For those following our family's story solely by this blog, I'm sure you thought I had fallen off the earth.  I haven't felt mentally up to writing for a while.  I was beginning to slowly hit my stride this past week when we were hit yet again with another curve ball.

Back in 1983, while we were living in the Houston area, Hurricane Alicia made landfall.  We lived in the NW portion of Harris County so the storm surge was a non-issue for us.  The winds were another story, especially since we lived in a subdivision filled with very tall pine trees.  Thankfully we didn’t have any damage done to the house by falling tree limbs.  The storm itself was a little scary, but it was what happened afterwards that made it miserable.  As expected, our power went out and did not get restored until after 3 days.  The first day wasn’t too bad since there was still significant cloud coverage and the air was rain-cooled.  The second day started getting a little bit warmer and the house began to heat up as well.  Then came the third day when the sun appeared in full force, the humidity was so thick you could cut it with a knife and the inside of the house was unbearable.  Just about everyone on our block was out doing clean-up work because it was simply too hot to stay indoors.  New Orleans experienced the ultimate nightmare aftermath after weathering Katrina’s winds only to become flooded the next day after the levees collapsed.

That’s the thing about storms, the actual storm itself may not be as hard as enduring the circumstances afterwards.  That’s a very good description of what the month of August was like for our family.  You could see the storm coming in and knew it was time to batten down the hatches, so to speak.  We were preparing ourselves to say goodbye to Faith and bracing ourselves for her last breath.  For reasons known only to the Lord, we never experienced this scenario. 

I know people keep saying how strong I am but quite frankly it was more shell shocked numbness than strength.  I tried to suppress it for a long time, but I admit I was pretty upset with the Lord.  Even now, I’m still in a wrestling match with the Lord, asking him why we weren’t allowed to say hello to our daughter.  I read a story about a couple in the Dallas area that had a very similar experience with their son, who had Trisomy 13, except that they were able to bring their son home and he lived for 5 days.  I was so jealous and angry, not understanding why they got to bring their son home while we walked out of the hospital empty handed.  Then I read that this was their first child and at that I felt utterly ashamed of myself.  How could I be jealous of them when they didn’t have any other children?  We had two beautiful children waiting for us at home and had experienced the joy of welcoming them into the world.  At the end of the story, it was revealed that this couple is expecting a girl in January and that all tests have come back normal.  I found myself asking for the Lord’s forgiveness over my selfishness and giving Him praise for blessing this couple who had endured so much heartache with their first born.

Of course what seemed to add insult to injury was my subsequent admittance into the hospital for blood clots in my lungs.  The pain was like nothing I had experienced before, and that should have been a huge clue to get my rear end into a doctor’s office.  When the doctor at the clinic said it was either pneumonia (I was in so much pain that I didn’t even notice I had a fever of 101) or blood clots in my lungs, Bill and I just looked at each other.  He told us that we needed to go to an ER for further evaluation.  I asked him how soon we needed to go and he said I had enough time to go get my toothbrush.  Here I was, already mentally and emotionally drained and experiencing unbearable pain, now I had to go back into a hospital.  I was scared and so many thoughts were running through my head.  I begged God not to bring me home yet.  I know as a believer we are supposed to be heaven-bound minded, but I am not ready yet.  I want to grow old with Bill, my lover and best friend, watch Hope and Nate grow up and to be able to be their teacher and share their delight in learning new things.  I want to be around my extended family and to be able to minister to others who are hurting and in need.  I know that as mothers, we do have the tendency of being more mindful of taking care of others and neglecting our own needs.  I have been guilty in recent years of not taking care of myself and if anything, this experience has reminded me that it is in my family’s best interest that I do need to be mindful of my health.

That week was probably the longest week of my life.  The days seemed to drag on and on and with each day, my sleep continued to be spotty.  At one point I was so depressed when the kids were brought to the room and Nate didn’t want to come over to me.  It was like I was losing him too, that he didn’t know who I was.  I’m so thankful that Bill, my hero, held me in his arms and reminded that this was only temporary and that this would not be forever, that I was still Nate and Hope’s Mom and nothing would change that.  When you’re stuck in a hospital room and your discharge date keeps getting pushed further out, you begin to wonder if there is an end in sight and can lose perspective.

Last Thursday was the 4 week mark of Faith’s birth and I found myself finally allowing myself to miss her.  There were days last week when I would look at the mantel and see the bear with her dress on and the box urn next to it and have such an empty feeling.  I know that every family picture taken from now on will be missing our Faith.  I found myself imagining what she would look like by now.  The ultrasound pictures showed her facial features favored Nate’s and at her birth saw she had a full head of black curly hair.  Knowing that this little girl with the black curly hair would never be in the picture is devastating.  Someone told me it will be like a wound that will heal for a while only to ooze again when it is least expected.  They were so right because there have been days when I’m doing ok and actually can get through the day without crying, but others it’s all I can do just to get through the hour.  My slow physical healing isn’t helping matters either, where I feel like it is two steps forward, one step back.  It’s hard enough recovering from a c-section, but trying to recover from a 7 day hospital stay on top of that is making it slow going.  For the first time in a month I drove myself last Friday for a short one stop errand and it was exhausting. The next day I did a couple of errands and it was exhausting also.  I’ve been off the pains medication since this past Monday and while my mind is now out of the drug cloud, my body isn’t thrilled to be experiencing the pain and discomfort.

