Thursday, November 17, 2011

Wednesday, October 26, 2011

Lesson 596 that Jack has taught me

I know for many of you who don’t have kids with disabilities you look at our life and wonder how we do it. It’s like breathing to me – don’t even think about it. And honestly, I feel so incredibly blessed. I am not shy about sharing the ups and downs of our lives, and I share triumphs and struggles pretty equally. But I must say, that every single day I thank God for my son. I thank God that he made him the way he is – and still the battle continues. It’s difficult some days knowing that because your son has one extra chromosome he has certain medical problems. That because of one extra chromosome people look and treat him differently, that because of one extra chromosome he will most likely develop alzheimer’s in his 30s. There are many things about Down Syndrome that are hard. And then there are things that are huge huge blessings. And the mix of the 2 makes our life unique and precious and teach me levels of love that I didn’t know existed.






Over the past few weeks, Jack has had some trouble breathing at night. He wakes up gasping for air – we dart into his room and hold him. Daniel and I both are shocked to our core and immediately hold on to him and bring him to bed with us. Putting him back to bed is not easy. The monitors are up as loud as they go and those nights we barely sleep. I looked at D last week during one of these episodes and said “this is one of those moments when I hate Down Syndrome”. That was true. I knew that one extra chromosome caused smaller airways, an enlargened tongue, touching tonsils, etc. And even still in those moments – we will go to dr and see what we can do to help jack breathe easier (ie – surgery in a few weeks) - I still wouldn’t change my son. I believe that God made him the way he is without flaw and purposely. And I believe that in the midst of the hardness and struggles that having DS brings - there is purpose.






Purpose revealed:


We teach Jack signs. He signs a lot. He babbles and can say some words. For example he signs “please” and makes the “ss” sound when he says it – pretty cute. He signs and says “Dada” clear as day (my heart melts each time – so grateful he and Daniel love eachother so well). He signs and says “doggie”. He makes the “p” sound for “play”. I could go on and on – he is trying to communicate and he does communicate. I am still waiting on Momma. I get it a couple times a week – sometimes every other week, and when he says it I could cry each time. Not sure why I am being made to wait for it – but I am. So I will wait. We started teaching him to sign “I love you” with one hand a week or 2 ago. He signs it with his index and middle finger up – giving the peace sign – quite appropriate for I love you I think. It’s the cutest thing. We say I love you Jack and he signs back with his hand I love you. Most 2.5 year olds can say I love you. Micah says I love you to Daniel. I wanted to communicate this to Jack and him to be able to communicate it back. Over the past few days, he has been trying to say it. He says “woo woo” with his mouth practically closed as he signs it. It is the sweetest thing ever. We both smile and laugh when he says it cause it’s so cute. He has the sweetest voice and disposition and seeing and hearing him say those words makes me melt. Yesterday after getting home from work we sat at the table to eat dinner after me trying to get him to walk, just me and Jack. (We have been working on walking for a while – and Daniel and I are both ready and eager for that day.) OK Back to the ‘I love you and momma’ - We were eating and working on different words and I was telling him that we had to work on walking - he was being silly listening to me babbling on. He said momma a few times and kept trying to say “I love you”. I wouldn’t trade that moment for anything in the world – not even a clear “ I Love You”. “Woo woo” is perfect. He has said it a few times, but the timing during dinner was perfect. I hugged him and thanked God that I have such a sweet boy. I keep thinking about it today. I keep thinking/wondering if he knows what he is trying to say. I hope we are showing him a good example of “I love you”. I’m so thankful for my baby boy. I’m so grateful our life is slower. I am on his pace now and when ‘typical’ kids are around I feel so rushed cause I am so used to slowing things down for Jack. I love our life. I love my son. And the ebb and flow of the struggle with DS will continue. I’ll curse and be mad and then God will remind me of the incredible journey I am on and the blessed life I get to be a part of. So grateful. My cup overflows over and over again with love for him. I can’t imagine him any different, nor would I want to. And so grateful Daniel is willing to slow down with us. Jack has taught me so much. He has taught me that the things many people hold dear, myself included, aren’t dear at all. It doesn’t matter if you walk or talk 1st, it doesn’t matter if you are the cleanest eater in the world or if you know how to play appropriately with a toy as soon as you see it – love is the most important. Smiles, Laughs, enjoyment of those you love. Jack loves 1st. He’s not bound by what people think of him or what he should or shouldn’t be doing – he want to laugh, cuddle, enjoy. He doesn’t care if he gets food all over him when he eats or if his splashes in the tub get someone wet – and I don’t care either. I bring extra clothes cause I know he’ll make a mess and when he’s in the tub I let him play and worry about the mess later. I let him go down the slide face 1st cause that’s the easiest way for him and casue it’s not hurting him or anyone else – I let him do that even if other parents tell their kids no. Why should I make going down the slide work for him or hard on him when it’s play time. Why is there an appropriate way to play? Some things are just more important. I feel like he knew that communicating ‘I love you’ was way more important than walking (which is what he have been working on for months). And once again, my son has taught me a valuable lesson and a deeper meaning of love. And once again reminded me that yes – the medical stuff is hard – but the love overrides all of that. And that sometimes the balance between work(learning to walk) needs to wed with more love and more enjoyment and more patience. So we continue on our journey…

