Your child in pain.. The feelings, reactions, emotions and more...

Your child in pain... 

No one wants to have their child in pain, but when it does happen, and I pray for your sake it doesn't , your body and mind goes through so many emotions that it is almost impossible to control it, but as a single parent I learned that this is a part of life that some of us do need to deal with and it makes us stronger.  Hopefully this will help others.

     My children mean the world to me, I would put my life on any line for them.  I would do anything for them not to be hurt, in pain, or go through anything that will leave a physical or emotional scar.  I believe any loving parent would do this though, A parents love cuts through everything i want to say, However sometimes as a parent you can't stop your child's pain and when that happens you start to feel numb inside, you want answers, you want to stop it.... You can't !

     My daughter has been through 5 major brain surgeries and to say it has been hard on her is an understatement.  I have been there for all 5 to hold her hand, give her positive words, tell her God has this and you can do this, you are strong !!  I can honestly say though when you can do nothing to stop the pain you feel... Helpless !  I can't stand that feeling as a mom.  I have broke down crying many times, I talked to Chaplin's because I felt i needed guidance at some point's.  I spoke with several, several other parents that were on that same floor and their child was very sick too and they didn't know what to do either so we talked to each other and shared stories, yes it helped for a little while.

     I would have to say this last surgery was almost the worst one, April is 2 1/2 weeks post op from surgery and she is still in pretty severe pain.  The worst part is she is on several medications for her pain and she will take them but they only help for about 1, maybe 2 hours max.  I have called her neurosurgeon's office and she will be seen in a couple of days but never has she been in this much pain after a surgery or going home with this much pain.  

     I have been asked by a few people how I am doing and I say "I don't know how to even answer that question" because honestly,  I don't.. I worry, I am sleep deprived, I feel sick because i can't stand to see my children in pain, I'm numb sometimes.. I catch myself staring out into space.. I want to take her pain away and put it inside of me.. 

     When someone says she will be okay, I shake my head because they don't know that, they are just trying to assure me and I don't want to be assured, I want to see the pain go away and see her smiling face looking at me.  I get mad, not at anyone in particular but in general because i see so may little children that are sick and Its not their fault, why should they be suffering?  No answer because only God has that answer.  I keep praying every night that tomorrow is going to be a better day and I am so hopeful it will be.  

     A week ago when we were getting ready to leave the hospital i was walking down the hall bringing some stuff to the car and there was a woman sitting there looking lost, She said hi and asked me if i needed help, I said i was okay but i asked her if she was okay ?  Her child was in surgery and she said she felt like screaming, crying, and she felt like she could have fallen right down because she couldn't help her.  I understood it was a feeling of hopelessness and i told her i felt that way too many times.. She ended up coming downstairs with me and getting a cup of coffee and i told her that I go to the chapel ad it helps me when i feel that way.. I also told her to talk to a Chaplin because they will help you though a lot.. I'm not sure if she did but when i came back by there she wasn't there so maybe it helped maybe not..

     So yes when your child, or someone Else's is in pain many things happen to you too.. I never in a million years thought I would be watching my daughter deal with something like this but she is strong and I thank god every day that he is watching over her and giving her the strength to deal with all of this.. She will not give up and she is so amazing like so many other kids I know.. God Bless Their Hearts!!

Always keep your head up and smile.. I learned this one thing is what will keep kids positive even if they can tell your scared, or upset.. They know you are behind them and with them 100% , Its hard trust me on that one, but if you can do it, you all come out the winner !  <3

https://www.facebook.com/debra.seyfried

Why? We have all asked the question... So what's the answer ?

Why? That is the question we have all asked so many times about so many different things..

What is the answer ? That's where it get's interesting, I think...

     I'm sure you have said many times in your life so far, " Why is this happening to me ?" and you want a answer but you don't get one, Why ?  There is is again.. That word.. WHY..  

I personally have had my share of Why's and i will share them with you, Let me just start with my first one..  When i was younger I knew something was wrong with me, However we didnt know what so the doctors all said I was a "Nervous Child".  Yes they classified me as Nervous.. Now if you know me at all, This was so far from the truth, I grew up on a farm, I watched cows eat and when they eat.. They eat slow !!! I loved my life on the farm.. We had 3 Wheelers we drove through the field and had a awesome time.  I was a devil in plain English.  (Yes this is where joy gets it but i was a good devil, lol ) So back then these were my Why's..

• Why do i have to move all the time ?
• Why can't i sit still when were in a reasturant ?
• Why do i make that weird noise ?
• Why don't people want to be my friend ? Is it because im weird ?
• Why me.. Why ?

