A view into the life of a family who encountered a different future than expected, but has become all the richer for it.

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Wednesday, April 30, 2008

Daddy Loves Victoria

When Elyssa was born in July of 2005, Mark took up the role immediately of being a great dad. He loved to hold and take care of Elyssa just as much as I did (except those middle of the night feedings!!). Eventually, Mark came up with a little song that he just made up one day while probably changing her diaper. The words are as follows:

Daddy loves Elyssa
Daddy loves Elyssa
Daddy loves Elyssa
Loves her very much

As Elyssa grew and started speaking, Mark would sing the song to her and have her fill in the word “much” at the end of the song. This became a cute little ritual between the two of them and Elyssa loved to be loud when it was her turn to say “much.” For those of you who know her personally, you know she has a flair for the dramatic side!

Mark would sing the song to Elyssa and then he would also sing the song inserting “momma” instead of “Elyssa.” Elyssa came to expect this so when Mark would ask, “Who else do we sing this song to?”, Elyssa would say “momma.”

When Natalie came along in January of 2007, Mark started singing the song to her. He would still sing the song to Elyssa and then he would ask her at the end of the song, “Who’s next?” Elyssa would make sure he inserted Natalie’s name and then my name. This list grew to include MeeMaw, Paw Paw, Grandmother, Granddaddy and other family members and friends.

A very touching moment for me, that I happened to catch in the form of a photo (which is attached for you to see), was Mark singing this song to Victoria while we were in the hospital. As he held Victoria in front of him, he started singing …

Daddy loves Victoria
Daddy loves Victoria

By the next stanza, his singing had turned to a whisper …

Daddy loves Victoria
Loves her very much

By the end of the song, he and I were both crying. It was a very special moment and I’m so glad I have a picture to remind me of that moment.

I think now about how our Father sings over us. I can imagine His beautiful song to me:

Abba loves Heather
Abba loves Heather
Abba loves Heather
Loves her very much


“The Lord your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with His love, He will rejoice over you with singing."

Zephaniah 3:17

Tuesday, April 29, 2008

Chubby Cheeks

When Victoria was born, probably the most visible sign of Down Syndrome, to me, was her thick neck and chubby cheeks. She didn’t have a “normal” slim neck like most babies. I have to admit that her looks bothered me. My other two girls were relatively “pretty” (or so everyone said) when they were born and Victoria definitely looked “different” to me.

I remember the hospital photographer coming into our hospital room on the third day of our stay at Women And Children’s Hospital asking if we would like a picture taken of Victoria. I always told Mark during my pregnancy that I never wanted us to treat this baby any different than our other girls. I planned on us having her photo taken in the hospital and I also wanted to purchase a “baby plan” with our regular photographer to document her first year of life like we did with Elyssa and Natalie. I wanted her to know that we were proud of how she looked and who she was. But, as I sat in the hospital room still stunned about her having Downs and feeling in shock about her looks, I questioned if I’d want those hospital pictures after all.

We, of course, agreed to have the photos taken and Mark and I both thought they turned out horrible. (I’ve attached her hospital photo for you to see it.) From the proof we couldn’t tell a whole lot, but we knew that was as good as it would get with the amateur quality of the picture and photographer. We decided to purchase a package and were totally dissatisfied with the pictures once we saw them in full size. I remember crying when I saw the pictures. I could barely look at them.

We debated giving the pictures to family once we got home and spent more time looking at them. We eventually took a picture of Victoria with our own camera and sent that out with our announcements. We thought we did a much better job of getting her photo than the hospital photographer.

As I look at Victoria now, I see a beautiful child. As I fed her today and held her over my shoulder to burp her, I couldn’t help but snuggle up to her chubby cheek. The cheeks that I once could barely look at, I now love. I receive comfort as I feel my skin next to hers. I feel ashamed that at her birth I didn’t initially feel love for her and judged her by her looks and disability. My prayer for her is that as she grows up, people will take time to know her. I want them to see what a sweet and beautiful girl she is in the inside and get past what they see on the outside. There is a lot to love in this special gift. May others not make the mistake I made and judge too quickly what life will be like with her.

I think as she grows, I will always love snuggling and kissing on her chubby cheeks. I think God gave her those cheeks to remind me that no matter how “ugly” and “unattractive” I look in my sin, He still wants to snuggle His face against mine and let me know He loves me no matter what, too.

Thank You, Lord, for chubby cheeks!

Thursday, April 24, 2008

Twins???

