Monday, June 30, 2008

Afraid of...

Recently Jayson and I had a rough spot and he told me that he thought Vinnie was getting all my attention. This is true when Jayson is home because he is there for Rudy but when he is at work and it's just the 3 of us Rudy comes first. But that got me thinking about it for a while and I came to the conclusion that I think I need to spend MORE time with Vinnie because I am afraid. I am afraid that Vinnie will develop some crazy thing that goes along with DS and the moments I have with him are going to be short. I know it's crazy to think that way but I do sometimes. I have also been sleeping in a single bed in Vinnie's room which was another Jayson complaint. But every noise that Vinnie has makes me jump and at night some noises are scary and again I think that will be his last breath. So there it is, I am afraid.

On another note my back hurts so bad I am contemplating having some kind of injections and then surgery. The only thing holding me back is the kids because I am sure I would be laid up for a while. And probably won't be able to breastfeed after I am pumped full of drugs. It HURTS BAD!

Saturday, June 21, 2008

Picinic and other news

Today was the Down Syndrome Resource Group picinic. I don't think it could've been better weather, not too hot or cold. My mother and step-father, sister, gram and grampa, my friend Becki and Jayson's mother and her boyfriend came with us. We all had a good time. We got to see Riley again and we met many other children with Down syndrome and their parents. There was a bounce house, a bouncing horse racing thing, pony rides, ding dong cart (ice cream cart), lunch, and a DJ. All the kids seemed to really enjoy themselves. Rudy was a bit grouchy and of course Vinnie is too small for all the fun but next year should be even better!

Vinnie is starting to babble a lot. The longest times of course are in the middle of the night when I go to bed later than I should. He is doing so well and makes us so happy, everyone just loves our boys!

We have a few new additions to our family, not really but we have seen a doe and it's fawn, lots of bunnies, and the gopher that lives under the shed has sprouted at least 2 babies this year. And lots of birds or course.

If you haven't already heard, the rumor is that the next Down syndrome convention will be held in California. Hopefully we will be able to rent a house and have a family vacation out that way. Woo hoo!

That's about it.

Monday, June 16, 2008

Finally NOT sick?

I think it may be the end. I have a nasaly thing going on still but I think I may have some kind of infection. I won't go into detail about it because it could get pretty gross but if it doesn't clear up by the end of the week I think I shall call the doctor.

Wii are now Wii owners. If you don't know what the Wii is go look it up. We also got the Wii Fit which is totally fricken cool! I am going to have to take a video of Jayson and his friends playing Wii bowling because it's HILARIOUS! He was all against the Wii and now he LOVES IT! I guess Wii will have to have a Wii party some time.

Ciao for now.

THEY

This just seems to fit perfectly into our situation right now...thanks to the mom on Downsyn!!

THE HOUSE OF THEY
Author Unknown

Have you heard of the terrible family They,
And the dreadful, venomous things They say?
Why, half the gossip under the sun,
If you trace it back, you will find begun
In that wretched House of They.

A numerous family, so I am told,
And its genealogical tree is old;
For ever since Adam and Eve began
To build up the curious race of man,
Has existed the House of They.

Gossip-mongers and spreaders of lies,
Horrid people whom all despise!
And yet the best of us now and then,
Repeat queer tales about women and men
And quote the House of They.

They live like lords, and never labor;
A They’s one task is to watch his neighbor,
And tell his business and private affairs
To the world at large; they are sowers of tares –
These folks in the House of They.

It is wholly useless to follow a They
With a whip or a gun, for he slips away
And into his house, where you cannot go;
It is locked and bolted and guarded so –
This horrible house of They.

Though you cannot get in, yet They got out,
And spread their villainous tales about;
Of all the rascals under the sun
Who have come to punishment, never one
Belonged to the House of They.

Wednesday, June 11, 2008

You'll find friends where you never thought...

I forgot exactly where I read it, probably on a forum for parents of children with Down syndrome but today I felt it. OUCH. It read something like this.

You'll find friends where you never thought you would and also LOSE friends you never thought you would.

I will one day find it and post it correctly. But it wasn't so much a sad day but a reflection day. No matter how much you try to make people understand some just won't.