Monday, October 17, 2011

I only write once a month really now. Life is too busy to write more. And my free time would rather be spent with the most wonderful man and boys in the world. Jack is doing pretty well. We are still working on the amount of food to give him and when to stop. This is really hard. For parents of typical kids, I assume you know when your children are full cause they tell you- or same thing when they are hungry. But with Jack he can’t communicate and honestly I am not sure he knows. I am convinced he thinks he is hungry all the time. We try not to eat unless he is eating and space out his portions so they last as long as we the time we are eating. But my heart breaks when he wants more and signs “more please” and I have to say no cause I know he’s had enough and then he starts crying. So very hard.


Walking – we are getting closer, if he could keep his upper body from propelling forward then I think he would be walking. It’s basically the balance at this point that is holding him back – so we keep trying each day. Soon. Soon he will be walking and I will be missing seeing that precious bear crawl.


Talking – we are teaching new signs each week – this week we are working on “help” and “soup”. I choose signs based on what he needs to communicate. So to me – teaching colors right now aren’t as important as him telling us he needs help…and soup came from the fact that I made a huge pot of chili yesterday that we will be eating on all week – so he needs to know what “soup” is. There is no sign for chili that I have found  Jack still says words and tries to imitate just about anything you say. I love his sweet voice. My heart melts every time he says something. We have taught him the sign “I love you” and it’s absolutely precious.


The 1st bit of chilly weather has come through brining congestion and a couple sleepless nights. I am pretty sure he might have sleep apnea and am hoping to get him tested soon. He wakes up at night wheezing cause he can’t catch his breath. It’s the scariest thing in the world. We are trying a humidifier which is what I have used in the past, but it still seems worse than it’s been in the past. I am terrified we won’t hear him one night – and he doesn’t know how to help himself at this point. I know it’s a mixture of tiny air passages, congestion and enlargened tongue. Friday night when we brought him in bed – Daniel was holding him after an episode and I said, “there are moments when I hate Down syndrome”. It’s the medical part of it that sucks. When you know that if his tongue wasn’t bigger he wouldn’t try to swallow it – if his airways were larger he wouldn’t stay congested – and you know those 2 things are because of a freakin extra chromosome. Those moments are hard. And I try to remember that it could be so much worse, but when your child is having a hard time breathing – it’s hard to be rational.



Which brings me to another point – the wonderful man, dad and help Daniel is. I’ve never had anyone wake up with me when Jack is sick, or having a hard time breathing, etc. Daniel has been incredible. He loves Jack. He. Loves. Jack. I can’t tell you how incredibly happy this makes me. I love that he accepts Jack as he is – pushes him to do things and at the same times understands that some things are going to take longer. I love that he plays with him, wants to cuddle with him, and talks with me about ways we can help him. I love that he isn’t embarrassed of him and doesn’t make excuses. I love that he doesn’t baby him but also knows when he needs a break. I have never had this. Jack has never had this. I wish I could put into words how wonderful he has been…but I can’t. I feel like he should have been Jack’s dad all along. And I love him so much. I feel so blessed. I am so glad Micah and Jack have Daniel in their lives. What a blessing for them. And I am so happy I get to watch them get to experience the love of a dad in action. So amazing. We get Micah this Friday and I can’t wait. I love to see him and Jack play and I love to see Daniel with both of them. It’s nice to be so happy and content. Very grateful.



