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.