Tuesday, December 28, 2010

A quick Post

I wanted to post some pics from our Christmas for our families to see.  Christmas was great - one of the best I've ever had. It was just me, Jack and my parents here in St. Louis and was cozy and relaxing.

Enjoy the photos:



















It was a lovely Christmas! We hope yours was as well!!  18 month check up today and more posts coming!!

Monday, December 13, 2010

SNOW!

We enjoyed some snow yesterday here in St. Louis.

I took Jack out for a few minutes just to let him experience it.

I don't think he knew what to think.

And my parents come up a week from today and I can't wait!!! Have a great week everyone :)

Friday, December 10, 2010

Unconditional Love

Seasons' Greetings.

I typically love this time of year, but I think it’s going to take a few Christmas’ for Jack and I to get the hang of it.

Tree is up, Stocking are hung and I’ve tried to watch White Christmas a few times.  My sweet Jack is making me remember the important things though.

 Laying under the tree is amazing, apparently!
this kid loves socks!

  No matter your religious background or current standing, I think there is something magical about celebrating Christmas.  Growing up I always wondered how in the world God could love someone like me.  Then I had my Jack and was amazed by the love I instantly had for him.  It’s so bizarre too, cause the love you have for your child is unlike any other.  I mean we grow to love people and we love those we marry over time.  I suppose a few of us have had instant connections, but still the love with our friends, spouses, significant others is a love that grows and even changes.  Not with your child.  As soon as I gave birth to my sweet Jack I knew I had all the love in me that he would ever need.  I knew that come hell or high water, that I would do anything in the world for him.  I loved him instantly with a love that would last a lifetime and he did nothing to warrant that.  He was wrinkly, crying, and only a few minutes old – but I loved him.  And it sank in with me then – that is how God must love me.  I have never done anything to deserve his love or warrant it, but he does anyway.   So I comforted by that this season. 

We went to our local Down Syndrome’s Association Christmas Party last weekend.   

 Jack playing on the mat


Thank goodness my down syndrome soul mates were there – Barrett and Brian.  I won’t lie.  It was hard.  It was very hard.  I cried a lot after coming home.  It was overwhelming seeing so many individuals with all levels of functioning and various ages in the same room.  I looked at Jack and Aiden and thought – surely they will be more like so and so (the higher functioning adults).  I know that is awful to say, but that’s your human response.  You want the best for your child and sometimes the best is clouded with normalcy. 

 Me and Jack, Barrett and Aiden

I know that even if Jack and Aiden are lower functioning that Barrett and I will love them still – that will never change. Our love for them isn’t dependent upon what they do or how they act.  But it’s hard.  The future and the unknown is hard.  And at that party and afterwards I was pretty upset with that extra chromosome.  I was scared of the future and I looked at my sweet Jack (who has 4 signs btw ) and cried – because I want a rich, full life for him.  And I will provide that for him and fight for him to have that.  And no matter what – my love for him will always be as great as the first day we met.  My love for him breaks me in 2 and humbles me to no end.  So this Christmas it will just be me and Jack and I will tell him the story of a baby in a manger and we will read and sing together and start our own tradition.  My folks come up for 2 weeks and I can’t wait.  I can’t wait to hear my dad yell at the TV about football or watch my mom make a mess in the kitchen.  And I can’t wait to wake up Christmas morning with them and my son.  Tears fall. I am blessed.  And we are OK.

Merry Christmas all.  18 month update coming soon!

Wednesday, December 1, 2010

Friendship and Holidays

I wish I had the words to describe how much I love these 2:
Laura and I have worked together for 2 years and have become very good friends.  Her boyfriend, Chad, moved here in May and I couldn't love him any more than I do.  They were the 1st people I called when you know who left.  They are incredible friends and people.  They are family for me here in the middle of the country.  And what's even more spectacular is that they love my Jack as if he were their own son.  They see Jack more than you know who does and when they walk in the door, Jack completely forgets about me and is ready for Aunt Laura and Uncle Chad.
I wish I had more words - something to give them to show how much they mean to me.  When we are together we laugh and cut up, but inside I feel so much joy and mushiness for them being here.  Being in our lives.  Helping us through this time and loving Jack so well.  And Jack LOVES Chad.  I mean that kid thinks that Chad is magical or something- Laura and I think Chad hides goldfish in his pockets for Jack and that's why...or maybe it has to do with the hair on the face.  Either way - I am happy Jack is connected to another male.  It's good for him.  And hopefully, if Chad and Laura stay in St. Louis a while, they will both be around to teach Jack many things with me.  If I could move them in my house I would.  They are wonderful people and I am so blessed to have them in my life.  I LOVE YOU LAURA AND CHAD!!!!

