Wednesday, May 25, 2011

Can't believe he is almost 2!

Well, Jack will be 2 in a couple weeks. I can't believe how fast time has gone by.  I think about how much life has changed.  How much he has changed.  I remember holding him that 1st night in the hospital and how crazy in love I was instantly.  Nothing has changed.  I am utterly in love with my son.



No matter how many crazy curve balls life has thrown, the one ball that came my way and I caught with ease was being a mom.  I have always known that I wanted to be a mother and I wouldn't trade it for anything - even if I do have to navigate parenthood alone.  I know that I was meant to be Jack's mom and he was meant to be my son.  So much has changed since he was born - June 22, 2009 - 4:51 pm.  I was married then, I had a different job, lived in a different house, and life was a little more predictable.  I know that the things that have happened over the past year are for the best for both me and Jack.  And I know that every morning when I wake up I get to do the most wonderful thing - be a mom.  I love greeting him each morning, cuddling and making pancakes, playing with him, singing silly songs, dancing, and getting ready for bed each night.  Being single/ alone is hard, but not having Jack would be impossible.  Each night we read a couple books, sing songs and pray.  Tonight we had therapy with all 3 of his therapists and it was wonderful.  They are all wonderful women and love my son well.  It's crazy how much he has changed over the past few months.  How his comprehension has grown.  How his communication has evolved.  My little man is growing up and becoming a boy.


I am officially on vacation - haven't taken one of those in over 2 years.  Tomorrow Jack and I will play and go to the park and then Friday I meet my parents in KY and he will stay with them for 5 days while I come back to St. Louis to spend some time with an old friend.  I know I am going to miss him like crazy, but he will have a great time with grammy and papa.  I already miss him and he hasn't even left yet!  Crazy.  I don't know what the future holds for us - but I am hopeful today.  And we have one another.  And I will fight for him and advocate for him and love him endlessly.  He is the greatest gift I have been given and I know when the next year rolls around I will be amazed yet again at how much he has changed.  Sometimes I wish I could just stop the clock and soak up every second of who he is right now. I wonder if I will remember how chubby his thighs are, or what his laugh was like when he was 2, or all the little things that I love so much right now.  I hope I remember it all - and I think this blog and all the pictures I take will help.   He is funny and goofy, he is smart, he is so stinkin cute and mischievous, he is a ladies man and he loves being the center of attention.  He is not shy like me (I used to be really shy) and he knows how to laugh well.  He loves music and to dance and he is motivated and determined and inquisitive and he is a lover.  He loves to hug and kiss and wrestle and I know he gets that from me :)  I love my sweet, beautiful son.  How blessed and lucky I am to have him!!! I can't wait to celebrate his 2nd birthday and the ways we both have grown in the past year.  It will be a good day!

Monday, May 16, 2011

Somewhere over the rainbow

I just sang "somewhere over the rainbow" to Jack.  I cried the entire time I sang it.  Today has been a rough day. I'll sum it up with work, life, and daycare.  I think that covers about all of it.  Sometimes the days go by and there is so much love and happiness and fulfillment.  Then there are days like today.  Lots of tears, anger and pain.  There seem to be more days like to today recently.  I am sure it has to do with the fact that I am pretty tired and life has thrown some amazing curve balls over the past year, but the only 2 things that consume my thoughts are Jack and Family.  I want my sweet son to feel loved.  I want him to feel valuable.  I want him to be happy and know that our home is safe and that my arms will never tire of holding him.  And I want him to have more than just me.  I pray for that every day and every night.  So, today we got home after a long day.  My favorite teacher of his, LaCreta is no longer at his daycare and I am really really sad. I wonder if the other teachers will give him the love and attention that she did.  I wonder if they will remember to include him and move him around like she did. I wonder if they will challenge him and work with him like she did.  I am so sad.  I have entrusted her with my son for the past 2 years almost.  When I picked up Jack today he was sitting alone.  And I was pissed.  I hope this afternoon is not an indication of how his day went.  I picked him up, hugged him and we came home - ate dinner and then he just wanted to cuddle. So, I let him.  And I just held him and told him how much I love him and sang songs to him.  And when I got to Somewhere over the Rainbow I wept.

