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 :)

Tuesday, October 19, 2010

Crawling!

I videotaped Jack this weekend because his army crawling has gotten so much better and I wanted to remember the steps it takes and the journey you go on to reach those milestones.  So this video was taken Saturday...but yesterday, Monday - he got on all 4s and crawled!!! That video to be posted soon.

Check out this sweetness:
You tube - Jack Crawling

I am so proud of my Jack!  I can't tell you how happy I am to see him try so hard to do things and when his body let's him...it's just completely overwhelming.  I LOVE HIM!!!!


WAY TO GO JACK!!!!!!!!!!!  I couldn't be more proud of you!!!

Tuesday, October 12, 2010

15 month stats

Our Little Jack is 15 months!  I can't believe, and actually as long as it has taken me to write this post...he is about to turn 16 months old.

Our visit to the pediatrician was hard, as usual.  I hate answering all the "is he doing this?" questions.  I am so thrilled an content at Jack's progress, but the doc only seems concerned with the 'big' things like spoken words and gross motor.

So Jack weighed in at 22 pounds, 4 ounces.  His height is 29 1/4 inches.  His head circumference is 45 cm.  He is in the 50th percentile for the Down Syndrome charts and the 3rd percentile to the other ones.  He is still a little guy.  He wears a 12 month top and 6 month bottoms, lol.  He has the shortest, cutest little legs.

So what is he doing?  Well, he is stacking blocks with little assistance.  He has started to sign "momma" and "more", although he seems to do these when he wants to and not on command yet.  He is starting to take interest in the "signing times" dvds...he will watch off and on.



 He is imitating sounds, such as "bah" for ball and "bb" for bubbles and "dd" for dog, etc.  He is turning pages in books and has learned the cause/effect of certain toys such as ball poppers.  He is playing appropriately with many items.  He rolls a ball back and forth and is starting to understand throwing a ball.  He loves balls, btw!  He is banging 2 items together and loves to bang on the xylophone and drum. 

He is starting to understand the concept of coloring, but mainly still wants to eat the crayons :)  He loves to stand, although he needs support.  He is sitting up well, but still is working on getting into sitting and we are still working on his balance and stamina.  Gross motor is just so tough for him.  He is doing great at army crawling and occasionally will get on all 4s.  He is completely off the bottle and is eating all table foods.  He is in love with goldfish crackers, like most kids and will eat just about anything.  The kid loves guacamole!  He has an advanced palate if i do say so myself :)  He is the most engaged little boy and loves cuddles and to sing songs and read books.  He loves to give hugs and big wet kisses and I am so glad he still wants to cuddle with me.  He is doing well in my estimation.  However, the pediatrician said, "he is still behind for gross motor and speech development even for a child with down syndrome" Well, Kiss my butt pediatrician. I know Jack is making progress and the steps are little but they are there.  I know he will talk one day and walk and my role is to encourage him and not compare him.  So take that!! 

We got some x-rays of his spine taken last week, but no results yet. We also got blood work done, but no results of that either.  Hopefully I will find something out today.

Other than that - we still have therapy 3 nights a week and so far so good.

For people who are new to this journey  - I just want you to know that you are a precious few.  Life is going to be so different, lots of stuff medically and lots of therapies, but the joy you will see in your child - wow.  I wouldn't trade any of it.  I love my son and he is amazing. And I love loving him..as I have said many times before...he is magical and I know you will all feel the same way one day.



Personally - we are making it.  Day by day.  I am so grateful for Jack and for my friends and family.  It has been a very very hard 5 weeks, and I feel like I have been in the worst lifetime movie that won't end, but we are making it.  Maybe one day I will write a book about all of this and make millions, who knows. I went out last night with some girlfriends for a much needed night out and it was so refreshing and nice.  Life hasn't turned out at all the way I anticipated - but we are hopeful that things in the future will be better. We deserve more than the lot we've been given...I know that for sure.

Monday, October 11, 2010

Littlest Heroes Project

Well, Jack's story finally made it to the website as well as so many other beautiful stories.

Check them out here: Meet our Heroes 

This website is a great way to promote awareness for all sorts of disablities and diseases and I can't tell you how proud I am that our Jack is on it.  And reading the other stories, I am reminded of how blessed we are with our son.