And Laura just celebrated her 25th birthday (She's such a baby)!  We had cake of course in celebration!

 Pay no attention to my messy kitchen.

And they helped me decorate our tree:
For some reason - the lights on the top don't light up - but that's neither here nor there.  I have to admit - I couldn't have done it without them.  I threw out many ornaments that meant nothing any more and a stocking that said "Dad".  If they hadn't been there I would have probably cried the entire time.  I am so so glad they were there.

And here is the little one exploring the tree:



I am pretty sure Jack has plans to pull it over at some point.  We'll see if he succeeds - hopefully not.  And hopefully our furnace will be repaired by today or tomorrow.  Thanks to Rachel and Todd for letting us stay the night with them and Jamie and Eric for letting us stay possibly tonight!  Another post on more great friends coming in the future.  Tonight -it's Carrie Underwood!!! And Rachel and I are going to rock it out!!!

Happy Hump Day!!

Monday, November 29, 2010

Thankful thoughts

I love Thanksgiving.  It's my favorite holiday.  I think that's because there is no greediness or worry about if someone liked the gift  you got them and no anticipation of what you may or may not be getting.  You get food and good company - at Thanksgiving - you pretty much know what you are going to eat and who's going to be around.  This was Jack's 2nd Thanksgiving - and it was a world of difference from last year.  A hard reality to face.

Last year, we made the 13 hour long drive to Denver, CO to be with my in-laws.  Jack was only 5 months old and just starting to eat solids. I was till breastfeeding and pumping and ...we were still married.  Life -but all that I knew - was great and would be great for a very long time.  And in one year - it has all changed.  I spoke with my in-laws and my family of course, and we all felt the difference. 

I went out with friends this year - the night before Thanksgiving, which they refer to as "Skanksgiving".  Jack stayed with the Hadicans so mom could go out and have some adult fun.  I realized quickly that I am not quite as young as I used to be and those long nights really hurt the next day.  So Thankgiving preparations started around 10:00.  I put in the turkey breast (didn't need a whole turkey) and started the dressin' - that's right - I call it dressing!  I cleaned up the house a  bit and played with my sweetie.  Laura and Chad (our Bestfriends) would be arriving at noon.  Jack and I could have flown to my in-laws for Thanksgiving - but flights are expensive or we could have driven to Chattanooga to be with my family - but I am not quite ready to make an 8-hour car ride alone with my Jackers, so we decided to stay in St. Louis and cozy up with Laura and Chad and start a new traditions.
 
Laura and Chad arrived at noon with pumpkin pie and potatoes and homemade cranberry sauce and we sat the table and began to stuff our faces.  Jack was not thrilled with the Thanksgiving feast so he ended up eating chicken nuggets of course and mashed potatoes.  I didn't take many photos - and I don't really know why. I love taking photos and did want to remember this year, but for whatever reason - I didn't take a single photo that day.  Maybe it was too hard or too painful.   Football was on in the background and we laughed and had fun but it was different.  Jack refused to nap and was asleep that night by 5:30 - he had thrown up most of his food, so I let him sleep worried he was getting sick.  Laura and Chad stayed for a bit and I am sure they were ready to go home, but they were so self-less.  Staying with me so I wouldn't be alone.  They are incredible friends.  I am completely indebted to them for all they have done for both me and Jack.

Friday we needed to get out of the house...crazy idea.  On the way home - I called our local radio station and won CARRIE UNDERWOOD tickets and that was all I needed to get a little pep back in my step!!  Saturday the furnace broke and I frantically called just about every guy I know who is somewhat handy and the bottom line - call a technician.  Thanks to John and Seth though for their help.  Ugh - single mom - big house - broken furnace = not good.  Pep left pretty quickly.  Laura and Chad came over and we hooked up tons of space heaters and bundled up - ate grilled cheese and tomato soup and watched "Love Actually."

