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Tuesday, June 30, 2015

My Only Hope is to Outlive Him

Yesterday I had another blog flooding my mind.
I often go on rolls like this when it comes to blogging, thoughts flood me and I write feverishly for a few days or a week and then its gone and my mind rests.

I had woke with a thought that only parents of special needs kids can understand, the pain and desire of wanting to outlive our kids. 

I'm not sure why it ran through my head, I remember thinking "only my friends, who also have a special needs child, would understand." Then as I waited for Teale's day camp bus to return, my friend said it. She and I were talking about our kids and who they have in their lives. I shared the fact that Gwenn was truly wanted, but Gwenn was also a tactical move in our life. The thought of Beau being alone with Teale after we were gone seemed unfair. Beau would need a sibling, someone else who understood and could help with Teale's care. I also wanted Beau to have a typical sibling to have a relationship with. I know Gwenn is aware of this, she was a risk, both my births were rough and I also needed her. I remember the moment I said it to Mark, "I feel like I will always regret not having a third." Mark being Mark, was slow to respond, but thoughtful, "I don't want you always living with regret." Gwenn has been both a blessing and one of my biggest challenges in life with Teale. Their relationship is practically nonexistent right now. There is hope it will improve with maturity, but Teale is just awful to Gwenn.

So as my friend and I waited for the bus, we chatted about our unique families and the challenges we face. She talked about how out of sorts her son is on "down times from school." I told her how Mark has said for years, he would rather work seven days a week, if it meant Teale was in school seven days a week, because weekends can be just that tough. We talked about how most people live for vacations and weekends and we live for school/work days. Then in our conversation about who will be there for our kids as we age, she said it ~ "My only hope is to outlive him." I wasn't shocked and told her I think the same, but this could "only" be said by parents like us, to each other. My typical friend parents are probably cringing right now, in shock we actually discuss such things. I said ~ "Yup, I don't trust the world with Teale after I'm gone."

I bet if you are a parent of a typical kids, you have never had such a thought. Sadly we both truly believe it is rational. This is one of the "things" that haunts us. We live with the fear of what if and what if "not." 

Monday, June 29, 2015

You Just Never Know

I sat in church yesterday thinking about the name of my blog "We are God's entertainment" came from my son. I actually explain how it came to be in my very first blog post. Deciding to write was cathartic, getting things out helps me to process and let go. If you are FB friends with me, I do the same there, in a "faster, less wordy way." Sharing has been my way to bring people into our life of special needs. It is a way to give a taste of a household, you may have never known otherwise.
When I sat in church yesterday, after many weeks of not going, I thought much about our journey. The preacher, Glenda, was a guest, a member of our church and a dear friend of mine. She was my very first connection to another Mother of a child with special needs. Her daughter, Katherine was a regular when Mark and I first started attending church. Glenda had asked me to come to the service yesterday, because of our connection and because of my last blog post. Glenda isn't one to mince words either, it's a heartbreaking journey being a family member of a child who is constantly challenged in life. Glenda lost Katherine a few years ago and the pain from that loss is always just below the surface.  Her sermon clearly stated this, she talked about how miracles in the Bible give her pause and enrage her. "If we believe enough, our prayers will be answered." Glenda knows I struggle with this too, we've discussed it in depth much.
There is plenty of guilt being the Mom of a daughter with severe disabilities. I will always wonder if it was me, something I did wrong, something I could have done? My husband, Mark, has tried to quiet these fears for well over sixteen years, but they are never far from my thoughts. Then you add in stories of great faith and healings and I wonder, is my faith not great enough? Glenda spoke from her heart yesterday to a small crowd at church, on a rainy, cold Sunday. I understood her words, I totally got what she felt, but did all of the small crowd that gathered? Did the family whose children grew at a normal pace and achieved success as an adult? I would like to say "yes" because Glenda and I have not been shy about sharing our stories and hopefully, that has changed some hearts?
Sitting there, in my church, I was struck by the number of people who have touched my family. We were brought to this small church, long before Teale was even a thought. Mark grew up there, with his Mom and siblings. Much of his life changed after the sudden death of his Dad, when Mark was only two years old. This church rallied around his family, I've heard many stories of love and friendship in that time of crisis. I've lived those stories too, people who I didn't even think noticed my family, have done amazing things for us in times of great turmoil.
Not all that long ago, I was moved more than I can say, by words spoken to me. It was a typical Sunday and I had been on a really good roll of making it to church most weeks. Teale always accompanied me, she mostly sat quietly by my side. The members of our church know not to "push" interactions with her. Teale is best left alone to interact with you, if she chooses to. Mark came with me, when he could, but one of his bands practiced on Sundays, so this had become Teale and my time. Passing of the Peace is the toughest time to be at church with Teale, most know not to touch her or push interactions, but not all. "New members" may not know our story and may even see it as cruel that so few people talk to this quiet teen by my side. Anyway, it was during "Passing of the Peace," that the words were said to me. A woman I had probably always assumed was annoyed by my being there with Teale. You see, Teale is like a ticking bomb in church and there have been MANY EXPLOSIONS over the years. I'm sure there are people who would (and did hope) rather we just not bring her. I know when she was younger, it was a constant battle over heart and mind for Mark and I. He was easily embarrassed by her behaviors in church, I had more of a God made her too attitude, most of the time. 
So on that Sunday, a women I've known since the very first day Mark and I walked into his family church, as a young married couple, stopped me during the passing of the peace. She told me how much she admired me and that she had wished she had told another member, who had died of a heart attack much before her time, the same. In that brief encounter, her words were sincere and kind, as she shared with me how much she thought of my family and felt a pull to tell us. It wasn't a long speech, but it lifted my spirit and I think about it much. Honestly, I hope I do not offend her, if she reads this, but she truly was one of the last people I would have expected to hear that from. People put off different vibes around Teale, "uncomfortable" is a vibe I feel much. They don't know how to interact and so they ignore or look through her. I think Teale makes people see something they wish did not exist. It's painful and forces them to either act or run, many run. We've had family members tell us that they "just can't think about the amount of pain Mark and I live on a daily bases." So to have someone who I just "never thought" reach out to me and share her sincere care, well as I said, it has barely left my mind.
"We are God's entertainment," and I hope someday I will understand this journey better, but for now, my sincere thanks to the people who touch us along the way.

