The "Terrible" Almost Twos!

Dear Kheaven,
You're sleeping right now, but there are many reminders of some of the ways we spent our day today...

I finally picked up all the movies you took out of the new bins I put them in, so you couldn't get them.  It's extra helpful that you decided to take them all out of their individual cases as well.  Mommy likes sorting!  :)  I think you like sorting too.  I saw what you did with the shoes on the shoe shelf...  you sorted them into a big pile on the floor!

I think It's wonderful your climbing abilities are superb.  Who else do I have who would take all the pens out of the cup on my computer desk?  At least the computer keyboard isn't missing any keys at the moment.  I was afraid we'd never find "C" yesterday.

Oh dear son, bathing you is always a joy!  I love how you splash and giggle.  I find it fascinating that the shower is the only place you choose to go from the sitting position to a stand without using anything to pull yourself up.  This has been going on for at least a month now, so I'm getting used to it!  Today you had two baths, but I suppose with meals like manicotti and pancakes with syrup will do that to an almost two year old.  I thought your hair looked fabulous with that maple syrup gel you put in it!  You are quite the stylish stud!

I look forward to doing many of the same things tomorrow, and probably some new things too.  Every day is an adventure when YOU'RE almost two!

Love,
Your Tired Mommy

Kheaven has definitely been keeping me on my toes lately.  He is closely supervised during his many excursions, but through exploring we learn and as far as dumping things out go, I'm not too inconvenienced picking all his messes up.  ;-)  

Some of Kheav's favorite things to do, other than sort and organize, are singing songs with hand motions, reading books and pointing at the words and making a woof or growl sound for every animal he sees, pulling hair :(, and eating.  

Ahh! I love stages of development!

Kheaven has been super spongy the past week or so.  Actually, it's been the past three weeks, because it seems like I noticed it the day after Halloween.  :-D

Tonight for instance, he has
said/sang Amen after prayer with the kids,
sang la, la, la,
sounded like he tried to say birthday, came out "berrrrduh"
said, "yeah" when I was reading the book, "I Can, Can You?"
let go of me to stand on his own, but then grabbed back on quickly...
moved between pieces of furniture while cruising,
made "gassy" noises using his tongue while crawling into the bathroom,
picked up a fake flower, held it over his head and said "umbrella" - When I said, "No, that's a flower," he held it to his nose and sniffed it!  :)

There were a few other things he did that were just...  amazing...  :)
All my littles are amazing.
Sometimes I think I'm just going to burst with love and appreciation of them!

Austi is six today...  I keep thinking about how absolutely adorable Nayeli is going to look in the dress my Grammy made for her.  I'll post pix of that.  :)

Happy Thanksgiving on time!

Autumn, Finally

Life hasn't been easy for the past month or so.  God is giving me strength, I believe, because if he wasn't I wouldn't be able to type this now.  Jeremy and I are no longer together.  I see no point in trying to hide it, or not writing about it.  I'm public about a lot of my life, I always have been.  Sometimes people find strength in the observations of another's struggle.  Maybe some good can come of this?

The kids are doing well!  Halloween was fine, we all still went out trick-or-treating as a family, and that was nice since he's been living with a friend lately.  From what I can tell the kids take their emotional cues from me.  If I'm okay, they're okay...  It's good to see them okay, because then I think I must be holding it together nicely.  ;-)  

^LOOK!^ Cheese-heads in Kansas.  There IS a reason I love it here!

Kheaven was in the hospital at the beginning of the month with croup.  We spent three days there, with him getting breathing treatments and shots of steroids.  A couple of days after he was released both of the other kids and myself got sick.  We are all on the tail end of it now though, and I am SO glad!  Sick babies while you're a sick mama is NO fun!

I am very blessed to have the support system I have.  My co-workers, especially, have been extraordinary.  They are my pseudo-family.  :)  I am also very blessed to have a non-coworker "family member," Kheaven's God-mother.  She has been very helpful and supportive.  I shouldn't forget to mention Kheaven's Infant Child Development team.  They are and always have been amazing people!  I know that I will endure and eventually life will seem normal to me again.  


I will continue to update when I can.  If I don't have the chance to update beforehand.  

