Rebekah and Caleb

In March Rebekah and I had the great privilege to visit her trisomy 18 friend, Caleb, for his 2nd birthday.

Here are a few more photos from our 'wedding' between Caleb and Rebekah taken by Ocala Star Banner journalist, Jacqui Janetzko. Thank you, Jacqui, for these beautiful memories!!

 

My friend, Jeannette (Caleb's Mom), is really blessed because their local newspaper is following Caleb's life story. They have followed his birthdays and major events, and will be posting monthly articles on life with a special needs child. In addition, the Adamyk's have been asked on several occassions to give a presentation at the local university to med students on trisomy 18. What an awesome way to educated these students so that they will hopefully manage their future trisomy patients on a case-by-case basis, and not under the assumption that all children with trisomy 18/13 are incompatible with life!

I am so proud of Jeannette and so happy for the positive impact Caleb is able to make on others! And I am so glad that her local media is sharing Caleb's story!  I wish our local newspaper or news stations would find a message of hope like this as something newsworthy...

The VALUE of One Extra Chromosome

Trisomy Awareness Month is coming to an end. There are a lot of thoughts I wanted to share, but I don't get as much time to blog as I used to - which is a good thing! It means I am not in a hospital room somewhere, but living life with my family!


This video from a Trisomy 18 Angel Mom, Katie Weaver, says it all!  It is full of children with trisomy 18, 13, 9, and other similar variations. (Rebekah has a little video blurb at 4:18!)  Katie is also the one who created all of the awesome t-shirt designs on my Trisomy Awareness Month - Online Support post.

How I wish all of the doctors would watch this video! Too many of them consider these children incompatible with life because of an extra chromosome. They assume that these beautiful children will never be of value to society, and therefore can be tossed aside, refused medical care, or terminated before even given a chance.  Bearing them is considered a misfortune, and supporting their life is a burden to society.


The definition of value is relative worth, merit, or importance; or the worth of something in terms of the amount of other things for which it can be exchanged or in terms of some medium of exchange. In today's society, we place value on a person based on how they look, how smart they are, how much money they make, how 'successful' they are, social status, popularity...   


But God has a different definition of value. Genesis 1:7 tells us that God created man in his own image. And Psalm 139 beautifully explains how God sees and knows us, how he created our inmost being, knitting us together in our mother's womb. Your see, God desires for ALL of us to create value in this world. He wants us to make the world just a little bit better than it was when we got here - and the "little bit better" that we create is our true value to the world. God places infinite value upon all people, no matter their race, gender, social status, economic situation, or (dare I say it?) genetic and health disorders!  Our length of time on earth also does not determine our value.  Jesus' ministry only lasted approximately 3.5 years - yet his life changed the course of history, affecting world religions, our calendar, and the lives of those who come to personally know him.


The children in this video (and those like them) add more value to the world than some of the world's most 'successful' people. They teach us unconditional love, they teach us an appreciation for all of the things we take for granted, they teach us about miracles and that scientists and doctors don't know everything and can't explain everything, they draw us closer to God and show us the real 'value' of life!  And the bottom line is, they are also created in the image of God.  If we love our God as we are commanded to do, we will also love those that He loves!

So I choose to see the value in every life, 

and to love those that He loves.

Today is a Gift!

12/5/09

On our way to Ohio Thanksgiving week, the boys were watching Kung Fu panda and the wise old master said "Today is a gift, that is why they call it the present." I changed my facebook status to see if anyone could correctly name the source of that quote and, much to my surprise, it WASN'T the master, it was Eleanor Roosevelt! ;-) It actually comes from a longer poem. But the part I love is:

Yesterday is history.
Tomorrow is a mystery.
Today is a gift.
That is why they call it the present.
- Eleanor Roosevelt

Speaking of gifts, Isaiah had a birthday party last night at a local inflatables place for preschoolers called Giggle Bugs. OK, his birthday was 11/28, but we believe in procrastinating in our house. He had a choice of a party, or a present. He's not stupid, he picked the party so he could have lots of presents!

Anyway, we were all there, including Rebekah. A lady came up to me at one point and asked if I minded telling her about Rebekah. Rebekah was in the car seat in the stroller decked out with her 'cranial remolding orthosis' (Starlight side-opening band helmet), AFO's (ankle-foot orthodic splints - Jump Start Bunny in pink, of course), and, of course, her trach with the big old HME sticking out. She normally draws looks with just the trach, but today, she looked like a space cadet on a moon walk mission! (Couldn't resist the pun on inflatables/moon walks) :-) So I spent a few minutes telling her Rebekah's story and gave her my blog link so she could keep up with her. (Not that my blog is current, but I guess that will be my New Year's resolution! Then again... maybe not.) She asked me if I minded the looks (stares) and questions from people about Rebekah and I said that I didn't. I said that it gives me a chance to glorify God for our sweet precious gift, and to educate people on trisomy 18. (I don't expect anyone to feel sorry for us because of Rebekah. We love her so much and do believe she was given to us for a reason. So I really never have an issue with educating people, and I hope it is a door to discussing God with them.)

Later that evening, I relayed the Giggle Bugs conversation with Michael, and he said that when you only expect 24 hours (or less), then every day is a gift! If you recall, Rebekah's beginning was so rough, she stopped breathing before the cord was even cut at birth. The first several months were very, very hard. Today, when we think about Rebekah and all that she has already overcome, we certainly believe with all of our hearts that each day with her is a gift. And that is despite the countless doctor visits, hospital visits, calendar/lifestyle changes... (You see, when you have a 'medically fragile child', your time is filled up as care-provider and nurse, you leave the house less, invite fewer people over, inevitably miss things because you don't want to bring your child, have less 'me-time', and you can't just have anyone watch them... Lots of people probably really don't think about the massive family changes that result when having a special needs child. The divorce rate for couples with a special needs child is VERY high and scary!) But really, because of where our 'center' is based, this current life has become our new 'norm' and we've adjusted and move on happily - because it is so much better than the alternative!