Yes, our lives are a little different, and sometimes quite complicated...but his smile and his laughter and his heart overshadow all those things.  I love my sweet Jack just the way he is and I can't tell you how grateful I am for him.

Enjoy!

Wednesday, October 6, 2010

Blessings

It's down syndrome awareness month, and I do want to make people aware of what a blessing these wonderful souls are..however, my energy is a little down and I am not quite myself - per my previous post - so bare with me.

Communication and Down syndrome.  As with any child, the range for communication is wide.  With children who have no disabilities, the range for saying their 1st word is typically 1-3 years of age. In children with DS, the range is a little wider, 1-4 years old, with some who fall before and after that range even.  Jack babbles all the time and loves to babble "dada" though I am not sure he understands its meaning.  Therefore, with Jack I have used sign language in hopes of giving him a way to communicate before he is able to say actual words.  We use signs for momma, more, all done, eat, drink, milk, and ball.  We will expand as time goes on, but for now we focus on those.  Read this article for more info: Sign Language in Down Syndrome

He has been making process in communicating over the past few weeks.  And just in the past few days he has been using the sign "momma"!!!  I AM SO THRILLED!!!!  He doesn't say the "MMM" sound very much, so the fact that he is using the sign in wonderful!  I am hoping to video taping him this weekend if I can find a free hand so all of you can see his new trick!

He has also been imitating more. For instance when blowing bubbles, he will say, "B" and when rolling a ball, he is starting to say, "Baa"  I am so excited and so is his speech therapist. These little steps feel so much bigger when you have been working so hard and watching him try so hard for so long.

I am so proud of you my sweet Jack.  And though life is hard right now, and it's just us...I want you to know that I love you and am your #1 Fan!  You and I are going to have so much fun together through the years.  I can't wait to see what you do next :) 

Next post - 15 month stats..we had our check-up last week and I still haven't gotten around to updating everyone.

A photo to leave you with..we attended the taste of St. Louis this past weekend with friends:

Friday, October 1, 2010

Finally saying it


Finally saying it
"We have to look at our own inertia, insecurities, self-hate, fear that, in truth, we have nothing valuable to say. When your writing blooms out of the back of this garbage compost, it is very stable. You are not running from anything. You can have a sense of artistic security. If you are not afraid of the voices inside you, you will not fear the critics outside you." ~Natalie Goldberg

I stole that quote from Kelli Hampton’s blog. It’s perfect for me right now. There is so much I have been wanting to say to write for myself.  So much I have wanted to get off my chest.  But I have been scared..mainly of what people will think of me.  I grew up in the South and in the south you don’t air your dirty laundry. You laugh and smile and pretend all is well…and well, that’s one of the reasons I moved.  Don’t get me wrong…I do love the autumn trees and mountains and locally owned coffee shops and grocers and cowboy boots and wrangler jeans and so much more about my home town, but I also know that I am more myself a little further north.  And Missouri is not too much further north, but just enough sometimes.  Here people don’t really care too much what others think, which can also be a fault.  People are a little more blunt and a little more forthright. But I have met some wonderful people here.  And right now, when life has pretty much thrown me the worst, tear stained curve ball, I want to take time to thank those people.  My neighbors, Eric and Jamie – you have been a voice of reason for me, of empathy, and I will never be able to tell you how connected I feel to your family and how safe I feel in your home. And thank you for calling every day to check on me.  Thank you for introducing me to Jen – I can’t wait to get to know her better.  Thank you.  Laura – you are my best friend here in the city.  You pretty much peeled me off the floor for the 1st week following this horrible event.  You have cried with me, held Jack when I couldn’t, and basically been amazing. You are a rock star and I am so grateful for you in my life.  You love my son as if he were your relative, which is why we call you “aunt Laura” and you are the only person he will willingly go to besides me. He loves  you.  Your sweet Chad has mowed my lawn and you guys have kept me company many lonely nights. You and Sheli made me laugh for hours at our work event, which I desperately needed.  Shannon and Rachel – I would have never met you if Michael didn’t work in your dept.  Shannon you make me remember who I am deep down with your encouragement and compliments and love. You have given me resources and have watched Jack too.   You remind me that life is just beginning and you have helped me sort out many details.  You remind me of hope. And you talked me through taking off my rings.  Thank you.  And Rachel – I have gotten to know you so much better through this.  You have watched Jack and sat on the floor with me in my living room while I told you stories and cried and you brought wine and artichoke dip…2 of my favorites.  You and Todd are an encouragement to me.  Barrett – you and I share something very special…2 fabulous boys who have an extra chromosome. You are my down syndrome soul mate :).  I am blessed to call you a friend and to have someone who knows the trials we face and the joys. You know what life is like each day for us, how each dr. appt makes you a nervous wreck and how sometimes you just want to stop all the therapies.  You make me feel normal.  Thank you.  And through you, I have met Katie – who opened her home to us so that I could cry…and eat Italian…and so our kids could play together.  WOW. Thank you for that.  And of course, my parents and grandmother.  My mom and dad and grandmother have heard me curse through this more than they have cared to I am sure.  They have listened and cried with me and reminded me that Jack and I deserve more.  Reminded me that I am worth more.  And my fabulous in-laws and family – I am blessed to know you all and Jack is blessed to be a part of your wonderful family.