     Then when i hit 15 I had my first seizure  and i found out that the movements were called Tourette Syndrome a whole new set of Why questions started with the ones above, I will give you a few..

• Why do i have to have Tourettes ? Why do I have to have Seizures ?
• Why do i have to be the weird one ?  
• Why can't i just drop out of school like i want to ?
• Why is it wrong that i hate these things about myself ?

     So yes I had so many Why's back then it drove me crazy.. I asked my mom some of them and she didn't have an answer so she said I was normal, Always tried to tell me something to make me believe in myself.  That was great but I wanted answers and No one could give them to me.. I eventually gave up on answers and adjusted the best possible and realized that this is part of me and i won't let my disabilities take over me, I will take over my disabilities, and that is what I did..

     I grew up, Had children and raised them by myself, I never worried about support, we got by and I would do anything for my kids and still will.  When your a parent its a whole different ball park of Why's especially when you have a child that is sick or has a illness.  Lets put it this way it breaks me when one of my kids are running a fever so going back about 5 years I found out Joy has tourette syndrome also.. I blamed myself of course, No that was not the right thing to do and i do realize that but when you are the parent that actually has that disorder yourself you seem to do that.  So in the last 5 years I have asked these "why's" ..

• Why does Joy have to struggle with Tourette Syndrome like I did ?
• Why Does April have so much pain ? What is wrong with her ? (this was before i found out about her chiari malformation)
• Why are they running in and out of this room getting different doctor's to see April ?
• What is Chiari Malformation and What are they going to do for it ?
• Why does she have to have brain surgery ? I am so scared !!
• Why won't they give me an update, she has been in surgery for over 10 hours ?
• Why is April going through this, she has never hurt anyone or anything ?  Put me through this pain, its not fair !
• Why is Chad in pain ?  Why does he have a double hernia ?
• Why does she need another surgery ?  And then another and another ??
• Why wont these surgeries end ?  Why can't she be a normal child, she wants to know ?
• Why wont this pain stop ?  It's been 14 days since surgery, I hate seeing her in pain !
• WHY SHOULD ANY CHILD SUFFER ?? WHY SHOULD THEY BE IN PAIN ? ITS NOT FAIR !!

     Okay, I have asked so many more but these were some of the big ones.  You may be asking yourself what is the point of this ?  Well I came to a conclusion after speaking to one of the Chaplain's there and he told me his story about his life.. It was so amazing to me that it made sense to me not to ask why to so many things (even though i still do but then I remember what my conclusion is..)  See i have spoke to many, many Chaplin's at Albany med and they all were very helpful to me, Some listened to me, some talked to me and offered me ideas, some told me their life story.. All of it helped.  

     Here is what i want to say though.. When something big happens to your child, a family member, yourself, or someone else you are going to say Why is this happening ?  Well I have come to the conclusion that for about 75% of these "Why's" you won't be able to get an answer from someone, Only God has the answers.  You may be able to come up with the answer or a good idea of why if you think about it.  The answers have to really come from inside of you.  God does things for a reason.. We are not meant to know these reasons sometimes and maybe that is okay.  

     Let me give you a example of what i am saying, I have always asked this question..

• Why do i have to have tourette syndrome ?

My answer is one that i came up with by myself because it took years and years to realize it but i did.. 

• I believe I have tourettes syndrome because I was meant to educate people I meet about what tourettes is.. If i go to a school meeting for one of the kids the first thing i will say is " Hi, I am Joy's mom Debra, If you see any movements its just tourettes syndrome, If you don't know what that is I can tell you.."  

     Its actually very shocking at how many people do know now, back when i was 15 it was something no one knew of, There are a good portion of people that don't know what it is and many say "if you don't mind telling me that would be wonderful."   The people that do know what it is I actually shock.. They look at me and say "Really ? Normally people don't want to talk about this subject".  So yes i think i am here to educate some people and to be an example also for my children, So they know not to hide behind their disability because they are equal to every other person out there.. We are all equal no matter what !

     So to end this we all have "why's" but if you cant get a answer by asking someone you may need to dig deep or just letting go, I have many questions I have to let go of because there really is no answer, at least for now..   Hopefully this will make sense to some of you and possibly help someone.. I felt like i wanted to write it because i have struggled for a long time with questions (since i was about 6 years old) and now that i am 38 I figured some stuff out.

God bless everyone

Debbie

https://www.facebook.com/debra.seyfried