We are all looking forward to our trip to the beach, but Hope is probably the most excited.  All she’s been talking about is going to the beach house and getting seashells and building sand castles.  I ordered a little booklet about seashells with each page describing a different kind of seashell with a picture sticker for each one.  I laminated them so that we can take them to the beach with us and not worry about getting the pages wet.  I’m also hoping that we aren’t visited by a tropical storm or hurricane.  We deserve a break to have a nice calm and enjoyable trip. J

At long last, I feel ready to share about the events of August 6.  I know I would have done this sooner, but my 7 day detour in the hospital for blood clots caused delays in more ways than one.  When you are concerned about whether or not you’re going to live, all other issues take a backseat.

The morning of Faith’s birthday started very early for us.  We had to get up at 430am to be at the hospital by 530am.  We are not early birds, so this was quite brutal for us.  Our bags were already packed and just needed to get dressed, pack up the computer and load up the truck.  Unlike the mornings of Hope and Nate’s birth, we were understandably subdued.  In some ways, I dreaded what would come that morning, but knew that no matter the outcome, the Lord would sustain us.  I could see flashes of lightning off to the north as we were getting ready and saw that there was a line of storms heading our way.  I remember hoping that the hospital had a backup generator, in case the power went off during the delivery.

We buckled ourselves in and opened the garage door and drove out.  We normally back into the garage so that when we leave we just drive on forward.  As we pulled out that morning, I saw the most awesome sight.  It was almost a full moon surrounded by several small clouds.  The moon reflection was so bright that the clouds looked black in the center and white on the edges.  It was such a beautiful sight and I found myself staring at it as we drove out of the subdivision.  On our drive into town, there were flashes of lightning all around us.  We could see it to the west far off into the distance, to the south and east of us as well as from the north.  Lightning and rain seemed to surround us on all sides, except where we were.  I remember feeling very calm, a strange calm, as I looked at the beautiful moon and surrounding clouds.  For the first time in days, I finally felt the Lord’s presence with us.  I’m sure that He created that scene to remind me that not only is He the creator of all things, He is also in control of all events, and that everything happens according to His plan and schedule.  I know without this reminder I would have crumbled under the weight of despair during the events in the coming hours.

We arrived at the hospital and after signing a couple of forms were taken to the prep/monitoring room.  I prayed one last time that there wouldn’t be an issue with my IV.  When the nurse came in, I asked her if the phrase “valvy veins” meant anything to her.  She said absolutely and while taking a look at my left hand agreed that they were and said she wouldn’t try the IV in my left hand.  The worst part of the IV insertion was the local anesthetic given beforehand, but after that it was a perfect insertion the first time.  This was such an answer to prayer since prior attempts before Hope and Nate’s deliveries involved 4 painful attempts at insertion.

Next Jason arrived, our friend who agreed to be there to take pictures of our time with Faith.  We told him that after much discussion and prayer that when Faith left us, that there would be no more pictures.  It just didn’t seem right to have a picture of a dead baby.  Then Kevin our young adult pastor arrived a few minutes later and we were all talking about the storm and how we hoped that the hospital had a backup generator.  Then Dr. E came in, my OB/GYN and said she wanted to do a quick ultrasound to see where Faith’s head was to determine how they were going to do the incision internally.  So Jason and Kevin left and the portable machine was brought into the room.  Within a few seconds, it was painfully clear that we were too late because there was no heartbeat.  I didn’t react how I thought I would and can only attribute it to the Lord’s covering me with His merciful grace.  I thought if this were to happen that I would break down uncontrollably, but I didn’t.  I could tell my Dr was disappointed for me and said she was so sorry.  I know this turn of events made it hard for her to focus on her job, knowing this delivery wouldn’t have a noisy ending, but utter silence.  After she left, Kevin and Jason returned to the room and we told them the news.  It was only a few more minutes left until time to go into the OR and so we asked them to watch for Bill’s Mom and Sister who were coming up to the hospital with Hope and Nate in the waiting area.  As they left my Mom popped in the room to see me before the delivery.  For the first time I had to say that she, Faith, was gone.  It was the hardest thing for me to say.  Mom told me through tears in her eyes that on her way to the hospital she saw the most beautiful rainbow in the sky.  God was taking Faith home and that was His sign to remind us of His promises, that we would see her again and that this wasn’t goodbye forever.

The walk to the delivery room seemed to take forever and in my usual attempt to try to ease the tension of a very difficult situation, I was cracking my usual jokes.  Dr. B my anesthesiologist and I were talking about the different methods that were used in the past, specifically those that are mentioned in several different M*A*S*H episodes.  Later on after Faith had been delivered and Dr. E was making preparations to close me up I thought I was hearing a suction device.  I asked if she hadn’t closed me up yet if she could liposuction some of my excess fat while she was down there.  Unfortunately she had already closed me up.  Dr. M, the pediatrician came over and told me that Faith was 2 lbs and 11 oz and 15 in long.  I’m sure that Faith probably had passed on before that morning, because the prior Friday she was 3 lbs.  The Dr and the nurse made footprints and handprints on their keepsake birth certificate that they give.  I’m not sure if they were the ones that saved some of Faith’s hair also or if it was my family that did it later.  After being wrapped up in several blankets, Faith was brought over to us and Daddy held her as they got ready to take me to my room.  It was a full house in there, with my Mom, Bill’s Mom and Sister, Hope, Nate, Jason and Kevin. 

