Just a few things to keep in mind :)

         I feel awful for neglecting this blog for so long, but sometimes I find it difficult to come up with writing topics.  It may come as a shock but we live pretty normal lives =)  I have, however, put together a list of comments to keep in mind when speaking to a parent of a child with Down Syndrome!   I understand completely that unless you walk in our shoes everyday you might not know whats appropriate and what is not.  So that's where I come in!!!

#1. "I'm Sorry"
     I can't tell you how many times Wyatt and I have heard "I'm Sorry" since Kayson was born.  I'm here to tell you that not only is this unnecessary it is also hurtful.  As a new parent, we want people to tell us how handsome our baby is!!! We want to hear "congrats"!!!!  I know people don't know quite what to say because they may not know exactly how the parents feel.  I can however tell you that "I'm sorry" is NOT what we want to hear!  There's an old saying "if you can't say anything nice don't say anything at all"... well that applies here :) 

#2. "I always wanted a Down Syndrome Child"
     I'm not real sure how to approach this comment.  Sometimes I have no response when I hear this, and believe me that is rare =)  I believe this is a comment that people make when they don't know what else to say.  I would NEVER change Kayson.  To Wyatt and I, he is perfect.  But we don't live in a fairy tale world and we can't.  We know Kayson's life will be more difficult than some people.  He is only 9 months old and has already under gone two stomach surgeries and two open heart surgeries.  Everyday we have therapy sessions that Kayson simply sees as play time with Mommy.  We've had our first "staring experience" because of course he looks a little different than most ( by the way I didn't handle this as well as I would have liked)  But still people say "I've always wanted a Down Syndrome child".  That comment just seems strange to me.  I love Kayson just the way he is, but if I could make his life a little easier I would in a heart beat.

#3. "God only gives SPECIAL children to SPECIAL families" 
     WOW!!!!  This comment still makes me laugh.  What makes Wyatt and I so "special"?  We are just normal people who would do anything for our little boy.  Am I a better mother because my son has an extra chromosome?  To me the answer is NO.  I would be the same Mom no matter what.  I would still see germs on everything he touches,  still not let him sit in the buggies at stores or the high chairs at restaurants without his handy little cover, and still freak out with every runny nose!  Please remember we are normal parents with a normal little boy.  We just have a few more doctor appointments and therapy sessions than most. 

#4. "Did you have the test?"
     I've heard this question with two pregnancies now and believe me it doesn't get any easier to answer.  "The test" everyone is referring to is an amniocentesis, which is a test that detects any genetic abnormalities.  With Kayson, Wyatt and I decided to have the amnio...we already knew about Kayson's heart defect and the blockage in his intestines.  We also knew Down Syndrome was a possibility.  For us the decision to have the test was for our own knowledge.  We wanted to be prepared, we wanted to give Kayson the best life possible.  This time around, Wyatt and I opted not to have the amnio.  We had Brinlee's heart checked ( she has a perfect heart)  and for us that was enough.  An extra chromosome is not a big deal to us!  As long as she is healthy that's all that matters. 

#5. "Down Syndrome Child"
     This might be my number one pet peeve.  Please, please, please put my child before his diagnosis.  Kayson is still a normal boy despite an extra 21st chromosome.  He likes to sleep late...beware of his attitude if you wake him ha ha!!!!!!!!  He likes his bottle as soon as he opens his eyes.  He has to have his stuffed monkey when he sleeps.  He thinks he MUST be center of attention.  He flirts with every girl he sees.  He makes my Mom (his Nonna) sing to him every time she is around, and he is NEVER quiet!!!!  Having Down Syndrome does not define who he is.  Kayson is a rowdy little boy full of personality,  and deserves to be recognized for that, NOT his extra chromosome!!!

#6. "All Kids with Down Syndrome are Such Angels"
     PAHAHAHAHAHAHAHAHA!!!!!! This is the funniest thing I've ever heard.  I will be the first to tell you that this is NOT true.  An extra chromosome does not determine a child's personality.  For example....Kayson has a temper.  YES he cries and throws fits.  NO he is not always smiling.  He gets aggravated when he doesn't get his way.  HE IS A NORMAL LITTLE BOY!!!!  Not all children with Down Syndrome are the same.  Are all "typical" children alike???  ummmmm no!!!!  Just because children with Down Syndrome all share the fact they have an extra chromosome does not mean they share the same DNA.  Kayson is still the spitting image of his daddy.  He has his great-grandfather's ears.  He has my personality.  He is loud, demanding, and never still!!!!  He is his own person who will grow up to be just what he wants to be. 


