Wednesday, December 29, 2010

Great Great Auntie Ruby

My mom, the 3 boys, and I went to visit Auntie Ruby last Wednesday. Ruby is my maternal grandmother's sister. If you've ever had the pleasure of knowing Ruby, you know she is full of spunk and personality. That has not changed. She used to like her Brandy and water and boys! :) She has slowed down a bit, but just a bit!

When I was a young girl, I'd stay at Ruby's place with my sister Katie. We'd swing on her front porch, walk with her around town, bake, cross-stitch, play with her toys, and many other special things.

When I walked in on Wednesday, I told her I brought enough clothes for the boys to last the week until I returned to pick them up! She was very willing! She had cookies and muffins for us and stuffed animals for the boys. She had a giraffe (Evan's favorite animal and also a favorite of Ruby's - their connection), some puppies (Nolan liked those), and a few tigers (one for each boy which Evan rationed out from biggest to smallest to the corresponding sized boy).
We love our Auntie Ruby!

Tuesday, December 28, 2010

Heart breaking

It is heart breaking sometimes to visit the online Down syndrome pregnancy board:

Hello,

Today we had our fetal echo. We found out the baby definitely has an AV canal defect. Cry

I knew this was a real possibility, but it made me so sad. At first I was just sad for my baby. I feel so bad that he has to go through this. That actually made me happy, because I was actually thinking about him first. But then later, after talking to the doctor, I had another relapse in my own feelings. All of this is still overwhelming to me. I am so tired of crying and being sad and I feel like it will never end. I feel like my whole life is going to have an underlying sadness and anticipation for more bad news. I know it's just awful to think that way. I haven't relapsed to the level of devastation I was at originally, and I have been able to keep aware of the bright sides, and keep it together for the rest of the day. BUT it's just so hard to deal with this sometimes.

It was good to read your inspirational post today, Missy, it was good to read how we shouldn't worry about the past or future, but live in today, where we usually aren't worried. Right now though, I am either worried or living in a dream world where I just don't think about reality and go on as if nothing is wrong. Like this isn't really happening.

Aside from the typical AVSD she (the doctor) also said that the pulmonary arteries seem small. Has anyone else ever been told that? She said that it could just be that the aorta looks big because of what's happening in the heart, or it could be that the magnification on the machine is misleading, but she said that could imply more surgery and more problems throughout his life.

So it got hard for me when she asked if we were still going forward, and we said yes. THEN she asked "even if the pulmonary artery is small" and I was so upset. I mean, I already said we were continuing. So why do you need to ask again. Then it makes me more scared of the pulmonary artery thing when she led me to believe it wasn't something we should spend time worrying about, ...yet she might think it would change our mind? I hope I am not crossing any lines here. I am not conflicted or seeking advice or an opinion of what I should do or what anyone else should do. I just don't know why the doctor has to make me feel so bad. I said it makes me feel bad when people ask me that because it makes me feel like my decision is being questioned, and she said "I have to ask". She was really nice, but she still had to say a few things that upset me. I asked if there was a good prognosis for him to have a normal life after the surgery and her response was "well there still is the downs syndrome". I wanted to say "REALLY, I didn't know, I MEANT IN TERMS OF HIS HEART!" Isn't it obvious that down syndrome will affect his life? That's not what I was referring to. Also, when she was asking about our decision she brought up our son and said "you do have another child to think about". How can someone be so nice and understanding in lots of other moments and then say things like that?

I am just sad because I was praying so hard that his heart would be ok. I knew it was a strong possibility that he would have the AVSD, but it still was hard to hear. At least now there is no more waiting and we can accept this and prepare. HonestIy, I am scared of what lies ahead. I don't know what I would do if I hadn't already read so many wonderful stories from the wonderful Moms on this board. I know it will be ok. I believe that even though God didn't take away my baby's heart defect, he is there in all of you...in all that you have shared to inspire and comfort, in all of your faces and voices, and it will all be ok.

-Alysia


Please pray for Alysia and her baby! They need us and God's grace and protection. I also pray that doctors realize they are dealing first with people's emotions regarding a child in their womb. It is a sick joke that a woman carrying a "defective child" is asked whether or not they want to continue with the pregnancy. I'm sure it's a legal issue. However, then I believe that every woman who walks into the doctor's office with a positive pregnancy result should be asked that. It is discrimination not to, is it not? I have a better idea yet, don't ask! I'm sure everyone knows abortion is an option. I am not here to say what is right for everyone, but I wish people like Alysia did not have to have such opinions/judgements cast on to her and her baby because the child will be like Sweet Baby Calvin. Guess what, he is a dream baby! Let us become leaders to others and show them that we don't have to quit when the going gets tough. We do not have to become paralyzed in the face of fear. We can persevere. We can chose, and not let other's negativity weigh us down!

