Friday, September 23, 2011

NYC Buddy Walk . . . thoughts

Tomorrow is the NYC Buddy Walk, it's our second year going. Seth will be four in December and yet it's only our second year going. Why didn't we go the first two years? Why did we choose to sit out on something that directly impacts our sons life?

It's a hard question to answer. Here's the lie I probably told too many people to count - he had croup. Which is true, Seth has had croup more times than I can count and he might have had it then. But the real truth is I was scared.

You see the Buddy Walk would put me in a position to confront my biggest fears about Seth's future. Because not only would there be the cute infants and toddlers there with DS, as there are on all of the message boards I'm a part of, there would be adults with DS as well. And that's what scared me the most. Looking into their faces, talking with them, interacting and saying to myself "I don't want Seth to be like this when he grows up." Horrible for me to think but there it is. I didn't want the reality that Seth might not be as well functioning as an adult as I would like. That as a grown man his speech might be unintelligible or he may have problems understanding others cognitively.

We went last year, partially because Seth is big into Signing Times and loves Rachel Coleman and I thought it would be so damn cool for him to meet her. And it was really cool. Rachel Coleman is very sweet and fun and genuinely loves what she does and cares for the kids. I really enjoyed watching Seth watch her, he was fascinated and he loved every second of sitting for that show, in the 90 degree heat, sweating but with a huge smile on his face.

We didn't know anyone in real life last year who had a child with DS. We went solo, we went alone and we felt very much alone. All of these people were meeting up with friends and family, and there we were, just us three, walking along, not knowing what to do or where to go or what was expected. It was a little sad, but it was a road we walked together and we got through it like we always do.

The saddest moment though was when I was on line for food from this organic food cart. We were starving after the walk so we decided to purchase something to eat. Now there are many stands that you get raffle tickets for free snacks but this stand you had to pay out of pocket. There was a man with DS behind me and he asked me if this food cart took the raffle tickets and I told him that they did not. He looked confused and upset and left the line. Looking back I really wish I bought him lunch that day. I feel so bad that I just stood there, that I didn't do anything. Now I don't know if he was with someone or if he was hungry or his story at all, but I thought about Seth in about 20 or 30 years.

I thought about this the other day as well. Seth in his 30's, me in my 50's and 60's, would I still be able to take care of him if need be? Am I looking forward to taking care of him my whole adult life? What are the other options? Another thought was "will I outlive him?", what parent outlives their child? What kind of sad life would that lead to? So the fear of seeing adults with DS is very real, because this is not a short journey with Seth, it's a lifelong one, lifelong meaning that either I or he goes first back to God but I'm horribly frightened at either notion.

I also have to think that these adults didn't get the same therapies and care as our children with DS do today. There is so much more information out there, about therapy and medical problems, parents of children with DS have a lot of resources to help them. It wasn't like that fifty years ago. So I know in my heart that Seth has already gotten a better start than these adults did, and I hope that that is enough, I hope it makes him a happier adult later on in life.

Tomorrow I might be sad again, might have those twinges of moments that I wish I didn't see or fears for the future. But I do know what I absolutely will have, backup. You see this year we are not alone, this year we are going with two other wonderful families who have children with DS, this year we are bringing support. And it will be so much fun.

Seeing Rachel Coleman again is so worth it as well!!!

Saturday, September 17, 2011

The inevitable buildup of shit. . .

It's been a rough week. Really rough. I woke up Monday morning all hyped to send Seth on the bus to school, on that bus that meant I would yet again have a moment to myself to piss and eat and do other things in private and not constantly have a pair of toddler eyes and ears and hands on me at all times. Because as Moms we all crave that privacy, those little moments of "ahhhh peace at last".

But peace didn't come, not even close. I felt an overwhelming feeling of sadness, of loss, of grief and of terror. I wasn't in control. I didn't make every choice for Seth like I had in the past month. What if the school bus got into an accident? What if Seth didn't eat all day? What if they left him in his dirty diaper? What if he was crying and needed me? What if I got sick and I'm home all alone with no one to help??

