Saturday, July 30, 2011

D-day questions continued!

Was there anything you would change...I mean is there anything you wish you hadn't worried about, or stressed over...Something you thought was a big deal back then, but now looking back you wish you hadn't obsessed about??

Copied from Jenny's comment on my last post.

Honestly since I did have a prenatal diagnosis I wish I enjoyed my pregnancy more. I know that I felt like I had to go into research mode and find out everything about DS, but I wish I just took it easy. Seth is my only child, possibly will be my only child forever. I may never have another pregnancy. I miss the way he felt when he moved around, miss talking to him. I really miss when he used to get the hiccups inside of me (fetal hiccups, how cool is that!) and you could see my belly jiggle around in one spot. It was a truly amazing feeling.

When I was pregnant I was obsessed with how Seth would look. I was afraid that he would look . . . I don't know how to say it nicely, but frankly I didn't want him to look "retarded". Yeah that sounds horrible but there it is. I didn't want him to have a big sign on his face that says "I have Down Syndrome". I had nightmares for months about what he would look like. One very memorable nightmare was that he was born and he looked like a stereotypical Martian with the big eyes. It was a scary, scary dream. Obviously my son is a very handsome little boy and I wish I hadn't wasted time/energy worrying about that. I wish I weren't that vain, but I was. It was a huge deal to me. I think that the first time you are pregnant it's supposed to be this magical thing, your child is supposed to come out and be perfect and I had knowledge before giving birth that my child wasn't going to be perfect, that he may come out looking different than typical newborns.

Sometimes it almost made me wish I never had an amnio at all. For me that wasn't an option, knowledge is a sort of crutch I use when I'm going into unfamiliar territory. I arm myself with all of the facts and use that to ease my worries. This fear, this worrying about Seth not looking like a handsome little boy, well the facts didn't help alleviate that fear. Nothing did. There was one thing that helped me through it though, one thing that made me see that children with DS are beautiful. That was going to a DS message board and looking through all of the wonderful pictures of the children. I saw children, all with DS, of different shapes, sizes, eye colors, hair colors, and all of them were beautiful/handsome. And when I met my Seth, I thought he was too.

Friday, July 29, 2011

Diagnosis Day Reflections

D-day is coming up in about a month. Diagnosis day anniversary. The first two years I let it slip by without notice, maybe I wasn't ready to notice or to relive those feelings, last year I acknowledged it somewhat, this year it's different. I feel like this year I'm actually going to celebrate diagnosis day.

So to help prepare for the D-day post I've thought of something interesting to do here on my blog. I'm going to one by one answer the many interesting questions I have been asked about my whole DS journey/experience/knowledge. I think it can be very helpful to other moms of children with DS, it can be enlightening to those who know nothing about DS and it can be emotionally healthy for me to do it. So onto question #1 (Oh feel free to leave questions in the comments if you want those answered as well!!) And feel free to answer the questions if you do have a child with DS.

This first question is inspired from Rachel Coleman's blog post Unanticipated Milestones which can be found here

What were the most unanticipated milestones having a child with DS?

There are quite a few of these unanticipated milestones, things that I never thought I would celebrate but I have just because they meant so much to me, Drew and Seth. One of them was when Seth was able to eat a 2oz bottle in one sitting.

Yeah I know what child doesn't scarf down a 2oz bottle? Well there was a time, 3 years ago, when Seth didn't/couldn't. The doctors were so afraid of him not gaining weight that we were ordered to feed him 2oz every 2 hours, round the clock. Seth would not latch on, would not wake up, would not suck, would not eat, and it killed me. It took 45 minutes for one feeding and that was usually only about 1oz. Eventually Seth's muscle tone got better, he grew stronger, and then one day, out of the blue it seems, he ate his whole bottle. Eventually a 2oz bottle grew to 4oz, then to 8oz and now he is drinking out of 10oz straw cups, downing his drink and asking for more.

I would like to think I would never forget about how hard it was, how hard we worked, but when things become easier you do forget. I forgot that food was a struggle at all with Seth. It was the biggest struggle teaching him to chew and having him eat solids and then table foods. I forgot. Perhaps my reward is that last night I was able to give Seth a slice of pizza, apple pieces and his milk and sit down and enjoy eating dinner with him, versus feeding him. It's a cool thing.