♥Happy Thanksgiving to all!♥

A Letter to Kheaven (@13 Months)

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Dear Kheaven,
You're AMAZING!  Your smile and your laugh light up the world...  not just my world, but THE world.  You are strong and fast and sooo curious!  I love how you mimic the things I say and the faces I make.  I love the silly noises you find on your own.  I love that you are so ticklish that when I pick you up you laugh.  I love that having you in my life has made me grateful for more than I used to be.


Kheaven, I believe that you are capable of whatever you put your mind to!  You have been surprising me since the day you were born and I know that you will continue to surprise me.  I hope that I will always give you room to grow and learn.  I hope that I won't expect more than you can give, pressure you in any unhealthy ways, or make you feel like you're not right where you should be.  I hope that we are able to communicate our wants and needs with each other calmly and that I will truly hear the things you want/need.


I thank God every day for you.  You are one of my most treasured blessings.♥

Sword fight!

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If you have another/other kids and are expecting or have already had a child with Ds...  Don't worry, they'll be accepted and loved just the same!

♥Love it!♥

Friday Photo Flashback: 1995

I haven't done a photo flashback in about a year I think?

Three kiddos keeps me busy.

***

This is my little brother, Isaiah!  

He's 16 now, but wasn't he so cute?! 

(Haha, he still is pretty cute. :-P)

It'd help me with comparisons if Kheaven had teeth yet!

They're not twins, but definitely related!

(You can tell more in other pix and in person.  If I had more time I'd find them, but this will have to do!)

A Memory

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Kheaven rolled over back to front for the first time a few days before his six month birthday.

We were visiting WI at the time.

These pix, courtesy of my mom, are not of his first time rolling over, but it was the day after.

TADA!

Another Flashback

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-This was written mid-October 2009.-

"There should be no more hushed tones, somber faces or sorrowful apologies. The news of Down syndrome ought to be delivered with smiles, congratulations, a hearty slap on the back and a look of envy from every doctor in the world."

Jill kocian

I remember the day my doctor asked if I wanted the Triple Screen Test done.  I said, “No, because it won’t matter anyway, and I don’t want to stress out for the possibility of having something be wrong, as I will not have an amnio done regardless.”  


Fast forward to the day my family welcomed our precious Kheaven Zane into the world, September 21.  I had been in labor for roughly two weeks and finally my body decided to keep progressing.  My J dropped me off at the hospital and went home to get some more rest with the other two kiddos in our bunch.  I made a few phone calls, and waited to see if this was in fact the day, as I had been in and out of the hospital for the previous two weeks.


It was the day! Six hours after being admitted to the hospital I gave birth to a beautiful 6lb 8oz boy with a head full of hair!  My child, and hair!  It just didn’t make sense, I knew something must be wrong!  (Just kidding.)


I cried harder when Kheaven was born than with either of my other children.  I conceived him a couple of months after a previous miscarriage, had been worried about miscarrying him in the beginning and I deeply wanted another child.  It wasn’t an easy pregnancy, but mine never were.  There weren’t any complications other than light spotting in the beginning though.


About two hours after I had Kheaven the doctor came in all befuddled.  *My poor doctor.  He mentioned that he noticed some of the soft markers for DS and that he would have another pediatrician come  and take a look at him.  He was all nervous and apologizing, and I was so confused…  No tests had been done yet, and every soft marker he mentioned was a feature on my partner or myself.  Cute little ears with kinks…  wide set, almond shaped eyes…  a little gap between his big toe and the rest of his toes.  The only thing that was of any concern to me or my partner was this cute little roll on his neck.


Well, I told the doctor not to worry, and that everything would be fine, until we had the test done there was no cause for alarm, and even after that Kheaven was still perfect.


Ten days later I receive a voicemail, from my doctor…  


A chill went down my spine and it was my first instinct to run the bathroom and vomit.  Although only four days earlier the doctor was thinking he had ordered the chromosomal test for nothing after looking Kheaven over when he was less swollen from birth the results came back positive for T21.


Doc asked if I was okay and if I had any questions…  Questions…  Um, YES I had questions, though at the time I had NO idea what they were.  He gave me the phone number of a college mate who also had a child with DS and said to call him as soon as I could, and he would be able to answer questions for me.


