guest blogger

After my initial FaceBook is creepy phase...I found myself slowly beginning to enjoy it. Reconnecting with old friends. Getting know new ones. It was actually (gasp) kinda fun.



And I have to say. I've been surprised at how many college friends have not just reconnected with us. But have taken the time to read through my blog. The back story even! Which I've often thought would bore non-epilepsy peeps to tears! But it didn't. And instead I found old friends (and family) falling in love with Trevy...and offering prayers. Encouragement. I thought it was a sweet...passing...sentiment. And I was okay with that. Not everyone out there will connect with our story. Most of us live super busy lives. But to my sappy heart's astonishment some of them (hi guys!) continue to follow our journey as I share it here. And continue to offer support...and love...and encouragement via email. Facebook. Or even like the post I'm pasteing below. Written by a college girlfriend...inspired by her love for Trevy and our renewed relationship.




I laughed...shouted AMEN...got sappy...and felt my heart being more deeply knit with hers as I read through her thoughts. And since I'm not sure if I'll have the time or energy while we're embarking on this roller coaster to Detroit...I thought it would be a great chance to share them with you too!




To C...thank you SO much. For being my cheerleader. For taking your time...which I know is precious...to dive into the Infantile Spasms information pool and swim the murky waters with me. For being my sounding board. And for seeing in Trevor...everything that my heart years for the world to see in him. I love you for it...




To everybody else...enjoy!




***********


Top 5 Things Your Friend Who Has a Special Needs Child Wants to Tell You




I never realized what these parents go through until I witnessed it first hand (sort of) when I was reconnected with a friend from college. Her son suffers from a devastating seizure disorder (Infantile Spasms)and it really opened my eyes to what they are going through.

As I began to pray for her little boy who is only a week younger than my own child, God began to show me how to be a friend to her even though we are separated by over 1,000 miles. I am not saying that I am a great friend but I want to share with you a few things I think has helped me be a better friend to her.


So here is #1...

Do your own research but don't email your friend the 1 million websites that you find concerning her child's disorder BECAUSE unless she doesn't have the Internet she has already looked at every single one of them over the course of 5 sleepless days and nights following the diagnosis.

The reason why I say this is because you need to be informed. This is the closest you will get to understanding what your friend is going through and you need to be equipped to help her explain to others what is going on. Your friend has to explain what is wrong with her child more times a day than you have to pee and she probably is to the point that she just wishes she could put it on a brochure and hand it out to all the inconsiderate poops in the world who stare and make faces and ask dumb questions. She needs you to already "get it". She needs you to be able to sit in the room with her child while she eats her dinner or returns phone calls from the doctors and know that her child is safe with you because you know what is going on and how to help her child if they need it.



#2...

She needs you to shut up! or BE quiet! whichever you prefer. I am not really partial to either word so its your choice. There are so many different SN children but unless your child has the IDENTICAL disorder, DO NOT say "oh I know how you feel." CUZ' you don't! you don't have a clue and no matter how much time you spend with the child and your friend you still did not give birth to a child that has a special need and you don't know how they feel. I will give you an example from my own life that may seem a little extreme but I think you will get the point.
When I was 6, my sister who was 8, died from complications of juvenile diabetes. About 4 months after her passing it was Fall and kids were going back to school. A friend of my mom's stopped by our house one afternoon whose daughter had just left for college and it was about 20 hours away from where we lived. She sat at our kitchen table blubbering and babbling about her little girl being so far away and then


She said it


yep, you guessed it


she said, "OH [my mother's name],I now know exactly how you feel about [my sister's name]! I feel the same way!I miss my baby girl so much!"....well, my lowly, meek and mild mother lost it, probably one of three times in my life I ever saw her that upset. She responded back to her, "You don't have a clue how I feel, your daughter will come home for Christmas, you will get to see your daughter walk down the aisle one day, you will celebrate another birthday with your daughter and I will never ever get to do that with mine!"

Get my drift.... Those words can be so hurtful when you may mean them to be helpful and if you are one of those people who say to that "well, they need to not be so uptight, I am just trying to help." YOU need to go back and take TRUE FRIENDS 101 and get your head out your rear because being a friend to her requires for you not to be such a self-centered poop!