I LOVE "Love Actually" - its' one of my favorite movies cause it reminds you that love is all around. That everyone loves someone.   Jack and I danced to the music and played on the floor during the movie - he wouldn't nap yet again.  And Laura helped me put up my Christmas tree and decorate it!  Back to the movie - I love most of the story lines in the movie, but this year one was particularly hard to watch.  The one about the secretary and boss.  You know the one where the 2 of them flirt non-stop even though he is married.  He ends up buying his secretary a gold necklace for Christmas and his wife, Karen, of course finds out.  I remember the words of the wife when she confronts the husband about giving the gold necklace to her. After the husband admits he is a fool, she responds with: "Yes, but you've also made a fool out of me, and you've made the life I lead foolish, too!"

And if I am honest - that is how I feel. I feel like a fool. I cried when she said that - because that's the perfect sentence for what it feels like when you are betrayed.  When traditions are forgotten, love is broken and lives are shattered.  You feel like all the love and trust you were giving was foolish because it was used and abused and overlooked.  And my thankfulness is quite different this year.  This year I am so thankful that this marriage will be officially over in 3 days.  I am so thankful that I know the truth now and not later. I am thankful that God has saved me from more years of pain and hurt by revealing the truth now.  I am so thankful that I have the love of friends and family and a son to dote upon.  I am thankful for an empty house with no more deceit.  I am thankful for an empty bed with no more lies or infidelity.  And I am thankful that I know this - that I gave my marriage all of me. I gave every ounce of Love I had - and so I have no regrets - I did what I should have done.  I wonder what next year's Thanksgiving will bring.  I don't want to feel foolish next year.  I don't want to feel lonely.  When I find myself getting sad that's my cue to pick up my sweet boy and dance - bake cookies - sing songs- run around - play - because although one man made me a fool - I have another man in my life who makes me more proud and more thankful than anyone else.  I am so grateful for the gift of motherhood.  I hope one day there is someone good to share parenting with - but for now I am soaking up the time we have alone.  Making sure he never feels foolish or unloved or unsafe.  Making sure he knows his value and worth.  Teaching him football - taking him to sporting events - trying to play both roles so that his life is well-rounded and fulfilled - and let's be honest - I love those things too - so win, win!

Another note from this past weekend - I saw a man in the mall with Down Syndrome the other day - he straggling behind his mom and sister, I presume.  His pants and shirt were baggy and he looked lonely - he was talking to himself.  I wondered why they didn't walk with him.  I wondered why the mom didn't alter his clothes.  I wondered why they weren't including him on their conversations.  I wondered if he knew how special he is.  I wanted to run over to him and give him a huge hug and tell him how special he is.  I wanted to go see what he liked to do and what his name was. I just stood there watching him with a painful half smile on my face.  I wanted so badly to run over, but I didn't.  I wanted him to be included.   Instead - I scooped up my sweet one and told him.  And I promised him he would never walk alone unless he wanted to.  That he wouldn't be left in the shadows or left behind.  That he would be included in conversations and that he would always be someone I wanted to talk to.  It broke my heart.  I cuddled and squeezed and loved on my sweet Jack. How can I be un-thankful for anything?  I am blessed beyond measure with so much.

So - I'll post pictures tomorrow.  Thanksgiving was good - filled with many lessons and epiphany's.  One love might be lost - but the value of the love gained is immeasurable.

Oh - and the RAMS won yesterday!!! WOOT WOOT! GO RAMS!

Wednesday, November 24, 2010

"More"

I have been using sign's with Jack for quite sometime.

We work on "more", "all done", "momma", "eat", "drink", "milk" and "break"

Jack has done the sign for "momma' several times and is getting better at "all done" and just last night was a ROCK STAR with the sign for "more"

Here is a video of him picking it up :)
Jack Signing More

I LOVE HIM AND AM SOOOOOOOOO PROUD OF HIM!!!!

The 2 ladies in the video are 2 of Jack's therapists.  Tara - his OT, and Jill - his Speech.


Way to go Jack!!!