Once I was settled in and the nurses had left, Kevin began the dedication ceremony, though for me it seemed so pointless. This was not how I envisioned this morning to be.  It was supposed to be filled with us holding our living breathing daughter.  She was to hold our fingers in her tiny hands and feel her warm soft delicate skin.  We were supposed to show Hope her baby sister and even let her hold her for a minute.  We were supposed to have a family picture with all of our children. We wanted to put her dress on and hold her and talk to her, maybe even try to feed her. Why, why did He have to take her so soon?

After Kevin finished and before he left, I started feeling nauseated and began throwing up again.  I can barely remember everyone in the room yet I could see the pity in their faces for me.  Here I was throwing up and trying to deal with the enormous loss of that morning and there was nothing anyone could do for me.  Next, there was a flurry of activity making the hand and foot impressions.  I remember comments about the black ink still on her hands and feet and that there was a little black ink in the impressions.  I could tell something was off because I never could see Faith out of her blankets.  When everything had been done, one of the nurses came in and said that they could place Faith in cold storage if we weren’t ready to say good bye to her yet.  It never entered my mind that such a thing would be needed in a birthing center.  We agreed for her to be put in there and that we weren’t ready for the funeral home to come and get her.  Everyone began to leave and my Mom told me before leaving that I shouldn’t unwrap Faith’s blankets.  She didn’t say why but I could tell it was her mother’s instinct to protect her “baby” from something she knew I wouldn’t be able to handle.  She did say it was almost more than she could handle.  I think that I’m the only one of those present in the room that still doesn’t know what was so physically wrong with Faith.  Maybe I’ll be able to ask Bill someday soon.

The rest of the day is just a blur and the only thing I do remember is Jason coming back to bring Bill dinner.  I know that if it weren’t for all the pain meds, I wouldn’t have been able to sleep that night.  I know in my mind I began to understand why the Lord took Faith home early, that perhaps it would have been too much for us to see her struggling and in pain while taking her last breath.  It still didn’t make it easier to accept.  The last thing I remembered before drifting off to sleep that night was asking God, “Why, why, why…..”, a question that probably won’t be answered until I’m in His presence with Faith by my side.

I'm working on writing about Faith's birthday and the events of that day.  My weeklong stay in the hospital took it's toll on me and I'm still fatigued and emotionally drained.  So for now, I thought I would post a letter I wrote to Faith.  This was read at the memorial service for Faith last Saturday, August, 22. 

"I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; yes, wait for the Lord."

Psalm 27:13-14

To our sweet and precious Faith,

We know the Lord had already ordained the events leading up to your birthday, Faith.  We knew there was a chance of you being taken home before your birthday.  Yet we desired for so many things to take place on your birthday.

We hoped that we would be able to say “Hello” to you in person. 

We hoped to be able to see your eyes.

We hoped we would introduce you to your big sister and brother.

We hoped to be able to give you a bath and put on your birthday dress.

We hoped we would be able to sing a song to you.

For reasons known only to Him, The Lord chose to bring you home before we could do these things.  We don’t know why he took you home so soon and part of me feels angry that we were denied these desires.  These were simple things that we wanted.  It seems cruel to deny us these moments especially since we knew there were so many other things we would miss out on.

We would never see your first smile.

We would never see you crawl or walk for the first time.

We would never hear you say Mama or Dada.

We would never see you ride your first bike.

We would never see you lose your first tooth.

We would never hear you read your first book.

We would never see you dance, or play an instrument, or hit a baseball.

We would never see you get your driver’s license.

We would never see you graduate.

We would never see you get married.

We would never see your first child.

We knew that none of these things would be a reality for you.  Yet we know that even though we were denied those few simple things to experience with you, your time with us was not in vain.  I know that while you were in my womb, you did get to experience some things.

You could hear my voice when I gave praise to your Creator.

You could hear the laughter of your big sister and brother when they played.

You also received the many hugs that were given to me.

Your life story has touched many lives and will continue to minister to others.  We are able to endure the pain of your absence knowing that the Lord had a purpose for your life and that it was not in vain.  I know that now you are safe in the Father’s arms.   You are no longer in pain and your body is now without defect.  You were greeted by so many of our family members that have gone to heaven before you.  You are seeing and hearing the angels and all who dwell there sing,

“Holy, Holy, Holy is the Lord God Almighty; who was, and is, and is to come!”

We love you and miss you precious Faith and look forward to the day when we are all united in His presence for eternity.

Love, Mommy, Daddy, Hope and Nate   

This is going to be another short one.  The wifi here is spotty at best and I needed to get these prayer requests out asap.

First, I can't explain it all, but in order for me to be discharged, my INR level needs to be a 2.0 or greater.  As of this morning it was 1.38.  Please pray that my levels will continue to go up and that I will be discharged on Thursday or no later than Friday.

Second, I need prayer in the spiritual battle I'm dealing with.   Yesterday was such a difficult day and to say I was depressed would be an understatement.  We're so weary from the various assaults from different fronts.  Plus the sleep interruptions are leaving me physically drained.  Please pray for protection from the assaults of the enemy and that both of our minds will be protected from the doubts and worries the enemy tries to plant.

