Dreams can come true.

Happy National Down Syndrome Awareness Month!  

April 18, 2009. 

The day our Down Syndrome journey began - though we had no idea.  The day Lincoln was born was the day that changed our lives.  Our first child was born.  We had new responsibilities, new rules, and a new way of doing things.  HE - CHANGED - EVERYTHING!   Lincoln was an easy baby.  He hardly cried, had lots of smiles, and knew his nights from days.  He drank and burped, soiled his diapers, snuggled and loved way beyond what I thought was possible.  He grew, and he hit milestones.  Life was good.  A vivid memory that always stands out when the struggles started - was the question  "who's eyes does he have".  I now know why this question was asked so often at our numerous clinic visits.  It wasn't until we were referred to a pediatrician that we would discover the miracle that God has intrusted us with.  God has a creative way of working in us.  When Lincolns blood work results came in and how everything happened so quickly. *A Down Syndrome diagnosis, *pneumonia that was present the next day, which lasted *5 nights at the hospital on oxygen, the discovery of the *holes in his heart resulting in pulmonary hypertension - to the day he had *heart surgery... (and this all happened in the time frame of one month - around Lincoln's first birthday). I often think about that time in our lives.  Whatever God's reason behind all of this - He did it right.

We don't see Lincoln as a syndrome.  We see him as a child.  He isn't sick, there isn't something wrong with him, and he does not suffer. He is our first born, and we love him just like you love your child.  Yes, he has Down Syndrome, but that is not who he is.  
I have a dream. A dream that you will see Lincoln as a boy first - instead of the syndrome. A dream that when you see him, your first instinct wont be pity for him or his family, but a smile - to share the joy in the gift we were given.  I have a dream that by sharing Lincolns story I can help you understand that a label can't define him. 
There is so much to celebrate about Lincoln - I decided to do a whole month of it instead of my regular November 1-7 (which by the way is Canada Down Syndrome Week)   Please celebrate with me.  Leave a comment on how Lincoln has touched your life, or share an article.  Lets help raise awareness.  Dreams can come true.
 

First Day Blues...

 I had a case of the First Day Blues....

The time had come. I thought I would be fine. I thought it would be just like dropping him off at daycare. I thought i was ready for this. I thought people would care for him the way I cared about him. Truth is - I wasn't ready. Truth is - people need to 'know' Lincoln before accepting him in a way I am comfortable with. Truth is - I felt alone, and feeling sorry for myself... and all i kept wondering was ... WHY? 

My day started off as usual. 7 am wake up, breakfast, packed a lunch, labeled everything of Lincoln's, double checked everything including bus pick up time and location. He had a bath, bushed his teeth and combed his hair. Then it was time. I brought Lincoln to the bus stop where he would get on the bus with a group of older kids. 2 other moms waited with their kids who were much older than Lincoln. One of the older children was asked by their mother to be Lincolns bus buddy on his first day - in which she rolled her eyes and did a gasp of annoyance - but agreed. While waiting for the bus, the other kids casually threw the "R" word around like it was part of their regular vocabulary. This.Hurt.Alot. Not only was I sending Lincoln on the bus for his first day at school EVER, but I was sending him on the bus with kids who threw his 'medical' term around like it was nothing. I was sending him on the bus with someone who didn't really want to be his bus buddy. BUT, he hopped on the bus, and didn't look back. I dashed home and jumped in my car... yes, I am one of those moms - I followed the bus....
watched Lincoln get off, and saw the special ed coordinator see Linc, take his hand and guide him out of my 'being a creeper in discuise' site. I assured myself he would be fine - to my knowledge, yes, he was being taken care of.... And then there were waterworks. My entire day was filled with emotions. But that's normal - right?? 