Here are some pics from this past weekend:



D and Jack having some pancakes Sunday morning – such piggies.




Jack sporting his Cardinals hat!!! GO CARDS!!!!! I can’t be we are World Series Bound!!! WAHOO!!!






Jack with the neighbors – Mattie, Amber and Jamie – love the neighbors around us. All of them have been so wonderful. And Jack has so many ladies to choose from!

 


D being Silly with Jack


Have a great week!!

Wednesday, September 28, 2011

An update finally :)

September 28, 2011



I can’t believe it’s been a month since I have updated this blog!! I assure all of you we are doing just fine. Thank you for your facebook messages and emails checking in. The wifi at the new house isn’t that great, so it’s hard for me to get online and there is only so much I can do on my iphone. This will be a lengthy post since it has been so long since I have written anything. So…here goes.


We left St. Louis Labor Day weekend to begin our new lives in PA. Bittersweet doesn’t even begin to describe the emotions surrounding our departure. In the week that we left we said good bye to therapists, co-workers and friends, friends that have become family and a familiar life and city.

Girls from work - greatest CRAs in the world.  Love and miss all of you!!

Jack's therapists, an emotional night:


Last girls night at Chava's:





Jack and Uncle Chad:


And Jack and his beloved Lo Lo - leaving her was the hardest part of our move by far:


 I never thought I would be a city girl, but I must admit the conveniences of a large city were nice. I miss the city and the people very much. I would give anything to sit on the couch with Lo and Chad or walk around West County Mall or go get some FroYo. PA is quite different. It’s gorgeous for one – St. Louis is all city – not much landscape, so being in a city filled with green, mountains, fields, smaller buildings is quite nice and reminds me of home (TN). Jack has adjusted well to the new atmosphere. He has grown to love the dogs and when we are in the car he just stares out the window. I think he is completely taken by the cows and corn fields and lack of pollution - lol. Def pros and cons to every place. He is at a daycare during the day and so far seems to really enjoy it. Of course, I call non stop to check in on him, but he seems to be happy so that’s really all that matters. Living life with someone again is odd and good at the same time. It’s weird, but I feel like we should have been doing this all along. We, Daniel – Micah – me and Jack – are a little family. When Micah isn’t around and is with his mom it feels like something is missing and when he is around the puzzle is complete. The boys are a riot and I give props to you moms out there with multiple kiddos. We are exhausted after a weekend with 2 two year olds.

Painting - complete mess:







And learning how to discipline and love them equally is not always easy – well loving them equally is, but the disciplining is hard and something D and I are learning to navigate. And while it’s so nice for Jack to have a brother and someone to teach him things, it’s hard. It’s hard because Micah talks and walks and says “daddy” and “I love you” and “my tummy hurts”. Jack communicates but it is very basic. “More, All done, Hi, Bye, Eat, Drink, Food, Banana, Ball, Play, Please, Thank you, Chicken, Candy, Cookie, Cracker, Fruit, wash, etc” These are the words/signs that are used most frequently he uses to communicate. So when I hear sweet little Micah’s voice tell Daniel that he loves him, a war goes on in my soul. I am completely mush at hearing how much he loves his daddy and how much his daddy loves him and I am jealous as well. I know Jack loves me, but I can’t wait to hear the words. I can’t wait to hear Mommy all the time. I find myself longing and yearning more than ever when Micah is around – not yearning for Jack to be different – but yearning for the day when he and I can communicate with Jack like Daniel and Micah do. I know it will come, but being hit with it right now for the 1st time really. It’s hard. Lots of tears and prayers.

 I met with a new PT last night and she was great. I think she will do a wonderful job and I think Jack will love her. I meet with a special Instructor/speech Therapist next week so we will see how that goes. So much newness and change. I miss my girlfriends. I really really miss my girlfriends. I miss going to Jamie and Eric’s and talking on their floor while the kids tear up the place. I hope and pray for friends like them and so many others here in Easton.