We appreciate everyone's prayers and notes of encouragement being sent.  They are helping us to keep pressing onward. 

NOTE: THIS WAS TYPED ON 08/14/09

I am typing this blog from a local hospital here in town.  I started feeling twinges in my left shoulder and around the left rib cage last Monday evening and attributed it to washing my hair in the kitchen and probably slept on my left side wrong to make matters worse.  By Tuesday, the pain was significantly sharper, acute and debilitating.  I have a pretty high threshold when it comes to pain tolerance, but this was worse than anything I have ever experienced.  What made matters worse was that I was only getting about 4-5 hours sleep total and not all at once.  Thursday, yesterday, I called Dr. E and told her the symptoms and she suggested taking a muscle relaxer for about 24 hours and alternate hot/cold packs.  I woke up this morning and it was not any better.  So Bill and I went to an urgent care clinic that had x-ray equipment and took some pictures of my left shoulder and ribcage area.  The possibilities were not good.  I had either pneumonia or blood clots in my lungs.  Yes, blood clots.  I’ll be honest, that made me scared.  We were instructed to go to a hospital ER and that I would most likely be admitted. 

The drive home was extremely quiet.  We went ahead and packed for a couple of days for me; not sure why we didn’t pack for Bill either, but I guess we were still processing the possible causes of this pain and weren’t thinking straight.  Once we were in the ER they did more blood draws and ordered a CAT scan.  The results, blood clots in my left lung.  So I was admitted and they did an ultrasound on my legs to see if they were the location where the clots originated.  But the best part was that as soon as they had me in the ER exam room, they immediately gave me pain relief medicines and muscle relaxers.  It was amazing how quickly it worked and hadn’t felt that good in days. 

Needless to say the Memorial service we had planned for Faith on August 15, 2009 was postponed.  Most likely it will be next Saturday, August 22, 2009.  This will depend on when they discharge me.

This new turn of events almost makes you want to laugh or cry.  Yesterday when I was in such pain that it brought me to tears I looked up and asked God, “Haven’t I suffered enough?  Hasn’t Bill suffered enough?  Why are you allowing this to happen?”  Someday we may find out, whether on this side or the other side of heaven. 

Please pray for total healing for me, strength for Bill as he has felt so helpless watching me be in such agony and there wasn’t a thing he could do, and for Peggy, Bill’s Mom as she is watching Hope and Nate at the house.  We also need prayer for helpers to help with Hope and Nate in the next couple of weeks.

We appreciate your continued prayers and lifting us up to the Father’s throne.

May we continue to Fix Our Eyes On Our Comfort, Shelter and Healer.

I don't like sounding like a whiner, but I could really use your prayers. Since Monday evening, I've had horribly acute and stabbing pains in my left shoulder and on the left side around the rib cage and left center area of my back. It feels like something is severely pinched and I've had on and off spasms. There are times when it really starts to hurt, I find myself breathing harder, only to make matters worse in a vicious cycle. I don't know exactly what's causing it, but called my Dr. and she said for the next 24 hours, take some of the muscle relaxers I had left over from when I pulled my back in January, and to put ice on the areas. If it doesn't improve by tomorrow, she suggested going to an urgent care place that has an x-ray machine to take some pictures. The pain is so bad that it's now affecting my sleep; last night I would sleep for about 2-3 hrs then be up for 1-2 hrs trying to get relaxed enough to go back to sleep. Even getting up to go to the bathroom is a nightmare.

I confess that I'm very discouraged. The area where my incision doesn't bother me at all and I should be getting up and moving around, but when doing so literally brings me to tears, I just don't want to get up. I've never experienced anything like this and have asked God, "Haven't I suffered enough?"

The memorial service is this Saturday and the way things are going, I may have to be really doped up to be able to move around. So please pray for merciful and miraculous healing.

I still plan on writing about the events of August 6, but it may be a few more days until I can do it.

I asked Bill a couple of weeks ago if he would be interested in writing an entry from a Dad's perspective, so today's entry is from Bill, Daddy to Hope, Nate and Faith.

For those of you who have been following our blog for some time, we have kept everyone up to date on the condition of our unborn daughter, Faith Kathryn, who was diagnosed with Trisomy 18 back in April.  The following is an account of the journey that we have traveled that I would like to share with you from a father's perspective.

As a father, I have obviously never felt the physical pains of giving birth to a child, but I have experienced the joy along with Cheryl of being able to hold a new life created by God in my arms.  I shared the same anxiety when we were expecting Hope, our first child, since neither of us had a clue about raising children.  Only one of us had any sort of babysitting experience in the past, and that person was not me. J  So, when Hope was born, we learned by trial and error, mostly error, but we persevered and have been learning as much about parenthood as Hope has about life itself.  Then, when we learned that we were expecting Nate, the emotions admittedly at first were not thoughts of thankfulness.  Hope had been such a challenge the first few years that we really didn't think we could handle another child.  But God saw differently; He saw that we not only had the ability to raise another child, but that we would do so with gladness.  We could not imagine our lives without Nate now.