Trying to pass time... Parker and I met a friend, and went out for breakfast. We went to the grocery store. We did puzzles, played games, read books and did anything to keep both of us busy and off of each others nerves. tick tock . WAHOO its 3:10 !! I leave to go pick Lincoln up. He could have taken the bus home, but I need to build a good relationship with his teachers, and for my own peace of mind, need to know details of his day - which I was welcomed to do. I was a little late after being un successful finding parking, didn't have a chance to talk to his teacher, and ended up meeting Lincoln by his bus. He greets me with a huge smile. I pick him up, hug him and snuggle his face off... and I feel that his pants are wet, and he smells like pee.... 'insert water works here' ...again. Lincoln IS potty trained. He DOES know when he has to go to the toilet. But, he also DOES have the odd accident... so I take a breath, and let it slide. Busy day for the little guy. I can understand.  We get home, and he didn't stop blabbing - talking way too fast we couldn't understand what he was saying - now that... is obvious excitement!!! I un packed his backpack, take out the notes and lunch pail - only to find it is still full of all the food I packed him. We had been practicing eating sandwiches, and other packable lunch items like strawberries, goldfish, and pepperettes. All he ate was the pepperette. He didn't seem phased by it, but grabbed the goldfish out of it when we got home. Packing Lincolns lunch was something I had been pondering over for quite some time. Anyone who knows Linc, knows he doesn't just eat EVERYTHING. He doesn't do cookies or granola bars, he doesn't do raw veggies or apples, he doesn't like juice boxes and he is picky on the flavour of goldfish on a usual day. This worried me. BUT - I got over it. Hes a hefty kid... a little lack of lunch wont kill him. 

All in all, he seemed to have thoroughly enjoyed his day!! So - WHY was it so hard for me?? I couldn't talk to anybody about Lincolns first day without crying!! I was an emotional wreck. From the R word getting tossed around, to the annoyance of someone having to be Lincoln's bus buddy, to his wet pants and a full lunch pail. That was why. But then I realized,  with every struggle is a learning curve. I prayed all night, and God reassured me that I need to take a stand! I need to show the world WHO Lincoln is. I need to voice myself to others that using the "R" word is NOT ok. That just because Lincoln's communication skills are not clearly understood by everyone yet - doesn't mean he should be the target of other kids. He will get there.  I even contemplated homeschooling, but was reminded that Lincoln is too much of a 'people person' to take the daily interactions away from him.  And I get that.  He has strived so much already in his life - and it has hardly even begun.   People who have gotten to know him have changed, because of him.  Because he is who he is, and because people are accepting and loving and caring and mean well.

I have learned not to dwell on things.  It will only tear me apart in the long run.  I can't feel sorry for myself.  Lincoln needs me.  He needs me to be the strongest me I can be - and I'm working on that.  He needs me to communicate with his teachers because - I - (for now) am his voice.  This morning I dropped him off.  I talked to his teacher(s), explained he had an accident, and didn't eat his lunch.  Last night I got all upset about everything without putting myself into Lincolns shoes. Its a change... he wont jump right into what everyone else is doing until it becomes a routine.  He wont get up to go potty and he might not eat his lunch right away.  AND his teachers don't know him yet.  Give it time... breathe... and pray.  Let Lincoln show the world who he is.  Let him shine, and watch others fall in love with his loving and caring lifestyle.  Give him an extra hug everyday, and be glad that that is the end of my first day blues.

If there is anything I want you to take away from reading this - its to educate your own children.  Not everyone is the same.  Being different is AWESOME, and teach them to accept people that are different - for who they are....  And, that its not ok to use the R word.   If you haven't already removed it from your vocabulary, please do.  

Lincoln thanks you   :)

The lucky few

Ever wonder if maybe its you who is one chromosome too short?  That Lincoln doesn't have an extra, but you are missing one?  I thought about this for a while, but then shook my head. I don't count chromosomes, and I don't want you to either.  I just want you to look at Lincoln as one of the lucky few - the lucky few who can put a smile on just about anybody. People for the most part, are incredible.  The attention that we get when we are out and about is far more positive than negative.  Lincoln is an attention grabber.  And I wont complain about that. Even I'm still drawn to him - and hes my son(but that's not surprising). Before Lincoln i could go about doing my regular tasks without getting a smile out of people around.  Now, I can't go anywhere without getting a smile, or a comment on my children, or a mini conversation in the cracker aisle at the grocery store.  It brings me joy to know all we have to do is walk around, and people smile.  I use to wonder if people would notice - but now I'm glad they do.  We are the lucky few.  We get extra smiles - and i REALLY love that!! God knew exactly what he was doing.  I consider us 'the lucky few' to have received this blessing.  It has allowed me to see the world through a special eye glass, it gives me purpose, and shows me whats truly important in life.  Our hearts have been opened to a life that we couldn't have even dreamed of, and We are truly blessed.  