Saturday, December 25, 2010

Merry Christmas!

Our gift to you, for supporting us through much deep water. Thank you! I hope you can do nothing but smile! That is what I do!

(Calvin's 5 month pictures)
bonus points if you can spot Calvin's Brushfield spots (spots on the iris, occurs in about 90% of people with Ds, can occur in people without as well). They are the ring of white dots in the blue part of his eyes. I love them! (I will work on a better picture to show them again)











Friday, December 24, 2010

It's over

...except it's not. The iPad give-away is closed. Kareen's adoption has not taken place.

She has nearly $3,000 (roughly 1/6th of the total needed) in her adoption fund (thanks to all those who joined Patti over at A Perfect Lily).

I cannot help but think about what Christmas is like for these children:
Do you think they are excited, or wake up early to see what Santa brought them? Do you think they listen to Christmas songs, or see church programs, or wear pretty dresses?

I copied and pasted that picture from Our Road to Adoption. I named it "cribs". I believe the 2 boys in the nearest cribs are being adopted as we speak. Their new mom-to-be said this is where the children in this orphanage spend their ENTIRE life! In cribs. Unless they are fed or changed. She also said the children often have self inflicted injuries from banging around trying to gain stimulation.

Stimulation is so extremely important for all human beings, especially ones with disabilities such as low-muscle tone which is seen in most people with Down syndrome. Part of Calvin's daily therapy includes brushing (using soft bristle brush on hands, feet, legs, arms, sometimes back, never tummy or face), join compression, and deep tissue pressure or massage. This "wakes up" his system. Bouncing is also important. Hmmm, do you think these kids get any of that???? They don't. You know what happens? Their brain development is different from those who receive it. Many children adopted from such orphanages are diagnosed with Reactive Attachment Disorder (R.A.D.). R.A.D. can be prevented.

Attachment can be another post in itself. It will be, because my first experience in learning about it was with Karyn Purvis. I have spent time with Karyn and her co-worker Dr. David Cross. When you go to Reece's Rainbow website (New Family Page) and read about becoming an adoptive parent, you'll find a list of things to do, which includes #14. read The Connected Child by Karyn Purvis. She is a wonderful woman who has done a lot of work with adoption. I find my life really curious when I look back. I wonder how long God has been trying to steer me in this direction.

I found today's post from the mom-to-be at Our Road to Adoption interesting. The nannies at the orphanage were asking her if people with Down syndrome in America are really actors. She said "yes", and that some have jobs and live on their own. Wow!!

I will leave you with this. I linked up to it a couple of months ago. However, I won't assume you saw it: video

I realize your money is not mine to ask you to give. I will post pictures of Calvin's smile, and a video, but it's not over. You can donate to Reece's Rainbow at anytime if you decide.

Merry Christmas!


Thursday, December 23, 2010

Shameless bribing..

I have cute pics of Calvin smiling!! AND, I'll post a video of his giggle. Confused? Read my previous 2 posts.

If you have donated to Reece's Rainbow, comment here and I'll count it. But, I feel like I'm parenting, I'm always giving in! Ha Ha Ha! I'd be happy with 5!

You know, another blogger did something similar and requested 100! 100 comments, I'm asking 10! She had 100 comments within a day...

You can do it, it is easy and you'll feel good, I promise!

If you want to win that iPad, you better hurry, it ends soon, in a couple of days I believe.

Wednesday, December 22, 2010

Not going to post anymore...

...until I have 10 people who comment that they donated towards Kareen's adoption funds...you can donate $5.00 and there is no tax or shipping and handling. You can use a credit card or PayPal. Of course I hope you donate more, but every dollar counts. I hope I can blog again, or some of you will miss us! :)

When you donate, make sure to click here and post comments to win the iPad! How cool would that be? Joe just ordered a keyboard for his work iPad and I saw it, it was pretty cool (better than without the keyboard in my opinion).

ready, SET, GOOO!!!!

Win an IPAD!

Lily's mamma, Patti, is hosting another give away...this time for an iPad! Please visit her blog here to find out how to enter. Patti found an orphaned girl who will be going into an institution very soon. Her name is Kareen. Kareen was born January of 2007, so she will be 4 next month. Going to an institution is a death sentence for many children. It is so sad it hurts. Take a moment and imagine yourself at the age of 4, in an orphanage, then transfered to an institution where there are only new faces and poor conditions to live in. It is not fair...I think of how scary this must be for a young child.