Another unanticipated milestone is sign language. When I was pregnant I did a lot of research about DS but not much on sign language. Sign language came into the picture a bit later, when Seth was about 6 months old. His speech therapist started using basic signs with him, so we backed it up and started teaching him more signs and it sort of escalated from there. At 13 months Seth signed his first word "more". It would be "more". My kid wants more of everything. From then on Seth realized that signs got him what he wanted, so he used them frequently.

The most important sign that I think Seth has ever used is the sign for "I love you". Seth would repeatedly reciprocate the sign if we signed to him but never did it unprompted. One night upon putting Seth to bed, he looked up at me, smiled, and signed "I love you". And I cried and smiled. And I let him stay up late that night because that's probably the reason he signed it in the first place. He's a charmer! Seth signs "I love you" all the time to me and other people unprompted. It's still so special to me though every time he does it. I see other parents take advantage of the fact that their children can say "I love you". Not me, not with my child. I cherish every word that comes out of his mouth or comes from his hands.

Monday, July 25, 2011

Dear Jehovah God,

I was raised a portion of my life as a Jehovah's Witness and part of that upbringing was being told the importance of God's name. Jehovah. It sounded like when I was praying I was talking to him directly, not some "God" that everyone else had, but my very own personal God. No one else I knew called him Jehovah, it made Him my own, special friend. And I needed Him during my childhood, needed Him growing up, but as I got older I needed Him less and less. I would like to think it's because He has guided me to where/who I'm supposed to be in life.

I know I've been lax in the prayer department, I know I haven't sought your help when I should have, I know I haven't put all of my struggles on your shoulders like you ask us to do. I know I haven't had a conversation with you for a very long time, at least not one that doesn't involve blame and hate and not understanding on my part. So for once in my life God, here's a prayer that isn't asking for anything.

Dear Jehovah God,

I would like to thank you first and foremost for strength, the strength I have everyday to get up and live another day happy and healthy and safe. I would like to thank you for having food in my refrigerator, clothes on my back, a bed to sleep in, a roof over my head and family to love. I have heat in the winter and air conditioning in the summer. I have legs to walk with and arms to hug with.I have access to medical help for me and my son when we are sick and need it. I have friends with good listening ears and love in their hearts.

Onto the not so basics. Seth has more toys and DVD's then he can ever want or need. I have books to read and video games to play. I have a clean backyard to sit and enjoy the sun, rain or snow. I had a free college education and the chance to become a teacher and I want you to know that I'm taking advantage of that and that I'm doing it. I am. I'm going to be a teacher, thanks to you. I have a spouse that loves me for who I am and is my partner and best friend in life. He's a great person. He's amazing. He makes me laugh and smile and we have great conversations.

You gave me parents, while not perfect, realized that education was the most important thing and pushed their children to succeed where they could not. You gave my mom the strength to go to college at 50 years old and accomplish amazing things. I have three great sisters (yeah we have our issues) and two brothers whom I love very much. I have a handsome nephew and a slew of cousins and aunts and uncles. I have support and I have love. I have a Down Syndrome family online full of men and women who are there to hold my hand through a difficult time in my life. I thank you for them.

I really want to thank you for Seth. Because there are places in this world where my child, a child with Down Syndrome are thrown away without hope or love or food or any basic necessities. And here we are, here Seth is, able to thrive and learn and grow, all because we have the means to. I often think about this Jehovah, I often think about what would have happened if Seth was born to any family but ours, in any country but this. And I cry, partially out of sadness for all those kids who aren't given a chance, but also out of thankfulness that Seth has a chance in this life, to have a good life.

Seth's eyes shine when he smiles and laughs and looks at me. Jehovah I never thought I wanted to be a mom growing up, never thought I was quite mom material. Thank you for giving me the experience of being a mom. It's the best feeling ever. One person in this world who is such an intrinsic part of who you are, a being that you are forever connected with, there is nothing like that feeling. Nothing. I feel loved everyday by Seth and he has been my greatest teacher and another best friend. We laugh together, we discover together, we learn about the world while we hold hands and share thoughts. I feel an overwhelming sense of pride and accomplishment in being Seth's mom. I'm good at it. Thank you for giving me that.

