gets started I give a disclaimer. Not this time. Things I need to get out wether or not you are offended… well I don’t care. They are my thoughts and my feelings. That is what this was made for. Maybe, if you are reading them, you want to know about me. So there is no disclaimer. This is what I need to say.

Its 1:30 am. I should be sleeping. There are to many thoughts in my head to do that. So I am getting them out. I am sure that feelings will be hurt and frankly I do not care at this point.  So here they go.. in no random order….

I know that we have be incredibly blessed with the outcome of our son. We are not the baby that is written down on any paper. We are not the baby that we should be. What I mean is this. We have a grade three and four brain bleed. We have brain damage. Where you all ask.. Good quesiton. His scans are looking better and better. He has no damage done to his ventricles which comes as a surprise to EVERYONE including our esteemed neurosurgeon. I understand that we have been blessed. Everyday I feel blessed when Tyler crawls to find me. I love it. I don’t mind that he gets into stuff. I like it. When we brought him home from the NICU they told me he wouldn’t do those things. In October they told me he wouldn’t do those things. They told me he would probably need a walker to walk. That he wouldn’t crawl *normal*. He did.. I am happy and overjoyed. I feel blessed.

I know our outcome was not like SO many others. We are the minority, yet we are the stories you hear about when people talk about preemies. Its not the majority.  Having a perfectly healthy baby I think is the miracle.  Although we are that minority, that surprise baby that does exceptionally well despite the issues I haven’t forgotten what it feels like to be disappointed, frustrated, discouraged and down right pissed off when disappointment comes again. I see others go through things and they get angry cuase they don’t think I will understand. I do. My understanding is not exactly the same but don’t think I don’t cry for you or think of you or even think what if that was my child. Then I remember to thank my Heavenly Father for allowing me my trials.  But when my trials come up. That is when I wish my friends would remember that I cried for and with them and to show compassion and cry with me and thank Heavenly Father for theirs.

The past few months I have tried to go back in time. Not in a real sense of the word but in a spiritual sense. There was once a time that HOURS would be spent reading and studying the Book of Mormon. That time is long gone.  But what isn’t long gone is the feeling I get with the small amount that I have been doing. I am currently reading a novel about the Willie handcart company. They have trials. It was a disaster waiting to happen. They had trust in the Lord but it was still a mess.  Right now… I have faith in the Lord and after all I can do He will step up. What is that? When is that? I don’t know. I have not done ALL THAT I CAN DO YET. I have not done my visiting teaching. I have not offered service. I have not sent in my tithing. But the blessings have come in strange ways. For one, a fathers blessing was given to Tyler that he would be able to get through his scans with no problem. He did amazing. He cried when they strapped him down but he did so good. I have prayed a lot lately but mostly for small things. Things that I have lost ( keys, planners, meds) and they have been there. Why do I feel helpless to ask for strenght or to have this taken or made lighter? Because I have not done all I can.

Do you think I am judging you when something goes wrong? I don’t. I want to understand and I could if you would let me. Do I give off this aura of hatred? If I do I probably don’t hate you. Do I feel like I got left to fend for my self in my time of trial after being drained during others? TOTALLY. If Steff hadn’t been there for me to see that it would be ok I think that I would be more of a mess.

Steff, this is for you. I know that when you are contagious I cant’ come up but I have and will continue to show up and to bring dinner and to love Joe and you. Even if I don’t know his calmness is a seizure!!!! Thank you for showing me compassion… in the small three words you said. Steff stood there in Dr. Walkers office holding Tyler and looked at me and said “WOW!! Your life sucks!” all the while her little boy is upstairs being hooked up to a trach. My life doesn’t suck. My life hit a bump in the road.

I am drained. I am sad. I feel very a lone. I have a wonderful husband. He is supportive. He feels sad that I cry. I have parents who try to understand but they are far away. What I would give for a mom to hug me. To not feel guilty that this is happening yet again. I appreciate that they will be here for the surgery. I truly do.  But what about before. Tyler is not happy right now. He is so miserable. He cries and whines a lot of the day. It wears me faster than I can tell anyone. But I have no one that cares enough to come and sit with me so that I have some what of a sanity break so that it does not wear faster. Dallas would. He can’t. He is supporting us at work. Where did my friends go that I supported?

My other random thought. Please NEVER question my faith. Faith is not just sitting waiting for a Spirtual revelation. It is getting up and doing. Getting as much knowledge of the things not just spiritual but EVERYTHING. Ask questions when others bring things to your attenion and not deny the things that may be wrong.  I have more faith now than I did when Ty was first born. I have more disdain for bad words, yucky movies and other things that were okay even a few months ago. Its because I had faith to try something else. Questioning a doctor when you see that others are getting help for the same condition or same issues that you have been told are fine isn’t being faithless. Its being smart so that you can have the faith to get you through what was handed.

This surgery is going to be a true test of what I have left. I have been drained the last few months and was hoping that I could get a boost when I needed one. Serving and being there for others has helped alot. I am learning who is my true friends.  Please… I don’t want to have to do housekeeping on my friends. I want and need them. But understand that right now I need you. And when my trial is over and yours or a new one of yours comes about. I will be there.

Thank you Dallas for being my rock. Thank you for letting me cry. Steff thanks! Your humor makes me ok! Those who are there…. thank you.

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Responses

  1. Nancy- My thoughts are with you and Tyler.


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