Monday, November 22, 2010

DS Family

I love this post:

The Bartolone Family

And I am so grateful for all my DS friends - most of which are online.  What a great source of support you have been for me this past year and a half.  It's nice to read your blogs or facebook posts and feel like I am looking in the mirror to someone who gets it and sees it and feels it and lives it.  I hope you all have a great Thanksgiving.  We will be sharing our's with close friends, Laura and Chad, and of course - my down syndrome soul mates - Barret and Brian and Aiden!  Can't wait :) Photos to come for sure :)

Friday, November 12, 2010

Not Faking It

Ok, so I need to vent a little bit.  This week has been a hard one.  And risking all the negative comments that may come from this post – here I go.
It’s been just me and Jack for almost 3 months now.  And to be honest, the last month has been pretty good.  I have been enjoying time with Jack and friends and not having to worry about all the things I was worrying before M left.  I use the letter “M” for you know who – cause just saying his name makes me want to vomit.  Jack has made lots of progress – he is crawling, sitting up so well and trying to pull to stand.  On top of that he is saying Momma occasionally and signing it and trying to eat with a spoon.  But there is always that moment that comes when you are faced with reality.  Down Syndrome.

Ask any of my friends or family and they will tell you that I adore Jack and wouldn’t change a thing about him, but sometimes it gets to me. And this week was one of those weeks.  Jack’s OT was asking me questions like, “do you think when you ask him to give you the ball…that he gives you the ball because he knows it’s a ball or because it is just an object he prefers”.  Well, I don’t know.  I am excited when I say give me the ball that he gives me the ball – but do I know that he is really getting it. Nope.  She made him say “bah” before she would give him the ball and my heart about broke into pieces.  He kept sticking his little fingers in his mouth and look at me with those big blue eyes – like “Momma – help me”  I could see in his sweet face that he wanted to say "Bah" but couldn't...he couldn't do it on command.  I finally told her that any vocal sound should warrant him getting the ball.  I guess I am just not ready to be that tough on my sweetie.  And when she left - I just cried.  I held him and cried. I wanted to take the delay and put it on myself.  And I know this is just the tip of the ice berg.  It will be bicycling and shoe -tying and writing and reading, etc over and over again in his life and it makes me so sad.  I love our OT, she makes me think about things and reminds me to do so much, but sometimes it’s really hard because she points out things and asks me tough questions.  Questions about Jack’s cognitive ability and after each session I get a little discouraged. Do I know that when I say milk, he understands what milk is without seeing it?  Nope.  Does he know what ‘night night’ or book mean? I have no clue.  I see glimpses here and there that he is getting it, but I have no absolute knowledge.  

 And I know that every parent deals with this at some point, but let’s face it – when you have a child with delays – the process is much longer and much more painful.  (disclaimer: I am an advocate for Down Syndrome and see the beauty in it, but I also will not hide the parts that are hard - they don't make me love Jack any less)  And never mind that now I get to do it all on my own.  No one to give me a break – or help teach Jack things.  Just me.  And the pressure is on.  And this week I feel this huge burden that Jacks’ successes or failures in life rely solely on me.  And I know if any of my fellow moms said something like that to me, I would tell them how crazy that notion is, but I can’t help it…it’s how I feel.
And so I am mad.  I am mad that I have to navigate this single mom of a child with Down Syndrome alone. I am mad that I therapy is just me and dr. appts are just me.  I am mad that there is no one around to give me a break or help me with different things. I am mad no one is around when I cry after therapy to give me a hug and tell me it will all be OK.  I am mad that I am so exhausted that I have to remind myself to do ‘therapy play’ after working 40 hours a week and having 3 therapies a week – and not to mention the stress that comes with a divorce.  I am mad that I am going through a divorce.  I don’t want to be married to that person anymore – but I don’t want to be divorced or Jack to be without a dad.  I am mad that Jack only has me.  I am mad that I have to figure out a legal guardian in the event of something tragic. I am mad that our finances rely on me mainly. I am mad that I have to sell our home and think about moving without anyone’s help. I am mad that I go to bed in an empty room and no one asks me “how was your day?”.  I am mad that I don’t know any other single moms really.  I am mad that I feel like the black sheep of all my friends. I am mad that I have to eventually be “out there” again and learn the rules of dating and 'what not' eventually. I am mad that I will cook Thanksgiving for only me and Jack.   I am mad that I don’t know what the future holds for me or for Jack.  