Jehovah, I've been ungrateful lately. I'm sorry. I really am thankful for all I have in life. Thank you.

In Jesus' name I pray, Amen.

Thursday, July 21, 2011

All the beautiful people. . .

Yes it's a song by Marilyn Manson but my little post is about true beauty, one that radiates further than makeup, clothing, shoes, hair and all that jazz. My post is about the beauty inside that makes you a lovely person, regardless of what you look like.

Today I was prepared for a bad day. 3 1/2 year old Seth, very sick, going to the ENT in a waiting room full of rowdy children. I brought the stroller today, I KNEW what was coming for me. I came prepared with snacks and bribes and the Ipad . . . I pulled out the whole arsenal.

On our second hour in the waiting room another couple comes in with their child. My eyes lock on to him while theirs lock on Seth. We smile and greet each other like old friends. We've never met. In our hearts we have though.

The amazing thing about this Down Syndrome journey is that I am not alone. We are not alone ladies (and dads out there).

Back to the couple. They run over and this woman, a woman I didn't know, hugs my child. I mean the most honest, true, loving hug a person could give a child. A hug stemming from pure love and her beauty. She instantly loved Seth and I instantly fell in love with her six year old Brandon. It was like seeing Seth in the future. They both had the same hair, the same eyes, Brandon didn't care for me that much . . . he was too into his Nemo book. Yep he could read. That made me smile. Potential. The potential that I saw for Seth in Brandon's eyes and his loving family. They were so in love with their son and that transferred over to Seth and Seth was loving the attention!!!!

So if anyone was in the waiting room today, all eyes were on us. I felt them, the eyes of the other moms and dads in the waiting room. It's like they witnessed a magical moment, two families coming together over a commonality, one that has changed their lives, their personalities, has expanded their inner beauty and made them wonderful.

Another magical thing is the sharing of information that comes when you meet a parent that is going through the same journey. Instantly words like EI and IEP and ear tubes and sleep study and heart problems were thrown around. Because we KNOW. WE KNOW. We've been through it. She gave me the number of a place in New York that provides children with special needs over 3 years old diapers for free through their medical insurance. She took a motherly role with me and made sure I knew about all the programs available for Seth. I do, but I didn't know about the diapers. That will help our little family out a lot.

I helped her out by telling her that her son will be fine having his tonsils and adenoids out and ear tubes put in and that Seth benefited very much from having that done. I told her that the ear tubes will help with speech because better hearing equals better quality of speech. I told her that it was a hard thing to see your child go through but the outcomes of better speech and less sickness and improvement in sleep were so worth it. I would have liked to hear those things before Seth had his surgery. I needed to hear those things, but I didn't. But now I know and I can share.

So today was hot, very hot, Seth was sick, but after leaving the ENT we both had a glow, Seth and I. We had this glow about us and everyone we passed seemed to be smiling at us as we went along. The women at the blood draw place were ooohhinnng and ahhhinnngg over Seth, the person who drew his blood was so sweet and gentle. Seth got cake today, apparently after blood draws now my hospital gives kids cake (awesome for sugar replacement!!). You should have seen his eyes. They widened when he saw that cake, I imagine his thought process was "OMG I GETS THE CAKE!!!"

Leaving the laboratory for blood draws Seth is happily eating his cake, I drank his orange juice (juice and cake!!) for him (reflux + orange juice = BAD) and everyone we passed saw this little boy, eating his cake, making a mess and they only had smiles. So even though we were tired and I hate the heat like nothing else in this world, and Seth just had a needle forced into his body and instruments of torture stuck in his ears and throat, we sat down in the sun, him with his cake, I with my NY corner stand hot dog, and we ate and reflected on our day. I would like to think that Seth was thinking about how loved he is and all the great people he met today. That's what was on my mind.

Wednesday, July 20, 2011

Painful awareness . . .

Here's my "real pic" of the day:

I don't know if other moms have this issue, or it's just me, or just moms of kids with special needs, but I'm painfully aware of my surroundings and "triggers".

