The other day my sister was carrying Carson and I had one of those "He's not a baby anymore" moments! Well, somewhat...but he is a nearly 50 lb 1st grader! So I looked up one of my favorite baby pictures from 2005 and the video that I love. This was back when we had never heard of MEB disease, and Carson was nothing but happy and an excellent sleeper! One day I would like to write a book about our experience, but the thought overwhelmes me really. So I have compiled a top 10 list of what I would tell someone who just found out their child had a severe disability. This isn't the all "Rainbows and Unicorns" version either, it's real life. Ofcourse being religious would make me say first and foremost that believing in a loving Heavenly Father and an after-life where we will all be together again is the Glue. But here is the Everyday List to make it here on this earth too! So here we go, let's title it: "That which does not kill us, only makes us stronger"
1. Try not to look into the future, it takes care of itself really. Enjoy each day for the small milestones--even if somedays you have to take it hour by hour. The old adage "It couldn't get worse than this" is simply not true. It could get lots worse and then your 65 & healthy as a horse dad dies unexpectedly of Pancreatic Cancer and your sister get's a brain tumor the size of 2 golf balls removed all in June of 2008! Alas---it's soooooooooooo much better to focus on the positive and be grateful for those sweet moments in the day. We used to stare at Carson's chest throughout the night to make sure that he kept breathing. Now we realize that it isn't up to us how long he will stay, and we are blessed for all of the great memories we have made thus far. Each day is a gift, you have to get to that place somehow.
2. The statistics for divorce are 80% for parents with a child with disabilities---yet you can make that 20% stronger, happier & more fulfilling than numerous marriages these days. Happiness is a choice-a committment. Keep eachother laughing!Don't give up!
3. Never say never. I was NEVER going to let Carson leave my sight. Then I learned that there are actually teachers, bus drivers, aides, classmates at school who are heaven sent. It can be soooo good for your child to get out and it's good for others to grow and learn from your child. It's good to say "Yes" when someone offers help. School has given Carson an independence and happiness that shows on a daily basis.
4. Just Smile and take it with a grain of salt. They don't get it and you don't have to educate the world. On the flip-side some, really innocently don't understand. Before having a child with disabilities, I was one of those who didn't know how to act around a child with disabilities. So TRY to look for the innocence and then count to 10.
5. Medication isn't an awful thing! I carried a prescription in my purse for 3 months when Carson was 3 years old. That was the point where we had hit rock bottom. He gave up sleeping---PERIOD. Then he became engrained to pull his ears until they bled like crazy all throughout the day & night without rhyme or reason or scratch his face to pieces. Neosporin and I are close friends even to this day. Watching bloodshed to such a degree is mentally hard on everyone involved on a daily basis. His poor brain felt NUTS. Today things are alot better, he struggles EVERYDAY with these urges---but manages so much better. Now because of that assistance, Carson is 6 1/2 and is able to cope better PLUS his smile and laughter has returned more often than not. It's the quality of life, not the quantity.
6. Sense of Humor.....Sense of Humor....Sense of Humor! I am an avid fan of finding humor in everyday life. Even the toughest and most frustrating situations become ironic somehow. You have to smile. I read a study that showed that if you laughed out loud, your brain is actually convinced that you are happy even if you are having the worst day ever. Seriously.......don't be so Serious.
7.You're life will never be the same again, and if you play your cards right--that's doesn't have to be a bad thing. You will let people down and have to say "No" more than "Yes" at times. At first you will try to explain until you are blue in the face because you do care and you don't want to upset how things used to be. Yet as time goes on you realize you are doing the best that you can, and it's not a choice to do things different now---it's a necessity.
8. Take time out for yourself! That is a MUST! It is thoroughly mentally and physically draining to wear so many hats on a daily basis. Somedays you want to scream because you can't even remember what it was like to live a "normal" life. You have to find happiness in enjoying something that takes you away for even an hour. It's so important to clear your mind and start fresh for you and your family. Otherwise you will fall apart, period.
9. Most days you are smarter than any of the Doctors, Therapists and etc. You have lived it, you KNOW. You know your child better than most Degrees! Never ignore your instinct on what is best!Press forward with persistance to get the results you need.
10. Cry. Then cry some more. You have to let it out!I have known people who have lost children and it is a horribly sad feeling. A loss that I will someday understand. Then there is the type of lose that you become accustomed to feeling everytime the neighbor-friend, cousin, or any 1st grader reminds you of how your son would have been doing that had you landed in Italy and not Holland. Or when (and this makes you feel bad later) you wonder why that kid got that disability but your sweet child got the brain disease and the muscle disease and "That's just not FAIR" It's not that you have that feeling everyday, just occasionally it's like a kick to the stomach when you can't catch your breath. It's a loss that you live with. So you cry that ugly cry with snot and mascara on the pillow, and then move on. You re-focus on the how grateful you are for the joy they have brought & what they have defied all odds to do-- which the doctors had informed you would most likely never happen. They are the elite!
Wow, that list went fast, maybe I will write a book someday since that only scratched the surface! In closing (remember, my favorite church phrase), I have been BLESSED to be chosen as Carson's mother. It has turned our family into a team. We all have to work together in order for this ship to stay afloat! I have experienced many emotions to the highest degree that has strenghthened me in so many ways. I have felt gut-wrenching pain that would rip a heart out over and over YET also joy that I would never have dreamed possible. Better than an Ice Cold Coke and a Box of See's chocolates! YEP!!! THAT MUCH!!!!
