#LOVEFORLINCON

We are fundraising to get a wheelchair Accessable vehicle for my son Lincon. Our goal is to get the Van by Lincon’s 5th birthday, Oct 13!

Our New Normal

I think sometimes I live in denial about Lincon's disabilities. Or maybe I am just so use to it now. To me he is just a regular little boy. Yes, he is different but to me he is perfect and just like my 3 other children. 

The other day we were at the doctors and they asked about Lincon’s vision because he is legally blind. He can see about 3 ft, but doctors are not sure how well he can or cannot see. Its just habit to hold things close to Lincon for him to see them. I know that Lincon legally blind, but it was like for a moment I forgot.

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After this it got me thinking about how normal Lincon's disabilities are to me now. Setting up his feeding pump is a part of our everyday. He is 40lbs now and I still say we do not need a lift. I am so stubborn, but I know in a few years that I will need one. I have learned to understand all the different noises Lincon makes.  I know when he is happy, and I know when he is sad or distressed. I can tell by his body language when a seizure is coming most times. I have learned to accept all the challenges that come with his disability. 

To us Lincon's g-tube is only normal. I push his medication through a syringe 3 times a day and I have had this routine for over 3 years now. Everything Lincon eats and drinks goes through his g-tube. I set the pump up and clean it four times a day everyday. For a long time eating and drinking was a huge skill I stressed about him learning. At one point he could eat about half a baby jar of pureed food. He was doing so well, and I was so happy but as his seizures increased and we lost that skill. In the past I would panic when Lincon has pulled out his button (the piece that does into his tummy for his food). I was so scared to put a new one back in that we would always go to emerge. Now I change it at home every 3 to 6 months and it does not phase me. I have come to a point that I realize that he may have a g-tube his whole life. 

I have come to accept this reality where my son might not ever have words to say I love you. All though his smile is enough for me. His laughter when I tickle him, his cry when he is upset and his yells/screams when he is excited is how he communicates. I have hoped for years he would start to learn some words. Even if his only word was mom. Its okay though because I have learned his language and I understand him. 

I think the one thing that always remind me that Lincon had a brain injury is his seizures. Over the years they have become worse and worse. They are hard to manage with medications as he is on the max dose for each. Every morning and every night I give him his anti epileptic medications, he takes two and his cbd oil. Despite the medications he still has seizures everyday. They started as absent seizures that were extremely hard to notice. Most people would not know Lincon’s was having a seizure if they did not know him. Then the atonic seizures started they were more noticeable. Lincon would just go limp for 10 to 20 seconds. Thankfully, these stopped with an increase to his oil and Keppra. Then the clusters of myoclonic started. At first, he would have one every few days, they became more and more until on a good day he would have 10 and a bad day 30 or more. So, the doctor started Lincon on topiramate to help the myoclonic and they stopped but it came with many side effects. He was so tired and not himself, and he drooled so much he seemed out of it while he adjusted to this new medication. We had to increase this medication to the recommended dose very slowly because of the side effects. We gradually increased it over about three months. Every time we think we are starting to get some seizure control they come back. When they come back its like they are worse than before. Right now, we are in the midst of increasing his topiramate again because of tonic seizures. They look a lot like his myoclonic but last longer. Its heartbreaking to watch and there is really nothing I can do for them other then time them and hope a seizure passes quickly. We have an emergency rescue medication for any seizure that last over 5 minutes and I am thank full I have not had to use it often. I am always wishing for a miracle that Lincon’s seizures will magically stop. 

Its a difficult reality I live raising a son with special needs. I always wished he would just be "normal" again. I wished for years that Lincon would re-learn some of his lost skills. I wished for so long that he would be able to eat, walk, talk, watch TV, play with regular toys, use his right hand or even tell me when he needs the potty. I love my son very much. I am at a point that I am coming to terms with our new reality, but I am scared. I fear how I will continue to care for him. Some days I think about how I will do it when he is as big as his father. No matter what I will manage, and I will adapt. I will continue to learn the best possible way to care for Lincon and help him reach his full potential. Ill care for him for the rest of his life because I love him unconditionally. Even if that means my life and dreams are on hold. As long as I am physically able to care for him. Love you Linc with all my heart.

Edit: for those who read this whole post please leave a green heart and say done. I just want to know who reads this .

Brain injury is very misunderstood. They range from mild to severe and are devastating to the individuals and their families. Lincons brain injury left lincon with severe disabilities. It has affected not just lincon but our whole family. I would love to see more awareness and more education about brain injuries. I will wear green for someone I love everyday this June. Let us shine a spotlight on brain injury this month!

 

#loveforlincon

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