So, how is he doing... Lincoln is rocking along (but that's not surprising either).  He is really excited to start school in September.  We have gone to three 'welcome to JK' get togethers that the school held, and Lincoln doesn't want to leave.  He loves other kids!!  Always has!!  Just the other day, one of the little boys in his preschool class told me that "I think Lincoln is starting to like me" - meaning (I assume)- His talking is getting better!!  I know kids don't get it, but I think its cute how they want Lincoln to like them, even though he already does. His speech is moving along really well.  I know everything that he says - and he is now putting together 4-6 word (maybe even more) sentences. Even other people who haven't seen him in a while have commented on how well his speech is coming along. We are also working on how to use a flip book (with pictures) to aid him once he starts school in case others cant understand him.  His speech path had to bring in another speech path to 'brag' about how quickly Lincoln caught on.  Lincoln is also starting to catch on to the concept of letters and numbers.  He drew the letter "L" the other day and was so proud of himself!  I try to imagine what his life looks like.  How he can watch Parker draw certain letters of the alphabet on command, and how its taken Lincoln months to perfect the letter L - not only to write it, but to recognize it also.  I wonder what it must be like knowing that some of the things that come so easily for Parker, come not so easy for Lincoln.  But you know what?  He still does it with a smile on his face, He is determined to do it, and He doesn't give up.  The hard work he puts in to things that we take for granted is so inspiring. Which is why we applaud him EVERY DAY!!


I love how Lincoln inspires me.  How he inspires me to blog, and to brag, and love longer and hug harder.  Life is too short, so we have to make the most out of it.  Recently I was asked to write an article for a local Right to Life organization.  I guess my dad missed the time when I told him I was writing an article to be published... because when he received a copy in his church mail box and proceeded to read it, he flipped the page and was shocked -but- proud to see Lincoln.  I know (or hope) even those who don't know me, or my story were inspired by the article.  Every life is precious.  Yes, Down Syndrome is 'different', but it is because its 'different' that makes it so amazing! Life isn't supposed to be easy.  If it was, moments like these wouldn't be so perfect. Right??


Both boys are in preschool this morning, so I thought I would take the time to enjoy the silence, and the thoughts in my head, and blog. We are looking forward to summer.  School will be out for the summer in a couple weeks, and even though we don't have much planned, We are going to make the most of it. 

Thanks for reading!!  :D

Be Proud....

Today, I could post all things Lincoln.  That kid just strives to impress not only me, but everyone he meets - EVERYDAY!  

 

the battle of the proper pronunciation of the "P's" This happens EVERYDAY. P,F,D,L,M etc.

Pingu vs. Pirate

I'm going to back track a bit - We registered Lincoln for SK in Jan to a brand new school in town ... pretty exciting!!!  We then had a meeting with the learning coordinators, principle and vice principle of said school, with our speech therapist and occupational therapist present.  I can't even begin to tell you (as my eyes fill with tears) the words of encouragement, the patting on the back, and all the positive that came with that meeting. I know sometimes these meetings arnt positive to parents, because they can put focus towards the 'what your child can't do yet' ... Maybe its just me, maybe I just don't focus on that part of the meeting.  But maybe that's because I know he is doing everything that he can do to the best that he can do it ... at this time, in this moment.  Our therapists know Lincoln tries so hard.  My husband and I know Lincoln tries so hard... heck, even Parker knows Lincoln tries so hard. (We are in the middle of a speech block, and Parker takes his speech very seriously.) - (see video). I love how everyone works together.  God has given Lincoln to 'us' because 'us' is what is best for Lincoln.

