Here we are more then halfway though 2018 and what a half it’s been! I have been wanting to express so much but just seems that every time I start to write, a curve ball is thrown my way. Sound familiar? I know....preaching to the choir.
So let’s start out by saying that life has not been all that wonderful, just being honest! With great happiness also comes sorrow and the roller coaster continues for eternity. There have been highs and lows but honestly it’s just been exhausting. I use to be such a thrill seeker, wanting to sit in the front row for those insane rides but lately I’m choosing to sit out. Just wanting some emotional consistency, how can we as parents of differently-abled children make it work everyday while staying emotionally healthy?
Seizures suck, yup I said it and would have included other choice words but figured I need to keep this as PG as possible. As if Autism is not enough, now the boy has to suffer from seizures? Who do I have to thank for this? Who do I thank for the daily concern and worry if my son will have a seizure? If my son will sustain a life changing injury because of a seizure? That when my phone rings and I see home, the school or the caretakers name my heart sinks. I think the worst thing you can tell a parent who is going through this similar life is “all is going to be okay” “think positive” or better yet mention God. Unless you live this life, just listen if you want to be a good and supportive friend. Comparing your “temporary problem” to our life time of struggle is really insensitive. I can’t imagine it’s done purposely but have to admit that it hurts and actually makes it worse for us.
To the parents that are reading this and are feeling the same, its okay to take a break, it’s okay to be a little selfish, we need to worry about ourselves because no one else will and we have to be healthy for our children. Now of course this is complicated especially when you have other children and a significant other but need to find what will bring some peace to your life and your family. We have to also keep in mind what this does to the entire family, we need a balance of some sort. May be a day at the spa, a jog on the beach, a bottle... I mean glass of wine, or a night getaway but need to find it and follow through with it.
So my year... let’s talk about some of the good because we did have some happy times. My oldest got married to an amazing young lady that I am honored to call my Daughter in Law. The bad, Chandler had a massive seizure the day after the wedding. We knew it was coming so he missed the wedding. Bitter sweet right? Blessed to have some amazing pictures but everyday that I walk by the family wedding picture, I am reminded that Chandler was not there. Have I mentioned how much he has missed because of his Autism? I will leave that for another blog.
3 days later, my husband and I celebrated our 20 year anniversary. I absolutely love when people ask me how we celebrated. What did you get? Answer...... we celebrated in court trying to obtain Legal Guardianship for Chandler. Our present to each other was that the Judge granted Guardianship. Now I have come to terms that we will forever care for him, but every decision we will forever make has to include him and if it will work for him. It can be worse, I know but reality definitely sets in when they turn 18 and you realize just how much all the years of therapy and intervention have worked or not. Again..... SUCKS!!!!!!!!
I feel like Chandler turning 18 is similar to how I felt when the Neurologist told me my beautiful blue eyed baby boy had Autism. Oh and by the way, I was 4 months pregnant when I was told this. Good times right, just kept getting better and better. I will say that my youngest has been such a blessing and is amazing with his brothers. I actually feel that he was one of the best therapists for Chandler.
The biggest scare and the one event that took about 10 years of my life and gave me a ton of gray was in June. At camp, an amazing camp, Chandler had a Seizure in the pool. Thankfully he was saved by the lifeguard and quick thinking Camp Counselors. To hear that they had to perform CPR on your child is frightening. That call turned me into Danica Patrick and boy did I get there in record time. When I did, all I can do is cry because I realized that morning could have been the last morning I saw my son. I have yet to recover from this. My youngest was volunteering at camp that day and was with Chandler. Makes me sad to think what he has had to endure but I will say it has made him an incredible young man.
So what is the point in me sharing all this, a pity party? Not at all. It is to put in perspective what so many of us go through day after day. It’s to share my life to help better others and hopefully to teach a few lessons. I am blessed in so many ways, I know this but I would do anything for better health for Chandler. I’ve accepted that he will forever be dependent on adults, but now we need to make sure he is setup to have as much of a productive and safe life as possible. All we want for him is health and happiness. When he gets frustrated because he cannot speak, I can only imagine what is going on in his head. It breaks my heart! We have tried, we have done it all but his communication just didn’t develop the way it should. If you live a similar life, build a support team that understands your needs. It’s okay to weed out the ones that don’t. If you are a friend, support the individual going through this by just listening. Don’t compare or try to fix it, you can’t. (But of course we appreciate you for trying). Social media can be wonderful but can also be a depressing. Stay away if you need too. Take time for yourself and find what will keep you emotionally balanced. Don’t sweat the small stuff, smile as much as you can and cry when you need too. It’s okay. We are in this journey together!
