Extended Family

Like all families, mine is complicated. Divorced parents with my father now deceased. Skeletons in closets that keep some of us apart for better or worse. But sometimes, inspiration strikes and slowly light enters that dark space that builds up between people and reconciliation begins.

My father died in June 2007 - after my birthday and after Father's day. I didn't know how sick he was and maybe if I had, I would have put my pride aside and seen him. If he knew how sick he was or had let his pride go, perhaps he would have asked to see me. But we didn't and that time is past. I hope there is an afterlife. I choose to belief it because I feel lost otherwise. I do however cherish the family I have left even more. This is a big part of the reason that my mother and I brought my brother home even knowing we had to sacrifice because how would we feel and how could we live with ourselves if we didn't try.

Months passed after that horrid June and slowly the truths began to come out about what really happened and the sunshine helped mend the wounds all of us that loved my Dad were feeling. Those of us who were too proud began to open up and say "we were all wrong in one way or another" and we should talk about it someday, when we're ready.

Time doesn't so much heal as dull some of the pain and remind you of what you have left. Finally, after two years, I went to see my Aunt, my dad's sister and her family. It helped that my cousin who is my age stayed in touch with me and gave me the courage. I can be very skittish some days.

Unabashedly I say that I had a wonderful time. My brother was on his best behavior - which leads me to think how tied in to all of us he really is emotionally even when we can't see or understand it. Or maybe the divine intervened and calmed his restless soul. My sister had a lovely time as well. I saw cousins I hadn't seen in a long time and children of cousins. I hugged my aunt, my uncle, my cousins, my cousin's fiance. It felt good. It felt like peace had finally found me.

The future is always uncertain. We're having a small bbq soon and another family member has come home to recuperate. We're a very large extended family and we have all made so many mistakes because, well, that's what you do when you're young and struggling.

I sit here on a Saturday morning listening to the snores of my brother (pancakes for breakfast plus his medications have him in a deep sleep - I'm just hoping the milk of magnesia keeps his tummy settled until he wakes up - I don't want any accidents on the sofa!) My sister is playing with papers and waiting for me to put on the tv.

Sharing a room

When we were young, we shared a room - either Angie and I, or John and Angie, depending. In the winter, when it was cold upstairs, we'd share a bed. (not always fun when one of the three kiddos drank too much before bedtime! I wish I was kidding!)

But I haven't shared a bedroom, except with a bf and a husband in a long time. Now that John is home, Angie and I are in the same room again. Which is slightly tricky because she's devious! She's always looking at what I have on bookshelves or hung on the wall or on top of my dresser and out of nowhere, she'll sometimes grab something and play with it. Yesterday it was a blue lanyard from when I took classes at the local tech school. I have a couple signed pictures on my wall at home and some Doctor Who toys. Plus my history books and some random knick knacks.

Part of the joy of having her in my room is that at any moment, I might be redecorating!

One of the other challenges is that we go to bed at different times. If I go to bed and decide to watch Torchwood or Doctor Who or Pitch Black, then that can wake her up. She also insists on the door being closed.

I have a Queen bed and she has a twin. They were at a 90 degree angle to each other but I switched them so they were end to end with a gap of about 3-4 feet. This morning at 4:00am when I was talking to myself (yes I do this, it helps me process my thoughts), I felt a hand on my foot. Thankfully I remembered Angie was there or I think I might have had a flashback to a wet bed! I ask her sometimes what she wants, to see if she'll respond. Her usual response is a shrug or a turn to the left which means "No" and everything else means "Yes" and then she'll do what she wants to do. Well this time, apparently it was code for "I'm going to get into bed with you since obviously we're both awake". What followed was about 30 minutes of her giggling,playing with my hair and her laying her arm across my shoulder to get me to tickle her. I finally got her to go to sleep and then we got up a few hours later.

Such goofiness!

Random comments - Fathers day 2009

I'm not fond of this day. I never used to be but its worse since its after my birthday and after the anniversary of my dad's death. However, I do wish a very special Happy Father's day to my godfather Ross who intervened on my behalf so I could go to my Dad's funeral.

I'm sitting in our living room right now watching country music videos. Angie and John like the music and the action. When football season rolls around, John will watch that. For some reason the action on the screen really attracts him.

