I planned on posting about my last trip to NY and the World's Longest Yard Sale. Instead, I want to share a letter my friend, Sandy, wrote about her daughter, Stacey. Written in honor of Stacey's birthday, it brought me to tears. I met and grew to love Sandy and Stacey while I helped teach Sunday School for a special needs class. No one can fill a room like Stacey! With her hugs, her smile and her booming laugh, you could never miss her. After reading this, I wish I had met them sooner. I'd like to think I would have been the one who was there for her, but would I really? Who is out there now that I could be helping, loving on and praying for but am not? I was also moved by Sandy's frank recollection of the pain and anguish, her transparency about her fears and guilt. Most of all, that she can write all of that, a fraction of all their family endured and still assure us that no matter what, a mother's love overcomes all. Her faith and trust in the Lord makes mine seem small. Just tell me if you can read this without crying.
I can't believe it has been 24 years since Stacey was brought into my life, happy birthday sweet girl!! When I look back over my life, I can't think of anything that has impacted my life or my family's life more than Stacey, or maybe I should say her disability. I have been brought to the highest highs and the lowest lows, done things I never dreamed I would, and fought until I got my way. When a family is thrown into the world of disability, the world you once knew is no longer, and you are forever changed. I have to admit, I didn't always embrace the change. There were times I went kicking and screaming, and pleading God to fix it. His fixes have always been different than my fixes!! Sometimes harder, longer, and more challenging than I ever wanted, but I had to learn to trust Him. That is not an easy command for me to follow!!
Our journey began when she was an infant, a mother's instinct knew something was wrong. I would tell Bear, "She's just too good". He would say she's just a good baby, enjoy her. My nightmare came true when she had her first seizure at 6 weeks old. We were suddenly thrown into a new world of Dr.'s, vocabulary, medicines, could be's, all while in a state of shock. Fortunately it only took them about 3 weeks to get them under control, and we have never had to deal with seizures since. But that was just a sign that there were other issues underneath. There was also an incredible group of people praying for us, who was by our side through our whole ordeal in Ohio.
The next hurdle was her motility issue. At a year old she started projectile vomiting, and this went on for a year. Another set of Drs., more vocabulary, experimental medicines, lots of hospital stays, flights to Boston, Toronto, very sick little girl. She was in physical therapy already because she was delayed, but they didn't know if she was delayed because she was sick or if there were other issues at this point. It is still a waiting game. Bear would wake her up in the middle of the night and feed her a high calorie yogurt, and if we could get her right back to sleep, she would keep it down. She so needed the calories. All I could do was cry, exhaustion had set in for me, all the laundry, the constant cleaning because she threw up EVERYWHERE she went!! But amidst it all, Stacey was full of joy. ALWAYS smiling, laughing, just going with the flow. We tried to appreciate it, but we were so tired! Finally, the Dr. said it was time to tube her and get some nutrition in her, I will give you one week to put weight on her. That week, a man that Bear worked with felt a heavy need to pray for Stacey for a healing, and when we went back to the Dr. the next week, she had gained a pound, and she never vomited with that issue again. The Dr. said, "This just doesn't happen", but we knew who the real physician was, and Stacey had been healed. There was, and still isn't any other explanation for what we experienced. To God be the glory!
Stacey began crawling at 18 months, and didn't walk till she was 3. Week after week of physical therapy, therapy at home, everything had a purpose. When you have a child with a disability, there is always a reason for doing something, it felt like her life and our life was controlled by therapies and appts. All this was happening before the age of the internet, so you are desperately researching books, trying to find something that could explain her delays. By age 3 we knew we were probably looking at a life long disability, but to what degree we didn't know. We started putting her on a school bus at age 3 for ECI, and man was that hard. We found information about Angelman's syndrome, and it hit Stacey on the head, we were sure we had found the answer. Finally saw a geneticist, and there are no answers. No Angelman's, no genetic disorder, nothing that they can tell us has caused her delay. So we went on.