By now you are all wondering..what is she talking about.  So, I’ll type it quickly, as if removing a band aid…though this wound won’t heal for a long time.   My husband left Jack and I unexpectedly one month ago.  And I won’t bore you with the horrid and incredibly sad details, but he is gone. And after all I know now, I realize it’s for the best.  I realize that he is not who Jack and I need in our lives .

I know many of you will have questions, but for now, I won’t be answering them.  It’s too hard.  My heart is completely broken and my life torn apart.  And every time Jack says, “dada” I have to fight back tears.  He still waves his hand towards the bathroom each morning where Michael was typically shaving and I have to redirect his attention because I know he doesn’t understand.  I took down 2 pictures yesterday and took off my rings.  Michael took his off in 2 seconds and it took me weeks and I was still not ready, but I had to.  The commitment was broken, the vows were destroyed and the symbol of love that those rings represented was gone, because he was gone and he left and all he left behind him were broken hearts and lies.  I cried for hours taking them off.  I love being married and I don’t want to be “single”.  I love the commitment and companionship and teamwork a marriage brings, and I thought our marriage was great, but I didn’t know the truth.  And although I know Jack and I deserve more, it was hard taking those rings off.  I felt like I was immediately going from married mom to single mom and I hate that label.  SO, I bought a cheap band from Target and it sits on my finger until I can afford a real one.  It’s plain and simple, but my friend Shannon said it best, she said, “well, let’s get a new ring..that symbolizes your commitment to Jack” and so that’s what I did.  

 Many people have asked if we will stay here in MO or go back to TN. And as of right now I have no plans to move.  We have an incredible support network here, and Jack is at a great daycare and I have a decent job.  But I do hate the reminders around the city of a love that is lost.  I hate the empty bed and the lonely nights.  And people have asked if I have a hard time getting up in the morning, and my answer is simple, “No.  I wake up to the most beautiful voice every morning…Jack’s voice and that is more motivation than you know”.  I suppose I am glad this happened before more years were lost or before Jack is older, but it basically still sucks.  I am 28 and right now feel so old..so worn down and just exhausted.  This blog has been a place for me to say things that I can’t say out loud or a place to share silly stories, triumphs and struggles. And I really wondered if I should share this sort of detail with ‘strangers’, but so many of you aren’t 'strangersto me.  I follow your own blogs filled with the same things..and I know there must be someone else out there who will relate or who may be going through the same thing as we are and this could be helpful to them.  Jack and I will get along fine, we are a great team, but we are sad…we are hurt..and I am wounded.  I feel as though in the past few weeks, I have been hit over and over again…like a poor soldier who can’t catch a break.  But I am strong and I know God has better plans for us.  And I cling to that hope.  And I focus on Jack and getting something done each day and eating 1 meal.  That’s what I do right now.  And eventually I won’t have to remind myself to do those things.  And when I see my sweet, sweet son, I am filled with so much joy and pride and the strength I get from him…is priceless.  Thank you for listening and for letting me say what is so hard to say.  But it’s our reality right now.  Next post will be much more exciting and fun, promise…after all it is Down syndrome awareness month, and there is much to celebrate!