Monday, April 20, 2015

Nana's Love

(Many of my readers are grandmothers. This is a guest post from my mother, the boys' Nana.)

My daughter asked me to write an article for  her blog in honor of Autism Awareness Month.   My perspective is going to be from a "Nana's view". 

Anyone that knows me knows how much I have always looked forward to being a grandma!  All my kids said they actually felt sorry for the first one of them that made me one.  I was the one that was always grabbing the babies at church, work, wherever I was when I spotted a baby I was there! I went to garage sales and had a room full of clothes, toys, and all the "necessities" it takes these days to care for an infant before one was even a glimmer in their parent's eyes! I remember a former boss of mine saying once, "If there is a baby within 10 feet of Aleta she will have it in her arms in a heartbeat." Yes, you could say I love babies!!!!

Needless to say, when my daughter announced she was pregnant I was on Cloud 9!!  I prayed that my first grandchild would be healthy, of course, but NEVER once, did I even think about autism! I was thinking along the lines of a heart defect, cancer, etc...physical things.  I don't remember even thinking about having a disabled grandchild.  Was it because I thought I was immune from something like that happening to my family?  I would like to think not, I just didn't think about it at all!!!  That is to my shame.

The day Trenton made his appearance in the world, I was just about as happy as anyone could be on this earth! My heart was full! A lot has transpired for my family since that time, which I won't get into, because if you are reading this, of course, you already know how things turned out.. you already know the "rest of the story".  I have thought back many times to those prayers that were lifted up. I have even tortured myself with thoughts that God was trying to teach me a lesson. Of course, I know this isn't the case. But I have learned a lot about prayer since Trenton's birth. As a matter of fact, I have learned a lot of things about life in our life, as we know it, can change in the twinkling of an fragile life really is...and that this life is full of laughter and tears, joy and pain, and in the midst of pain you can always..always find things to be thankful for!  God never promised this life wouldn't have storms, only that He would be there in the midst of them to help us weather them!

I still remember the day Trenton received his diagnosis.  I was keeping Andrew so I didn't get to go with her and Tim for support. I got the "news" via a phone call. Her words still haunt me...."Mom, Trenton received the diagnosis of autism today." Her words were few, her voice was flat, and I can still hear those words in my brain!!!   I dropped to my knees and sobbed. I remember Brian was there with me that day and he said, "Mom, we already knew it." I did............ but  hearing those words changed my whole world and it has NEVER been the same. I didn't stop crying for at least a month..every single day..the tears came..sometimes while I was simply folding the middle of the night....while cooking.......while rocking Trenton, Andrew, or Lincoln to sleep during the day.  I began a whole new relationship with God.  My prayers were no longer just breathed out at night to Him before falling asleep.  Most of the time, in the beginning, I asked God..WHY?? 

One day during this time I had a dr appointment.  It was just a recheck, but when I went in and the nurse took my blood pressure...wellllll, let's just say it wasn't good!  It was through the roof.....When the nurse practitioner came in she retook it and told me I could not have blood pressure that high and something had to be changed to get it down.  I told her it was simply due to stress, and unfortunately, that was one thing even she couldn't do anything about.  I remember telling her about the turn of events in my life, Trenton's recent diagnosis, etc. Of course, I started crying so much I couldn't talk. I'm sure when I left that office that day those in the waiting room probably thought I had received a "death sentence".  In a way, I felt I had already received it.   She put me on an anti-depressant and told me I simply had to get things under control. I went home, put those pills in the bathroom cabinet, prayed about things, thought about my daughter and how strong she was, and figured if God and me couldn't do this without pills, then something was definitely not right in my life! I threw them away!!!!!
  I began to avoid going to Wal-Mart or the grocery store because I was afraid of running into someone that would ask me about Trenton. This happened one day and I stood in the middle of Wal-Mart talking to a friend and I started talking and crying so much I had to leave.  But, probably the one place that really affected me the most was when I went to church. Yes, church!  Of all places, why did going to church services bring me to tears.  Our poor preacher probably stared to think I hated going to church so much I cried!!!!  Did I expect the Lord should have carried me through the rest of my life unscathed while others around me were suffering trials? I hope not.  I still don't know why I always cried while at church. Maybe it is the one place I felt the love of God the most; and desired that "peace that passeth all understanding" and I wasn't feeling it.  I just don't know.  I still seek that peace. I am not sure I will ever receive it in this life. I hope so. really is the "anchor of the soul."  It keeps me getting up in the morning. 

I often think over the blessings I have enjoyed in my life.  Things I didn't really even think about being "blessings" at the time. Thus, I probably didn't thank God enough for them if I didn't recognize them as blessings at the time.  I would like to think I was thankful for things like health, healthy children, a warm home, enough food to eat,... you get the picture.... the "things" we often breathe out our thankfulness for to God.  Autism has taught me that there are many, many more things we should thank God for that I, admittedly, didn't even think about until autism knocked on our door! 

