The letter below is something I read and I couldn't believe how much it reminded me of Brandon & Kayla! First there is all the funny things - using Jake's ramp as a roller coaster, begging to be put on his vest (a machine that shakes you up to keep things moving in your lungs), riding around in his wheelchairs, asking to go up in his hoyer lift....Then there are all the sweet moments - simple touches, holding his hand or rubbing his head, playing with him & talking to him the way we do, encouraging him when he's working hard to sit up or simply lying in bed with him to say goodnight. Then there's the helpful moments - helping me pack Jake's lunch if I'm running late in the morning, grabbing a diaper or medicine or oxygen or anything else I need when they are the only ones around to help! They are truly incredible and I am one blessed mom :)
I heard that you deal with more than any child should, like having your parents spend a lot of time away from you. You know they are taking care of your sibling, possibly bringing him or her to the doctor, maybe your sibling is admitted in the hospital often, they might be on the phone taking care of insurance business, or even physically caring for your sibling constantly. I know my friend. You see these happenings more often than not. You see the love that your parents have for your special sibling and it is being embedded into your heart. You see the patience they exhibit when caring for him or her and it is being buried into your soul. You see that your parents never stop trying to get what your sibling needs and it is being ingrained into your mind. You see your parents exhaust themselves making sure that your sibling and you are well taken care of and loved and you are learning from this. You may not know it, but all of these “little” things are teaching you traits of how to be an amazing person.
I’m certain that being the sibling to a child with different needs than most is a struggle. I know you have those moments where your heart stings with jealousy, where you are worried sick over your sibling, or when you get mad because you can’t go to all the birthday parties you want to. All of those times are totally understandable. You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things that you have in your household that your friends don’t. How about all the cool equipment your sibling has? Huh? I know you’ve climbed into that wheelchair or played with his super cool assistive technology toys! How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body? You get to experience a friendship that is like no other. Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart. They look at you with those beautiful eyes and know that you are there for them no matter what. The bond you have is indescribable. You are their sibling, their friend, and their protector. Your sibling might not be able to speak verbally, but we both know that your hearts together carry on conversations that us adults could never possibly understand. And I tell you what, we are so extremely jealous.
Did you know that your parents watch you and your siblings interactions on a daily basis and their heart literally wants to burst out of their body with pride and love? They see everything you do for your brother or sister. They notice when you walk by and give them a quick kiss, stroke their hair, or give them a hello. Your mom and dad love to witness you sticking up for your special sibling, or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place, hold their hand during tests or doctor visits, or wipe their innocent little face. Your parents recognize every time you perch yourself on the counter to help make medicines or bring them a diaper, a syringe, or whatever else they are calling out to you! You do such a crazy amazing job helping your parents. It surely takes a wonderful little boy or girl to do what you do on a daily basis. I’m sure they tell you thank you, but sometimes if they don’t just know THEY ARE BEYOND THANKFUL FOR YOU!
But most important of all, my dear one, the reason you are going to ROCK this life- you know true love, you know true heart ache, and you know what is truly important. You have lived a life that takes a strong heart and a strong mind. You will mature much faster than your schoolmates (don’t be too hard on them), you’ll exhibit compassion that astounds others, you’ll know more about healthcare than 95% of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what! When you were introduced to your sibling with complex needs for the very first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you are going to change lives for the better….all because you were the sibling of a child with specialties. Rock on my brave friend!
Written by: Katie Corkern
Since PKS is not hereditary, we decided to have another baby when Jake was a year old. Little did we know, we would be blessed with natural twins!!! We apparently like surprises in this family....first we have Jake with a crazy rare syndrome.....then we have twins and twins do NOT run in the family!!! Needless to say, I believe Brandon & Kayla (born 7/14/05) were truly a gift from GOD. They were close from the very beginning....
Both Brandon & Kayla have been amazing with Jake from the beginning. That's all they know - Jake is their big brother and they love him. They have asked many more questions as they are getting older and I simply try to answer the best I can! I had to share a few of the cute / interesting things they have said / asked about Jake...
From when they were little, both Brandon & Kayla loved being around Jake! They play with him with all his sensory toys, they like to wheel him around the house, they like to make him dance and they love using the ramp on our deck as a rollercoaster (i still have to get a picture of that one)!! Jake is so lucky to have such a great brother and sister!!