Three O'Clock Shop

Francesca Battistelli - Angel By Your Side

2011-04-07T09:24:00.000-04:00

My new normal...

2010-01-25T14:06:00.004-05:00

I am reading a new book. A New Kind of Normal by Carol Kent. As I was doing some shopping therapy, ( I hate to admit that this is my chosen method of re-focusing my thoughts.) I came across this book in my local discount store. I couldn't believe that, as I was reading the jacket...I was reading a summery of the life I am currently living. As I am searching for a new normal in my own life...I am curious to see what Kent, as a Christian author, has to say.

This book is for those of us whose life has not gone exactly to our plan or expectations. As I am sitting here sifting through my mental list of friends. I am not sure who this book would not apply to. Have you had a job loss? a failed marriage? a scary medical diagnosis? a loss of a relative? Anything that you would consider a major event in your life that has changed your journey's course forever? Sometimes even the "good" things in our life can take us on an unexpected turn. Has your journey been affected by a new job? an unexpected pregnancy? finding a long lost friend? All of these things change the reality that we once called "normal".

Kent quotes one of my all time favorite writers - Ken Gire. (He wrote Intimate Moments with the Savior, Learning to Love...which I have read over and over.) Ken says, "When suffering shatters the carefully kept vase that is our lives, God stoops to pick up the pieces. But he doesn't put them back together as a restoration project patterned after our former selves. Instead, he sifts through the rubble and selects some of the shards as raw material for another project - a mosaic that tells the story of redemption."

Kent says this leads to a new kind of living - "harder, but better in some ways, than before. Maddening because we hate the process but richer because of the pain."

This gives me such hope and anticipation for the work that God is doing in our family. I am not just eager to see the end result, (for I believe that won't come until we see Christ face to face.) but rather, excited to be in the process. Embracing this new journey that will tell the wonderful story of God's redemption.

I will continue to blog about the book as I work my way through it.

January news

2010-01-13T16:53:00.003-05:00

Things are going right along here. Bekah was approved for Medicaid right before Christmas. We are trying to get some old bills submitted for payment. They are supposed to cover things that happened while we were in the application process. Her eye surgery would fall into that time period.

Of course, we are having a hard time getting in touch with our case worker from Medicaid. Chris called and left a message and she never called back. He called the next two days and her voice mail was actually turned off. We just want a few answers about how to use the card and what it applies toward.

We were also able to get on the schedule with the speech therapist. There is only one who works with Babies Can't Wait for our county. She also works with children with feeding issues and that is what she will be helping Bekah with. They don't sign children up for speech therapy until they are 2 years old. So Bekah will already be in with this girl for that! Glad for that! The only problem here is that it will add another payment on every week.

We have had some confusing information about the therapy and the medicaid. Some people have told us that medicaid covers everything from now on and some say that it only covers specific things. One of the therapists told us that since Rebekah has insurance and we haven't used the therapy money from our insurance yet (the therapists aren't in our Blue Cross network) that Medicaid won't pay until the insurance money is used up...so confusing. She said that some parents actually take their kids off of the insurance so that medicaid will cover everything.

I wish this wasn't all such a guessing game.

We were able to get a handicapped parking permit for Bekah this week. This will help so much! She has some strong sensitivity issues to wind. She will choke and gag with any wind in her face. She still does not hold on while you are carrying her and with her 19+ pounds she is getting to be a little to heavy to lug around. Also we have lots of "stuffing" to carry every time we go anywhere with her. She still has to be packed in to sit in any cart or highchair so there are blankets, toys, and chair covers that we have to carry with her. Include a diaper bag and it is almost impossible for me to go anywhere alone with her...not to mention making sure the big sister doesn't get run over in the parking lot! =)

Rebekah has been working on weight shifting which will help with sitting and standing. With lots of support she can take a few steps. She has been reaching a lot better too. She has an opinion and makes hers known even though she has said any words yet. Her smiles steal my heart every day and I LOVE to hold her after she falls asleep. So sweet!

We are starting our search for what God has in store for Kayla next year with school. Kayla has been in Christian preschool since she was two and has really enjoyed it. She will graduate in mid-May and will start Kindergarten in the Fall. I still remember Miss Bitzer my Kindergarten teacher. (I also remember Joey Litzleman - he was SOOO cute!) Please pray that we can find the right spot for her next year.

PT Mondays

2010-01-04T11:48:00.003-05:00

We have Bekah's PT at 9:30 every Monday. It is the hardest thing to get up and get going for. I have to have the house in a somewhat presentable state. We, most likely, have been up through the night so I just want to SLEEP. I usually have to wake Rebekah up which makes her cry. I have to give her breakfast before therapy and hope she doesn't spit it up all over Mrs. Lydia.