When we found out this past December that we were expecting again, we were happy that God had chosen us to bring another precious life into the world.  However, unlike with Hope and Nate, I never felt the strong sense to share this news with those close to us.  I could not put my finger on it at the time, and even now, I still am not totally sure of the reasons for my hesitation, but looking back, perhaps He was preparing my heart for the bombshell that would be dropped on us a couple of months later.

During the first ultrasound at the end of March, we went in with the simple expectations of learning whether we were having a boy or a girl.  The ultrasound revealed that the baby was a girl, but we were noticing that the ultrasound technician was spending an unusually lengthy time examining the baby's heart.  When Dr. Mirabile came in to do his examination, he informed us that our daughter had a heart defect.  He mentioned several possible causes for the condition, and also told us that the heart defect may be an indicator of a much more serious problem than just a heart issue.  We were obviously startled by the news, and over the next three weeks we prayed that God would bring a miraculous healing for the heart, and that when we went in for the next ultrasound, that things would be OK.

The next ultrasound was performed three weeks later, at which time Dr. Mirabile explained the potential causes for the heart issue.  In order for us to know for sure whether we were simply dealing with a medically fragile baby or if the baby had serious genetic defects, we elected to have an amniocentesis performed.  Two days later, we received a phone call from the doctor's office that dealt us a devastating blow – Faith had tested positive for Trisomy 18, also known as Edwards Syndrome.  At this particular point, both of us just broke down and wept because we knew that Trisomy 18 was a fatal condition, meaning that we would not get the opportunity to do any of  the tasks that many of us take for granted when raising a baby – changing her diaper, giving her a bath, watching her learn to crawl, watching her take her first steps, listening to her cry when she was hungry, getting up in the middle of the night to feed her, having he r picture taken, and so on.  All of the plans that we had for her had just been blown out of the water.

As a father, I could not begin to comprehend the depth of sorrow that Cheryl felt when she knew that the baby she was carrying and growing inside of her would not have a chance at a normal life.  However, I can say that hearing this news was to me the equivalent of getting kicked in the stomach.  For days, I was just numb and didn't really care much about anything.  I found myself withdrawing from my own family and burying myself in my work, because I knew that was something that I could somewhat control.  I didn't feel like spending time with my kids, and times I spent with Cheryl were often times without words being spoken.  I was becoming emotionally isolated, and often found myself questioning God as to why He allowed this to happen to our family.  I didn't turn my back on God, but I did find myself losing interest in praying and reading His word.  Many times going to church was simply going through the motions for me.  I felt completely disconnected from the Father.

Gradually, as the days and weeks passed, and I came to acceptance of what was going to happen to Faith, I began to remember God's promises that He does not put on us any more than we can bear, and that He works all things to bring glory to Himself.  Obviously, I knew He could heal Faith miraculously if He chose to, but as time passed, I began to realize that He was going to be glorified in a different way.  I didn't know how, and to some degree I still don't know, but I decided at that point to trust Him with this trial and prayed that He would be glorified through us and the manner in which we dealt with it.

With each ultrasound appointment, we noted no real change in Faith's overall condition, except that she just wasn't growing at the rate of a healthy baby.  We had been told that even though her condition was still unchanged, we would probably still be able to have a little time with her here on Earth.  The window kept decreasing with each successive ultrasound appointment, but we still held onto the hope that Faith would be born alive and that we would be able to hold her in our arms and share in her brief life.

At the last ultrasound appointment on Friday, July 31, Dr. Mirabile delivered news that we weren’t prepared for.  We were told that due to new complications that were detected in the ultrasound, there was a strong chance that Faith would be stillborn if we stayed with the original delivery date of August 14.  Thus, with much prayer and consultation, we made the decision to move up the delivery date to August 6 to hopefully improve the chances of Faith being born alive and us being able to have some time with her before she passed on. 

At some point between July 31 and the morning of August 6, Faith Kathryn went home to be with Jesus.  During the preparation for the C-section, Cheryl’s OB-GYN performed a final ultrasound to determine Faith’s position, and it was during that final ultrasound that we were told that a heartbeat could not be detected, and that it was almost certain that Faith had already passed away.  While we did not get the chance to share in her life here on Earth, we know that she is no longer suffering and is free from all sickness and pain, and that she is whole and complete.  I can almost picture her dancing with the angels in heaven even now.  In some respects, I am a little envious that she is already getting to meet all of the saints that have gone on before, as well as our family's ancestors, even though I would have longed for some time with her here.  However, I believe that God showed us His mercy by taking her home before the delivery so that we would not have to deal with the pain of watching her draw her final breath.

We take comfort in knowing that because of the promise of our Lord and Savior Jesus Christ and what He did for us on Calvary, we will see Faith again someday and we will be able to spend all eternity with her.  As the chorus in the old hymn “Everlasting Arms” says:

“Leaning, leaning, safe and secure from all alarms, leaning, leaning, leaning on the everlasting arms.”

For those out there who don’t know the Lord, I am sure many of them are thinking, “Why did they go through all of this just to wind up losing the baby in the end?  Why didn’t they just terminate the pregnancy?”  Plain and simple, we know that God is the author and creator of life, and it is His decision as to when a life begins and ends, not ours.  We believe that we have brought honor to God by carrying Faith to term, and we have no regrets with our decision.  Even though God did not intend for her to remain here with us, she has touched the lives of many that we know of and likely countless more lives that we do not know of and will probably never know of this side of heaven.

