Tuesday, September 15, 2015

Dear Loved Ones

I wrote a letter to my fellow warrior parents a few months ago. It was shared on a few sites, including Autism Speaks. If you missed it, you can find it here
https://www.autismspeaks.org/blog/2015/06/11/letter-my-fellow-special-needs-parents

Today, I would like to share a letter to my family and friends
To those of you who knew me before I became a mother to my first child with autism, you may want to read this. I encourage you to read this with an open mind. Try to place yourself in my shoes as you read this. I decided to write this letter after my counseling appointment yesterday. My husband and I are in marriage counseling and yesterday my husband admitted that he holds it against me that I changed for our children because he didn't change. Without saying more, it has bothered me in more ways that you can imagine. Then I thought.....if my husband can't understand and support why I have had to change then how can my other loved ones?!?! So this letter is for all of you!

Dear loved ones,

When I became a mother to a child with severe autism, I changed. I can openly admit that I changed. As the doctors and professionals will say, it is a life changing diagnosis. The life that once was does not exist anymore. It simply can't exist if you want what is best for your child/children.

Before I became a mother to Trenton I enjoyed watching football and baseball games. I enjoyed supper out at a restaurant with my husband and a late night movie. In fact, we would even go and catch a game and a football game in person a few times a year.

I also worked and maintained a healthy work relationship with my co-workers and students. I attended and loved every family event that I could go to.  I was a passionate and an empathetic person just like I still am. I did things for others and loved helping others in time of need. However, a few things that defined me as the person that I once was had to change. I didn't have a choice!

A persons life can change in the snap of a finger and take a tragic turn. This happened to me and my husband before we knew it.  My husband and I didn't just have one child diagnosed with autism but both our children. I eventually was unable to be involved in sports and television like I once was. My 8 hours of sleep that I once received turned into 2-3 hours of broken sleep. My 15 minute drive to work had to be exchanged for 2-3 hours of  driving to therapist daily and then the countless hours of driving Trenton around at night. I had a child with a severe disability to take care of and my schedule didn't allow time for sports, dates, quiet dinners with my husband, etc. I had no other choice other than to help my children.

I no longer had the energy to even watch TV if my children happen to be sleeping at the same time. I have no idea if and how long Trenton was and still is going to sleep. When he sleeps, I must sleep. There is no other way around it! I have to take care of my children. They are counting on me. They need me!! Would God expect anything else? Who is going to meet all of Trenton and Andrew's demanding needs if I choose not to help them?

So yes family and friends, I am a changed person and I wouldn't change it for one second! It makes me ill to my stomach to think of where the boys would be if I didn't trade in my love for sports for my love of helping my children. In return, I would love to be doing this with my husband instead of watching sports. Where would my boys be if I didn't trade in my only free 2 hours I have daily for sleep for watching sports with my husband? If I did, I am certain my heart would already have more problems than what it does. A person can't go on no sleep! TV isn't important....sports isn't important to me.....going out to eat isn't important to me.....its taking care of my special needs children that is important for me. It is trying to make the world aware because let me tell you, many people are unaware and uneducated of my children's disability. It is very sad!

Loved ones, you have to know that I don't have a choice! No parent should have a choice! No grandparent should have a choice! No loved one should have a choice!

So please, try to understand this. Don't take offense if I can't come to a family Christmas or family birthday party. Please don't question what I do daily because I am the only one who knows my children and knows what is the best for them. I am the only one who has read the materials, talk to the therapist, talk to the doctors, did the research to put all the clues from own children together to know the type of autism that they have. It takes time! It takes patience! I have done it!

Yes, there are days where I think I am going to pull my hair out. Yet, there are days that is full of nothing but pure joy!

Am I a little testy on some days? Yes! Would you be if you were up around the clock almost every day?!?!  Would you be if you knew your child was going to have to live with someone his entire life because he will never be able to live on his own?!?! Just asking! Remember...place those feet of yours in shoes of mothers like me...not just me...but mothers and parents of children with special needs.

I do have plenty of time to get together and hang out, its just at a different time of day then it used to be. My time is valuable just like yours.  I can no longer be an evening going out kind of girl. I am morning kind of girl while the boys are at therapy and school.  During this time I can be found exercising for one hour and then sitting by the water at the pond enjoying the beautiful world that God created. I am more than happy to share that time with you.

So my dears loves ones, if you can take anything from this letter please know that I am tired daily! I have two children with autism that I run around after, manage their therapies, organize their reports, fight for their rights, manage medications, insurance, etc.  Yes, I am a different person but a much better one! My boys are a true inspiration to me and I wouldn't change one thing.

So if you call me, or want me to come to attend a family gathering, or anything else that floats your boat, don't be offended if I can't make it. Yes, I want to still be included but just may not be able to make it.I would love to be there but helping my children and meeting their unique needs is more crucial and important. It simply doesn't mean I don't want to or that I don't love you, it is just that you have taken a back seat until life is a tad calmer and better.....if that ever happens.

Love always,
A warrior Momma

3 comments:

  1. Beautiful. I am not sure how anyone can not change in order to meet the needs of their child. My best friend has a child with autism. It has completely changed her life. Her and her husband are totally different people. I have no idea how they could have not changed. It is just a simple fact.

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  2. Thank you for your share!

    God bless you and your lovely family. My wish for you, is that you got to a point where are you are completely at peace with your decisions and choices and do not feel the need to justify yourself to those around you. In your heart you know that your choices are sound. YOU know that you are tending to HIS will for you.

    It sounds as though you have no extra time and that most of your head space is already taken up! I hope if you can find some free time and free headspace, you are able to fill it with things that nurture you and fill up your bucket. I hope that you are able to find a way to keep your bucket full so that you can continuously give to your children.

    Do not worry if others around you understand or don't understand. I know that is easier said than done- for all of us seek validation and the comfort of others saying, "I understand." I am sorry that that does not come more for you. I will say it to you so that you can exhale. I need others to say it to me, to tell me that they understand that my life is hard as a single mom and a woman in recovery. I need to hear that I'm doing a good job with my children. I know it in my heart but I still need to hear it.

    So, to YOU, " I understand that you are spread thin. I understand that you have been given two special needs children that you have made the utmost priority, sacrificing all else! You are a good girl. You are doing good things. I know that even though you have made these choices, it is hard for you to have to tell people no, you cannot make their events. I know that even though you are solid in your decisions, the criticism and lack of understanding from others is hard to deal with and push off. I know that saying that they do not understand doesn't make it feel better. I am sure that it hurts and I'm sure that is a constant battle between knowing that you are making the right choices and wishing that others around you were supportive. Keep putting one foot in front of the other. I will pray for your strength and the progress of your children. I will also pray for your husband. I'm sure that your husband feels helpless. That is the emotion behind his words. Men want to fix things for us. He is powerless with his sons' illness and watching his wife exert every bit of herself to help them. I am sure that his heart hurts " in that regard alone, let alone more."

    My prayers are with you and yours

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  3. Beautifully written Angela, even I as a grandmother have changed for my precious grandson Ryker!!!!! I have came to the conclusion, that some people do not even try to understand, they are simply ignorant about autism and what it means for parents and grandparents. Sometimes, many, many times, we just need to be brutally honest about how much we have changed , and even then they choose not to understand):




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