Even though I couldn’t quite wrap my mind around anything, two hours later I called the man and talked to him a little bit about everything.  I had missed that he had a daughter with DS from the convo with my doctor, I’m sure I missed a bit from that convo.  I cried for a few hours after getting the news, but eventually the tears subsided.


The next few days I cried myself to sleep, but during the day I was strong for myself, my family, my friends, and of course my two other children.  I didn’t know why I was crying so much anyway.  I knew I wanted my baby, knew I loved him more than anything along with my other two children.  Knew I was blessed just to have him when I thought I may not be able to have anymore kids.


Eventually I figured out I wasn’t crying because of the diagnosis.  I was crying because if anyone tells you your child is at risk for a number of problems, that they may face ridicule and more challenges than most people will ever have to face it’s a little disconcerting.


I joined online forums, found blogs, and kept in touch with my first contacts and kept reading everything I could…  I’m still reading.  I love my son so much and want to give him every opportunity to be the best he can be.  Everyone struggles somewhere in their lives, it’s just part of life.


Kheaven is very healthy as of now, he nurses well, lifts his head and even rolled over a few days ago.  He’s already amazing me, and I only hope for more.  He’s my Handsome beloved, gift from God and I will NOT take him for granted.

*Some people may think my doctor's reaction was not appropriate, that maybe it would have scared/upset me more because he seemed perturbed by the news.  I believe he responded that way because he had been my doctor through my miscarriage and new how much I loved and was excited for Kheaven.  I do hope the experiences he had with my family and the way we responded will encourage him in the future to not be so upset when delivering the new of a possible/positive diagnosis for Down syndrome though.

"Those who do not run away from our pains but touch them with compassion bring healing and new strength," Henri Nouwen observes. "If you will risk sitting in the solitude your heart to reflect on your story, then Jesus will meet you there. He will lead you along a path that restores your true self."

Too much to Bear? I don't think so!

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One of my fellow blogging moms asked the following as a comment to my last blog post, Life is Worth Fighting For:
"I ask this out of complete respect and mean absolutely no disrespect. How do you deal with the future knowing that he may never be able to leave your home or care? What are your plans for him when you and your husband have passed away and he is an adult male w/Ds unable to care for himself? That would be my biggest concern if I were a parent of a child w/Ds. To have to care for them for the rest of their lives- that seems like almost too much to bear." 


So many answers are racing into my mind that it's surprising me.  Therefore, I feel the need to answer in blog form as opposed to a reply e-mail message or comment.  It's a good, natural question.  I faced it the day I found out Kheaven had Ds.  I dealt with almost any negative feeling I could have felt at that time, then I moved on!


I'm going to break the comment apart and try to answer it piece by piece first.




"How do you deal with the future knowing that he may never be able to leave your home or care?"
I'm excited for the future!  I honestly would love to adopt a child with Down syndrome in the future.  I think if Kheaven, or any adopted child I would have, cannot live independently, it would be a joy to live with and care for them rest of my life.  I'm the mom!  Caring is what I do!!


I suppose what scares me is independence.  What will I do if Kheaven is fully capable of caring for himself and wants to move away?!  What will I do if I can't be there for him in a spit second if he needs me?!  How am I going to deal with this for any of my children?!?!  ;)


My dream...  haha...  My dream is that my kids will love me and the environment they grow up in SO much that they will want to live in an attachment to my home or next door to me.  That's a lot for me to ask considering I have not lived in the same state as my family for a year since I graduated.  That's my dream though.  If they don't want to be that close I'm hoping for visits on holidays and the weekends.




"What are your plans for him when you and your husband have passed away and he is an adult male w/Ds unable to care for himself?"
First of all, many adults with Down syndrome are capable of caring for themselves.  They have learning delays, but they still can learn the things anyone else can learn, and they can do the things anyone else can do. They just have to work harder for it.