And I thank God every single day for bringing me through this past year. Do you realize that a year ago right now – Sept 2010 – I was barely holding on? I was relying on my friends for their hearts to give, cause mine was completely broken. My life had shattered in a million pieces and I wondered if I would ever be happy or content – if we would ever find love – if I would be on this journey alone – and look what God has done. He has truly binded up my broken heart. I feel like I should write a book. I wish I had words to express my gratitude to all of you who held my hand, played with my son, hugged my neck over this past year. My cup overflows over and over again with love for all of you and gratefulness for all you have done. Jack and I are better people because of all of you.


And my sweet Jackers. He is starting to test his limits and get into mischief. It’s funny, hard and good at the same time. There are moments when I have to turn my head to laugh cause his madness is funny. There are moments I want to run away cause I don’t know what to do or because I am tired of hearing “aaaah” and there are moments when I am so glad he is being defiant cause it’s a sign of progression and understanding. However, I am used to doing – disciplining – all alone and while it’s nice to have help it’s also hard to accept help. If Daniel looks at Jack wrong, Jack puckers out that lip and starts crying and the mommy in me wants to grab him and hold him tight. He isn’t used to a man or a man’s voice – and I want to comfort him. So finding the line and boundary there is not easy. Lots to learn here. Lots to think about and lots to adjust to. But we are happy and are a family and are truly blessed to be where we are and be who we are with. Daniel is an incredible dad and man. He works so hard and is so thoughtful about how he parents and how he loves. He makes me laugh every single day and accepts and loves all my goofyness. I can't believe how much I love and care for him.  In love doesn't begin to describe how I feel. 

Jack attacking D - he loves his wiskers :)



This past weekend we were on the couch holding the boys and Micah was talking away. I started crying. Daniel kept asking what was wrong and finally I said, “I wish I could talk to him (Jack)” I cried and cried and squeezed Jack. Daniel said, “you have an amazing son and he will talk to you soon and he knows that you love him and he understands the things you say. He will get there” wow. Thank you God for a man like him to speak and say those things to me when I need to hear them. And then he hugged me and told me he loved me and Jack. Graciousness. Humbleness. Love. Peace. This is our life. This is what I have prayed and longed for. Now if only I could find some girlies to dance and drink margaritas with!! ;)

Sweet boys and the dining room that we made into a playroom - what in the world would we do with a dining room - it would just collect dust, so playroom - welcome.  Lots of laughs and blood and scrapes and pee and poop will be had in you :)



Monday, August 22, 2011

So Proud

I haven't written in a while - been pretty busy I guess.  But I just wanted to say how proud I am of my son.  I was thinking back to a year ago and how much he has grown in the past 12 months.  Did you know that one year ago he couldn't sit up on his own without support?  And now look at him - almost standing.  He wasn't saying any words and now he has many.  I just can't believe how much has changed in 1 year.  I keep thinking about the future.  I read articles like this one:
http://www.postandcourier.com/news/2011/aug/21/disabled-reach-college-dreaams/


And I am inspired.  I want so much for my little Jack and if the past year has taught me anything it's that he is 100% capable  - not that I ever doubted that.  And even if he weren't doing the things he is doing now, I would still be proud.  We celebrate the big things like most people, but sometimes the "little" things  - like waving bye bye or picking up food or recognizing your name are much bigger to those of us with children with special needs. We wait so long it seems to see that wave of a hand, or hear mama, or the ability to hold a bottle or cup.  But it is worth the wait for sure.  The journey makes the result so sweet.  His sweet little voice brings tears to my eyes every time he tries to say a new word. And when those little chubby wrists and stubby fingers wave bye bye something happens inside me.  My heart skips a beat...smile takes over and pride fills my soul.  I am proud of him.  I know how hard he works and I. am. proud.    I can't describe the love and honor I feel as his mother.  This weekend Aunt Lo LO and I took him to the mall with his gait trainer to practice walking.  That would embarrass some people, but I was beaming with joy and pride.  I didn't care nor notice if people stared in a weird way - I was way too busy being in love with my precious sweet boy.
video
I literally cannot describe how crazy I am about this little man and how each day he brings a smile to my face.  I am truly truly blessed and could not be more proud.  My only regret so far is that time is going too fast.  Needs to slow down. 