Anyways, today Lincoln had visitors at nursery school.  The learning coordinators from his new school (in Sept.) came to observe him in a learning environment with peers.  Thankfully Lincoln had a great sleep - and was super excited to be wearing his new spider man shirt (in blue for autism awareness day), that he was in a good mood. (not that hes not usually in a good mood, but it certainly helps).  This was the first time the people from the new school had met Lincoln, and I could have hugged them in the end.  "Lincoln is not going to have a problem AT ALL" they said, "He is going to fit right in...  Hats off to you for doing such a great job raising him.  I wish we could package you up, and send you to other houses"   Now, don't get me wrong, I am totally not trying to brag here, but just hearing those words is so re assuring to me. I love how, even when I'm having a bad day,and nothing seems to be going right and I'm constantly praying for peace (or yelling at the top of my lungs...). or when I doubt my parenting; someone is there to remind me that I AM doing a great job. I need to realize that what I am doing in raising Lincoln, isn't the same as the average parent.  Not every parent gets to stay home... I do.  Not every parent has therapy appointments at least once a week, I do.  Not every parent goes through the struggles, the stares, and the happiest moments of success as I do.  And I should give myself more credit.

I don't mean to make this about me, I'm just trying to share a little bit of my thoughts and joys right now. I'm glad I have so many people interested in my life with down syndrome.  Because to me it means I am making a difference.  I don't view my life as different, because I don't know my life any other way, but others do.  And for that I want to thank you.  I want to thank you for reading my story, for taking the time to get a glimpse of my life, for not judging, and hopefully to enlighten you that Down Syndrome is beautiful!!
 

3-21

As most of you are likely aware, seeing as i have been flooding your news feed with World Down Syndrome Day posts... that, today IS world Down Syndrome Day.  Why??  well, because today is March, 21... 3:21, 3 copies of the 21st chromosome - Down Syndrome.

A way today is celebrated is by wearing yellow and blue... AND fun/funky/mis-matching/wild socks. You will probably get asked, 'What's with the socks?' ... and that question will give you the perfect opportunity to explain that 3:21 is World Down Syndrome Day and that you are celebrating all the wonderful things about people with Down syndrome while helping to advocate for individual rights and respect.


I have to say, that I am completely over whelmed with all of the photos of peoples socks!!  Or nails, Or an article shared today to raise awareness that TODAY is World Down Syndrome Day.  So thank you to everyone who showed some sort of support today.  It is greatly appreciated.

spread the word to end the "R" word

You may not be aware of the damage this word can cause when used, So I'm blogging to spread the word on how this word hurts.  TODAY is the day to spread the word, to educate you, that YOU can help make a difference to end the word.  Take the pledge at www.r-word.org to put an end to the word.   If not now, WHEN?  if not you, WHO?  It starts with one voice, one person to make a stand.  The word might not be hurtful to you, but it is to me.  Show respect and pledge.


According to the dictionary, the "R" word means : to make slow, delayed, development or progress or an action/process etc; to hinder or impede.
Retarded is an ACTUAL medical term that has been twisted into an offensive slang term. And because Lincoln has Trisomy 21 he automatically fits under the medical definition.  The "R" word has been used widely in todays society to degrade and insult people.  Lincoln, however is NONE of those negative things implied when you casually throw that word around. So next time you are tempted to use that word please stop and ask yourself what you are really trying to say...because the "R" word isnt just a word, it is offensive, and derogative.  Asking people not to use this word is not censorship, or freedom of speech, its about consideration, dignity, and respect for people with an intellectual disability.  When you say “you're a "R" ” you not only risk offending or hurting someone, but frankly you sound unintelligent.  It may seem overly sensitive, but it hits close to home, and I am standing up for not only Lincoln, but everyone else who is being labeled by this hurtful outdated term. I hope we might someday live in a world where the R Word doesn’t exist.  I know that most people mean no harm by it and you may feel its not really offensive because you are using it in a humorous manner, but you're wrong.  Its offensive to say "You're so retarded" So please, dear casual user of the "R" word, remove it from your every day vocabulary.  I will stand up to my pledge, and ask you to join me to please end the word.  I urge you to share this blog, because together, WE CAN.