Kareen is the other child who will receive $$ from me today. The next time I blog, my family will have donated $200.00 towards children with Reece's Rainbow. To visit Reece's Rainbow, click on the picture in the right column, "My Cliff". Thank you, and good luck winning the iPad! The real winner will be Kareen!

They make it so easy!

My kids make is so easy to love them. Of course a good nap (for them and me) helps! Nolan has been very crabby for a couple of weeks. He was testing us to see how long he could stay up at night. We had to place him back in his bed numerous times, as late as 10pm! Once the lights would go out, he would stay put. THEN, he would not necessarily nap. This charade naturally zapped me of energy. Thank you winter! I am blaming the weather and depleted outside time.

It was my dad's birthday yesterday. I also had an appointment in the morning. So, Nolan was with Grandpa Ray twice and both times they went outside sledding and hauling wood to the burner. He napped so well and is still sleeping (it's 7:30am).

Then there's Evan. Evan is a very intelligent and sweet boy. Of course he acts like a preschool boy and big brother (fights, whines, and other things he'd rather I not share), but he can be so loving. He loves animals (I'm sure I've said that before). He likes to build jungles. He asked me, "do you want to decorate my jungle?" I got to put all the animals in amongst the trees and water. Then he told me that I do a good job decorating jungles. He is a natural caretaker and encourager. He told me yesterday that our baby is the sweetest.

Then there's Calvin. I completely agree with Evan. He is soooo sweet. If anyone wanted a cute, cuddly, easy going baby, he's it. I find myself thinking of the past 5 months and I cannot believe how much has happened and how attached I've become. He smiles so much more, loves to talk to people (coo's of course!), and is so patient. He makes it easy to have Nolan around, is what I laugh about quite a bit! Oh Nolan. I'm telling you, I have quite the trio. I feel so blessed. (I could add Joe into that, too!)

This is what my computer time usually looks like (I used the photo booth and Nolan loved showing off).

Evan had his Sunday School Christmas program. He gets pretty shy about going and usually takes an animal. He insisted he bring his huge dinosaur and I told him he couldn't have it out for the program. Hmmm...he's in the white button shirt:
He left the dinosaur for his part in the program, a train car:

We sat up in the balcony so Nolan could move about freely and not cause a distraction. He did very well and yelled "again" when the songs ended.
I was downstairs and came up because Nolan was laughing and laughing! When I peeked around the corner I saw him pushing Calvin in the swing and Calvin had a huge smile on his face. I ran to get the camera but that only distracted them both. Darn it! I cannot seem to get many pics of Calvin's smile. I guess we have something to look forward to then!


These are his dad's glasses. They are so dorky! Aunt Doop gave them to Joe when we went to California quite a few years ago. I do think they look cute on Nolan though! He's been walking around with them for days...


Sunday, December 19, 2010

Max

Please pray for Max and his family. Max is about Calvin's age. His mom, Melissa, contacted me regarding his feeding issues. Her most recent post strikes a chord in me. I remember those super stressful feeding days. It is so hard to explain what it's like to not have your baby even be able to drink milk from a bottle. There are so many possible factors that play into it. I pray Melissa can get a break from this and have a bottle baby (or nursing baby if that is her desire), not a tube baby. She wanted to nurse like me. Max needed OHS, like Calvin. Max and Calvin have 2 year old siblings that are a day apart. She was right when she said we have a lot in common.

This all brings up the book that I just read (I am pretty sure I have read more books this year than I have in the previous 30 years of my life - and yes, I'm 31, for those of you doing the simple math!). This book is extra special because Susanna, Verity's mom, sent it to me. Wrestling With An Angel by Greg Lucas: A Story of Love, Disability and the Lessons Of Grace. It was a quick, easy read. Mr. Lucas is the father of an adult son (18-20 years old I figure) whom started having seizures when he was a year old. Those seizures left the young man with physical and mental disabilities. However much we may want our lives to be easier, we are brought closest to God in times of great despair. That is what I learned the most with all of this. My greatest despair with Calvin was his feedings.

He eats well now. Not perfectly or as efficiently as his older brothers, but I am always saying 'thank you' to God and those of you who have prayed for his health. In a weird way, I have struggled with guilt over this. I just know how blessed we are to not have to stress over his health and feedings. I wish no one did. However, I am not going to just look the other way now. I am going to offer as much help and support to those who need it.

Again, thank you for all your support and prayers. Not a day goes by without reflection.

Thursday, December 16, 2010

What are you doing?