Sunday, July 31, 2011

Question

Hello dear friends.  I have a question for all of you who have kiddos with DS.  Does your child always seem hungry and never seem full?  Jack is very active and I know he gets enough to eat, but he seems to want to eat all the time.  He gets upset when eating time is over.  His basic diet consists of: homemade whole grain blueberry pancakes - no syrup, bananas, oranges, apples, strawberries, sandwiches, goldfish, chicken, turkey, pasta, peas, carrots, and lots of other normal things. I try to make sure his portions are correct for his size and weight and I know he gets enough food.  But I wonder if he lacks the ability to know when he is full. I have been researching this online and haven't found much to help me understand.  When we are at the grocery store he goes nuts, wanting to eat everything in the buggy.  He will sign every food he knows and fusses when i don't give in.  Same thing at home   - I've had to gate off the kitchen cause he will go in there and beat on the fridge and pantry.  This could be typical 2 year old behavior but I am just not sure.  Any thoughts?  I have read that people with DS have a lower metabolic rate and therefore need less calories to avoid obesity. It's so frustrating and since 90% of the signs and words he knows have to do with food I also wonder if he wants it all the time because that's what he knows to communicate.  We, of course, work on tons of signs and words, but I feel like if I had an explanation I would feel better and not like such a poopy mom.  Any thoughts, ideas, similar experiences?  Feel free to throw anything out there.  Thanks!!

Thursday, July 21, 2011

Moments

There are moments, words, phrases that stop you right in your tracks occasionally.  Sometimes they are good making you feel incredibly grateful...others are very sad reminding you to be strong and then there are the few that seem to do both.  I've had 2 moments like this this week.  These are moments you don't plan and definitely don't see coming.  They tend to take your breath away and teach you a lot.

Moment 1:
One was a patient - a man in his 70s - told a week ago that his cancer was curable, but this week another spot was found - and this one spot meant that he was looking at a year left on this earth.  He and his wife have been married for 51 wonderful years as he put it. She wailed, she sobbed and he held her and said, "honey I love you - we are going to be fine".  I tried not to cry.  I did though. When you are in the presence of such love and care, how can you not.  They wanted more time together after 51 years.  They couldn't imagine only having 1 year left.  Damn cancer - we hate you.  I left clinic that day and cried and cried.  I envied their life long love and learned an important lesson from them - True love never ends.  True love does stand the test of time and illness. True love never fails.   I was honored to see their love - to feel it and I can only hope that life leads me in that same direction and I think it is.


Moment 2:
Girls night with my married moms.  My other girl friends aren't married - hence the "married moms" title.  It's a blessed group.  We've only been able to get together a few times, but the times we've had have been wonderful - a blessing.  Tears have been shed, hugs have been given, prayers have been prayed and then there is much much laughter and joy.  We share our funny stories, sad stories and each time when I leave or they leave I feel lifted up in some way - overjoyed that I have such wonderful women in my life. Last night we all got together.  We said good night to our littles and opened a bottle of wine, baked brownies and sat around in our pjs to talk about life.  The moment that came wasn't from these glorious women.  It was from the offspring of one of them.  Sweet little Shepherd.  (Lindsey I know you are holding your breath right now - but let it out - it is good).  Shep was talking with me and Jack right before I put Jack down.  We were just playing  - talking about wish lists, super heroes, etc and he was hugging Jack non stop as Jack was so kindly swatting his hand away.  A very playful, fun interaction.  And then out of the blue, Shepherd looks at me and says, "does he have a dad?"
Wow.  Silence.  Take a deep breath.  Don't cry.  seconds passed that felt like minutes and I finally responded - Shepherd said OK and went back to playing like it wasn't a huge question - kids are that way.  It was just a simple question for him and I felt like he just wanted to be sure.  God the Father? was Shep talking about him - no he wasn't - he is 4.  He was thinking "I always see this woman with Jack, so where is Jack's dad?"  9 months ago that question would have sent me to bed bawling out of shame, disappointment, fear, anger and hopelessness.  I wouldn't have been able to answer.  I would have squeezed my Jack reminding him that I would try to be both.  I would be mom and dad and that I was so sorry.  Jack does have a biological father, but a dad in the way Shepherd was asking - no - he didn't, not until recently.   But look at what a year has brought.   And so I answered in confidence - "yes, yes he does.  His name is Daniel.  And he loves Jack very much".

2 very different moments, but very special ones I will not soon forget.