Saturday, June 27, 2015

The Child I Dreamt Of

There are many things about being a "special needs family," that suck. Yah, I know, my Mom never liked the word "suck" & for the most part it's not allowed in our home. I'm sure there are way more eloquent words I could choose, but the truth is, a lot "sucks" about being the parent of a child with severe disabilities. Even though I usually try to look at the bright side, often I find myself defending my family. Typical families like to compare our lives, maybe somehow they think I don't see the comparisons fairly?

First of all, did you know Mark and I did not want to be living this life? We had aspirations of normalcy & expectations of greatness as parents! Mark & I didn't decide to have a child that demands society notices us, we would have preferred to be a "typical, boring American family," that blends in. We were not looking for more attention and to feel more special ourselves by having Teale. Teale happened to us and honestly, I would not wish the stress that accompanies raising Teale on my worst enemy.

I did decide to be "out there," though. I decided to honestly share the journey, in hopes it helps or touches others. I came to the realization early in Teale's life, that I could either wither up alone or I could take what life gave me & use the opportunity to make all the suffering somehow worth it. The attention our family gets, well, I would love for it to go away, but using that attention at least gives us some purpose.

When I share a story of Teale in a meltdown & a typical parent tries to compare it to their toddler or child, it enrages me inside. I may not react or share that such a comparison has no value, but for me it shows a lack of true understanding. After all I raised two typical kids, along with the countless other children through my childcare and Nanny career that has spanned over thirty years. Toddler's are not 235 pounds and 4 inches taller than me. Most of the typical kids I dealt with in meltdowns could be scooped up, Teale can not be. Mark and I have been dealing with these challenges for over 16 years, the game changes, but the fears are often the same. We don't know Teale's future, we don't know if she will be stable or if her moods will challenge us into old age. Yes, this too is true of typical kids, no one knows the future.

I'm sorry to sound so dramatic, but I'm worn. The care of a special needs child is different. I can say this with one hundred percent certainty, because I also have typical children. It shows a huge lack of understanding & compassion when a person tries to tell me "how their typical" child is the same. Sure, Teale does plenty of typical things and when she does, we acknowledge them and often, those behaviors give us pause; she rolls her eyes at us, she loves her Daddy far more than she loves me, she can be fiercely independent and extremely stubborn, she's "girly" like a teen, she loves shopping, sitting around watching YouTube and hating her little sister, Gwenn. Just to name a few "typical developments" of Teale.

One of the biggest differences between Teale and a typical child of 16 years old is that Teale has NO FILTER when raging! Most typical kids, even as young as 2, know that hurting their parent is wrong. When they are mad, they may do some horribly violent things, like hit, kick, bite & throw things, but they do not do it with the same force as our daughter. I am literally scared I may be hurt by her when she is raging. I often fear for my eyes being damaged & my bones being broken. Yes, a rage in public with any child is embarrassing, I have lived that also, but a rage in public or in private with Teale is a whole different level of scary. When your toddler rages do you consider whether you need police back up or if CPS will be called on you? We've been in situations where the police were called on us because people thought we were hurting Teale, when all we were trying to do was keep her and others safe.