Let me explain. Seth, while being as typical as any kid can be, well he has issues, sensory, emotional, physical . . . blah, blah, blah. And as he gets older, well maybe even forever, I've been painfully aware of these "issues", these "quirks", these needs of his.

He doesn't tolerate heat very well, loud noises, unless it's music, nowhere where other kids will try to interact with him (he gets easily scared/intimidated). At the park he wants to climb the gyms but even the smallest one is one that he can fall from and break something. He wants to climb up the slide because he loves it and I'm aware of the row of kids waiting to get down it and take him along with them. At the supermarket he puts out his arms and knocks everything to the ground, he also spreads his legs with superhuman strength so he kicks other people/objects as we pass and makes it impossible to go down an aisle. The beach is scary because he enjoys flinging sand in his and other peoples eyes, eating sand and tries to swim by himself in the ocean. He then cries because he hates how the sand irritates his legs and other "parts". Going for a walk he wants to steer the carriage, doesn't want to hold my hand, wants to run ahead or sit on the sidewalk randomly or do the flop and drop. Too young for the movies, not enough tolerance for museums. . . I could go on but I won't.

So back to my point. I'm PAINFULLY aware of Seth's reactions in each situation and I have to weigh my decisions to do things or go places depending on him. It sucks, it does. I feel like much of my life is revolved around how Seth will feel or how he will act. Do I just have him suck it up and live life normally? Do I cater to his needs? Am I shielding/sheltering him too much?

And I have this constant anxiety about bringing him out. It just eats me up. I know most of it is just toddler issues but damn he is getting on my nerves. He's almost impossible to bring anywhere. I have to pack a bag full of snacks and diapers and wipes, bring along a carriage because he doesn't walk for much more than a block, bring sunscreen in the summer, a change of clothes for him and me (any mom who has been peed, pood or vomited on understands this) and it just becomes so much.

We don't have a car. We have the MTA. The bus and the train. Any bus or train ride is an hour, each way. It's killer. Add Seth's 35lbs to that - ouch! Seth used to be great on the bus and train when he was younger, he was perfect on them. I think he's gotten spoiled by his schoolbus!

I think the main point is that as a parent my mind is never stopping. I want a break from my own mind/thoughts but I know it's not possible. I think I have to stop being so damn fussy about this stuff and just let him do what he does.

Oh I have a new sponsor . . . .

really? Who the fuck did you think I was? Kelle Hampton? Her and her damn sponsors. Half her blogs are "buy this" ads. The other half are fake happy pictures. Ridiculous. You know what I do have a sponsor! It's called "The Buy a Fuckin Clue Foundation". Ok rant done.

Friday, July 15, 2011

Jealousy. . . the green emotion.

Jealousy, envy, covetousness, lusting, begrudging . . . we've all felt this emotion. We've all been there and it's not a good feeling. It makes you sick to your stomach to long for something that someone else has, to feel malice for them because you think your life is lacking. Frankly, jealousy sucks.

So am I a jealous person? Yes. Wow I admitted it. I'm Shanna and I have jealousy issues stemming from my childhood but now they apply to my life with Seth. The stemming from the childhood thing is a long story, basically two of my siblings were/are the golden children and guess what? I'm not one of them!!!

So with Seth I get jealous over other peoples kids. Let me explain because I'm sure that sounds horrific. I envy the "normal" pregnancy, the "normal" birth experience. I feel like I was robbed with my pregnancy. I found out at 21 weeks that Seth had Down Syndrome and it made my pregnancy into a big waiting game full of doctors appointments and lab tests and . . . . just ugh. I was also crying every time someone mentioned my baby. I couldn't talk about Down Syndrome for a long time to people.

And the ignorance I had to deal with. The stupid questions, the "I'm sorry's", the pitiful looks and comments made under breaths. Yes I knew Seth had Down Syndrome, yes I chose to continue MY pregnancy, NO I don't believe in termination (for myself), no I will not put him up for adoption, no he doesn't belong "in a place". Why do I have to discuss my choices of what will happen with MY child to the world?? Is it really your business???? WTH is wrong with people??