On days like this, though, it is well worth getting up! Rebekah did a great job tolerating the handling. Lydia actually stayed overtime and Rebekah only fussed a little bit once. She sat up with assistance and is working hard on her balance in her pelvis. She is wobbly in her hips so it is hard for her to know how far to shift her weight.

She still WILL NOT crawl. Lydia was helping get her legs moving, but Bekah just laid her head down on the floor and dragged it across the blanket. =(

She took a few steps with Lydia today. Her legs are her strongest part and she does well bearing weight there. She still steps one foot in front of the other but may learn eventually to keep her legs apart. So exciting! Lydia wants me to practice this with her every time we head to the table to eat.

I am so thankful for all of Bekah's helpers. We have OT on Friday so we will see what happens on that front!

Rebekah Update 1/2/10

2010-01-02T20:11:00.004-05:00

Rebekah is changing every day! How amazing to watch God's hand move.

First, I want to thank all of you who are praying for us faithfully. God is so good to us! We are, in fact, getting a little bit more sleep lately (because we are letting Bekah sleep with us). Something we said we would never do, but buckled due to exhaustion.

I heard that Bekah is the new little favorite angel of a certain Sunday School class in Florida. Hello to all of you and we are so thankful for your prayers and encouragement!

Rebekah is now 15 months old and has a smile that will light up a room. She is still diligently working in physical and occupational therapy. We have had a couple weeks off from both during the holidays but are ready to start back to our schedule. We will also be adding another occupational therapist who will be working with Bekah once a week on feeding. She will move to speech once the feeding is under control.

We had a swallow study done in December and found out tat because of Bekah's low tone in her mouth and throat that she was aspirating food every time she ate runny foods. Since she is still on baby foods and milk - - the aspiration was frequent. We were very scared that they were going to put Rebekah on a feeding tube, but were pleasantly surprised when the doctor told us that we could thicken her food and take care of the problem! We go back in April for a check up with him.

We have also seen the eye doctor in December. Her eyes are both working although working independently of one another. It is strange to see her looking at you and then change eyes all of the sudden. =) They still cross every once in a while and the doctor said that he would feel comfortable doing the surgery again. We go in April for another check up and will wait till then to make any decisions on the surgery.

Some big news is that Rebekah was approved for Medicaid. This will be a huge help to us financially. Her therapy alone was coming to $240 a month. This cost and more will now be covered by Medicaid! Praise the Lord!

We got to spend a terrific time in NJ for Thanksgiving and in SC for Christmas. We are glad to be back home and looking forward to what will happen in 2010.

Much love to you and yours!

Fearless Giving

2009-11-23T14:22:00.007-05:00

Our pastor has been teaching about being fearless. This week he talked about being fearless in our giving. Even in this economy we can completely trust in our Father that owns the cattle on a thousand hills! He defines generosity as being open-handed. Since we don't own any of it anyway...being open handed with God's resources is what He wants.

At the end of the service, Pastor asked us to bring to the stage a generous gift that would bless someone else. There were two large bins on each side of the stage. He asked us to pray about it and to be generous. He then said that after every one was done giving, who ever needed financial assistance could come down to the stage and take whatever amount of money they needed out of the bins.

Chris and I sit toward the front of the auditorium and then endless stream of people giving money and blank checks overwhelmed us. It was hard to even get out into the aisle to make it up front. I was crying! People came to give for about five minutes. Then it was time for people to come get the help they needed. Pastor had to urge people because pride was holding lots of them back. Then it happened...people started cheering and clapping. Couples came, single moms came, young people came. People were crying, others were helping those around them who didn't have the strength to come down by themselves. It was a beautiful picture of the church working together as the Lord has laid out in scripture to help those who are hurting.

Last night at Journey Group we heard a first hand account of a lady who received $650 - - the amount that her ex-husband was previously paying in child support but has been neglecting to do so.

God is amazing and has a specific plan for us and for the finances He has given us to manage.

The Pumpkin Prayer

2009-10-10T12:30:00.000-04:00

Lord, open my mind so I can learn new things about You.

Remove the things in my life that don't please You.

Forgive the wrong things I do and help me to forgive others.

Open my eyes to see the beauty You have made in the world around me.

I'm sorry for the times I have turned my nose up at the good food You provide.

Let everything I say please You.

Lord, help me show Your light to others through the things I do.

Amen

Pink Pirate Party

2009-10-09T11:52:00.003-04:00

Rebekah's first birthday was a fun one! Because she had to wear eye patches for so long, we decided to have a party where everyone else could wear the patches instead of her!

She was a beautiful little pirate along with her sister, her fist mate!