Who will take care of you when you're older?  Do you know for certain you'll die before you're incapable of caring for yourself.  I don't know that for myself.  My dream...  (Here I go with dreaming again.)  My dream is that if I live a FULL life, and if my children lead FULL lives and are around that one of them will want to care for Kheaven if I'm gone or incapable of it myself.  I do not expect this of them, but it's a dream.  If there is no one there for Kheaven I would think he'll be put in a nursing home/care facility.  I don't imagine he'll have a hard time making friends, especially if it's a facility that specializes in care for people with Ds or other special needs.  He may just have the time of his life there!  :)




"  ...my biggest concern if I were a parent of a child w/Ds. To have to care for them for the rest of their lives- that seems like almost too much to bear." 
It's a morbid thought, but could one of my children, or your children, or anyone's children fall down the stairs and need to be cared for the rest of their life?  Yes...  Could we have a 24 year old get into a tragic car accident and need to be cared for the rest of their life?  Yes.  Would you love your child any less for these reasons?  I wouldn't.  Yes it's more to bear, but it's not too much!




I had a miscarriage before I had Kheaven.  Losing that baby felt like "too much to bear."  Any parent who has lost a child must have had, "too much to bear."


Caring for my child, my son, is a blessing not a burden.♥


We really are MORE ALIKE than different!  It's one of those things that I know from experience that it would be hard to know unless you're in the situation... but that's why parents, why I, do this 31 for 21 blog.  We want others to see that our kids are kids, we are parents.  Life is a little different but we are not worlds apart.

Life is Worth Fighting For

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SoOo...
Blogging about Kheaven's Down syndrome is completely awkward for me.  Really.  :)

I'm doing it though because Google is what I turned to when I had questions about Ds, and from Google I was directed to blogs.  From those blogs I was directed to more and more and more blogs.  From ALL of these blogs I found families that were just like mine but with an extra chromosome.

I'm also doing it because 90-93%(the statistics vary) of women who find out prenatally that they are carrying a child who may have Ds decide to abort.  It hurts my heart and soul to know that they give up the chance to know and love a wonderful little child who, should they believe it or not, they would love as much as any other child they may have.  Life will never be perfect for anyone, we are never given guarantees.  You can have a baby with Ds who will be bright, healthy, and happy.  You can have a typically developing child who has a world of "problems."  You just never know.

I hope that by looking at and reading about my son, and any other child you find from bloggers that you would just give your baby a chance if you're faced with that decision.

♥He/She is SO worth it.♥

Up, Up, and Away!

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Kheaven started cruising along furniture yesterday, and today he climbed all the way up on the couch!

People with, and without, Down syndrome can often surprise you!

♥We're more alike than different.♥

~Brotherly/Sisterly Love~

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While having a special needs sib presents challenges, it also comes with opportunities. Kids who grow up with a sibling with special health or developmental needs may have more of a chance to develop many good qualities, including:

• patience
• kindness and supportiveness
• acceptance of differences
• compassion and helpfulness
• empathy for others and insight into coping with challenges
• dependability and loyalty that may come from standing up for their brother or sister.

The above info was taken from The University of Michigan Health System Website.

I Never Knew...

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Before having Kheaven the idea of having a child with "special needs" scared me.  I didn't know if I'd be good enough.  I thought I'd have to spread myself thin.  I thought it would be a burden.

It's not a burden.  At least, it's not anymore of a "burden" than caring for any other child.  I have the same hopes and fears for all of my children.

I hope that I can raise them all in an environment where they can become the best them possible!

Having a child with "special needs" has blessed my life in that I am grateful for every moment, from dirty diapers to milestones.  I feel like my life has been tremendously enhanced.  It's so weird that I used to fear the opposite.♥

We're All Different, Doesn't That Make Us the Same?

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 Down syndrome was named after the person who first documented that he recognized the characteristics associated with the syndrome.  Many parents of children with Ds believe it should be called "Up" syndrome instead.  ;-)

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...

...

However, just because our babies/children are often smiley does not mean they are ALWAYS happy.  

People with Ds have a wide range of emotions, just like anyone else!

Health Stuff

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Kheaven had an appointment with a pediatric neurologist last Thursday.  He's had some head shaking since about four months of age.  Sometimes it seems this is directly related to his Nystagmus.(wiggly eyes)  It has never interfered with how he does things, at not to my knowledge.  He had an EEG done a while back but the results came back that it wasn't seizure related.  Because the head shaking has changed from shaking no, to nodding yes, to wobbling like a bobble head they decided to do another EEG.  It also came back negative for seizures.  So, thankfully, we don't need seizure medication.  I have read that it can take a typically vibrant child and sort of make them zone out.