Mothers Lie

~~~ Mothers Lie ~~~
By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clich├ęs and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.
You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church.
You're a wonder.

Sunday, June 8, 2008

I have been writing this for a while and recenlty added the last paragraph last week

It all starts before I got pregnant. I have PCOS (poly cystic ovaries) and conceiving proved to be a problem. Rudy was our first IVF miracle and we are hoping for another. When we left the hospital after egg retrieval I felt horrible but we picked up Rudy from Memere’s house (where Jayson got a bucket for me to vomit in) and went home. A friend was there waiting to be with me for the day. I vomited as soon as we pulled into the driveway. We got in the house and I laid on the couch in the fetal position, got up to use the bathroom and almost passed out. Back to the hospital I go. I was in pure agony. They brought me right in and had me lay down for a blood pressure and sit up for one. I sat for a second and nearly passed out. My blood pressure was some crazy low number I think one number was in the 30’s but both were under 100. It was time to get put under and look at what is going on and it’s time NOW. Well, my ovary tore and I was bleeding internally. By the time they got in there it had healed itself. All my embryos would be frozen until I healed and the doctors have made it clear that they don’t want to see my ovaries again, I have always been their problem child.

We’re pregnant two months later. We didn’t have any early tests except the quad or triple screen (and I didn’t even know we did that) because it’s my child no matter what. And truthfully, look at Rudy how could I have a baby with a “problem”?

We wait and wait for our ultrasound and the day arrives. Rudy, Jayson, my mom and I all pile into the exam room to find out if Rudy will have a brother or sister. Rudy is restless, the ultrasound technician tells us “looks like a boy”. Rudy had enough by this point so grammy takes him outside. Jayson offers to go be with them but the technician stops him and says he needs to be with me…I get a very uneasy feeling but it faded as the ultrasound went on. The ultrasound is over and the technician makes sure we see the doctor before we leave, she says that I have a partial placenta previa and there is an echogenic focus on the heart but it does not mean there is something wrong with the heart. Jayson and I wait in the waiting room for the doctor to see us. We go back to an exam room where the doctors tells us that having an echogenic foci puts the chance of having a baby with Down syndrome up by about 1-2%. But they see it more often in children without Down Syndrome, we get information about it and have an appointment with the genetic councilor and to have a level II ultrasound. We leave the office with some shock and uneasiness. We tell my mother and we try not to think about it too much because it seems the chances are very slim. We talk about it for the days to come before our Baystate appointment and we have always said it’s our child no matter what. I research the crap out of the findings and Ds and I feel ok. At the next ultrasound they find that Vinnie has some extra fluid in his kidneys but again, this is found more in boys than in children with Ds. They offer the amnio but I decline, too much a risk for me. They do a couple ultrasounds before Vinnie’s due date just to keep an eye on the kidneys. No other problems. I stop the research and decide that I want to enjoy my pregnancy, not worry about something I can not change.

The people from Direct TV are coming out to hook up our HD satellite. Jayson is home waiting for them and I am getting up with Rudy to start the day. I am having a few contractions that are pretty strong but not steady but I decide to send a text message to my friends and family about them. Jayson is starting to think this is it and wants to cancel the Direct TV. I am in denial. We found out yesterday that Jaysons cousin, about 26 weeks pregnant, went to the ob and they couldn’t find the heartbeat. She will be delivering her still born baby today. I don’t want this memory for either of us. The contractions stop so I send another text about how they stopped. I take a shower and get dressed. Contractions are starting again but are far worse than earlier, Jayson has decided that this is it and times them. I am still in denial, to the point where I am telling him that my face of pure pain is not really a contraction. He states that I am having contractions and they are getting closer. He wants to call his aunt to come watch Rudy. I say “NO, they have to be 1 minute long 5 minutes apart for an hour before we can call the doctor”. They are clearly getting stronger and closer and Jayson is calling people to tell them I am in denial but we are indeed having a baby today. I am in pure agony now and decide that his aunt should come and we should call the doctor and also let‘s cancel that Direct TV guy. “They want us to go to the office” Jayson says. Auntie Mary is