Nichole's First Birthday! October 2nd

Today is Nichole's First Birthday!

Time goes by so fast, but for once, I am not wondering where my baby went. She is still my baby, and I have enjoyed her tremendously. Most parents get to hold their babies for a little while before their children are eager to be on their own, move around, and away from their parents. I get to hold my baby a little bit longer and enjoy her soft skin and little hands close to my face. She is a joy and a real blessing.
I believe she already knows that she is deeply loved by her family, and those friends that have now become her family as well.

Here is Nichole playing her drum and singing.

I have read birthday stories from other moms that have children with Down syndrome. I never understood why some of them described birthdays as hard, but now I know.
A year ago, Nichole joined our family and she brought with her a diagnosis. A diagnosis that would shake our world, at least my world, to pieces.
I had dreams and hopes for a beautiful, healthy baby girl, and in an instant, that all seemed to be taken away from me.
A year ago, I faced the ugliest, darkest, most shameful parts of my heart. Parts that not only am I ashamed of, but parts that surprised me. I never knew that there was in me such hardness. My heart was an evil place, with little of God's love.
A year ago, I held a baby that I wished was not mine.
But God...He knew exactly what He was doing. And through all my tears I was confronted with the fact that I was "selfishness" in a pure, and raw form.
Psalm 139:23 says, "Search me, O God, and know my heart: test me, and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting."
This was my prayer, my all time prayer, and I meant it when I offered myself to God. So here I was, being tested, with God searching my heart, and with Him choosing a little baby with Down syndrome, to lead me in the way everlasting.
Yesterday I was helping Ellie memorize Psalm 51:10, it says, "Create in me a clean heart, O God, and renew a right spirit within me." My spirit has been renewed and continues to be renewed because of Nichole.
I praise God because He did not allow me to stay in the muck of my depression for long. I praise God because even though my heart was dark, His love was abundant. I praise God because I know He forgave the depth of my darkness. I praise God because He showed me unconditional love. I praise God because He took me by the hand, and showed me the truth about His beautiful gift, His precious miracle, His princess...Nichole.
The value of her life is immeasurable. The lessons she has taught me, are countless. She is just a baby, but she is full of love, peace, gentleness, goodness. She is in the business of changing hearts, and transforming lives.
I am not the same person I was a year ago. When I look into Nichole's almond shaped eyes, my heart is touched by love itself, maybe by God.
Nichole is one year old today. I am so proud of her. She is a beautiful and healthy baby girl.
She is the baby that I always wanted, I just did not know it. She certainly is the baby that I needed, because I needed much changing, because my heart needed to be fixed. She is God's own hands in my life, and I am humbled.
Happy Birthday Nichole. You are a precious gift to all of those who know you. You are transforming hearts as you show us what love looks like. You are an angel, a little angel that I get to hold.

These are some pictures form the day Nichole was born.

What is Down syndrome?

Down syndrome is the most common (but rare) genetic condition in which an individual has an extra copy of the 21st chromosome. A typical person has 46 chromosomes. People with Down syndrome have 47.

How does it happen? Here it comes, Biology 101 on Down syndrome.
All cells reproduce, either by mitosis, or meiosis.
Mitosis basically means the cell copies all of its contents (including it's 46 chromosomes) and then divides to produce 2 daughter cells.
Meiosis is the process in which reproductive cells divide. The egg and the sperm do not copy themselves, instead, they "split" in half, resulting in an egg having 23 chromosomes, and sperm having 23 chromosomes, to make a total of 46 when they come together.
In the case of Down syndrome, the 21st chromosome (typically in the egg) fails to "split," resulting in Trisomy 21 (three 21 chromosomes) when it is united with the sperm.