I feel like this is one of those friendships you have to have in your life. You need to know what its like to always put some one's feelings before yours. You need to allow them to have complete phone conversations without you really responding. They need to turn to someone that they can just be open with and not have to worry about hurting your feelings by not giving you proper "air time". You need to understand that the blessings you receive by being so selfless outweighs any other friendship you may have.


#3...


Watch the "religious" talk.

I know you are wondering why I would say that right? I mean, I am a Christian and I should want the whole world to know about God and how He has worked in my life but I think that sometimes the redundancy we as Christians use when someone is ill does more harm to our image than anything else.

If your friend is a believer then they probably already know everything that the scriptures say about handling trials in our lives. They really don't need you to quote scripture to them and give them every Joel Olsteen book. Trust me, they know the verses and they REALLY don't have time to read right now. If they want to read they will pick up the book themselves. Some people find comfort in self-help books but a lot of people when they are overwhelmed with LIFE just want some quiet time to reflect not to read a book that tells them they are handling the situation wrong. Often times all they need to know is that you are praying for them and once you have let them know that, be quiet.

If your friend is not a believer, now is definitely not the time to preach at them. The last thing they need in this world is your religious quotes. I have seen people who are not close to God be pulled even further away by an overzealous Christian who means well but their delivery draws a vacuum. Sometimes Christians can also cause the unbeliever to feel as if they are going through this trial because of their unbelief which cant be further from the truth.[See complete side note] You treat the unbeliever just like the believer, let them know you are praying for them and be quiet.


[COMPLETE SIDE NOTE]

okay... back to trials in our lives vs. God. I heard it said best from someone whose child died tragically in a drowning accident, Things happen because we live in a sin-filled world and while God is always in control Satan still has a strong hold on this world too and this world is a fallen place and we are a fallen people. Still not making sense, well to those who feel like only bad things happen to those people who are less than perfect in their Christian walk let me remind you of the verse that says all our righteousness' are as filthy rags and also, you should read the book of Job. See, sin entered the world and bad things are going to happen but in God's eyes our works mean nothing to Him because He never wanted it to be about works He wanted it to be about TRUST. He wants us to trust in Him while always remembering that one day we, as believers, will be resting in His presence and all our trials will be gone.


#4...

DO NOT, I REPEAT, DO NOT suggest "this great organic diet that you saw on an infomercial that, you know, that blond actress whose child has a disability switched her son to and he was magically cured!"

I will let you in a little secret, I do believe we should watch the amount of man-made chemicals we put into our bodies but I don't believe that eating 4 lbs of raw carrots which have not been "tainted" with pesticides is going to cure a SN child. In the actress' case, maybe it did help. Her child has a very relevant disorder which I know a little about because I have a friend whose child suffers from autism and it is a scary sad disorder so please, please don't think that I am "downing" her or her child, I promise its not that at all. I just don't think its the cure-all for every child with every disorder. I realize there are certain diets that show improvements in certain disorders and trust me, if the parent has done their research they already know about it. Be careful again how you mention things to that parent. IF you tell them their child needs to eat all organic or if you allude to the fact that the condition their child has was caused by them not eating organic you have done more damage to that friend's spirit than what can be repaired.


#5...


You need to be their biggest Cheerleader.

As I have mentioned before my friend with an SN child lives 1,000 miles away so this one is a little harder for me.


[ BECAUSE D, I promise you, if I lived there, i would make myself a cheerleader outfit and put my hair in pig-tails and put a big T on the front of my shirt and everyone in your town would say "Good Lord, please give that woman her meds and send her home!" ]


I am not tooting my own horn at all but I know that you are vocal about things that you are passionate about. Everyone at my work knows that my one wish is to be able to fly to where D lives this year and see her, my family and friends all know about my friend's child and they often ask me about how they are doing. Even on National Epilepsy Awareness Day I had 3 co-workers in purple that day! They need to see your support. Think about it, when the football team is down by 2 and they just feel like they cant move that ball another inch what gives them the motivation to get out there and move that ball into field goal range...

THE CROWD!! THE YELLING AND THE SCREAMING AND THE "YOU CAN DO IT!" ( like in the movie "waterboy" HA!)

It's the cheering that makes that football player get back out there and give it just a little more effort and I think the same applies for our friends with SN children. When they see the support and they hear the cheering and they hear the "YOU CAN DO IT" it gives them the energy to get up and push a little harder the next day.