     I hope this post has been helpful.  I struggle with whether or not to say something when I hear these types of comments.  The older Kayson gets the more I believe things must change and I have to voice my opinion! As my husband always tells me "Kayla, if you don't tell me what hurts your feelings, then I'll never know"!!!!  So here's to telling the world what hurts my feelings and what could possibly hurt my son's feelings in the future!  Think before you speak and when in doubt just ask :)


    

a BIG day to celebrate!



Today we have two wonderful reasons to jump for joy!! First of all today is National Down Syndrome Day :-) I can't begin to explain how one extra little chromosome has changed our lives for the better. Wyatt and I are completely different people than we were a year ago and we thank God for that everyday! Kayson is an amazing little boy and although we celebrate everyday with him, today is a MAJOR celebration. I'm so glad Kayson was born in a time with all the medical advances and also a time where society is starting to accept children with down syndrome!
Our second reason for celebration is...Kayson is off the temporary pacemaker!!!! As many of you know he went in for his first heart surgery two weeks ago today. Five days later the doctors took him back in for a second surgery and were able to completely mend his AV Canal heart defect! It's very common for a heart block to occur during the type of procedure Kayson had. The top part of his heart had a normal rhythm but was only sending signals to the bottom part of his heart every other beat. For that reason, he was placed on a temporary pacemaker. After two rounds of steroids and LOTS of prayers Kayson came out of his heart block this morning =) We were beyond happy and so so very proud him!! We can't begin to explain how difficult this experience has been... For the past two weeks we have been completely helpless. As a mom you think you can help your babies. You are supposed to be able to make the hurt go away and fix bo bo's with a kiss. I couldn't fix his heart with a kiss nor could I make his pain go away and it absolutely broke me. All we could do is cry and pray for God to help us through this. Two open heart surgeries in two weeks is a roller coaster ride that seemed to never end. The Doctors and nurses here at Batson Children's have made our days bearable... They've been the hug we needed, the reassurance we longed for and a support system that we will forever be grateful for! They gave our baby boy a life... How do we ever repay them??? We could write a million thank you notes and it would never seem enough!!! The thought of taking home a healthy baby blows our mind. He came in so broken and so tired... And now he is all fixed!!! He has energy that he's never had before and we are in awe =) We can never thank God enough for allowing us to keep our Kayson for a little longer. Thank you all for your support and all the prayers... We are beyond blessed that so many people love our sweet boy!!!

The Start of Early Intervention!!!



Today First Steps came for Kayson's first official day of early intervention.  Wyatt and I have been anxiously waiting for this day to start, because we know the earlier we get started the better it is for his development.  Kayson was a little fussy this morning but they still got to see his capabilities!!!  He showed us how he can hold his head up and swat at toys!!! And is so very alert and happy when someone talks to him and shows him attention ( he gets this from me!!)  He is trying to roll over to his side and acts like he is swimming when placed on his tummy.  He thinks tummy time is the best and doesn't know which toy to reach for next lol =)  After his evaluation today the speech and occupational therapist said "well why are we here? We do not see any reason for further treatment!"  I quickly stepped in and said I would prefer for Kayson to continue with therapy so he will stay on track.  They had overlooked in his paperwork that he was born with down syndrome, and when I mentioned this they were in shock.  Kayson is showing NO developmental delays so far which is such a blessing!  We will continue tummy time everyday and practice bringing his hands mid line to reach for toys!  Lots of music and singing and talking to promote the cooing and laughing!  We will also see a physical therapist weekly to continue to build muscle strength and tone!  Kayson amazes me everyday and we couldn't be more proud of him.  We take so many things for granted these days and having Kayson has given me such a new outlook on life.  Its the small things in life that make me so happy!  Just to see Kayson pick his head up and look at me makes my heart so full of love!  We tend to expect things in life...expect for our kids to reach for toys and expect them to laugh and roll over! But with Kayson it's different.  Everything he does is a milestone that we celebrate!  Every noise, every smile, and every lift of his head.  Never take anything for granted!!! And don't forget to thank God for EVERYTHING, even the little things =)

What is Normal?