But the whole conversation really got me thinking...

As much as Rebekah's life has caused what others would see as inconvenience and heartache, we have, indeed, celebrated everyday with her and do not complain because we feel blessed. But what if I applied that concept/behavior to my WHOLE life? I mean, setting Rebekah aside for a minute, what is the focus of my own attitude and view of my personal life?

Well, I don't do such a great job there. I am frequently unhappy with the way things go, stressed out and frustrated, wishing I had this or that, or unhappy with someone else in my life. But WHY? Well, I guess in my mind, I have an expectation that these other events and people in my life will be there for the long haul. So I have 'time' to be mad about it today because I can do something different tomorrow. But the truth is, NONE of us are guaranteed another day!

In fact, my cousin's ex-wife tragically died this past week from a head trauma falling down steps outside her house. She was in her early 30's. Her four year old was with her at the time. I am SURE she didn't wake up that day thinking 'today could be it!' And I don't know about her, but I know that I personally don't live each day like it could be it.

But between her accident and having this gift conversation with Michael, I've been thinking real hard about my attitude of gratitude. There are some people that I am harboring anger towards, there are some personal behaviors I have not been too happy with, and I certainly have not been modeling to my kids the level of gratitude I expect from them! So I am going to try to start each day making this part of my morning prayer - that I would truly believe and live like today is a gift!

This is the day the Lord has made, Let us be glad and rejoice in it.
Psalm 118:24

Each day truly is a blessing and a gift! And I am going to be more committed to living each day like I really believe that statement.

Don't waste your life thinking you'll fix it tomorrow, deal with your hurt tomorrow, get right with God tomorrow. TODAY is the gift. So why don't you join me on the quest to appreciate today for the blessing it is...

Teach us to realize the brevity of life, so that we may grow in wisdom.
Psalm 90:12

God's Gift

My Aunt Margie's friend wrote this poem for us.


Margie,
I felt this inside me and had to put down in words hope Susan and her family like it.

GOD'S GIFT.

One day a special spirit, that lived with Heavenly Father;
asked if she might go and have an earthly mom and father,
the Lord said "oh, my little one, it's hard to let you go;
but I know of a special set, who'll want and love you so."

"but since you are so special, you'll have to promise this;
that you'll return back home to me, when you feel My angels kiss,"
"I know your earthly mom and dad will hate to see you go;
but they will know I love you, and My love for them will grow.

"I don't know when I'll call for you, but I know that you'll be loved;
but if you get to missing Me, just look for Me above,
I'll always be there with you, from the time you leave My side;
remember that I love you, in your heart I will abide."

"So off you go my little one, you're family waits for you;
and show them how I love them, and that my love is true,"
so on her way she ventured, to meet her mom and dad;
and they knew in an instant, the blessing that they had.

They knew that she was special, and felt their Fathers love;
and thanked Him for this blessing that He sent from up above,
they understand His feelings and knows He'll miss her so;
they know how very difficult it was to let her go.

Now our dear Rebekah, has an earthly mom and dad;
she has brought His message, and so their hearts are glad,
they know their Father loves them, and chose them for this task;
to love our dear Rebekah, there's nothing else He'll ask.

written by: Evelyn Gilmartin
May 8, 2009

Thank you, Evelyn, for your sweet poem and thoughtfulness. Yes, indeed, Rebekah is a gift to us and to many others. She is a reminder of the sanctity of life and that God blesses us, even in the midst of unpleasant circumstances.

Let The Countdown Begin!

We had a phenomenal doctor appt yesterday! So incredible, in fact, that I can hardly contain my excitement! But first, I need to recap the last month and a half so you can appreciate the significance!

About 6 weeks ago, Rebekah's measurements were taken and she had gained almost a pound since the prior 3 weeks. This was great and we were excited! But the next measurements that came 3 weeks after that (about 3.5 weeks ago) were much different. She had only gained about 5 ounces, my amniotic fluid looked like it was dropping significantly, and we went through a short period of lost hope.

We have had 3 ultrasounds in between just to look at her vitals and see how my fluid levels were doing. Although the amniotic fluid came back up, vitals looked good, movement good, and we even saw her practice breathing each time, we still had no idea how yesterday's growth measurements would go. (They only do them about every 3 weeks since there is a 15% error rate and measuring week to week might give you an error versus an actual growth change.)

God is faithful and good! In the last three weeks, Rebekah has gained almost 2 pounds! She is now approximately 4 lb 14 oz! That is an incredible gain over the last few weeks! I have been doing a happy dance since then! So we have confirmed the 4/20 induction date for next Monday, and I wait for both the shortest and longest week of my life with nervous anticipation. I have released many of my fears and anxieties to God, and I am trying to enjoy this last week of pregnancy instead of freting over the many possibilities that the future holds.

I am so grateful for the many that are constantly lifting us up in prayer. I spent a lovely time last night praying with some new friends for Rebekah, I was blessed with prayer for our family and Rebekah during my MOPS meeting this morning, I am constantly receiving facebook messages and emails from those praying for us, and I have a great friend arranging for an hourly prayer group at the hospital on Monday during the induction and birth. WOW! It is such an awesome gift to be bathed in prayer and covered with love from my Christian sisters and brothers. Although I have cried much over the last 5 months of my life, I wouldn't trade this experience for anything and I have been thanking God that he has allowed me the privilege of being the mother of this very very special child. I pray daily that she will continue to touch lives, strengthen the faith of many, and help be a catalyst to lead the lost to Jesus.

So let the countdown begin, whatever is may bring!