My sister is outside on one of the two swings. One is traditional 'swingset' but reinforced for her adult weight (and mine to be honest, I like to swing too!) and the other is on the deck and is just a two person seat. She's on that one. Not quite the same height to reach but closer so I can check on her more often.

That, along with someone elses comments on UpsNDowns, reminded me of how Angie used to wander when she was young. We live in the country so its not quite the same plus it was 20 years ago. But she would walk to the neighbors. It happened so often that we had to get a chain link fence in the backyard. Part of what made raising Angie and John so challenging was the fact that we were also trying to make a living on a dairy farm - Neither tasks are easy but when you add them together, it gets a little crazy. I remember Angie learning the route to walk around the barn with a binder twine in her hand and she would just do loops while we were milking.

John was not quite as active. He's had hip surgery to help 'straighten' his legs and add his mobility. But he was mobile enough to get into the refrigerator while we were in the barn. We finally got a strap to 'lock' the refrigerator. We'd be milking cows and every fifteen minutes running to the house to check on John. Sometimes dad would be home but usually it was mom and I in the barn, angie either in the barn with us or in the house, and john always in the house.

I suppose I don't always think about the constant stress we were all under to meet all these obligations. Baths and eating for ourselves, homework for me, teaching angie and john, bathroom breaks plus raising animals, keeping them healthy, milking and then social obligations.

That is one of the reasons this chance we all have to live again with each other is such a gift. Its a cosmic 'do-over'. Time for us to focus on our relationships with each other, time for our own self-improvement and time to just be together.

Dad

In a few days it will be father's day. As I stated before, my father died two years ago.

Its hard to sum someone up, alive or dead, in a way that gives them credit for what they did well but doesn't absolve them of their mistakes. We all make mistakes - that is a given.

So let me say this - I feel sorry that my dad wasn't able to participate fully in our family because of his physical and emotional issues. He was able to 'corral' John when the 'little boy' of the family got rambunctious. He loved us all even if it was hard for him to show it.

But he was gone a lot. I wish he could have been there more. I wish he would have helped change diapers and tried to learn sign language. I wish he would have taken us all somewhere for the day so mom could have time to herself.

We did have some spontaneous trips - to parks, to 7 island and other places up north. I remember us all being in the water by Uncle Albert's cabin and Mom, Dad and I being so proud of Angie and John swimming like the fishes they are.

He's gone now and I miss him. Angie and John don't really comprehend that he is gone. They just know when I'm sad. One of the joys of living with Mom is that we're a family again. Its kind of odd since its 18 years later but sometimes you do get a chance to 'do things differently' as a family unit - maybe we can do it better this time?

Like music therapy. Oh I cannot say enough about that. I wish I'd known more about this when I was younger. Mom too of course. Sometimes you spend so much time trying to get through one crisis after another that you miss the little things you could have had fun doing - like putting together a mix cd and watching the kids reactions and picking out the ones they love the most.

You can only live once and losing our dad really drove that point home. Being with mom again is another chance to enjoy the family and the gifts you get from Adults with Down Syndrome. And how it makes you a better person.

What about Mom?

You know how kids are - always the last to thank their mothers!

My mom is an amazing woman who has lived a challenging life. But she has always, always, always made it very clear to all of us, how much she loves us. As a parent, I believe that is the best thing she could have ever done.

We grew up on a farm and my dad wasn't as involved in the care of the kids as Mom and I were so it kind of became "us against the world" while we balanced the demands of life.

Now that I'm 35, I'm amazed at what my mother was juggling when she was my age.

My parents divorced six years ago and then my dad died two years ago. They had separated many years before that but it still hit us all very hard when he was gone.

While we don't always talk about it, one of the parts of raising handicapped children that is most ornerous is dealing with the financial side of things. They may have medicaid or medicare, state and/or federal funding and some kind of disability income. But it is never enough. They need 24/7 care. We need vacations. They need bars installed in bathrooms so they don't fall down. You spend money on rubber sheets and new bedding because of accidents. Clothes and personal items, getting pizza, going to doctor appointments (where you have to take off work) and the day in and day out of having to make breakfast for someone else, pack their lunch, wash their clothes and drive them to school or the bus stop.