Ever since I was in high school, I remember telling my family members and friends that when I got married one day I would probably have twins. I was convinced that I would be the one in our family to have twins. See, someone in my family should have twins in my generation because my mom and aunt are twins. We were told in our family that is something that usually occurs every other generation. I think the reason I was so convinced of this back then was because I was as skinny as a bean pole. I knew I’d probably be the one to have to endure that pain since it would be almost impossible to squeeze two babies out of my tiny little body, much less one baby!

Okay, maybe that was part of the reason. The other part of the reason was that God had put something inside me that made me really feel like I’d have an unusual pregnancy. I assumed that meant twins were in my future, but looking back now I was mistaken. However, God was preparing me back then for something different and I just thought I knew what it was.

I remember an incident that occurred one particular night at my church while I was in rehearsal with our praise team. Two of my friends (Amy & Alicia) were sitting on the front row of the church and I could tell they were talking about me. I asked them what they were talking about. They said that they thought that I’d have twins one day. Keep in mind that this was before I’d had any children. We laughed about it and I told them about my always feeling like I’d have twins. They thought I had the laid-back personality required for having twins.

Looking back now … isn’t it funny that other people knew I’d have something unique in my life concerning the birth of my children, too? We all thought we knew what God’s plan would be, but He sure surprised us, huh? But, the thing we all knew was that He had already equipped me to handle the extra stress that would come along with a special pregnancy and birth.

Thank you, Lord, that You place in us the ability to handle whatever You send our way. And, You allow just enough stretching to cause us to run to You for help.

Wednesday, April 23, 2008

Trust You Lord

It’s interesting to see how God prepares you for the future when you look back on your past. I say that because today I was listening to some old cassettes of songs I had written several years back. Most of them are worship songs to be sung in a church worship setting. And, keep in mind I’m a simple writer. I don’t claim to be the best songwriter or even a good one. I just write. Anyway, as I was driving in my van to an appointment today I came across a song of mine called “Trust You Lord.” I wrote this song during my “single years” of more than six years ago. You’ll see why I was brought to tears hearing myself sing these lyrics in light of my present circumstances.

TRUST YOU LORD
VERSE 1
I will lay my hurting heart at Your altar
And trust You Lord
Trust You Lord
I will trust You with my faith that falters
I will trust You Lord

I will lift my empty hands to Your altar
And trust You Lord
Trust You Lord
I give my life a token of surrender
I will trust You Lord

CHORUS
I will trust You Lord
After all look at all the miracles You do
I will trust You Lord
I give You my mustard seed of faith
And I will trust You Lord

VERSE 2
I will lay my joy and dreams at Your altar
And trust You Lord
Trust You Lord
I will trust You when the time is uncertain
I will trust You Lord

TAG
Handing my heart over to You
Putting my faith in all that You do
Knowing that You love me
I will trust You Lord
I will trust You Lord
I will trust You Lord

Monday, April 21, 2008

The Beginning: Part 2

This is an email I sent out on Wednesday, March 19th. The name of the email was called "Life With Victoria." Hope you enjoy the read!

LIFE WITH VICTORIA

Well, it's been a little over a week now that Victoria's been with us in this crazy world and we are loving her so much already. She is a sweet baby and I find myself hugging and kissing on her every chance I get. Elyssa would like to be doing the same, but she has been sick so I try to keep her at a distance. So far all Natalie has done is pull Victoria's hair once. I try to keep her at a distance too, since she doesn't know how to be gentle yet! Ha!

Last week was very overwhelming to say the least. To go to my doctor appointment Monday morning (the 10th) and then to be delivering Victoria at 7:14pm that night was not what I expected that day. I was so unprepared for all that would happen in the hours ahead.

I knew what the doctor's were telling me all along about Victoria's health conditions, but I was still praying for God to work some kind of miracle that would prevent her from having Downs or any heart problems. I know God could've done that, but he chose to bless us in an extra-special way. I don't know that I looked at Victoria as an extra-special blessing last week. All I could think of were things way out in the future. I was so overwhelmed with all that might lie ahead for us and for her. I felt like my life may be over somehow.

The best thing that could've happened for me is to actually bring Victoria home. Living life with her this past week at home has been a blessing to me. I have learned to focus on today. What does Victoria need today? She needs me to change her diapers, feed her, burp her, love on her ... just like I did with Elyssa and Natalie. The worst thing I can do is worry about the future.

I admit that I have had hard moments when I break down, like when I bought a baby book for Victoria the other day and I cried when I thought ... will she be able to read what I write about her in this book? Will she understand everything I jot down in here? These are just a few things that I've thought over that cause me to feel sadness or experience a "grieving" over the life she may not have that I hoped for her. But, God reminds me that before Mark and I ever met, He knew what my future held. He knew that He would give Mark and I Victoria to raise for His glory. I never pictured myself to be the mother of a special-needs child, but it's weird to me that God did. He knew that He equipped me for this job when He formed me in my mother's womb. So, I just have to trust that He knows what He is doing in giving me this sweet little girl.