What the hell was this feeling and why was I all of a sudden feeling it? What was going on? Was I going crazy? Had I finally reached a point that many of my other family members had before me? The large incidence of mental health problems in my family made me very wary and very scared.

Tuesday was even worse. Overwhelming nausea, couldn't eat or sleep, couldn't think straight-just racing thoughts and emotions and emotional outbursts. I was scared, I still am. Because on Tuesday I experienced my very first panic attack, at least the first one I could ever recall.

Panic attacks - when you are in a moment of pure terror, heart racing, hands shaking, can't move or think or speak and you are just stuck in this state. And Wednesday night I went to the emergency room because I couldn't handle it anymore, I couldn't handle feeling like this, this wasn't me, this wasn't Shanna, not at all.

The ER was nice, maybe too nice, they gave me a prescription for Xanax and sent me home, sent me home, the place I was most afraid to be because during the day I was all alone, alone with my thoughts, my feelings, my fears, my deepest darkest demons with no one there to help alleviate my pain or distract me.

Thursday I took said Xanax after waiting 20 minutes at my local pharmacy. They know me well because of all Seth's prescriptions and there I sat, feeling judged, because I had officially snapped, officially needed help, officially admitted that things weren't okay, that I wasn't Superwoman and that I was so desperately tired of trying to be so.

Xanax was bad, it was so bad. It didn't work for me, didn't do anything but make me feel worse and feel scared and really, really tired. So I slept a fitful sleep all day Thursday and prayed for when Drew's mom would come home so she could take Seth off the school bus and I could try to get some normal sleep. And I felt even worse so Thursday night I went to a different ER, perhaps one that would help more than the first did. And they did. They prescribed me an anti-nausea medicine and something called Atarax.

And so what is the point of this post?? I suppose to say that I'm human. In so many ways. And I'm so sick and tired of being strong, so sick and tired of having to deal with everything with a smile . . . so much so that my body gave me physical symptoms to tell me to chill the fuck out, to stop pretending, to let myself cry, to be not perfect and that yes it is okay to feel these things. It's okay.

My son has Down Syndrome and that's hard. Everyone this day and age has financial issues and that's hard. Relationships are hard. Dealing with family members is hard. Life is hard, it's messy, it doesn't yield sometimes. So I yielded.

And so what does this mean for me?? More time. Time for myself to just be, to just think, to do things that I enjoy doing, things that aren't cooking or cleaning or taking care of others. For four years I have spent every moment thinking of others and pushing myself to the side and I can't do it anymore, not physically nor mentally. I'm hurting. The Shanna inside of me is crying out for help and I have to listen to her, I have to support her and tell her it will all be okay. And I encourage everyone else out there who is reading this to do the same.

Because our children will be okay if we don't do therapy with them everyday or if they occasional eat fast food or take out for dinner so we can have a break from cooking. That they won't suffer if we put on a television show for them so we can read our favorite book or go on the Internet. That they still know that we love them, even when we aren't there. That maybe it's okay if they go to grandma's for the weekend and eat junk food and stay up late so we can have a date night. It's important that they have a happy and healthy mom and dad rather than one that does everything for them and gives them of a false sense of parental perfection. Parents aren't perfect and I'm not going to try to be anymore.

This is real and was really difficult to write about. One of my biggest fears is to have any problem with mental health mostly because I know so many people who deal with different issues, whether they are doing great or poorly. I don't want to be like that, I didn't want to accept that I might be.

But we all have our issues, perhaps I have more than most because "life ain't been no crystal stair" for me in the words of Langston Hughes. I've had my fair share of tacks and splinters and cracks that I've tripped up. But the thing is . . . I'm still going up . . . I've never stopped. I've never reached a landing and even looked down. And that's the problem, looking down. Because we can't forget about all of those stairs we've climbed, our legs still feel the strain of climbing them, are still weakened. If we don't stop and rest, we can never reach higher, never climb more stairs. It's time to take a seat at one of those landings and pause to wonder about all of them stairs down there.