Please picture this sweet face next time, and pick a different word :) ... because to me, he IS A BIG DEAL!!

Growing up

I cant even begin to tell you how much joy LINCOLN brings to our lives every day.  He is such a caring and loving boy who makes us so proud!

From therapy appointments to grocery shopping, to doctor appointments, his manners are there to follow.  When therapists come over he is always right at the door getting excited that someone is coming over, and when we go out to the grocery store, and he decides he wants to walk rather than sit in the cart, he is so polite to everyone we pass by; by saying "excuse me" followed by a "thank you"... so how could you NOT love him!  I love the feeling I get of getting smiles on my face  so big, that my nose tingles and my eyes start to water.  I am so proud to be his mom, and so happy of the independent little man he is becoming.  I recently put him in charge of points cards like airmiles or PC plus points.  He gets to hand them to the cashier.  He has a whole new love for the ladies behind the counter.  He patiently waits in line, then when it is our turn, he so enthusiastically, says hi, followed by his 'down syndrome' lingo...blabbing on about anything and everything - I'm sure!  He is starting to get better at throwing actual words into his blabbing.  A pretty prime example: Last week, when dad was not home for dinner because he was working on his car - which has been giving him problems lately... when we prayed... Parker usually prays with the song "johnny apple seed" and Lincoln prays in his lingo followed by a clear amen.  But this time, Lincoln threw in actual words, saying "daddy at work" and then lingo again.  It was the cutest thing. Anyways, its cute to watch the cashiers chatting with Lincoln as he is handing the odd item for them to scan.  Lincoln is always trying to do his best to impress people, and he is doing a pretty fine job at doing that!

reading a story to his cousins :)

  

We had his follow up appointment with his ENT - post all ear infections, and he passed his hearing test with 100%!  Its the first time he has gotten 100%....  And, his language has taken off as a result!  He will hopefully be getting 2 speech blocks in before school starts when he will be transferred to a different therapist.
Lincoln has started at his new nursery school at the YMCA, and is loving it so much!  He was going 2 mornings a week for the month of Jan, and I was able to get him in for 4 mornings a week starting in Feb.  I decided to send him more mornings a week because he really loves it!!  His first day of drop off, he walked right in, found the books, and started reading, with a slight bye to Parker and i (Parker insisted on a hug, and got it however)... But i just loved the thought that Lincoln was comfortable there.  Its only 2.5 hours a day, 9:15-11:45, so its not a very long time period.  He gets so vocal when he walks in every day, by greeting everyone with a huge "HI", a couple hugs for mom and Parker, and off to playing with his friends.  Everybody knows he is there.  I love how much he loves life!  It brings out the best in everybody around him, and he makes us all so proud!  He has been wearing underwear to daycare also...  potty training has also moved forward!  Not saying he asks, or tells me when he has to go potty yet, but keeping consistent.  He has yet to go at daycare, but he is pretty good at holding it.  Hes been wearing underwear for probably 2 months now, with only 2 accidents!  Now I use just 2 diapers a day.  One for Parker and one for Lincoln at bed time. Lincoln is ALSO getting pretty good at dressing himself!  He is capable of getting all his clothes off on his own, and he puts his own PJ's on every night!  Hes almost got it mastered!!  The encouragement we give him is really pushing Parker to be independent as well, so my job just got a WHOLE lot easier ;)

LOVE THESE KIDS!!

We will be registering Lincoln for kindergarten (SK) this week.  This past weekend Mike and I attended a workshop to learn how to get the best out of education that we can - for Lincoln to reach his highest goals It was able to clarify anything we were un sure of. We want nothing but the best for him and we will do what ever it takes to get him there! So hard to believe its that time of year already!!  Cause that means WINTER is almost over!!!!

Thanks so much for reading!!