I know – Enough of the pity party Brandi.  And if I can say one thing – bull shit.  I don’t have pity parties very often – so this one is mine for the month of November. I go to work everyday, come home do therapy, feed Jack and play and then read or watch TV or clean or something without missing a beat.  It's been a while since I had a pity party.   And I will say that I have INCREDIBLE friends  and family – the best on earth.  And they help as much as they can and they have practically held me through so much of this.  But they can’t replace a broken heart or a lonely bed or a missing dad.   And that’s hard.  My respect for single parents has exponentially increased in the past months.  It’s a very difficult life and I feel like there should be a day each year set aside for them.  Cause it’s hard.  It really is.  And I love being a mom.  It’s the thing I always wanted to be but it’s really really hard….and lonely.  And even if it's hard or lonely - I wouldn't change it.  I can't imagine my life without my sweet son and wouldn't want to.  The balance is hard though - I find myself wanting to spend so much time with Jack to be sure he has what he needs, but also wanting to go out and be amongst adults…and the times I have gotten a babysitter and gone out – I had a blast – and then felt guilty. Like since I have a child at home, I shouldn’t be able to go out and have fun.  Crazy.  This balancing act is really hard and I know I will eventually get the hang of it, but for now I feel like a waitress with a huge round tray filled with empty plates, overflowing drinks and the gracefulness of a pit bull.  I feel like I drop everything – nothing is without a crack or  spill.  And btw- I really love being married and being committed – I feel like I am really good at it, so I have no clue why on earth this has happened to me.  I can’t help but asking, What did I do to deserve any of this?  Why does this crap happen?  Ugh.  The long list of un-ending questions.
And little sweet Jack – he deserves the very best.  He deserves all the love and wonder in the world. And I love him more than anything.  I love his smile and cuddle.  And he is learning how to be a real boy – he is getting an attitude. That’s right folks – this little sweet cutie pie is getting an attitude and learning to test limits.  It’s crazy. It’s like a switch flipped or something and here is another instance when in a relationship you would ask for suggestions or discuss how to handle these things, but no – I get to make yet another decision alone. 
I am really sorry for saying all of this – compared to so many I have so much to be grateful for. I have a wonderful, sweet son, amazing friends, loving and accepting family, a job, a home and food.  I really have no room to complain. And I know how blessed I am.  I count my blessings and try to remember to dance in the rain.  And I have been dancing, but this week - the dance has turned into the awkward girl in Middle school standing on the side lines wanting to dance, but she ends up watching instead.  That's me this week. I don't want to feel this way - but I do.  So, I guess I just needed to get all of this off my chest.  So there it is – it’s out there.  I have always been a person who needs to say it like it is – I hate faking things – and I won’t fake how hard this is.  Hug all those single parents you know and those of you who have amazing partners - don't take them for granted.  And let's hope my dancing shoes come back soon.

Have a great weekend.

some recent photos:

Monday, November 8, 2010

Tuesday, October 26, 2010

Jack the Dragon

We decided to try on Jack's halloween costume this past weekend to see how stinkin cute he would be and this is what we found:
ROAR!!
With Aunt Laura
Love this kid!
Jack the Dragon!!!
Needless to say - he is going to be the cutest dragon that ever was this weekend.  Jack's Grandma, Marsha will be coming in town this week to give me a break as well as hug and kiss on her sweet grandson.  I am sure we will have lots of fun and I am looking forward to some down time for sure!

Here are some other photos taken in the past week of my sweet little man!  He loves playing with this Tigger basketball thing and laughs each time Tigger said, "woo hoo"  I think he is going to be a baller for sure! :) 
And we went out this past Saturday night for a friends birthday, and I couldn't miss the opportunity to dress my sweet date up in a nice button down :)
Have I mentioned that I love this little boy???  I am crazy about him and each day is that much better cause I get to hug and squeeze and play with him! NOTHING IS BETTER!!!  Have a safe and Happy Halloween - can't wait to post more pics of my dragon :)