on her way. It seems like forever and I am in the bathroom screaming when the contractions hit, they are now about 3-4 minutes apart and getting closer. “She’s here” Jayson says from the living room. I pull myself together enough to get myself out the door and into the car. I didn’t say goodbye, I don’t care! “Watch where your f*cking going” me “will you get off the phone and pay attention to the road the bumps hurt” me. Jayson calls the doctor and says we should probably go right to the hospital, they agree. We pull up to the valet parking and I breathe through another contraction before I can get out. We walk through the door and then I stop, I can’t walk anymore. Jayson asks the lady at the desk for a wheelchair and one lady wheels me as the other runs ahead to press the elevator button. When we get upstairs Jayson pushes me to the delivery rooms. The nurses take over and wheel me into my room. “When you can take off all your clothes, put these on and get into bed” says the nurse. I think “you want me to do what?”. Finally after a couple contractions I get all that done. The doctor asks how far apart my contractions are, I can’t even answer. The nurse answers “they were about a minute apart when she was wheeled in”. The doctor checks my cervix “about 4cm, do you want an epidural?” I answer “OH YEAH!” I breathe through many more contractions and then saint anesthesia man came. Moments later I am miss chatter box and everyone makes fun of me. Doctor checks and it’s time. 2-3 pushes and Vincent Adam is born. He is 8lbs 7ozs and 21 inches long. I look at him and know.

Jayson’s mom is at the hospital just a few moments after Vinnie is born. Jayson says, he doesn’t look like he has Down syndrome. I just say “ok” because I haven’t yet told him what “I know”. He looks at me and asks “you see something” and I tell him what I see. I ask the nurse about who would check his kidneys but never mention the ultrasounds and the markers for Ds because I just don’t want to officially know right now, I want to enjoy my baby. Vinnie is taken to the nursery to be cleaned and warmed and looked at. “I’m on the fence, I just can’t say for sure” the doctor says about Vinnie’s Down syndrome, the blood test is ordered.

We have a rough time in the hospital, Vinnie has a couple problems with oxygen levels and one time he turned blue. We are transferred to Baystate’s NICU where they babysit for 2 days. The night before Vinnie came home the doctor came over to tell us about the echo of his heart that they did earlier and some other tests and it went sort of like this “the echo of his heart looked fine and the ultrasound of his kidney looks ok but one test did come back positive and that was his Trisomy 21”. I can’t quite explain the feeling of those words but I can say that I still get choked up when I repeat them and I still have one tear roll down my cheek. I knew, I knew all this week while we were waiting for Vinnie to come home. I knew it was positive so why now did my heart fall out of my chest, my legs go weak, I can’t catch my breath and there’s a huge lump in my throat. Jayson holds my or maybe rubs my back and the doctor says “I’m sorry” and tells us to take all the time we need with Vinnie. We explain we were just leaving and she feels bad for delivering the news now. I think I composed myself so that we could walk out of the NICU with dignity, so no one “felt sorry” for us as we left. All the nurses and maybe a doctor or two were gathered at one of the desks inside the NICU. It was almost like they were huddled together so they wouldn’t have to deal with us or they were getting filled in as to what just happened over Vinnie’s plastic tub bed. I make it a point to smile the whole way out and say goodnight to them as I pass by, it was my way of saying don’t pity me I have a wonderful gift waiting to come home.

Everyone says that I am in a “good” place. I think it means that they can’t believe that I am not depressed or upset about Vinnie having Down syndrome. I am PISSED OFF that he has Down syndrome and I am depressed in some ways, it’s not fair, it SUCKS and I hate it but that doesn’t help or change anything. Vinnie is first and foremost Vinnie. He smiles and it changes my whole day. I have fears and I worry and some days I want to run away and hide.

Almost everyday Rudy, Vinnie and I go on a little driving adventure. This adventure is for my own sanity, we go to Starbucks for a coffee and sometimes a donut or muffin and then drive a little bit while Rudy sleeps. This is the time I contemplate what has/is going on in my life. Today I thought about what it was like to work as a service technician, it’s a “mans” job and I was probably one of 3-5 females that worked for the company that is nation wide and extends into Canada too. The first year or two working there was a constant fight to show people I could do what my co-workers could do and sometimes much more efficiently. I walked through doors to only hear “are you sure you know what you’re doing?” and of course I responded “well, maybe not. I might have to order parts or maybe call someone…should be about a month before we can get it figured out” that statement stopped the comments. So I drove around today thinking about the minor struggle I had to “fit in” to show them I was capable. Maybe it is because of the life I have already led that I am so accepting and ready to dive into any situation with my Vinnie (and Rudy too). I’ve been there, I’ve had to fight and I am willing to do it again.