My mom handles most of the financial stuff now. I did it at one point when I had Angie and its maddening. How Social Security determines what amount each person should get based on the household income and expenses is fairly illogical. We moved and our rent went up but Angie's Social Security income went down because the change in rent was seen as a 'gift of money'. Huh? Yeah I don't get it either. It took the involvement of an elected official to straighten out the payments.

Of course its all worth it. Mom and I feel like pieces that were missing are back now that both Angie and John are home. Each day (and today makes a week I think) that John wakes up dry is a little internal 'happy dance'. He went to bed without fighting again last night which I'm so thankful for. Its odd that his antibiotic would have affected him that way but apparently it did. Angie went to bed only a few minutes after John last night and she was still happy (Yay!). (We have to stagger bedtimes because Angie is 'older' and since John is so much needier, its one way we can show her that she is 'special' too.)

John - little victories

Thank god/dess that antibiotic is done. I'm not sure why it affected him that way but it was like shooting him up with meth/speed.

He didn't want to go to bed, he fought us, pulled mom's hair, pinched me and we turned into guard dogs on that door when he'd try and open it. Sheesh!

However, two days after he was done with the antibiotic, peaceful dreams. I took him to the bathroom then to bed when he started to doze around 7:30pm. I praised him for being good, for laying down, for pulling the blanket up to his chin by himself. Then about ten minutes later, I opened his door and when he was still in bed I said "good Johnnie!" and he smiled. Half an hour later he was asleep.

Angie even went to bed last night without a toss of the hands (when you ask her to do something she doesn't want to do, she'll stiffen her arms and throw them out to the side - almost the opposite of the caricature of the 'typical housewife - i give up' visual). Instead, she put her sunglasses on the cupboard and giggled down the hall into our bedroom.

She has a weird routine at night sometimes. She'll go lay in bed, then she'll go to the bathroom and then for some unknown reason, she'll use her hands to drink water out of the tap. We'll put a glass in the bathroom but she won't use it. Angie very very rarely has accidents at night - like once a year.

John has been having more and more dry days. To deal with the issue, we'd been using a Depends on him at night plus 'chucks' under him. But he's been really good and we're switching back to underwear again. Every little victory is still a victory. Its still priceless to see their smiles even when they are annoyed at us.

John

John is the baby, the one with the most medical challenges and the one who is developmentally the most delayed. All of these contribute to him having very frustrating behaviors. He can pinch, yell and simply sit down and refuse to move. Its hard to love him when he just left a bruise on your arm. Not because you don't love him but because its so hard to understand why he seems to want to hurt you.

The most joyous part of starting this blog now is because its an ongoing documentation of how we are evolving and adapting to John and how he is progressing from being at home with the ones who love him most.

Angie has gone through tremendous changes as she's been home with us in the last five years. She started from a very different place than John but she had behaviors that had sparked a new medication (which sparked my belief that it was time for her to be taken out of the group home.)

John was in the hospital in April and that bout left him with permanent lung damage. Because my mother lost her trust in the group home system for John (just as I had lost it for Angie), she brought John home. That prompted me to move home to help.

Its hard because while Angie can do many things on her own, John cannot. He eats too fast so we have to feed him or watch him carefully or he'll choke. He is very routine oriented and even if he is sleeping, it seems he'll wake up at mealtimes. He has continence issues especially at night.

But these issues are slowly changing. Each night that he is dry its a celebration in our house. Every smile that lights his face gives us a little thrill. I love that feeling. It really makes it worthwhile and encourages us to keep going even when you're so frustrated you want to cry.

Right now we're dealing with his desire to not go to bed. He is tired. He eventually falls asleep but we have to keep his door closed and keep him in his room or he'll stand in the kitchen because he wants food or drink (even though he's eaten and had plenty of water.)

John does talk more than Angie. He can say Mama, Barb, milk, cake, pizza, hamburger, hot dog, cheeseburger (yes food is a major theme!) He is on a lot of medications for behaviors too and I know they encourage his hunger but he's always been obsessed with food.

That's really the whole challenge for all of us - the changes in Angie and John and Mom and I from 20 years ago when we last all lived together. Who are we? Who were we? How do we do it better this time? And how do we help John overcome behaviors that developed while he was away? Stay tuned!

Angie

My sister is the light of my world. She doesn't talk except to sort of say "Pop" or "Wow" yet she understands so much more. Like "can you get me a soda?" which to her means a can of whatever she can find in the refrigerator - Mtn Dew, Coke, Busch Light, etc..