Sorry that little rant is over. But that is what I had to deal with. Oh and the infamous "Will he look normal?" Yeah that was a doozy from a relative . . . one that I will never forgive and never forget. "Will he look normal?" How about asking if he is healthy or has a heart problem or needs surgery or will survive to make it out of me? How about asking real questions instead of vain, stupid, selfish ones. NO he won't look normal. . . he will look like a person with Down Syndrome and I don't care because that person is my son.

And now that Seth is growing up . . . well now the comparison game comes into play. Why is he not doing this? Why are other kids his age doing that? Why isn't he walking/talking/writing/reading/jumping/playing? Why are so many people around me pregnant with "typical" babies? It's not fair!! Why do I have to work so hard for Seth to do small things and other parents work so little for their kids and their kids are still doing well? Why do I feel like something was wrong with me for having a child with DS? Why can't I be happy with what I was given? Why do I question everything?

Why, why, why?? Why me? That's a big one. Why me and not some other mother, some other mother who was older perhaps (no offense to older moms of kids with DS, this was my thought process at a certain time). I was young, I was a good person, I deserved a "normal" kid. Why me? Why not the 16 year old girl who was far too young to have a child? Hmmm?

I don't know why but I would like to think it's because I'm capable. Yep I'm able. I'm able to help Seth reach his full potential and become a fully functioning adult. I'm not super religious woman, but maybe God saw something in me that I didn't see in myself. Strength. Super duper strength. Seth has improved me as a person. I'm ten times the person I was before he was born. I grew up, I matured, I learned to fight for him, even when I wouldn't fight for myself. (We can rebuild her, we can make her stronger!)

The why days come fewer and far between but the jealousy. . . I don't know if that ever goes away. For the first two years I wouldn't want to hear about how other children in the family were progressing because it bothered me. It really got under my skin.

I also think it has to do with the fact that Seth is my first and (perhaps forever) only child. He's my only and I have to learn everything new. They don't make a handbook for my child. What to Expect When your Expecting is shit when you have a child with any special need. It's fucking bullshit. What to Expect When You Are Crying Because Your Unborn Child Has Down Syndrome and You Need Support and Don't Know What to Do and You Can't Stop Grieving and You Really Hate People at This Moment in Time - now that's the fuckin book for me. There's a book I needed to read.

Jealousy is a very messy sort of emotion. You can't help it but you feel this immense guilt over feeling jealous. Like what you have isn't good enough or important enough. So I forever reminded of this little detail, that what you have is good enough by this lyric courtesy of Rachel Coleman:

If you have what you need
forget what you want
We don’t have it all
But I know we’ve got

We’ve got la la la la love
We’ve got la la la la love
We’ve got la la la la
La la la la la
La la la la la love

Love we have in excess. So, while the green-eyed monster may come out to play once in a while, I'm going to look at Seth's face, his hands signing "I love you" and I'm going to tell that monster to fuck off and die.

Wednesday, July 13, 2011

What I was worried about . . .

everything. Truthfully I was worried about everything about being pregnant, even before finding out Seth has DS. We were not prepared for a baby. But here are a few specific things I was worried about and some great pics to prove myself wrong. I guess you can call this wordless Wednesday, but I'm never wordless. How about we call it minimal word Wednesday for my blog only? hehe

I was afraid Seth wouldn't be handsome. Yep I was. Here's my handsome boy:

I was afraid he wouldn't be silly, that he wouldn't know how to smile and have fun. Here's my silly man:

I was afraid that he wouldn't bond with his dad. So stupid of me. Really stupid.

I was afraid I wouldn't bond with him. To be honest, I didn't immediately. Yes in our society a mom is supposed to hold their child and have that instant connection - I didn't. I really didn't. I felt distant from him. It was our second day in the hospital, no one was there but me and him and I took off his shirt and started looking him over, inspecting every part of him. I looked at the space between his toes, his twinkling eyes, that freckle he has underneath his eye, the line across his palm and then all of a sudden, well he became mine. My son. I saw it all in him, my dads face shape, the color of my brothers eyes, my mouth and nose, and I saw more, I saw Seth. I also saw DS but I saw Seth first and that was a turning point.

That he wouldn't show personality:

So minimal word Wednesday. Next week I'll try for wordless.