Romans 8:28 states, “And we know that in all things God works together for the good of those who love Him, who have been called according to His purpose.”  So, whether you face good times or bad, remember that He is doing a good work in you and will carry it to completion until the day of Christ Jesus.

God is good, all the time!

Welcome to the new normal.  A friend of mine said that would be my life afterwards.  Before I had 2 children with one on the way; now I have 3 children, two with me and one with Jesus.  It felt strange Bill and I leaving the hospital empty handed.  I didn’t know how I would handle that part, but with Bill by my side, I felt the Lord carrying me out in His loving arms.  There was sadness to be sure, but more melancholy than despair.  Just as we were about to walk out the door, there was another family getting ready to leave.  I could see the nursery nurse and knew there was a baby.  Bill saw it too and he asked if I wanted to wait until they left.  I decided to wait in the lobby while Bill, my hero, took the rest of our things to the truck.  I’m sure it was hard for him to see it too, but he helped spare me of the painful reminder that it was just us leaving.

It does feel so good to be home again and in my own bed.  I will say though that the hospital I was at is so different from your standard hospitals and the staff is second to none.  They took such good care of me and believe it or not, generally let me sleep most of the night.  I was touched that the hospital put a pink butterfly magnet with a pink ribbon on my exterior door frame.  This communicated to the entire staff from the Drs on rotation to housekeeping that there was a birth but the baby didn’t make it.

I will be posting another entry in the next day or two.  There is so much I want to share about that Thursday morning.  The prayers of all the saints that morning were answered.  With Bill on one side, I felt His strong presence on the other for the first time in days.  He knew the events to come and was there as our Comfort and Shelter.

This will be Faith’s Birthday.  We have the c-section delivery scheduled for 730am this Thursday, August 6, 2009.  Most of the pieces have fallen into place and so as I had hoped so, the decision was made for us.  I can sense Faith moving around less with each passing day and so we opted to have an earlier delivery date to be able to spend time with Faith, even if it’s just for a few minutes or a couple of hours.

Please pray that all who will be involved on this day, family, friends and the medical personnel will be protected from illness and injury. We also ask for prayer that Bill and I would be able to keep our eyes on Our Comforter and Our Shelter and not slip under the raging current beneath us.

I see Bill and I holding hands and standing in a room. 

There are no windows, no light and no sound.

We have no point of reference in which way to go.

I know in my "mind" that the Lord is there and His presence isn't based on a feeling.

But my "heart" does not feel His presence.

We had a powerful time of prayer when our church family prayed for us yesterday after the invitation.  It was one of the few times I've allowed myself to really feel the reality of what's to happen.  I couldn't really sing any of the songs and the message was on Jesus resurrecting Lazarus.  Not exactly what I wanted to hear, but probably needed to hear. 

We are still trying to decide on an early delivery v. schedule delivery and still we have no peace about either answer.  We are getting some pieces put together and gathering information today and tomorrow and hopefully will know by Wednesday, if not sooner.  I admit that in some ways I wish for circumstances to make the answer for me.  We'll see.

I was reading a CaringBridge page for Chris Klicka, Senior Counsel and Director of State and International Relations for the legal advocacy group, Home School Legal Defense Association. He is a longtime advocate of the right to home school and has helped many families when those rights were threatened.  He and his wife Tracy have 7 children who they have homeschooled and are active in service to others.

http://www.caringbridge.org/visit/chrisklicka

 I am writing about them because Chris has been battling MS for 15 years and is receiving Hyperbaric Oxygen treatment at a facility in North Carolina.  He has been there for about 15 days and was so discouraged by the insurmountable obstacles that lay in front of him that he was considering stopping and going home.  Tracy put out the call for specific prayers in these multiple areas and the Lord heard those prayers and was gracious to answer them all above and beyond their expectations.

Tracy started out the praise post with this scripture,

"I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; yes, wait for the Lord."

Psalm 27:13-14

Today we had the final ultrasound.  We were expecting a routine ultrasound to gather as many pictures and video of her as possible.  What transpired was something else.  I could tell in Dr. Mirable’s demeanor that something was different.  He wasn’t smiling or laughing as much and had a serious look about him.  I admit I barely understand exactly what he said, but the bottom line is that the flow of blood through her cord is no longer flowing normally.  She is also not moving around as much as she has during previous exams plus her weight now is only 3 lbs.  His conclusion is that these are indicators that Faith will not make it to the August 14 delivery date.  Our two options are to either deliver early if we still want a live birth or just wait for the scheduled date and let the outcome happen as it will, meaning most likely she will be born asleep.

We knew this was a real possibility.  The odds are that 90-95% of unborn babies with Trisomy 18 do not make it to the due date.  In many ways she has beaten the odds up till now, but this puts a kink into “our plans”.  I don’t know why this is happening.  Over the last few days I’ve asked myself how am I going to be able to hold our daughter while she is alive and breathing and then let her go when she passes.  Just thinking about it feels like my heart has been ripped out.  So after hearing the news from the Dr. I began to wonder if this was our merciful Lord’s way of sparing me that pain and anguish.  I just don’t know.  I know that He has had this entire situation in His hands and has orchestrated each event for a reason.  As the scripture says, I need to wait for Lord to speak to us, and take courage.