So let’s start out by saying that life has not been all that wonderful, just being honest! With great happiness also comes sorrow and the roller coaster continues for eternity. There have been highs and lows but honestly it’s just been exhausting. I use to be such a thrill seeker, wanting to sit in the front row for those insane rides but lately I’m choosing to sit out. Just wanting some emotional consistency, how can we as parents of differently-abled children make it work everyday while staying emotionally healthy?
Seizures suck, yup I said it and would have included other choice words but figured I need to keep this as PG as possible. As if Autism is not enough, now the boy has to suffer from seizures? Who do I have to thank for this? Who do I thank for the daily concern and worry if my son will have a seizure? If my son will sustain a life changing injury because of a seizure? That when my phone rings and I see home, the school or the caretakers name my heart sinks. I think the worst thing you can tell a parent who is going through this similar life is “all is going to be okay” “think positive” or better yet mention God. Unless you live this life, just listen if you want to be a good and supportive friend. Comparing your “temporary problem” to our life time of struggle is really insensitive. I can’t imagine it’s done purposely but have to admit that it hurts and actually makes it worse for us.
To the parents that are reading this and are feeling the same, its okay to take a break, it’s okay to be a little selfish, we need to worry about ourselves because no one else will and we have to be healthy for our children. Now of course this is complicated especially when you have other children and a significant other but need to find what will bring some peace to your life and your family. We have to also keep in mind what this does to the entire family, we need a balance of some sort. May be a day at the spa, a jog on the beach, a bottle... I mean glass of wine, or a night getaway but need to find it and follow through with it.
So my year... let’s talk about some of the good because we did have some happy times. My oldest got married to an amazing young lady that I am honored to call my Daughter in Law. The bad, Chandler had a massive seizure the day after the wedding. We knew it was coming so he missed the wedding. Bitter sweet right? Blessed to have some amazing pictures but everyday that I walk by the family wedding picture, I am reminded that Chandler was not there. Have I mentioned how much he has missed because of his Autism? I will leave that for another blog.
3 days later, my husband and I celebrated our 20 year anniversary. I absolutely love when people ask me how we celebrated. What did you get? Answer...... we celebrated in court trying to obtain Legal Guardianship for Chandler. Our present to each other was that the Judge granted Guardianship. Now I have come to terms that we will forever care for him, but every decision we will forever make has to include him and if it will work for him. It can be worse, I know but reality definitely sets in when they turn 18 and you realize just how much all the years of therapy and intervention have worked or not. Again..... SUCKS!!!!!!!!
I feel like Chandler turning 18 is similar to how I felt when the Neurologist told me my beautiful blue eyed baby boy had Autism. Oh and by the way, I was 4 months pregnant when I was told this. Good times right, just kept getting better and better. I will say that my youngest has been such a blessing and is amazing with his brothers. I actually feel that he was one of the best therapists for Chandler.
The biggest scare and the one event that took about 10 years of my life and gave me a ton of gray was in June. At camp, an amazing camp, Chandler had a Seizure in the pool. Thankfully he was saved by the lifeguard and quick thinking Camp Counselors. To hear that they had to perform CPR on your child is frightening. That call turned me into Danica Patrick and boy did I get there in record time. When I did, all I can do is cry because I realized that morning could have been the last morning I saw my son. I have yet to recover from this. My youngest was volunteering at camp that day and was with Chandler. Makes me sad to think what he has had to endure but I will say it has made him an incredible young man.
So what is the point in me sharing all this, a pity party? Not at all. It is to put in perspective what so many of us go through day after day. It’s to share my life to help better others and hopefully to teach a few lessons. I am blessed in so many ways, I know this but I would do anything for better health for Chandler. I’ve accepted that he will forever be dependent on adults, but now we need to make sure he is setup to have as much of a productive and safe life as possible. All we want for him is health and happiness. When he gets frustrated because he cannot speak, I can only imagine what is going on in his head. It breaks my heart! We have tried, we have done it all but his communication just didn’t develop the way it should. If you live a similar life, build a support team that understands your needs. It’s okay to weed out the ones that don’t. If you are a friend, support the individual going through this by just listening. Don’t compare or try to fix it, you can’t. (But of course we appreciate you for trying). Social media can be wonderful but can also be a depressing. Stay away if you need too. Take time for yourself and find what will keep you emotionally balanced. Don’t sweat the small stuff, smile as much as you can and cry when you need too. It’s okay. We are in this journey together!
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