Simple things like......taking my kids for an "outing". I remember one time when my kids were small picking them up from school with bags packed in the car and we headed to Indianapolis for the weekend to the Children's Museum. We had kept it a secret and they were so surprised and happy!!!  Did I even consider this a blessing?  Probably not!  This is impossible for my daughter and her family. Trenton could not tolerate being in a museum. Let's just say it would be a nightmare to attempt this. 
Simple things like......going to McDonalds!  How many consider this a blessing?  I know I didn't because I was always trying to get my kids to eat somewhere else..some place perhaps a little more  healthy!!!
Simple things like.....a T-ball game, Little League, basketball....all the extra-curricular activities neurotypical,  healthy kids get to enjoy!
Simple things like...just a simple "hug" from your grandchild. .. any gesture of love from them. If you never know what it is like to be hit by your grandchild and pushed away when you try to show them affection and love, then you are fortunate!
Simple things like....going to church!  Yes, that's right.....going to church!  Yes, perhaps we all get an "A" for considering this a blessing. But, my daughter sometimes can't even go to church. Sometimes it may be because she has been up all night with Trenton, or he is having an exceptionally bad day with his sensories and he can't tolerate the people, noise, etc. Thus, she has to scoop him up screaming and leave early.
One day after this happening I cried all the way home and said to my husband, "Why would God give a child to someone that keeps them from worshiping Him, the Creator?
and this thought.........I want and have prayed many times that all my children and grandchildren will "walk in faith" and how can Trenton do this and know God if  he can't even speak, or understand this world he lives in; let alone a Higher being, that there is a Heaven to be gained. I do know grandchild's life and purpose on this earth is NO less than that of any other childs.  He will be whole one day and walk and talk with Jesus and he can run all over that place and No one...No one will be tugging on his arm to stay with them. He will be FREE at last!  
Until that time, we must pray for wisdom and understanding on how to best meet Trenton's ever demanding needs. He is a precious gift from God and I love him unconditionally!!! 

I have never considered myself to be a jealous person.  I have always felt we should be content with what we have...bloom where we are get my drift.  I have to admit that I AM A JEALOUS person anymore.  I want what I see others having....Normal grandchildren they can enjoy being with. I envy their trips, vacations, and  yes, even taking them to McDonalds!!!! I see children Trenton's age everywhere and they are playing T-ball, registering for Kindergarten, talking to their "Nana".  Recently, I saw a friend and she grabbed me by the arm and tugged me in the direction of her granddaughter to "show her off"!  and yes, I was jealous of her!!  Before we left  her granddaughter (who is a darling, cutie patootie by the way)  said, "Bye, Grandma..I love you!"  Oh my gosh!  I almost lost it!!!!  I would move heaven and earth to hear this from Trenton, spontaneously!!  Will I ever?  I don't know. But I have HOPE!!!  I am working on the jealousy issue. Perhaps it isn't real jealousy. I would like to think it is just reminders of what I am and will miss in the future with my precious grandchild.

This was the scene in my living room last Saturday night. Angie and the boys had stayed with us over the weekend for the Walk for Autism in our hometown.  Trenton was having an exceptionally bad day. It was about eight o'clock that evening and he was beyond tired, but his body was simply not letting him "settle down" for sleep.  This becomes frustrating for him and when he has had enough he gets very upset and begins to meltdown....Jim, myself, Angie and Andrew were all in the room. Right in the middle of his extreme "meltdown", he stopped for a few seconds, and said..."sorry..sorry".. (plain as anyone could say it) and then proceeded to scream, hit himself,and cry!!  He FINALLY went to sleep about 30 minutes later.  It was hellish to witness!  He is getting old enough to understand more things. He knows his behavior is unacceptable, but he can not  help it!!!  I know this may be hard for the reader to understand if you haven't read the many books, or articles on autism that my daughter and I have.  This writer is simply not good enough to bring across to the reader the pain and anguish this brings!  It is nothing short of torture!  I told Trenton Sunday morning that I wish Nana was the one that was living in his body, but then, if that were the case, he wouldn't even be here!!!! 

I don't know what the future holds for Trenton, or any of my grandchildren for that matter. No one does but God! If you have healthy, normal grandchildren, please hold them tight, thank God for them, and keep our family in your prayers!  I don't see Trenton with my eyes..I see him with my heart and my love for him is as much as anyone could have for theirs.  I once expressed to a good friend that I just couldn't get people to understand what "autism" was like. I said, "no one gets it!".  I will never forget his reply, "Aleta, would you want them to?"  The answer is NO..absolutely not!!!  I would never wish autism and the grief it brings to families on anyone!!!!  (this individual, by the way, also has an autistic son)  There are a lot of things in this life that one has to experience themselves to understand. Autism is one of them.

Nana and Trenton when he was one day old.

Nana and Trenton now

 Nana and Andrew when he was one day old.
 Nana and Andrew now

    1 comment:

    1. Oh my goodness. What a beautiful, heartfelt, well articulated article. One of the things that I have learned most from Angies blog is that the layers of hurt run far beyond just the parents. The path of destruction that autism leaves doesn't stop at Tim and Angies door. Nearly every time I have talked to Aleta since the diagnosis she has cried. Once after Trenton had been diagnosed about a year, I stopped at Norma Bonhams house to drop something off, (Aletas Mom), and she opened the door and just put her head in her hands and began sobbing. What a helpless feeling for everyone. One thing I know for sure. However Trenton and Andrew turn out, they will be the best they can possibly be. They were so lucky to be born into the family they did.