What calls for this? What is that?
Snow. Hot chocolate (yes, with a straw - or a hand in Nolie's case, they like that!).
It was one year ago this afternoon I found out I was prego with this little guy: Little did I know...and I thought I just needed to get in more miles and was tired from the sick kids in the house. Look at that Sykora mouth! (at least the immediate family of Sykora's)

Wednesday, December 15, 2010

Continued...

Little Cliff is so adorable. I first saw him here. This is a blog (to love the unloved) started by 4 teenage (maybe very early 20's) girls who are spread across the country and are connected to either a sibling or cousin who have Down syndrome. If you go to that site Cliff is in the bottom left-hand side of the title picture. Then, I don't know how (cannot remember) but I stumbled upon life.rearranged and there he was.

I seriously have not done anything towards adoption, so please don't misinterpret my intentions. However, he would be it, if I were (huge sigh). But, I'd like to see him have a loving family, so I am going to be donating towards his adoption fund. Then, my family (in-laws as well) is going to also donate towards Olga (visit A Perfect Lily to read about the excitement surrounding her adoption funds, and to get to know Lily and her family). I may even find another child or two.

I could not think of anything important to ask for to celebrate Christmas, then I thought about these little kids who NEED families. They NEED them. Christmas around here is about wants. "I want clothes (though my closet is full)." "I want an IPod (though I received one 3 years ago)." "I want a Wii (though I have other game systems)." That is what kept going through my mind. (Well, I did not want any of those things but you get my meaning) So, the lightbulb went off regarding these donations, and I am pleased to be thinking about people, instead of things. How about you? Do you NEED what you asked for this Christmas? If you are feeling the way I am, please think about Cliff and Olga and click on Cliff's picture on the right to donate. This will lead you to Reece's Rainbow.

I do have lots more to say about Cliff, and adoption. But this has been long enough. AND, I promise I'll post pictures in the next day or 2 (we have plenty of snow pics coming). Oh, Cliff's birthday is March 30, 2010. The same day as Evan's....a very exciting day filled with lots of sweet memories. I wonder what Cliff's mom feels about that day. It breaks my heart. I hope he wasn't taken from her (that happens you know, some parents do not even get to choose whether or not they get to raise their child with a disability).

I found him!


I found the boy I want to adopt. This is Cliff. Guess when his birthday is...


to be continued...



Monday, December 13, 2010

Breaking it down...

Okay, wait, I do want to say something to Katya:

"Sadly there is nothing we can do with these people in my country. (Russia). I mean….sad to say they cannot take care of themselves or contribute to society. So…it is all we can do. Maybe the conditions should be better, but many of them are violent and mentally unstable. So we have no other choice. Sorry It is sad…but one day I hope they will all find peace with God.” ~Katya

It is not only sad, it's untrue.

There are things you "can do with these people". There are numerous resources, including ME!

Who are "these people"? People with disabilities is what I am assuming, not just people with Ds.

As my brother Jason (a sheriff's deputy) said, "We do not even treat criminals this poorly".

They (uh, I hate putting Calvin in a category, but he is to a point) can take care of themselves (ever read Expecting Adam?). Example from Calvin? He cries when he needs something. That is self-advocacy in a pretty simple form, yet has BIG implications.

They can contribute to society. To say the least many hold jobs in our country. I read this when I was pregnant. Read the section on "If people with Ds ruled the world". There are also such things as indirect contributions, such as the love and affection and qualities that will become of Evan and Nolan because of their brother's disability.

Maybe conditions should be better? There is no maybe about it.

Consider the reasons a child is violent or mentally unstable, it could, it does, have to do with their "conditions". Ever heard of Reactive Attachment Disorder?

We ALL have other choices. That is a way of taking NO responsibility. When you're a parent, it's time to take on responsibility. Even if you're not a parent, you are responsible for things. Some people do take zero-very little responsibility, and I know how much I like to be in their company.

Don't be sorry, do something about it. Sorry indicates a person will change their ways. It shows remorse, which calls for a natural progression to change, it's classical conditioning at its finest. Most people do not like feeling remorse. So, we avoid it by making healthier choices. Those who do not feel remorse are the ones I worry about, not people with disabilities such as Ds.

In conclusion, if newborns are raised in a healthy environment with caretakers attempting to provide for all their needs, they will have a higher chance of turning out to be mentally stable contributing members of society. Of course there are many factors involved, but isn't it clear that treating people poorly does not lead to a positive outcome?

I hope Katya finds peace with God someday, her and the rest of us for our imperfect ways.

It's true, it's sad, it's hurtful, it's full of pain...