Tuesday, July 19, 2011

Officialness

Lots going on in our little lives.  Jack and I will be moving to Easton, PA in 6 weeks. WOW.  I am really going to miss St. Louis -I love my job and have great friends here, but alas - love has called. I have just let my work know in the past week and now am on the hunt for jobs in Easton (hint hint - if any of you have connections).  I am very ready to begin a new life with a fresh start.  We will soak up our last weeks here -dining with friends, playing in the pool and trying to eat at every restaurant we love in the city.  Froyo - Chavas- PI - Ted Drewe's - Mi Ranchito - the list goes on.  When I moved here I was a very uncertain, self conscious 20 something.  I couldn't be more different.  The big city has toughened me up.  So much has happened since I moved here.  I have grown and changed a lot.  This city has brought both incredible joy and incredible pain.  We start a new journey and though sad to leave, I am thrilled to begin new.  Friends I have made here will continue - I could never replace them nor let them go..they are family now - stuck with us forever.  Lots of newness coming our way - new friends, new city, new house, new job, new therapists, new doctors, etc - things to completely overwhelm me when I think of them, but I know they are all very good.  And love waits for us in Easton.  And so we go.  Jack will most likely learn to walk there and run and play sports in that small town - he will learn what cows and horses are - and most likely won't hear many gun shots.  My favorite part is that Jack will have a brother and a wonderful man for a dad who is already crazy about him - tears roll even as I type those words. God has been gracious to us - very very gracious.  It will all be good - I am certain of that.  Wish us luck and keep us in your thoughts as we pack (hate!) and adjust to lots of change.

Sunday, July 10, 2011

Answered Prayers

For those of you who have followed this blog for the past year, you have witnessed a roller coaster ride for sure.  This post will be a little more about our family and a little less about Down Syndrome.    In September Jack and I were officially a couple.  A couple surrounded by wonderful friends who walked us through this past year.  Prayers have been prayed for security, peace, healing, hope, energy, life, forgiveness, wisdom and many many more things.  I have prayed a lot...A LOT in the past year.  And I started a tradition with Jack each night that I hadn't really done before it was just the 2 of us.  I changed our bedtime routine.  Our routine now is to read, sing songs, and pray.  And in every single prayer I have prayed that God would reveal himself to my little Jack, that he would give me wisdom in the choices I make for us and that he would bring a daddy for Jack who would love him without condition and love me as well.  I remember telling my girlfriends how hard it would be for a man to step into this situation.  A single mom with a child with special needs.  It seemed impossible. In February I reconnected with an old friend from High School.  We have been in contact ever since and have visited one another and it's safe to say that what I thought impossible has been made possible.  Jack and I went to visit him and his son last weekend and had a blast.


And here's one of the 4 of us:
Gratitude doesn't begin to describe how I feel.  I am sure more pictures will be posted and more updates, but for now I'll just say that Jack and I have been blessed and prayers have been answered in ways I didn't think possible. And little Jack is doing wonderfully.  We have braces, tubes are getting placed on July 25th and his words, signs and gross motor are coming along quite well.  I couldn't be more proud of him. 

Friday, June 24, 2011

Sweet Connections

Friday – lunchtime at work – went with the girls to sit outside. I love my co-workers. Each of them are wonderful and kind and hard workers. I am very blessed to work with such great people. We work at a Cancer Center and all do research for cancer patients – the campus we work on is quite large. It’s a medical school and hospital. On our way back to our building, I noticed a beautiful young lady sitting outside with what looked like her mom and another family member. Immediate connection. I know those slanted eyes. I know that smile and that nose and small hands and short legs. I know that disposition. She has DS and I had to talk to her. She had a tracheal tube because she has ARDS – a respiratory illness – and they had just seeing the doctor. I found out that she is 22 and loves to swim. She has a boyfriend named Mark that she loves very much. I told her how much I liked her pretty pink shirt and she responded, “you are too kind”. She was precious. I hugged her and showed pictures of my little Jack on my phone. I was so proud. Her mom told me how blessed I am to have him and that life is going to be filled with moments of overwhelming love and joy.