The real problems for us began when the behaviors set in. Stacey didn't start talking until she was about 8 - 10 I guess, and while we used sign and pictures, she was still very frustrated. Families that have children with severe behavior disabilities live in a different world from ANYONE else. It's called isolation and loneliness, fear and depression. These were the low points of my life and of my family's life. One child and her behavior dominated our existence, and we knew it, but couldn't stop it. These were the years when I just barely existed and I think my other girls did, too. Days when we would have to pin her to the ground to calm her down, days when she broke windows, hit, bit, scratched, pulled hair, you name it, she did it! Stacey could make us laugh and tear us down faster than anything, all in the same breath. We had behaviorists in the home training us, this is what you should be doing, yadda, yadda, yadda. All while taking care of 2 other children who desperately needed their mother, and while you have many other things on your to do list. I do believe in behaviorists, don't get me wrong, but some of them aren't in the real world. By now we had put all plexi glass windows in her room and put the lock on our side so we could get some reprieve. You can't understand what it feels like to not want to wake up to see your child in the morning because you know the first thing she is going to do is spit in your face when you open her door. You are hoping spit is the only thing you get, many mornings there were many body fluids spread throughout the room. I was in a mode of survival, and my thread was very thin.
As hard as it was dealing with the pain of Stacey's disability, the impact it was having on her sisters' was just as, if not more, painful. Her older sister was the one who never caused problems because she saw how tired and stressed out mom and dad were. Little sister was scared of Stacey, as we all were at times, and she wasn't getting the much needed attention she so desperately needed. My heart was breaking in so many pieces, I couldn't pick myself up, let alone anyone else. I could see how much they loved their sister, but I could also see their frustration, fear, and embarrassment. When there was a school event, we tried to take turns going, because we often couldn't take Stacey. It was a big thing to go to Wal-mart, we had to take turns, because there were very few times we could take Stacey to a store, especially if she was having a bad day. I NEVER took her to a Payless, still don't, she can clear a shoe aisle faster than a speeding bullet!!!! I still laugh about that! We did take her to Brittany's basketball games, and I have to say, she was her biggest fan, but boy when the game was over, there was always a big battle, and it took both of us to get her to the car!!
There were many funny times too, maybe not funny at the time, but now I can laugh!! She threw a can of red paint in the dryer and I didn't know it until I opened the dryer and all the whites were pink!! Or the time I couldn't get her in the house, so I left her in the garage, and she opened another can of paint, and painted the garage floor with her hands! She has rearranged many stores before I could get her out the door!! She screamed in a library one time and the librarian threw a book in the air, that was really funny! Ya just got to love her!
But the hardest time hadn't even come yet, our lives were about to be changed forever. When you have a child with intellectual disabilities and severe behavior issues, summer is hell, there are no other words, and I'm not going to beat around the bush, it's pure hell!! No one comes to your door and offers to help, no one invites you over for coffee or for a play date, you just try to survive. I LOVED the school bus, it gave me a few hours of reprieve, but not so much in the summertime! So I hoped my other two girls would get away and get invites to play while I stayed with Stacey. That's just the reality of my life. Bear saw my exhaustion and knew I couldn't keep it up, she was as big as I was, and when she was mad there wasn't much I could do to control her, we had to do something. We were in a vicious cycle and we couldn't break the cycle, and Stacey knew it. Children with intellectual disabilities are not stupid, they are master manipulators and find a way to get what they want. A dear couple at our church counseled us and told Bear that he had to make the decision, that a mother's heart couldn't do it, and they were so right. It was our decision together, but Bear started looking for placements for Stacey in group homes. I thought I had known heartache, but this was beyond any pain I had ever known. How could I let someone else take care of my 16 yr. old daughter who can't tell me if they are abusing her or what is happening in her life? I was just in motion, that's about it. I was so angry at God, myself, the whole situation, why did this have to happen to us? It was so painful. The breaking point came when I was driving with Stacey and Katie and Stacey started attacking me while I was driving. Katie doesn't remember this, but I do, and Katie jumped out of her seat, and her little bitty self started hitting Stacey and screaming, "Stop hitting my mom!" I knew it was time. Again, we were girded in prayer from some incredible prayerful Christians who guided us and lifted us up when we couldn't even hold ourselves up. I vividly remember loading her up in the car and driving her to Longview, knowing she had no idea that the only world she has ever known is going to change, and wondering how do I explain this to her, and how is she going to deal with it? The house was 2 hours away, way too far, and pulling up to that house felt like I was pulling up to a cliff to jump off. I wanted to desperately take her and run the other way, but I knew I had to do this for her and for us. Getting back in the car and driving home without her was the hardest thing I have ever done in my life, and it's still hard for me now, 6 years later! There was a lot of silence in that car, I don't think any of us knew what to do or think, I was almost emotionless. We had to wait 6 weeks to see her so she could get adjusted to her new life.