So we are asking for everyone to be in prayer for us this weekend as we make this unexpected and difficult decision on whether to deliver early or on August 14.  Please pray that we would have wisdom and above all, that the Lord would awash us in His Perfect Peace that only He can give whatever the decision may be.

I do have a praise for an answer to prayer.  We have been so blessed by so many people pitching in to help care for Hope and Nate and want to give praise to Him who provided for this need.  This was becoming a challenge as I have been unable to pick Nate up and care for him properly and Hope needed to not be cooped up in the house just because Mom can’t get out much.  This has relieved the huge load that was bearing down upon Bill as he was trying to do it all and I could tell the stress was taking a toll on him.  The words “Thank You” seem so inadequate.

Please continue to lift us up in prayer that we would continue to Fix Our Eyes on The Author of our Faith, and not be consumed by the sadness that is attempting to envelope us.

As you can imagine, any “school work” that I had planned on went out the door with the results of Hope’s evaluation.  It was very clear that any attempt to hammer on in the formal phonics and math instruction would be an exercise in futility.  So what now?

I knew that I wanted to still be engaged with her and stimulate her mind but was wondering what to do.  The solution was a slow revelation that just built upon itself over time until I was able to develop a clear plan.  As much as I fought this, I am about to become a unit study creator.  What is a unit study you may ask?

The Old Schoolhouse Magazine’s Tutoring Center page gives a general synopsis on how to begin homeschooling and has a column that describes the various philosophies, styles and methods.  Unit Studies are where,

“All or most core subjects are covered while studying any one topic or unit study, using a variety of resources and supplemental activities” 

TOS Magazine, Summer 2009

I have been collecting classical music CD’s over the last few months and I have been playing one composer’s works occasionally throughout the month.  One month the focus was on Bach, the next on Mozart, Vivaldi and so on.  We finally purchased a shelf sized CD player to go into the family room where we could listen to the music while we were eating.  One CD set I ordered recently had 60 top works of various composers, so when a song would come on, I would have to look at the CD case to see who’s work it was.  Unfortunately, Hope began having the same curiosity, and once when she picked up the case to “see”, she dropped it.  So with the help of Bill who dictated, I decided to type up the composer and the song title on spreadsheets, one sheet per disc.  Then we would just tell Hope what disc was in and she would pull out the appropriate list and then she started seeing the track number on the CD player and look at the listing on the spreadsheet.  At first I would have to tell her the name of the composer, but within no time, she was recognizing the composers, even Tchaikovsky.  It was so reassuring seeing how excited she was that she could recognize the names of the composers and that she was enjoying being engaged in learning.

We then began watching a few performances on YouTube of Bach, Tchaikovsky and Vivaldi’s works.  I wanted to be able to show to Hope how these instruments are being played, especially the strings.  There is one clip showing the “Miniature Overture” from Tchaikovsky’s Nutcracker Suite that is from a performance in Germany by Berliner Philharmoniker with Seiji Ozawa, conductor.  Hope has begun to imitate the conductor’s movements when she hears this song.  We joke that she has been exhibiting “management potential” in her bossy behavior lately so I guess that would be an asset when needing to wrangle a very diverse and temperamental group of artists.  J

A while back, I had purchased several “educational” placemats and have rotated them out over time.  One has watercolor pictures of music instruments with their names and grouped by type, Brass, Woodwinds, Percussion and Strings.  There is also some basic music theory information on the border, such as full note, half note, quarter note; the treble and bass clefs, sharp and flat symbols; a keyboard along the bottom border with the key names written on them and the corresponding place on the staffs.  When we are listening to a piece and a specific single instrument is playing, I will point out the instrument and have her listen to the sound.  Yesterday while at a friend’s house, a Curious George video was being played and the storyline revolved around an orchestra.  Hope was recognizing the instruments by sound and even picked up on the bassoon.  I was shocked.  The cartoon rendition was anything but faithful to its true form, but when the instrument was being played, that’s when she called it. 

One of my goals with her in doing this exercise was to help her to focus on one thing and to not only be able to listen to it but be able to retrieve it later from her memory.  One of the main issues with someone who has auditory processing skills is that the information usually goes in but the information is difficult to find later, like filling a file in the wrong filing drawer and not being able to find it later.

In addition to this I have been reading a really great book Zin! Zin! Zin! A Violin!  Each page introduces a new instrument and builds up to ten instruments.  The concepts of the titles of the groups are also introduced. The first is solo, then duo, trio, quartet, quintet, sextet, septet, octet, nonet then chamber group (10).

So after all of these events, I realized that I was slowly and unknowingly developing a unit study based on music.  I then decided I needed to just run with this and develop it further.  We have in our hallway that leads to the garage a lot of wall space.  Currently I have a couple of weather/seasonal related posters on one side and maps of the US and World on the opposite wall.  I decided to develop a time line chart under the maps, have Hope color pictures of the various composers we’ve been listening to and place them on the time line.  Then a friend on an online home school support group suggested I take a string of yarn and connect it from the picture to the country that composer was from.  Not only would she begin to be exposed to the concept of time and history but also location and geography.