Saturday, June 7, 2008

We are sick...

The two little guys and I are SICK! I feel so lousy I can just imagine how Rudy and Vinnie feel. I can't breath outta my nose and I am not sure I can take anything because I am nursing. Gotta look it up after. So, nothing to say right now because I just want to crawl under the covers and sleep!

Friday, June 6, 2008

Dear Vinnie, today you are 4 months old

Dear Vinnie,

Today you are four months old. You have surpassed every expectation I had of you when you were born. I should not have set my expectations so low, I failed you in that and I am sorry.

Today I want you to know that I will be expecting nothing but you trying your best. You have worked so hard to accomplish things already. You amaze me and daddy all the time. Your laugh is infectious as is your smile, I look forward to you waking up everday because you smile so sweetly at me.

I am so happy you chose me to be your mommy. You have already shown and taught me so much. You have opened my eyes and my heart to so many new things. I know that as you grow you will touch so many peoples lives. You already have your family wrapped aorund your little finger and I suspect that the people at church are feeling this too.

Thank you for coming into my life, I love you.

Mommy

Thursday, June 5, 2008

Baby book blahs, a pity party for one...

I tried to write a few things about what Vinnie is doing now, cooing and such, in his baby book. I guess I haven't written in it since the day after he was born. Basically it has some stuff from when I was pregnant like "My dreams and hopes for you are..." and it also has the date he was born with the weight and height. So I tried to fill in some other stuff but got really pissed. "My thought when you were born were..." I thought "Wow, you have Down syndrome". I could go on with the list of things it wanted me to fill in and I have two books for him so it's double but I will just say most of the answers were "Down syndrome". I wasn't all upset about it when he was born. I knew the moment I looked at him and I was fine with it. So it wasn't a bad thing but I don't want to put that in his book.

So by now you are saying "write what you felt second, after the Down syndrome stuff". I couldn't, I got caught up in my own little pity party. Then I had HORRIBLE feelings that I am ashamed of "he won't ever read it, so why bother". What a scumbag mom!

But on a happier note I did read the "My dreams and hopes for you" section that I had filled in when I was pregnant. I am happy to report that my hopes and dreams haven't changed much. Basically I said I wanted him to be happy, no matter what he does in life just be happy (I remember my dad once told me that if I wanted to be a garbage woman he was ok with that as long as I was happy. That was probably the only thing I remember him saying, well, only good thing). Treat others with respect and if he chose to have children give them unconditional love (this was a little hard on me since they say that males with Ds can not reproduce...no mini Vinnie's).



Now that I have caused most of my family and possibly some of my new "Ds" family a little concern I will sign off. I am ok, I just needed a little vent. No need to check in on me.

Tuesday, June 3, 2008

99 Balloons

I sent this video via e-mail some time ago. I got a lot of "why would you torture yourself by watching that?" comments. To me it is sad but gives me strength. I didn't know the family had a blog. I didn't read much past the most recent post, apparently they decided to stop blogging last year and have just started again because of some VERY exciting news. Yes, they are pregnant and they also have some other great things happening in their lives. Check it out.

http://www.ninetynineballoons.com/

And if you didn't see the video it is here. I could only watch it the one time so far. I will watch it again when I need encouragment and strength, what an amazing family.

http://www.ignitermedia.com/products/iv/singles/570/99-Balloons


I can't say anything more that would top the above story so that's it for today and tomorrow is wordless Wednesday.

Sunday, June 1, 2008

The weekend

We spent the weekend up at Norwich Lake. I think I drove more in the past 2 days than I do all week. We went up late Friday night, came home Saturday afternoon for more supplies and food. I then remembered I was to go to my grandmother's for dinner so Vinnie and I make the trip back down for dinner and then Sunday I came down AGAIN for church. By the way the church throws a Starwberry dinner thing every year, this year it is Thursday the 19th...YUM.

I'm pooped. Goodnight.

http://davehingsburger.blogspot.com/