What causes Down syndrome? Why does an egg fail to disjunction on the 21st chromosome?
We don't know. There are only speculations. It is believed that maternal age is a factor (since women have ALL their eggs present even BEFORE they are born, and therefore, the older the women, the older the eggs).
I was 25 years old when I conceived Nichole. At that point, according to science, my chances were 1/2500.
Now, the following is MY OPINION. Please do not take it at face value.
I believe that the reason they think maternal age is a factor is because women 35 years and older have all the pre-natal tests done. Women 35 and younger, many many times chose not to have these tests. It makes sense that you will see ANY condition more often in a population that is routinely getting tested, as opposed to the population that selectively chooses to do so.
Eighty percent of babies with Down syndrome are born to women 35 and younger!

There are three different "types" of Down syndrome.
1) Non-disjunction Trisomy 21. The most common. 92% of people with Down syndrome have this type. It is basic meiosis where the 21st chromosome did not disjunction. (As I explained before)
2) Translocation Down syndrome. This is where one of the 21st chromosomes (either from sperm, or cell) is "broken." When it gets "broken" it "splits" in two, therefore, resulting in an extra 21st chromosome. This condition is believed to be hereditary. It is believed that 6% of individuals with Down syndrome have Translocation Ds.
3) Mosaic Down syndrome. Both the cell and the sperm are "typical." The non-disjunction occurs somewhere down the line of cell division resulting in an individual that has some "normal" cells, and some "Trisomy" cells. It does not matter how many "normal" cells there are, what matters is where those normal cells would be. For example, if the cells that form the eyes are not affected, an individual would sadly not display the beautiful almond shaped eyes characteristic of Down syndrome. Only 2% of individuals with Down syndrome have Mosaic Ds.
Some people believe this might also be hereditary. There is little to no difference in development of individuals with Mosaic Down syndrome as opposed to the other two types, UNLESS, it happened at the LAST STAGES of cell division. In some cases it is even possible for a person to have Mosaic Down syndrome and not know it.

What does Nichole have? Plain Non-disjunction Trisomy 21.

Are there different "levels" of Down syndrome? Or is there such a thing as a "low case" or "severe" case?
No, Down syndrome is Down syndrome. Development is directly linked to health issues.
Nichole would be considered "high functioning" (I know, she is a baby!) but she has had no serious health problems. Other babies that have serious health problems have a harder time "catching up."

Can doctors predict how well Nichole will do?
No. Nobody can. Nichole is Nichole. Most often doctors and other professionals talk about things that babies or individuals with Down syndrome can or cannot do. But, nobody can tell me what Nichole can or cannot do, she will show us what she is capable of, and she is doing amazing! She is her own person, and she will develop in her own rate, at her own time.

Is there any way to prevent Down syndrome?
Yes, there is a way that will guarantee that you will never have a child with Down syndrome. Do not have children :) Other than that, there is nothing that you can do or not do to prevent Down syndrome, or to cause Down syndrome for that matter. It is a God thing, it is a gift, and very few are fortunate and blessed to know this beautiful and amazing road.
God chose only a few of us to have these precious babies with a little extra something :) Even though I like to think it is because we are "special," I know for me it is because I needed much changing. It is a heart and life altering miracle. I am humbled and honored God chose me to be Nichole's mom.

Is Down syndrome a burden? ABSOLUTELY NOT! It is the greatest blessing our family has ever known. And Nichole continues to touch lives and hearts of those around her. There is nothing "less than perfect" about that.

Psalm 139
For you created my inmost being,
you knit me together in my mother's womb,
I praise you because I am fearfully and wonderfully made
your works are wonderful,
I know that full well

God does not make mistakes, especially, when there is an extra 21st chromosome :)

October is...National Down syndrome Awareness Month

And you can help me!

What can you do? Well, this is what I would like you to do...

I would like you to actually add a comment. Now, I am well aware that maybe NOBODY ever reads our blog, but I like to think at least there are a few.

What should I comment about?

I would like you to ask anything you want about Down syndrome.
What is it?
Is it contagious?
What causes it?
What is life like...
What has been...
Did you think...
I have wondered if...
Would you ever...
Does Nichole...
I feel like...