I can’t tell you the immediate bond I feel when I meet a family like the one I did today. Kindred spirits. We immediately know and share a crazy love and story. We know the challenges each day can bring and I could tell that this mom and I have the same outlook – there is more good than bad. MUCH MUCH MORE. And I could tell by the look in her eyes how much she adores her daughter. I love being a part of this little group of people. I love meeting eyes with another mom of a child with DS and “knowing” everything with one glance. We have both cried, laughed, prayed, labored and fought for our children on a daily basis. We have had sleepless nights worrying about therapy and medical procedures. We have cried when someone has said something offensive and we have worked endlessly each day to make sure our children know how incredible they are and how much we love them. I may be “all alone” in St. Louis, but when I meet women like her, I am reminded of a much larger family that we are a part of. It’s an honor to be a part of this family and I wouldn’t’ have it any differently.

Jack and his buddy Andrew



As parents of kids with disabilities we have a choice to make each day. To live life to the fullest, enjoying our children and celebrating the things that they can and will do or we can mourn something that we can’t change. I love my son and I choose to celebrate his life and his extra chromosome. There are def days for mourning and sadness, but those get less and less as the days go by. Most of our days are spent with much laughter and over-flowing love. If you are a new mom – be encouraged. You are in for an incredible journey – let yourself enjoy it.


Here is Jack with 2 of his buddies: Aiden and Andrew






PS – Jack turned 2 this past Wednesday!!!!!!!!!!!!! Birthday party tomorrow. Can’t wait to celebrate his life with many close friends!!

Wednesday, June 15, 2011

Overflowing

Watching Jack play tonight...he went from signing "water" cause he wanted some of mine, to pulling up to shelves to get toys, saying "bubbles" - bringing me the container of "bubbles" and then saying "open" - to bouncing a ball with me in the bathroom - cause the bathroom floor is the best place to bounce a ball apparently and who am I to argue with that :) - we worked on "1,2,3, Go" for getting him to bounce the ball - he knows and uses the sign for "go" but I just started introducing numbers and he is already - after 1 day - trying to imitate me with his little fingers.  You can see him concentrating so hard to try to count 1,2,3 like Mommy.  It's so stinkin cute and tonight I welled up watching him  My sweet boy.



Then bath time followed by books.  He signed "book" brought me 2 books and then said "open" - then he signed "twinkle twinkle" and we sang - and then he signed "spider" and we sang the itsy bitsy spider - then he crawled to the kitchen signed "milk" and "cracker".  So we ended the night with milk and a few wheat thins. All of the things above he did on his own. I basically followed his lead and I was completely and utterly overwhelmed.  My eyes filled with tears many times cause I am so stinkin proud of him.  He is communicating with me non stop and I love it - I am beaming with pride and joy that he is my son.  I love sitting back and watching him - I love that he looks for something that he wants, remembers where it is, finds it and then brings it to me.  And I really love that when he signs "twinkle" or "spider" that he insists on being in my lap, cradled in my arms - cause  momma's arms are the best place for songs.  He will be 2 in one week.  And the past 2 years have been the biggest blessings of my life because of him.  There has been a lot of pain too, but so much more joy.  I love, love, love my sweet, adorable son.  No one will ever be more proud than me of him.  I know he will do wonderful things.  I know that our life will be good.  I have the most wonderful 2 little hands to hold, and sweet face to kiss - my cup completely overflows.

Thursday, June 9, 2011

Talking and Signing

Click on the link below to see Jack talking and signing. I am so stinkin proud of him!!!

YouTube Video of Jack talking and signing

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 :)

Tuesday, April 19, 2011

An overdue update

This will probably end up being the most random post.  I haven't written in a while and a lot has happened.

So I'll start with I turned 29 on March 20th.  Unfortunately many of my friends were out of town, but a few were still here and I desperately wanted Mexican, Margaritas and dancing.  So they delivered:





It was quite fun to go out - get dressed up, eat fabulous food, have a few margaritas and dance. I won't tell you that I danced a group of girls who were 22 or that the oldest person on the dance floor besides myself was 26...that would be too embarrassing to tell :)  I needed to cut loose though.  I love to dance, and I only get to do it once in a blue moon.  I think I will make it a tradition each birthday - Mexican, Margaritas and dancing. 

You can also see that Jack and I moved.  That was in my previous post.  I like our place - it's cozy and feels like home now.  I am not sure how long we will be here but for now it is good.  Jack is doing wonderfully.  I think he will be walking soon.  He is cruising quite well and his signing has really taken off. I am out of signs to teach him, so I am working hard to learn more.  He is also verbalizing a lot more.  He says "mom" and "uh oh" regularly now.  It's the cutest thing in the world!!!