Here are the lyrics:
Somewhere over the rainbow
Way up high,
There's a land that I heard of
Once in a lullaby.

Somewhere over the rainbow
Skies are blue,
And the dreams that you dare to dream
Really do come true.

Someday I'll wish upon a star
And wake up where the clouds are far
Behind me.
Where troubles melt like lemon drops
Away above the chimney tops
That's where you'll find me.

Somewhere over the rainbow
Bluebirds fly.
Birds fly over the rainbow.
Why then, oh why can't I?

If happy little bluebirds fly
Beyond the rainbow
Why, oh why can't I?

The premise of the song is really getting to a place beyond worries and stress.  I want to go there.  I want Jack and I both to dream dreams that really do come true.  I want to create a different world for him.  For Us.  I admit as he is approaching 2 years old, I see the delays.  And it's really really really really really hard.  It's hard on so many levels.  It's hard when friends talk about what there kids are doing and saying. It's hard telling people he is 2 when he is so much smaller and not walking - they look at me with weird faces.  It's hard when I don't know what he wants and he is trying to communicate.  That's the hardest. Sometimes I wish there were no milestones so that when they weren't met - they didn't breed such pain in parents - that way they could only be celebrated.  I don't think God would want us judging our children by how quickly they stand or walk or talk - yet our world is consumed with it.  Our world is consumed with standards. I remember a verse I don't even know where it's at, but about God looking at the heart of man - whereas man looks at the outside.  I wish our world were like that.  And it's nights like tonight - after I have put him down - that I want a partner - someone to hug and remind me of that - that Jack's heart is the most important part - that his ability to love and feel love is more powerful and shaping than milestones and that it's ok.   Someone to remind me of life after this one.  Someone to remind me that God has plan and purpose. 

Ok, I am done venting. Thanks to those of you who read.  This is like a diary to me - except that the entire world can see it.  But I am completely honest and I know you all read at your own risk.




Thursday, May 5, 2011

That Word

Retarded.  Retard. 

"I'm such a retard".  "I am retarded".  "you are retarded".  "I feel retarded today".


These are all phrases I have heard often in the past couple days and it's starting to wear on me.  I mainly hear them when I am at work.  I haven't said anything yet, but I will.  I am trying to find the best way to address it and say it.  I have posted about this before, but today it's particularly bothering me.  I wonder how I will respond in the future when some bully kid says it to Jack.  Or what if Jack says it?  I admit as we approach Jack's 2nd birthday I get sad.  Because he is getting older.  People stare a lot. I don't know if they stare because he is so stinkin cute or because they know he is different.  I think each day that in x amount of time he will be in school.  In big school.  A world that I won't be able to protect or shelter him the way I can now.  He will be in a world where kids will be mean and nice.  Where teachers will be mean and nice.  Where parents will be mean and nice.  I dread the day someone makes him feel small.  I dread the day someone says that word to him.  Tears fall down my face as I think of it.  And there is nothing I can do.  I know every parent must feel this way to some degree- wanting to protect their child.  I feel such a burden though.  I don't know if it's because I am single and know that his self worth - teaching him how valuable he is - relies solely on me?  I am not sure.  All I know is that I feel heavy and my heart hurts.  I wish I could change the world for him.  I wish I could make everyone see how absolutely lovely he is.  I wish I could stop the world from trying to change him.  I guess all of us with kids w/ disabilities strive for normalcy on some end.  But I love my Jack.  I of course want him to speak, and walk, and be self sufficient, say his ABCs, sing songs, etc, but on a daily basis I am not worried about it.  I know he will get there in his time.  And I guess I get anxious about kindergarten and school cause I know the rest of the world isn't on his time.  They will push him and remind me how behind he is or isn't, and kids, parents and teachers will constantly compare him to "typical" kids.  I hope I don't have to venture that world alone, but I might have to.  It's times like these that being alone is truly hard.  So, the word retarded just reminds me that the rest of the world isn't mindful of my Jack or anyone with disabilities.  It reminds me that people aren't as thoughtful as I would like them to be.  And it brings to light that life in the coming years will have many challenges.  I know Jack knows I love him and accept him and I always will.  How I wish I could change the world for him.  I wish I could take away the "shoulds".  People always tell me how lucky Jack is to have a loving momma and how God gives special children to special people.  I am not sure how I feel about those - but I do know that I wouldn't trade him nor change anything about him.  If a drug came out tomorrow that could take away his DS I absolutely wouldn't do it.  Bold I know.  God made him this way. And the only motivation behind changing him is fear.  Fear of death or illness or differences.  And want of 'normalcy'. I love him.  I love him. I love him.  And I hope that if anyone calls him 'retarded' that he can say - God made me this way and I am loved and I am cherished and I am worth a lot.  I hope he can hold his head high knowing that his mom loves every ounce of him and that he was made in God's image.  I hope he knows how incredible and special he is.  And I hope he knows that he was not some mistake or genetic screw up. Sometimes I wonder why God gave him me.  Sometimes I think that I don't have as much to offer as a loving mom and dad would together and often feel lacking.  But I know in my heart, that God chose him to be my son and me to be his mom.  And we have a great love story.  I love you my sweet, wonderful, beautiful, silly son.    This was us almost 2 years ago - I fell in love with you instantly and that hasn't changed. You are my sunshine.