Bear one another's burdens

2009-10-09T10:57:00.003-04:00

Galatians 6:2 says to help shoulder the burdens of others.

I am finding that the more I focus on others, the less I am focused on myself and my "problems". The other day at church Pastor Brian talked to us about total dependence and total surrender. He listed a whole big list of things to surrender our rights to ~ including the right to have a pity party. I was fine with the whole list except this one.

When inward focused, it is very easy to see how hard you have it. To begin to question God's authority in your life. But when we become totally dependent on Him and surrender all of the rights we think we have to Him...we begin to become something beautiful that He can use to help others.

Bearing the burdens of others isn't easy. You really have to put down the thing you are holding on to have both hands empty. But what a neat position to be in to be able to lift someone else. Have you ever had someone come in and help shoulder your burden? Isn't it such a hugh relief? Any amount of help is a large help in the person's eyes who is receiving it!

Welcome To Holland by Emily Perl Kingsley

2009-10-09T10:24:00.005-04:00

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

* * *

A sweet friend whose child shares Rebekah's diagnosis passed this along to me.

Happy Birthday Bekah

2009-09-21T09:46:00.002-04:00

You are my sunshine, my only sunshine.

You make me happy when skies are grey.

You'll never know dear how much I love you.

Please don't take my sunshine away.

The other night, dear, as I lay sleeping.

I dreamt I held you in my arms.

When I awoke, dear, I was mistaken;

And I hung my head and cried.

Thank you Rebekah Anne for being a sunshine to our family. Your warm smile draws everyone to you. This birthday is very stormy and wet outside; but there is sunshine in the house today.

You...

R esemble Jesus (for you are made in His image!)

E mbrace each day with determination

B righten a room with your smile

E stablish relationships, even at this young age

K eep trying even when you are tired

A ccept what comes your way

H ave such a happy countenance

A re an inspiration to me

N otice friends and family

N ever stop smiling

E at peas with a vengeance

Thank you Bekah! Mama loves you!

You are Fabulous - Or as Kayla says, Fab-Lee-Ous

2009-09-20T15:09:00.006-04:00

From the moment Kayla was born, we were telling her how beautiful she was. Is it any wonder that she has the best self-esteem of anyone that I know. Never once has she said, "I am not sure about this outfit...let me go change really quick." Me on the other hand.....

Somewhere our outlook of ourselves changes. We become critical and overly attentive to what others are thinking (or not thinking) of us.

I can remember the day like it was yesterday. My sisters and I went to a Christian school and they had just changed the dress code to include jeans. Until then we had to wear dresses, skirts, or pants. Jeans were a really big deal and I asked my mom for a pair. Money wasn't growing on trees for us, in fact, my mom was working two jobs just to keep us in Christian school. So I was allowed one pair of jeans.

I wore these jeans every chance I got...in fact I would wear them several days a week - even days in a row. We were standing outside of our classroom at our lockers when I heard Adam's voice as clear as a bell saying, "Aren't those the same jeans you have been wearing every day this week?" It seemed as though every sound but his voice faded away into some sort of sound vacuum. All eyes were on me (not sure if this is true, but it sure felt like it). I just wanted to melt into the floor. It is all a blur of what happened next; but I use this illustration to help me remember how powerful words are and how silly it is to put stock into what others think of me.

Words are a powerful tool. One that can be used as a gift, as a bulldozer, or even a salve. I pray that I will remember to use my words in such a way that will make others comfortable around me to be totally and completely who they are. That they will not worry about me forming opinions but only the opinion of the One who really matters.

Two Words

2009-09-16T15:31:00.004-04:00

I have been confronted with some things in the last few days that I wasn't ready for. Or, was I? You probably know by now that our second daughter is different. She will be one year old next week and is functioning somewhere around the four month level. She is as sweet as can be and is the sunshine of my life! If you have seen her smile, you know that she is happy and well loved.

I was talking with a lady yesterday about Rebekah and she said to me: "As one mother of a special needs child to another mother of a special needs child...". Did she say SPECIAL NEEDS? I almost didn't hear what she said after that. We were discussing some options that we have and will have to chose between in the near future for Rebekah and in all of this I am being stretched.

I have known for months in my heart and in my mind that Rebekah is a "special needs" child. No one says it out loud though. Everyone (including the "professionals")says: developmentally behind, a little slow, still getting there - and so on. It is true that the neurologist has not been able to give us any kind of insight as to how Rebekah will be in a month, year, or ten years. She may completely catch up with other kids by the time she heads to kindergarten, or she may end up living with Chris and me for the rest of her life. No one knows (well, no one here on earth).