We went to a luncheon at the Pujols foundation a couple weeks ago.  It was a luncheon for moms who have kiddos w/ DS under the age of 3.

Here are some photos from the event:






As you can see from the above pictures, there were many women there.  They provided childcare - which was great and Jack basically had a room full of women - college women - at his disposal. Needless to say he was in heaven :) 

The event was truly wonderful. I loved meeting other moms and hanging out w/ Barrett.  Hearing Deidre Pujols' story was incredible as well.  She has Isabella, their daughter with DS, when she was 20 I believe.  She met Albert when Isabella was only 8 weeks old.  If you haven't seen his interview on 60 minutes you should watch it:
http://www.cbsnews.com/video/watch/?id=7362328n

Anywho she talked about the struggles and joys of having a child w/ DS.  They also have 4 other children.  There wasn't a dry eye while she was talking.  I was quickly reminded of the bond all of us moms of kids w/ DS share.  We share a very unique thing and very unique love.  At that moment I felt so close to all those women and so grateful to be a part of such an elite group.

When I got home though, I cried.  I cried and cried and cried.  I am pretty sure I was the only single mom there.  Women talked about how supportive their husbands were and involved they were as dads, and I couldn't say any of that.  I hate that for Jack. I know everyone says that he will get what he needs from me, but we all know that a boy having a father is extremely important.  And I will do all the boy things.  We will play ball, wrestle, and I'll even spit like a man if I have to, but I hope one day a man enters our lives and I walk into the room to watch them working on swinging a bat or wrestling on the floor or even just reading a book. I want that for Jack.  I want that for us.  I am so blessed to have him in my life and to be a part of this elite circle of people.  I have no clue what the future holds, but I know that Jack and I will smile often and laugh tons and the love that will be in our home will be never ending.

He has started singing on his own and  it's the cutest thing.  I will see him in the car and he is making noises but doing the motions to itsy bitsy spider or twinkle twinkle. I can't believe how freakin smart he is.  Sometimes I am just blown away.  He lights up every room and totally fills my heart with joy. 

So, that's us.  I also started a new job.  I started working for the Siteman Cancer Center yesterday here in St. Louis. I am a Clinical Research Coordinator for Phase 1 Clinical Trials.  I am soooooooooo excited to be in this job and love it already.  It is hard seeing the patients in such difficult circumstances but I truly enjoy talking with them and I know I will enjoy being a part of their lives and hopefully make the journey a little easier by communicating and loving well. 

I also visitied an old friend this past wekeend which was wonderful.  A much needed break for me. 

Ok, so that's the long and short of it. Life continues here in St. Louis and my little munchkin is my heart and soul. Thanks to all you DS moms for sharing your journey's through blogging and for reading mine.  You have no idea how grateful I am for all of you.  Big Hugs!!!

Monday, March 28, 2011

Newness

A quick update about some newness in our lives.  Jack and I moved into our new place this past weekend - love it!  Felt good to be out of the house of lies as I have been calling it.  I bought new sheets and new bedding, new towels - just wanted a fresh, clean start.  We have a nice deck where we will grow some tomato plants and peppers this summer and of course grill often!  Neighbors are nice and Jack is loving exploring every inch.  It was a fun weekend for sure. Enjoy the photos:

The Living Room

I want to get a clock to go on the wall between the shelves










Still working on the kitchen.  Going to get a round mirror to go on Brick wall and gotta figure out something for the wood paneling.


Need to paint my chairs - will wait for warmer weather.



hallway



My Room







Jacker's Room












Bathroom - gotta love the blue toilet, huh :)

Back to living room - leading to the deck

I do like it - it's cozy and nice. I just can't think about the fact that I am 29 and living in an apt again.  But for us - right now - it makes total sense.


Other news - Jack is starting to cruise!  Literally Sunday morning (we moved in Sat) he started cruising from chair to chair...I freaked out - so proud of him. He is really taking off!!

And I got a new job!!!! I have been praying - as well as many others - for a new job at Wash U for quite some time -months - maybe a year even, and I was offered a position in Oncology on Friday. I will tell more details later.  But I am excited and can't wait to share more later.

Happy Monday!!!!