I've always wondered why God didn't give me a filter!  What I mean by that is...if i think something then I usually say it out loud!  Which can cause problems more often than not and I've always struggled with it.  But lately I've been thinking, and I think I know why He chose to give me this voice.  It's never been about me....God has been preparing me for Kayson for a long time and I never knew it!  I'm Kayson's voice!!!!  I am his biggest fan, I am his advocate.  So I'm just going to vent and give my opinion on a few things.  As a parent of a child with down syndrome there are certain things you don't want to hear.  Unfortunately society has this preconceived notion of people born with down syndrome and I want to change that.  I might be fighting a losing battle but I'm going to give it my best try!!! Please keep in mind this post is about my personal experience and beliefs.  My goal is to give an insight into our lives and hopefully change your views on children born with down syndrome!!!

I recently went to the doctor for my post delivery check up and the nurse was going through the usual questions about how I was doing and then asked a few questions about Kayson.  I mentioned that he was in the Nicu for 6 weeks and naturally she asked why...So I went through my usual spill that he had to have a few surgeries and then I said " and he was born with down syndrome".  She looked at me as if I had just told her the saddest news and then said "I'm sooooo sorry"!!!  Now of course I kept my cool but inside I was hurt and aggravated...Why is she sorry????  A couple of days later I took Kayson to his pediatrician's office for his immunizations and the nurse was weighing him and checking his length and started asking some routine questions about his health.  I have all his medical history down pat...I know all about his surgeries and who performed them, I know his medicines and the exact doses, I know what his heart rate and pulse are on a regular basis, and his blood type.  So we breezed right through that but then she said something that I've come to dislike very very much.  She uttered these two words..."downs baby".  Now for those who don't already know...please don't ever ever say those words and I'm going to explain why!  I was discussing this with a friend of mine, who's child was also born with DS, and she said it perfectly...when we look at our children we do NOT see "our down syndrome".   We simply see OUR SONS!!!  Hints the name of this blog...HIS NAME IS KAYSON =)  You see he only has a diagnosis of down syndrome it's not who he is!!! So why the label???  It would be like me calling a person diagnosed with cancer..."the cancer".  It doesn't make a lot of sense does it?  The cancer doesn't define that person it's just something that happened to them, and it's the same way with Kayson.  Our pediatricain explained it so wonderfully...he told me he would never refer to Kayson as disabled or special needs!!!! He said " Kayson is simply a little high maintanence".  He's not "special" because he has down syndrome, he is special because God made him just as he was meant to be.  There are so many words and phrases that we use in everyday life that can so hurtful...I've been guilty of them myself.  And that is the point of this post....I want to educate.  I want Kayson to grow up and know he can do anything his heart desires.  But I also know he will constantly have to prove himself because again society has this idea of what a person with down syndrome can and can not do.  We were told by a doctor to expect Kayson to be mentally retarded.  Not because he performed any cognitive testing, because that's not really possible on a newborn, but because that is a possibility and is what our society expects.  I know this post is getting long but I need to get my point across! I say all that to say this...We don't know what the future holds for Kayson.  But we are giving him every opportunity to succeed.  He has started early intervention and I'll post about that the further we get in to it.  He sees a speech and physical therapist, and we will be learning sign language to help him with his communication skills.  He WILL hit all the milestones any other child would.  He may just reach them a little later than most and what's so wrong with that? Nothing is and Kayson will do things at his own pace and that's fine by me!!  So to wrap this up just remember that not everyone is the same.  Life would be pretty boring if God made us all the exact same way huh?!?!?!?  No one is "normal", we all have something about us that makes us unique and interesting.  God never makes mistakes, everything that happens is just according to his plan =)  So before you judge someone put yourself in their shoes.  Would you want to be labeled????



Our Beginning

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11



When my husband and I first received the news about our son's diagnosis for down syndrome we had no one to turn to. Of course our family and friends stepped in with support but no one that had been in our shoes. That was until a friend of a friend from my hometown got in touch with me. She shared her story and told me about her blog. It was like a weight had been lifted off my shoulders. Her son was also born with DS and I finally felt like I had someone to relate to. Her story and continued support made me realize life would be ok and I would be happy again and for that I will forever be grateful. I want to share my story in hopes that it will help someone else as Katherine has helped me. And if nothing else it's kinda therapeutic to get my thoughts together!!! So hang with me as I tell our story......