So not to belabor the point, Teale's life is different, as are all families who live with a special needs person. As Mark said last week in a doctor appointment, we know that there are many people who have it way worse than us, but we also know how difficult the life we live is....

So in conclusion, please don't tiptoe around me, I want you in my life. But also, try to consider how much you don't know, we go through, day in and day out, as your children grow and mature and move on in their lives.... We are often struggling with some grief because the child we dreamt of, is gone...

Saturday, June 20, 2015

The Toast at our 25th Anniversary, Renewal of Vows.

My girlfriend wrote this toast for our 25th Anniversary party. I've bugged her for months to get a hard copy and just last week she finally gave it to me in a belated Birthday card... I want it here, so I can share it and keep it forever. Thank you BB, I love you much!!!! 

Happy Father's Day

To My Husband, Mark, the Father who makes me proud to be his partner!


May You Always Know, We Noticed...

We noticed your love, unending and true.

We noticed your sacrifices, so we can have & do the things we need or just want.

We noticed your strength, fair and supportive, holding us up, always.

We noticed your devotion, to your God, those & what you care about and of course, your music.

We noticed your morals, that they are unwavering and always faithful to what you believe.

We noticed your giving spirit, to anyone, you are present with them and you are kind.

We noticed how fairly you treat others, teaching compassion in everyday living.

We noticed your work ethic, working hard is not just a motto, it is a part of you.

We noticed how you observe with love and loyalty so sincere, often just taking in a moment, without words.

We noticed how unashamed you are of showing real emotion, when pain strikes your heart, you share openly.

We noticed your love, unending and true.

We may not always say it, but we notice you.

Friday, June 19, 2015

The Good, The Bad & The Ugly

I'm not going to deny, this week has been hard to process. I'm struggling with what we are dealing with and what to share. I'm usually blatantly honest, but there are times, even I don't know what to say. The truth is, I needed the last few days to be lifted by prayer and to understand it all a little more.  On Monday we were told that Teale's kidneys are beginning to fail. The medication that helps to stabilize her moods, Lithium, is damaging her kidneys. I was alone with Teale at the appointment that this information was presented to me. Mark is in a "new" job and we are being conservative about him using "vacation" days. It is a tough time to be frugal about days or even just hours off, because we are in crisis and we need both of our heads in this game. Lithium has stabilized Teale since her very first "manic" break, in first grade. It hasn't been perfect, hell, it hasn't even been good some of the time, but it is all we know. It has been what has helped her to stay fairly even and what we understand, thoroughly. We know the side effects, we know the symptoms, we know the reactions and we know the levels.
Many years ago I spoke with a doctor who, I believe told me, he was the first subscriber of Lithium in this country. He gave me some candid advice, "It is toxic, get her off of it." He advised me that marijuana would be a much safer drug. Of course in NY that is not an option. We are getting there, but it is not even close to being a drug I can count on for Teale, yet.
His words stung, "toxic" has gone through my head much. I put my daughter on poison. But you would have to understand what she was living, what my other children were living and what Mark and I were living. We were desperate and we wanted relief. We wanted "normal"& we wanted happiness, for all of us.
Lithium was discussed and with the promise and hope of a more stable child, we jumped. Ten years later, I can not regret the move completely. Teale has had much joy in her life because we were able to get her more stable, but it has run it's coarse and now we must move on...

Monday, June 15, 2015

Prayer Request

When my heart is heavy, writing helps. Sometimes I can express my feelings in writing better than in speaking. Sometimes getting the thoughts down helps me to process the pain, worry or confusion that I am experiencing. Other times I feel like God talks to me through writing, the words spill out faster than my thoughts and soon the story is written, but I can barely remember what is on the computer in front of me. My pain is intense today, I'm sitting on much uncertainty, which makes it tough to share. I need answers, I need clarification, I need to process all the information that was thrown at me and I need to cry, more...
Our Teale has had so many challenges in her life. She has fought and won, again and again, both medical and educational battles. She has been my daughter, but she has also been my life. My soul has been changed because of her. Not one other person in my life has taught me more. Mark is a close second, but he doesn't challenge me like Teale does. Teale teaches me to believe in the unknown. She teaches me to love, even in moments when you would think that were impossible. Teale has taught me to research and question authority. Being her advocate makes me look at every angle before making a decision.

So as I try to process and gather more information, I will also try to wrap my head around what our next step is. I like plans, I like directions with purpose and I like to be in charge of my destiny.

I know we will figure this out, Mark and I are a good team and have worked through many times of crisis. We will move forward! I know I will share more when I feel more confident in what I know, but for now; Please pray for our daughter, she needs all the help she can get.