Our new life had begun, but we didn't know what to do with it. Sleep in? What's that? This easy, care free life was foreign to us. We went to a recreation facility as a family and played racquetball, but I just couldn't hit the ball hard enough to let all my anger out. It was just too much, guilt was eating me away. Is she alright, do they know what she needs, is she getting the right meds, is she getting enough to eat? We could watch a movie together, that's something different. Stacey liked Wizard of Oz, we have seen that a few hundred times, let's try something different. We had to look at each other in a new light and get to know each other again without Stacey as the center. After our 6 weeks was up, we went to get Stacey to bring her home for the weekend. I knew we had done the right thing when I watched her walk to the refrigerator, get out a pitcher, get a glass from the cupboard, and Brittany helped her pour a glass of juice. In 16 yrs., I had never been able to get her do do those things for me. It was as if God said, "I love her more than you do Sandy, I will always watch over her", and He has.
She has moved from Longview to Grand Prairie, and now she is just 10 mins. down the road from us. The reason I wrote this is to tell you how much joy this young woman brings to my life now. We went through years of living hell, tears and turmoil, but now, because of the decisions we made, that were the best for Stacey and for us, she is a remarkable young woman. She has huge limitations, but there is no one that can light up my world like my Stacey. Nothing compares to a smile or hug that only Stacey can give. I can simply be me around Stacey, I don't have to pretend to be anyone else, she doesn't care if I have money, a nice car, a nice house, she just wants ME!! Stacey can smile at the drop of a hat, and it will light up your world. Her joy for the simple things in life makes you stop and appreciate the every day ordinary things. Her whole material world revolves around a closet and a dresser and she doesn't give a hoot! She doesn't care that she doesn't have a coach purse, designer clothes, or a Cadillac, she's just happy to be with me, or whoever she's with at that moment. She has come a remarkably long way, and I couldn't be prouder of the young woman she has become. Stacey makes the world a better place just because she is in it. She has not only shaped my career, but she has shaped her sister Brittany's career who works with kids with behavior challenges. There is nothing that warms my heart more than watching my 3 girls together as 3 beautiful young adult women who truly love and adore each other. Watching a little girl who was scared to death and angry with her sister become a friend and letting her sister adore her baby is everything a mother hopes for. (By the way, they call Stacey the loud aunt!) Stacey laughs like no one else, and it is a genuine, whole hearted, I love you laugh that envelopes every part of her soul. She will laugh with you, at you, and never stop!! Her joy is contagious, all consuming, it takes me to a different place when I am with her. When you ask her what she wants for her birthday, she says, "cake, ice cream, balloons", she doesn't care about the presents. She wants people who love her, that's all, she just wants friends around. Ask her what she wants for Christmas "Two front teeth"! No kidding!! That's what I love about Stacey!!
One thing I try to do when a pregnant woman says to me is "I just want to have a healthy baby", I tell her, "But if you don't, you are going to be o.k. too, and you will love that baby." "Will there be heartache? Yes, and mourning, but love will follow."
HAPPY BIRTHDAY MY SWEET, SWEET GIRL!!! I LOVE YOU!!
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