The most precious thing that I've seen since being home with Victoria is how Elyssa wants to love on her. Elyssa doesn't know that Victoria has any problems. She just sees this sweet baby and wants to love on her. I know that Elyssa and Natalie will always love their sister and will probably not even realize for a very long time that she is "different." What a wonderful love! I sense that same love from our families and also from our church family. Everyone has been so sweet to us and we truly feel an unconditional love for Victoria already.

Please continue to keep Victoria in your prayers. We meet with the Pediatric Cardiologist on March 28th. I'm sure we will begin talking over a plan for Victoria's heart surgery and when that might be. Pray that God continues to work in her body and that He provides healing as only He can.

Pray for my sanity in raising three girls under the age of three! It's been a little hairy at times and I'm so thankful for all the help we have had from family and friends. I'm sure as I get into a routine with Victoria that things will settle down some.

PS - Some of you might not know that Victoria was born on the 10th and my birthday is on the 13th of March! Interesting story ... the morning of my birthday (2am), Mark had to rush me to the emergency room because I was having an allergic reaction to the pain pill I took the night before at 10pm. Interesting birthday present, huh? The hospital doctor and nurses hooked me up to an IV and gave me a large dose of Benadryl to relieve my swelling throat!!!

Thanks for all your prayers, friendship and love. They have meant the world to us during such a time of transition. All I can say is ... to God be the glory!

Sunday, April 20, 2008

The Beginning

My mind was flooded with a million questions and my heart with a million emotions as my baby was born at 7:14pm on March 10, 2008, and thought to have a strange, genetic disorder called Down Syndrome. She was what you also call a "blue baby" when she was born. She had been thought to have heart defects from ultrasounds done by my specialist and also a pediatric cardiologist prior to her birth. These defects were confirmed shortly after her birth. Our lives were to be changed forever.

I could tell immediately after her birth that her cheeks were especially chubby, her neck seemed to be thicker and her fingers even looked different than her sisters did at their birth. I did notice that her eyes seemed to be set further apart, but that could've been an illusion created by her flatter nasal bridge. I wasn't sure if I thought she was a pretty baby or not. She was just different.

You would think that being told of her possible problems before her birth would've prepared me for the event, but I still wasn't. In my whole life I've never sobbed with such despair as when the social worker came into my hospital room two days later to tell me of early intervention programs available to my husband and I for our little baby. She told us of mental and physical problems that our little girl may encounter as she grows. I know she meant to help by giving us this information, but I was not in a place to be able to handle it. I had never imagined myself to be the mother of a special-needs child. Never in a million years had I dreamed this would happen to Mark or me.

We are both intelligent people. Mark graduated first in his high school class and was Valedictorian. He went on to earn a Master's degree from seminary. I was a college graduate in music and was teaching in a college. It just doesn't seem logical that we could have a child that will have trouble learning, speaking, walking, eating, etc. There must be some mistake. Maybe this was meant for another couple. But, all throughout my pregnancy God kept bringing me to a passage in the Bible ... a passage I must cling to so Victoria's life makes sense to me ... "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. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, O God!" (Psalm 139:13-17)

Victoria was no surprise to God. In fact, He formed her to be just the way she is. He knew and recorded all her days before any of them came to be. He knows the lives she will touch, the laughs and smiles she will bring to people and how she will change her parent's and sister's lives in such a wonderful way. We did not ask to be given her nor did she ask to be given to us. But, God somehow knew that we needed each other. He knew that we would be good for each other and that Mark and I could handle being her parents. Just like He knew I could handle my 2 1/2-year-old and the crazy behavior she is having at times right now or how her 15-month-old sister eats like a cow and swings her right arm so cute when she walks ... He knew I could handle Victoria and her challenges.

No matter what emotions I experience on this journey, I can rest in knowing that God is for me. I wrote a song several years ago called "Your Bottle" and it really hit home with me during my pregnancy and even now when I shed tears about this new life I have. The following verses were the inspiration for my song (Click on the title of this post, "The Beginning", or the link http://www.box.net/shared/ajk3ouask4, to hear the song "Your Bottle"):

Psalm 56:8,9 (Amplified Bible)
"You number and record my wanderings; put my tears into Your bottle ... are they not in Your book? Then shall my enemies turn back in the day that I cry out; this I know, for God is for me!"

Thank you, God, that you have planned out my days and that You saw fit to bless me with three sweet girls. They are all blessings from You, no matter what the future holds. You are for me!

Heather