Wednesday, September 7, 2011

September, shitty September

September is one of those months, a month that I would like to completely eradicate from the calendar, if only to forget the events that have changed my life, my family's life forever. And no this post has nothing to do with Down Syndrome and everything to do with family, my family, my family before I created my own with Drew and Seth.

Four years ago I found out Seth had Down Syndrome. A month later four years ago my brother took his own life. And he never got to meet Seth. And four years later I'm finally at a place where I'm alright enough with Seth's diagnosis and in my own life to actually feel the grief that I should have those years ago. You see things catch up to you, things that you don't let yourself feel because you just can't, because you have to be strong. And I had to be strong, strong for Seth, strong for me, strong for Drew and strong for my family. Because if I, as Seth's mother, was falling apart over his diagnosis how could I expect others to keep it all together. It's a facade that we put up, but it crumbles and it could take months or years but eventually that wall breaks down and we have to deal with the past that we pushed in the back of our minds.

My brother and I never got along. EVER. And I'm smiling while I type this because I suppose that that was our dynamic. Among six kids there are bound to be all sorts of alliances and enemies and nemesis' but my relationship with Chris was that of a non-relationship. We didn't hate each other, we just didn't like each other all that much. We were two very different people, worlds apart in our beliefs and lifestyles. And I never remembered having a decent conversation with him before I became pregnant.

One day, on the off chance that we happened to be together, he talked to me about my pregnancy (pre-diagnosis) and talked about getting Seth his first bike and cool clothes (my brother loved wearing nice clothes/sneakers). This is the stuff he did for our nephew and I always imagined it would be the same for his relationship with Seth, he would be the cool uncle that bought him the $100 sneakers. It was a great conversation, the first real conversation I have ever had with him. And for a moment in time and space we connected on a real level. I got to see the real Chris, the real man behind the clothing and the hair and the expensive clothes. It was a treat, a rare treat to see that side of him, rather than the hardened person that I was used (or not so used) to seeing.

I never told my brother about the diagnosis. I wasn't planning on telling him until Seth was born. Everyone else knew, all of my sisters and my other brother, why not this one?? Honestly I thought that Chris was vain and wouldn't take the news well and would say something hurtful. I also thought he wouldn't want Seth as his nephew if Seth had DS. So I never told him and he never found out. He never got the chance to meet Seth and he never knew about the Down Syndrome.

Or so I thought. My dad confided in me months later that he had told my brother about Seth having DS. I asked my dad to tell me his reply, no bullshit, I wanted the truth, I needed the truth. In all simplicity my brother had said "That's like the actor Corky from that show right?", my father replied "yes" and my brother said "that's not so bad". So there it was, acceptance. Perhaps it was that I thought my brother never accepted me or liked me, I sure as hell didn't accept him and his lifestyle, but I needed that knowledge, the knowledge that he would have loved Seth just as any other child. Because even though our relationship never was, I had hoped that he would have had a good relationship with Seth and after hearing that from my father, well I knew if he had lived Seth would have had a loving uncle and friend in him.

I'm not going to lie and make my brother out to be a saint, he was far from it. In fact it was part of the reason why we didn't get along. A lot of his life and doings was "unsavory" to me and I didn't agree with it. Deep down Chris loved his family and was a good person but I still have conflicting emotions about him. There's an ugly side to this story, one that I'm not really prepared to write about and maybe never will be.

This year I turned 28 and I cried. Because this was the year that I was officially older than my big brother. It sounds wrong. One should never live to be older than their bigger siblings, it's not the natural order of things. He was 27 when he passed, he would have been 31 this year. I felt like there was so much I gained in the four years since he passed, so much life to live and learn and grow and I couldn't imagine being 28 years old and not being on this Earth, not living the life I have. It made me feel sad and appreciative and guilty all at the same time.

And while I know we didn't have the best relationship, that we might not have had a relationship at all, I miss him still and I wish he were here. So here is to the shitty month of September, may it pass with few tears, less grief and heartache, until we are reminded again next year. Fuck you September.