 For those of you who do not know me, all I've ever wanted to be was a mom. I've never longed for a high paying career or any of life's finest things... Just to be a MOM! So as soon as Wyatt and I got married we started trying to build our family! We were beyond excited when the test showed positive! That excitement soon turned to heartache when we went through a  miscarriage Christmas 2010. I allowed myself a few weeks to cry and be depressed and then I knew I had to snap out of it. I've never been one to give up so we started trying again as soon as the doctor cleared us! We found out we were expecting again in February, but this time we tried not to get too excited... We wanted to wait until we heard that sweet heart beat! That day finally came and we had never been so happy! We went month after month to the doc and everything seemed fine... That was until our 20 week ultrasound! We were a basket of nerves sitting in the waiting room knowing after this day we will know if this precious gift is a boy or girl :-) It didn't take long for us to see our sweet Kayson was a boy! Wyatt's face lit up and I've never seen him so proud! The tech got through with the scan and then said she saw a few things of concern and the doc would discuss it with us! Again our hearts just sank... But we tried to stay positive. We were then referred to a specialist in Jackson, Ms. We went home that weekend to see our family and announce the news of Kayson but decided not to tell anyone about the concerns the doc had! That was the weekend of July 4th which is my birthday... So of course we had our usual cook out at the river and we put our happy faces on when inside we were a ball of nerves! July 5th we saw DR. Perry the fetal specialist... He performed the ultrasound and then spoke the words " down syndrome"... Kayson had all the signs and he wanted to test my amniotic fluid to get a positive diagnosis. The test would take 10 days to come in! It was the longest wait of our lives... But it didn't take the full 10 days, Dr. Perry called the following week and my heart stopped as soon as I saw his number on my phone. All I could think was he can't tell me yet Wyatt isn't home and I can't handle this by myself. I answered and he confirmed his diagnosis... Kayson would be born with down syndrome. All I remember was melting to the floor and crying like I had never cried before. What had I done wrong?!?? Why is this happening to us?!? Am I strong enough to handle this?!?! These are all the questions that kept running through my mind! Wyatt got home soon after and didn't take the news well either. We cried together and yelled together and we were angry!!! Why was God doing this to us? We had prayed so hard for this child so why us? Would Kayson be able to play ball? Or live on his own? We had these big dreams of retirement in the smokies and it all seemed to crumble in an instant... The dreams we had for Kayson crumbled! Would he ever play ball at state or get married or have kids of his own? The "what if's" kept playing over and over in my head. But you see God knows what we NEED... We may WANT for something or even someone but God knows what or who we need! And we needed Kayson! We wiped our tears away and started to realize things would be ok. God is still blessing us with a child! I still got angry when teen mom would come on tv or I'd hear of someone getting pregnant and having a normal happy pregnancy when they didn't even want or pray for a baby! But the further along I got I realized that God picked us! He has trusted us to take care of this child!!! We know everything happens for a reason and we may not understand why we were picked but we are trusting in God's will. After learning of the positive test for DS I was sent to several more specialist. We learned Kayson would be born with an AV canal heart defect and also a duodenal attrita which is a blockage between his stomach and intestines. So we knew to expect surgery after Kayson arrived! We started having 2 ultrasounds a week to check the fetal stress, because babies born with down syndrome are more likely to be stillborn. I put on a smile at our baby shower but the whole time I was counting kicks to make sure he was moving enough!!! The doctors planned to induce labor on Nov 11, 2011 to avoid any complications so that's what we planned on! But baby Kayson had plans of his own... I woke up early the morning of October 27 and realized my water had broken!!! Nervous does not explain how I was feeling... I was scared for our baby! I was only 36 weeks! My labor went perfect and our doctor let us hold Kayson for a few minutes before the nurses swept him away to the Nicu.  He has had two surgeries since then, one to fix the blockage between his intestines and stomach, and another to perform a nissen (which helps with GERD) and also to put in a feeding tube or g-tube. Although Kayson can and will take a bottle his heart condition limits his energy and he tires out before he is finished. It's become sort of a balancing act....we want him to conserve as much energy as possible but also don't want him to forget how to eat. After a six week stay in the Nicu, Kayson finally got to come home...Just in time for Christmas :) And what a wonderful Christmas is was!!! We know we have a difficult road ahead of us but we also know God is in control. Kayson is such a testament to the power of prayer and continues to amaze me everyday.  God is good ALL the time never doubt that...even when you think your life is falling apart!! He has a plan we just have to trust in him!