Beliefs such as these are commonly held about people like my child, Calvin:

"Sadly there is nothing we can do with these people in my country. (Russia). I mean….sad to say they cannot take care of themselves or contribute to society. So…it is all we can do. Maybe the conditions should be better, but many of them are violent and mentally unstable. So we have no other choice. Sorry :( It is sad…but one day I hope they will all find peace with God.” ~Katya

The first time I brought Calvin to the dentist I brought him into a room and tried nursing him. He was one month old. He did not nurse. However, I looked at him and told him that he has to do this. He has to show people that he can do it. [side note: from the time I was pregnant and found out about Cal's diagnosis and the possibility that he might not nurse, I kept saying "even if he doesn't nurse until he is 4 months old...". I find it extremely awesome that he started nursing on exactly the day he turned 4 months old (technically he turned 4 months at 11pm and the next morning he was no longer on a bottle)].

He, we, you, have the ability to make big changes!

Words cannot be spoken about such things as Katya's remark, because it would be endless (for me). However, I would like to ask this commenter (on a fellow mom's blog - A Perfect Lily, to right) who exactly needs to find peace with God? Who wouldn't be mentally unstable if their parents abandoned them at birth to a life of being tied up to a bed? You bet I would be mentally unstable, to say the least.

Patti, Lily's mom, is hosting a fundraiser for a child, Olga, who is up for adoption and will be placed in an institution in January. I have not written much about this process, but I will. Why? Their names are God and Calvin. "Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12

I will do everything I can for HIM! Sure, it's a process, and it has not been the easiest. I am blessed. Calvin is healthy! He has not even as much as had a cold and now that his heart is fixed, I cannot look at him and think of one reason I would need a doctor in his life at the moment. Thank you God! Thank you supporters for your thoughts and PRAYERS!

Please pray for Katya that her heart to be softened to the sweetness and value of children with disabilities.

Wednesday, December 8, 2010

I love this:

Thought I'd share (yep, on my way to bed I stopped over at a couple of blog homes and the clock is ticking away...)

From "Enjoying the Small Things":

There is an ancient Native American story about an old Cherokee who told his grandson about the battle that goes on within us. "My son," he told him, "Inside every one of us dwells two wolves, one evil, one good. The evil one is angry and jealous, full of regret and arrogance, greed and sorrow, guilt and self-pity. The other is good. He is kind and loving, full of hope and peace, joy and compassion."

The young boy thought about it for a moment. "Which wolf wins?" he asked his grandfather.

The old Cherokee smiled and simply replied, "...the one you feed."

It's been a while...

Now that I am not pumping regularly, I do not sit down at the computer often and therefore do not post as much as I'd like. So, I'll try to get in as much info without it being a book, cuz if you're like me, you don't have time for that!

The Kalahari was fun, but too short for such a long drive. Calvin was such a good buddy. He laid next to me during the typing of the previous post and fell asleep. What a sweetie.
It has been obvious that we have not had a regular schedule for weeks (surgery was 3 weeks ago, then Thanksgiving weekend full of activities, all followed by the trip...). Kids have been whiny! Calvin continues to sleep through the night though and I'm still waking him in the morning to eat. He is improving with nursing which is exciting because it is so good for his oral development and exactly what we wanted for him. I think he appreciates the closeness and extra time in mommy's arms.




Ugh, I am reading my Magic Lantern book to figure out how to get better pics in low-light settings. I do not like flash but then end up with a blur...any ideas? Feel free to share, I am new at this. I will look up video tutorials, I do so much better with people than words on paper.







We took a trip to the dentist yesterday and Calvin now has oral orthotics. I'm not sure about these yet...I admit. I want to fully believe they will help Cal's development, but it's strange to think these two little items can do that. They are flexible and stay in okay with Polydent, or Polysure, whatever it's called (not able to check right now). The idea behind them is they change the natural posture of the tongue, bringing it up and out of the airway, allowing increased oxygenation. Now, I'd like an oximeter (instrument to test O2 levels) to confirm that. The cost was $750.00, I was wrong about that earlier. Each follow-up is $85.00. Stress, stress, stress! It's one thing to spend lots of money on stuff you know helps, another when you don't really know...I'm giving it a fair chance since I do not have people out there whom have paved my way.
As I prepared for the trip to the dentist, I became joyful. I knew they'd want a full update. The last time I was there was just before combating thrush and an infected eye; thickened foods; blood pressure meds; not nursing (or even latching); no supplements; OHS. Lots and lots of change. He is so healthy! It is truly a success story and I am so pleased. Life is settling down and I am so grateful for this because I know how fragile children's health is.

This is all I'll type for tonight. I am tired and I said I'd keep it short (well, it's sort of short). Plus, pictures are more fun anyway!!