Sunday, May 1, 2011

Background

I felt like I should post something to give a brief summary of our lives - there are lots of new readers and I don't expect everyone to be able to read through each post to get up to speed. So, this will serve as brief synopsis of our lives.  My name is Brandi and my son, Jack, and I live in Missouri.  I am from Chattanooga, TN but have been here for 6 years almost.  Jack was born to my ex-husband and I on June 22, 2009.  We didn't know he had DS during my pregnancy and in fact we didn't know until he was 5 days old.  Jack lacked a lot of the common physical characteristics when he was born and in the hospital no one mentioned anything.  I wasn't sure who he looked like, but I wasn't necessarily concerned about it.  The 1st couple months of Jack's life were difficult. I can't speak for my ex-husband, but I can speak for me.  There is nothing I would change about my Jack.  I strongly believe that God made him the way he is.  I have been asked if I would have aborted him if I knew - of course not.  Yes, there are challenges to this life and many obstacles, but I fell in love with Joseph Steven McKenzie at 4:51pm on June 22nd, 2009.  I remember holding him in my hospital room that night all alone and weeping cause I couldn't believe how much I loved him.  That didn't change when we found out that he had Down Syndrome.  The first few months were spent in and out of the hospital (he had duodenal atresia repair), and figuring out therapies.  The 1st year was rough - croup and RSV and hernia repairs.  Shortly after Jack's 1st Birthday, my ex left.  This past year has definitely been a hard one.  I have been a single mom for 9 months now.  I work full time in Clinical Resarch in Oncology and Jack goes to an incredible day care.  We just moved into an apartment and are doing just fine.  Jack gets speech, OT and PT every week.  He will be 2 in just under 2 months.  I can't believe it.  I can't believe how quickly he has grown and how our lives have changed.  It's just him and me.  I have sole custody.  I wish he had an active father and that I had a partner, but it's just us.  And we do just fine. Jack is doing many things - signing all the time, crawling, cruising, trying to self feed w/ spoon and fork, saying uh-oh, bye bye, and ball occasionally.  He is my little sweetheart and if anyone is reading this who just started their journey wiht their special child, be encouraged.  The road is different, sometimes lonely, but you are in for a life full of blessings.  One day soon you will not see the diagnosis, one day soon you won't worry about what people think, and one day soon - you will get in your own routine with therapies, dr. appts, and it will become normal life for you - and the best part - you have been given an incredible gift. One that will not only change you, but so many others as well.  So, that's us.  Me and Jack - in the midwest - pretty much attached at the hip most of the time.  I am incredibly blessed to be him mom.
 Here are some pics from bathtime tonight :)