You get the idea.

Now, please, please, please know that there are no stupid questions or comments, because chances are, if you are thinking that, someone else might too. It is Down syndrome awareness month, so what a better time to ask or share something about these wonderful works of art (aka, people with Down syndrome)

If there is something posted that has already been asked that you were wondering too, or something that has already been shared. Please ask again, and share again, that way I have a better idea of what people are really thinking (and I will know who reads our blog hehehe.)

God has entrusted us with Nichole's life, and I want to share with everyone the blessing that she is. I am aware that there are many misconceptions out there (I use to have many of those) and I love being able to share with others the truths that we have discovered as we travel down this road.

Thanks for your comments, and keep 'em coming!

Ellie's 3rd Birthday

I will slowly but surely catch up with all that has happened in the last few months.

Ellie's Birthday.
We celebrated on the actual day by going to the grocery store to get donuts, Ellie's choice for breakfast. That weekend, my mom and sister came for her birthday party, and so did the Frys. Ellie was so excited to see her grandma Chachi, Lucha, and cousin Mikayla.
There are lots of pictures! Hope you enjoy them :)Once Ellie saw the decorated cookie, she chose it instead of a donut. But what did she eat? Only the frosting!

Ellie and Mikayla play so well. Most of the time at home they were princesses. It was so cute.

Ellie's party was at the park. she wanted to wear her princess dress. The only way to convince her not to weear it, was if she could wear her butterfly wings. No problem!

We had a piñata. Kids loved it.

Isabelle is so cute, and so sweet.

Ellie and Mikayla sat on their own to eat their candy.

This is about as decorated as it got. I love how my friend Kristin is hiding behind the balloons.

At home we opened presents. Ellie of course was so excited.

A Preschooler!

First day of preschool.

That is right. We have a big preschooler!
Ellie has done so well. I had a parent/teacher conference and both teachers said that even though Ellie is the second youngest, she is doing awesome. They mentioned she is learning all her friends names, she loves to play pretend, and participates intently and enthusiastically in all activities. They also mentioned she is great at listening and following rules, and...making sure everybody else does too. I guess she likes to remind her friends what they are supposed to be doing :)

Our beautiful princesses

Finally I am able to post some pictures from this last summer. Our girls continue to grow and they are as beautiful as can be :)

Nichole is getting so close to crawling! She can get on all fours (occasionally) but mostly she does this backward crawl. So instead of going forward, she goes backwards and sometimes she gets so frustarted. I don't blame her, so eventually she resorts to her rolling and rolling until she gets to where she wants to.

Isn't she deliciously chubby?

Ellie is so much fun. We truly delight in her. She has an amazing imagination and she plays pretend all day long. She can be a princess or a butterfly.

Ellie at three years old still sucks on her fingers, and Nichole makes funny faces :)

Long Time

I have not posted for a very long time. It has been a crazy, busy, tiring couple of months and we are looking forward to getting back in a routine. Sadly, we do not have Internet at home right now, so I am not able to post pictures.
What has been happening so far?
Well, after two visits to Mayo, we are happy to say that Nichole has typical baby Reflux, and nothing more. We had been a little concerned because we know that sometimes children with Down syndrome can have GI problems. She will be taking some meds for a couple of months and then we will see if her "spitting up" is getting better.
Ellie is three years old now. She is a DRAMA QUEEN. She goes to preschool. She loves it, absolutely loves it!
Andy is starting seminary is just a few weeks, he is very excited. The other day he picked up an ancient looking book about Church History and was fascinated by it (yes, he was fascinated!). I get excited over fiction stories, not books printed in the 1800 years. He is definitely ready to do more studying.
I am excited to not be the MOPS Coordinator this year, instead, I get to plan our Creative Activities (just a fancy word for crafts).
Us in a few sentences. Soon we will have Internet at home, it is kind of a must when you have to go to seminary :) I will post vacation pictures, birthday pictures, family pictures, and post highlights of our "absent" time.