Wednesday, July 6, 2011

Ahhh fuck. . . it has to be said. . .

I hate Kelle Hampton. There. Yep I'm still harping on this. Why you may ask? Well I hate overly happy people. Perhaps hate is a very strong word and I shouldn't be using it but . . . there it is. I'm 28 . . . hate is still in my immature emotional vocabulary.

So why do I hate her? I hate her hair, her perfect pictures, her house, her pool, her constant beach trips, I hate tons of pictures of kids with ice-cream (we get it . . .kids with messy ice-cream is supposed to be cute and normal - but you aren't), I hate the fact that this is a person that I'm told to admire and yet I see nothing of myself or my family in her and hers.

Where are the fucked up pictures?? The booger pictures? The crying pictures? The your child is so sick and in the hospital pictures? The red cheeked and red eyed ones? Where are the pics of the tired mom and dad that haven't quite got it all figured out yet?

That's right. . . they're on my computer. They're of my life. They are of my reality, my daily struggle for those few happy moments but I'm not going to make believe that those constant happy moments make up my day. They don't.

There is laundry and dishes and baths and shit and piss and vomit and tons more stuff . . .more than this one person can handle.

So back to me hating happy people. I'm a pessimist. I'm sarcastic, I always see the "down" side of things (there's that pun again!). I think people have ulterior motives, I'm always waiting for the other shoe to drop. I've always been like that and lately I've been trying to change it . . . but I can't. It's not like I'm not a fun person to be around, I'm just . . . different? Weird? Strange? Odd? I'm the odd man (woman) out in many ways in my life.

Why am I harping on this? Most people would say it's because I'm jealous. Well I'm not, I like my life, I do. I'm just angry that the poster mom for a child with Down Syndrome seems to be saying it all wrong. Seems to be giving all of the good and none of the not so good. None of the messy. I like messy, I live in messy, I THRIVE in messy. LIFE IS MESSY.

But Seth is getting to me lately. Not Seth himself but his . . . let's call them quirks. DS quirks if you shall. Lots of kids with DS have stims (look it up if you don't know what that is!) and Seth has his share of them . . . but lately they are getting to me. They really are. The constant hair twirling and thumb sucking/gnawing and obsession with balls and things that spin and roll and ahhhhhhhhhhhhhhhhhhhhhhhhhhhh. I'm frustrated. No it's not Autism, although there are cases of a dual diagnosis of DS and Autism, but this isn't the case with Seth. He just has a lot of sensory issues and self comfort issues and I just can't stand it anymore. I really can't. Perhaps this is why Kelle Hampton's perfection is irking me.

I caught myself today, I caught myself asking him "Why can't you just act normal?" It wasn't that I was asking him to act like he doesn't have DS, because he does and nothing can be done about that, I was acting him to behave in a normal manner for him, without all of his sensory issues. I wanted a day without it. I really did. Instead I got a day full of it, including many, many timeouts and a screaming match. I'm ashamed of myself. I am.

I sort of know where this is all stemming from lately, I do. Seth is getting older, it's harder to excuse his behavior, it's even harder for people not to notice that he has DS. It's also because on the Fourth of July we went to a friends house, who also has a son with DS and Seth decided to model after their dogs and proceed to constantly lick water of the floor. I had a great time at the BBQ, so did Seth and my SO, but this licking the floor thing - - well it got to me. It really did.

So I thought about it some more. I do that a lot - think. I don't want to have the "retard" child that licks floors and walls. I know I sound awful but it's in quotes because that is an idea in most peoples heads, their preconceived notion of cognitive delays. (That word is one that I don't use and in no way reflects how I feel about my son.) I don't want that kid. I don't want that to be what they see when they see Seth. Seth, the kid that licks floors. Shit he was still doing it today.

Jennifer - if you are reading this is not meant as a slight to your dogs at all!! LOL. Seth was doing the floor licking before he met your dogs because he knows quite a few dogs, including two trained dogs at his school. I love your dogs, so lovable!!

Okay so it's all out there. My insides spewed onto the Internet for you to read. I'm not crying as I write this post, I cried myself out today, I did. I'm done crying. I have to go to bed and start over tomorrow, apology and all to my little man Seth.