She likes to play with hair and this frequently endears her to her female caretakers either at 'school' or where she gets on the bus. Angie the hairdresser. She developed a habit a long time ago of chewing on her fingers so her hands are calloused and we often moisturize them. She had that little habit down pat. She can get the lotion on - it won't be spread evenly or thoroughly but it will be on. She loves having her fingernails done and usually on Fridays the Day program she goes to puts on whatever color Angie chooses. Lets just say if she's not color blind, she apparently is a flamboyant gay man.

She loves me, loves my mom, loves my aunt and cousin. She tolerates our brother John and the dogs although she has been known to cuddle Betsy. She mimics me a lot and unfortunately picked up my habit of disrobing when I enter the privacy of my house. That's a habit I can't quite shake her out of. Oops!

She's always been my little sister and yet she's the middle child. She's higher functioning than John even though he speaks more words. She modifies her own sign language - she can say Milk and Cake and Dance and Please. She makes her bed better than I do and she will fix John's blanket and pillow when he gets off his couch to go to the bathroom. She's usually very gentle but occasionally, for reasons we can't always predict, she'll use her hand to smack our leg or the dog when we walk by. Sometimes we think its to get our attention; other times because she is agitated.

Angie is comparatively very 'easy' compared to John so we have to make sure we go out of our way to give her the proper amount of attention. She has a later bedtime, she can eat independently and she gets a longer bathtime. She likes to cuddle but will also let you know when she's done by getting up and moving. I'm also her favorite.

Hollie (aka me)

I'm 35 and I work in the IT industry - technical support to be precise. I've been a consultant for a long time which means I've had a job a year for the last 13 years. Sometimes I move on because of an opportunity, other times because of family needs and of course others because of differences of view between myself and my coworkers.

I like what I do. I find technology fascinating and I like helping people learn what they need to in order to do their job. I like when they ask questions, even benign obvious ones because then I can teach them the right way to do it. My favorite thing though is when someone I've helped then goes on to help someone else.

I can't help but bring my work home with me. In my spare time I play computer games and use social networking sites like facebook. I email about as often as I use my cell phone. I'm also tech support for any family members who provide the soda.

I have a terrible Cola addiction which I occasionally try to kick.

Speaking of kicking, I'm not doing a lot of that lately because I slipped and fell on the ice and hurt my ankle (well I broke it.) I tend to do that kind of thing. "Clutzy" would be putting it gently. My mom jokes that she should have named me Grace.

So that's one part of me. The other part of me is 'Hollie as older sister.'

I can't remember a time when my brother and sister didn't need me to take care of them. I'd always known that if anything happened to my parents that I would be responsible for them. I also always knew that someday they would live with me. Its weird to write but I say it out loud because I've come to realize most people don't think that way. I also had and have the dream of a family with children of my own but my brother and sister have always been a part of that.

I was married for six years, 2001-2007, and my sister came to live with me in 2004. When I divorced, I moved home and it became me, mom and Angie. My mom took over a lot of Angie's care while I was recovering from my divorce and then my dad's death. I even had a short relationship which took me to milwaukee for a few months. But home, with Angie and mom, was where I believe I was meant to be.

My brother is a recent addition because he was ill in April and it became clear there wasn't a place currently available that could take care of him that we were confident in. That's when I came back from Milwaukee and that's when we all ended up in the same house again.

I don't plan on spending my whole day, every day, being a caretaker for my siblings. But its absolutely a part of my life every day. I wake up early enough to hear my mom getting them ready and I help when she's running late or one or both is being difficult. On weekends, babysitting and lunch tend to be in my domain. The rest of the time, I'm just 'there', like the semi-traditional 'dad'. Which means I'm more of a disciplinarian than "Mama" is.

Introduction

Introduction.

I'm Hollie, the eldest sibling of three. Both my siblings, Angie and John, have Down Syndrome. We're all in our Thirties now and while we had our own separate lives in the last decade, the last few years have brought us back together. We now live together, along with our mother, in a house in the country with three dogs and a big back yard.

This is about our life.

The title of the blog comes from how I've signed cards my entire life since neither of my siblings can write. We are individuals but we are also a unit.

Hollie (and Angie & John)