Anyway, since it's not related to seizures and since he has Nystagmus the neurologist gave me the following scenarios...
*It's a tick and nothing more.
*It's "Spasmus Nutans" which can also just be a tick that goes away by about age three.
*It's "Spasmus Nutans" caused by a cyst or tumor in the mid-line of his brain.


I'm not so excited about that last scenario, though going into the appointment I knew the reason we were getting the shaking checked up on is because it can be a sign of a tumor.


The plan is, Kheaven is going to have an MRI done on his brain.  Since he's a little, wiggly baby he needs to be sedated for it.  After the MRI we'll have another appointment, the same day, with the neurologist and he'll tell me what's going on.

I am praying for the best.  I hope that anyone reading this will say a prayer as well.

October Is...

Down Syndrome Awareness Month

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So...  It was ONE YEAR ago that I found out my new baby had an extra chromosome.

Down Syndrome IS a genetic condition caused by a chromosomal abnormality. Atypical cell development results in 47 chromosomes instead of the usual 46 chromosomes. As a result, there is some degree of cognitive disability and other developmental delays.

For people who don't know much or anything about Down syndrome it may seem scary at first.  New parents and family members aren't always excited about the word "delay" being associated with their child.  It's not so bad though!

Throughout the past year I have been very blessed that Kheaven's "delays" have been slight, and in some cases he was not delayed at all!

Kheaven amazed me at 2.5 weeks when he rolled over for the first time.

He astounded me when at three months he mimicked sever words and even a sentence, "I love you."

He started to "army" crawl right "on time" as well.

Kheaven just turned one a little over a week ago and has only been sitting for two months.

He just began to pull himself to stand and he has only done it a few times.

He has no teeth.

:)

The time frame isn't so important.  The drive I have witnessed in him, the drive I feel in myself and see in other families, who are part of the special needs community and who are not, that is what matters!

I hope over the next 29 days that I can blog about something you don't know.  I hope I can shed light on something you don't understand.  If you do know and understand this all, I guess this will be an opportunity to get to know me a little better.

Happy Birthday To My Baby Love

~Last Day Under One Year Old~

**Celebrating ONE YEAR!**

It has been one AMAZING year with sweet Kheaven Zane!

Looking forward to year two!!

And He Sits!

Kheaven is, without a doubt, an amazing baby.

He rolled over at two and half weeks old, said "I love you," at three months, started "army" crawling at seven/eight months old...  He's even been able to hold himself at a standing position while holding on to furniture for a month or so, but he hasn't been able to sit.

I don't mind it horribly.  I love holding my sweet, silly little baby man.  Today though, after our physical therapist cut her appointment short he decided it was time!

~The way it happened was...  Today was Miracle Treat Day, a day where if you buy a Blizzard from DQ at least one dollar of the proceeds goes to the Children's Miracle Network.  Knowing that we planned, in advance, a DQ run.  

After Kheaven's appointment I rushed off for our tasty treat!  Upon my return I split a Blizzard between Austin and Nayeli and began to eat my own.  I realized I should take a picture of the kids, for our own memories and also to post my cuties enjoying their ice cream on the Children's Miracle Network facebook page.  So I got out my camera and snapped a couple pix of the kiddos.

I saw Kheaven on the floor and thought, well, he's cute, might as well get a pic of him too.  I began shooting.  I got down on my stomach to get a couple of different angles...  after my shooting spree I removed the camera from in front of my face and looked at Kheaven...

He was sitting!  And I got it all on camera!  :-)  My jaw dropped and I looked at Jeremey and stuttered, "Uh... uh..."  He asked what and I proceeded to tell him that unbeknownst to me our baby just sat up for the first time from a crawl while I was looking at and taking pictures of him.  :-)

He's done it again already today and I am SO proud.  I called the physical therapist and let her know.  She was proud too.  :-)  I guess all he needed was her showing him the right way to go from crawling to sitting.  :-)

*Happy Sigh*

Okay, there's my happy/proud mommy rant.  I'm sure there will be more.  Take care everyone!

Let Freedom Ring!

HAPPY

INDEPENCE

DAY

Top to Bottom: Austin (7mo), Nayeli (15mo), Kheaven (9mo)

♥God Bless the U.S.A.!!!♥