I was talking with my mom later about my conversation with this other mother and I told her that it was such a relief to have someone finally say it out loud that Rebekah is, and does have, special needs. This does not confine me, does not depress me, does not limit me in any way. In fact, I see it quite the opposite way. This empowers me to educate myself, to work harder at providing services she needs, to open my eyes to others around me who need someone to come along side of them. Before...I felt as though I had been sitting here waiting for her to "catch up".

I have said that this journey is a lot like walking in the complete darkness. Someone has warned me that there is a very sharp cliff out there that could lead to our doom. They did, however, forget to tell me if the cliff is two feet in front of me, three miles in front of me, or maybe even behind me. I must inch along in the dark hoping that I am doing the right things for myself and my family. Crying out to the Lord to lead me and show me the right path. Praying for others to come along side of me and light the path.

I am definitely changed by those two words I heard yesterday. But for the better. I feel stronger, fuller, and more determined.

Thank you ~from one mom of a special needs child to another mom of a special needs child!

Burning Bushes

2009-09-15T10:15:00.003-04:00

So yesterday started out like any other. I had gotten up and showered before taking Kayla to preschool. I headed back home to get ready for Rebekah's physical therapy session and six month review from Babies Can't Wait.

I discovered that Rebekah loves music, so I try to keep it playing in the car. I chose to listen to Andy Gullahorn. He's definitely a favorite of mine, but I don't listen to him very often. He is a very "real" musician...writing his own stuff and has a folk style of relaying his music. I have heard the songs on his album over and over, but really listened to one this morning.

He asks if we are looking to heaven for a miracle while all along we are walking through a garden full of 1,000 burning bushes. It struck me once again that there are miracles all around me happening every day in my life, in my family, and in the lives of everyone that I encounter. And yet, I rarely slow down from my rush-around-to-the-next-thing life.

I usually pride myself in a clean, well-kept home, happy children, and a short to-do list. I am now determined to get my head down out of the sky and focus on these burning bushes all around me. My life's direction has been changed several times and each time it feels a little like stretching. Thank you Lord for this growth time and stretching me to be more in the image of your Son.

Where have you been stretched today? Do you desire stretching in your life?

Let each esteem others better than themselves

2009-09-12T15:34:00.002-04:00

This weekend was the Arts and Crafts show at Paulding Meadows. We planned to meet our friend there and as I was getting ready I realized that Kayla was going to want to buy something. I pulled her piggy bank off our dresser and emptied out $10 in quarters. I had her get a purse to put it in and she beamed a "Good Idea!" at me. She said "I can give this money to the people at Paulding Meadows." I asked her what she was going to give it to the people there for. "Just for being there for me", she said. So I asked her what she might get with her money. "I am going to get a sparkly pony for Mrs. Kelly, and a sparkly car for Papa George and Papa Tony."

This sweet girl gave no thought to herself. She was set to buy something for someone else. What a lesson I learned this morning! Thank you Kayla

My baby snores...

2009-09-11T16:06:00.003-04:00

Just not at the right times!

Somehow I trained my first daughter to sleep fast and hard in her bed. Rarely did we have to run upstairs to help her find the pacifier. Rebekah, on the other hand, is a whole different story. She has an alarm clock set to 3:00am. (Hence the name of this blog.) Just about every night I get to go upstairs to her room and be greeted with a grin from ear to ear. I try not to make eye contact because that is what all the "experienced" moms have told me to do. But inevitably one of three things happens:

1) Rebekah ends up falling back to sleep after I rock her in the rocking chair for a while (half the time I fall asleep there too).

2) Rebekah decides she is up for a while and for the next two hours we get to watch re-runs and info-mercials. You don't know how many times I have thought about sneaking into my bedroom to get my credit card from my purse! She will then fall asleep just in time for everyone to be getting up and ready to take big sister to school!

3) Rebekah gets to spend the rest of the night with us in our bed. Now this is an amazing thing. I vowed when I had my first baby that I would NEVER have a child sleep with us in our bed. I am a little freaked out by co-sleeping and am also a little over protective of my children. Kayla had no issues with this, so everything was fine with my proclamation. However, desperate times call for desperate measures! Rebekah will go back to sleep if I bring her to bed with me. I don't know if it is the 400 count Egyptian cotton that she likes or if it is the smell of Mama and Daddy or if it is the warmth of our bed. I do know that she will sleep and sleep hard for a good 4-5 hours in our bed.

So while I am getting the coffee going every morning I hear my sweet little baby girl snoring in MY bed!

Impigimps and Skubettios

2009-09-11T07:35:00.000-04:00

There are so many things that happen in my life that I should be writing down! Everyone says "Write that down or you will forget it!" So, maybe with the start of this blog I will not forget Kayla walking around with her first recorder blowing it loudly and singing "I love my new Impigimp!"

Now off to fix her a can of skubettios. =)