So there you have it, she is increasing her vocabulary through reading, strengthening her math skills with counting and learning new words related to numbers, understanding the concept of grouping which is used extensively in scientific study and now will incorporate history and geography.  I’ve always thought that I wouldn’t be able to do this and focused mainly on purchasing curriculum that is ready to use with little prep work.  That may still be an option, but given that so many of them are heavy in phonics and math instruction, I will keep those options in the bullpen for now.

I resisted getting on Facebook until a series of events “lured” me to it, but now I see it as a blessing more than a time evaporator.  I have loved being able to reconnect with so many people, including some I went to High School with.  One feature that I’ve enjoyed is the ability to chat with others that are on Facebook since I’ve had to be at home more, and lately spending more time in bed with my feet propped up.  I don’t have the sense of isolation that I had when I was in bed for a month from morning sickness that lasted all day when I was pregnant with Nate.

One lady that I regularly chat with is a friend from Bill and I’s single days at Prestonwood Baptist, our church home when we lived in Dallas.  Her name is Lisa and she lives in Singapore, working as an Educational Consultant.  She recently returned from a trip to Thailand and needed to stay in a hostel because her apartment was being repainted.  With her permission, I’m going to share you a story that you just can’t believe it’s real, but it really did happen.  This is the stuff that scriptwriters dream of.

Lisa had made a trip to her apartment to retrieve a few items and this is what she told me,

                “I need someone to go and clean my apartment! Those workers are TRASHING IT!!! I know it is a cultural thing but it was frustrating to go in and find my drawers dumped out on the kitchen counters, no paint covers on my antiques, their paint can lids laying all over the place with no newspaper underneath, etc...

And the contractor was wearing my flip flops!!!!!

And said that he used my meah (poof) bath sponge!!!!!

They shower before going home!!!!”

I sat here with my jaw dropped and gasped and Bill came in the room wondering what was going on.  I just could not believe it.  Then after the shock wore off, I found myself laughing so hard I had tears coming out of our eyes and my cheeks were getting sore.  I know what I write about these past few months is hard to read for some.  That’s why I try to have some humor in my blogs because I know that in Proverbs it says a joyful heart is good medicine, but a broken spirit dries up the bones. 

I asked her then if I could share this story on my next blog entry not because I wanted people to get a laugh at her experience, but because of what she said afterwards that stuck with me and really can be applied to all our lives.     

            “My life is one big comedy show or cry-fest.  I have to make a choice almost minute by minute on which way I will respond as I give it back to Him”

Lisa had asked me what it was she had said, so I wrote the above back to her, word for word as she typed it.  “I said that?” she quipped.  I joked with her that she didn’t realize how profound she was being. J  I know the obvious application in my life is our situation with Faith, but could also apply with our daughter Hope.  There are so many days that I have to chose how I’m going to respond when she has those days where you are convinced she is just trying to be difficult on purpose.  I can chose to see only the problems that she has or I can chose to see her as the Lord sees her, His precious one-of-a-kind gem that He created and that He has a specific reason for her uniqueness. 

Even in our daily grind activities, such as doing the dishes and laundry, we can chose to look at them as onuses and drudgery, or we can look for the blessings they present.  When doing the dishes, we can be thankful that we have a kitchen that we can prepare meals in and have running water be able to clean those dishes and cabinets to put them up in.  When doing the laundry, we can be thankful that the Lord provides for our physical needs by clothing us and having the ability to care for those clothes.  I check every item for stains before putting them in the wash and look at the country where that shirt or pair of pants were made.  Most of these countries are closed or hostile to the Gospel and I’m reminded of the freedoms we have here in this country to worship freely and pray for our Brothers and Sisters in Christ who endure much hardship for His name.

So this conversation was more than just a comic relief balm for me, it reminded me to be vigilant in not letting my circumstances that surround me distract me from keeping my eyes on Jesus.  When Peter came out of the boat and walked on water, he was able to do so because his focus was solely on Christ.  The minute he took his eyes of Jesus, he began to sink.

Let us all keep our eyes on the Son this week.

Some very special ladies at my church home are having a fellowship party this Sunday (instead of a typical shower) and in lieu of gifts I have requested that donations be made to Gospel for Asia’s Medical Ministry.

http://www.gfa.org/medical

To learn more about this ministry, you can click on the View Photoshow.

To make a donation, you can call them and let them know you wish to make a donation in Faith Kathryn Tredway’s honor/memory.  They will give you further instructions.

http://www.gfa.org/contact

Bill and I have sponsored two native missionaries, one male and one female, for almost 2 years. We also sponsor a little girl in their Bridge of Hope centers where she not only learns about Jesus and His love for them, she is able to learn to read and write, something unheard of for Dalits (“Untouchables”), plus she also gets a good meal each school day and receives an annual medical checkup.   We were thrilled to hear they were starting this medical outreach out of the BofH centers and the local churches that have been planted by their native missionaries.  The debate on health care is on the national stage now and despite an imperfect system, we still have in this country the best medical care anywhere.  We tend to take that for granted until we read about the stories of the lives of those touched by this ministry.  So for those who have been walking along with us on this journey and want to do something tangible, this would be the way that would give us the most joy.  If you feel led to, you can send a donation in celebration of Faith Kathryn Tredway to this organization to be used for their Medical Ministry.

This morning I was heartbroken to read this story about a family in North Korea.  I am glad that a major news network reported on this heartbreaking situation.

http://www.foxnews.com/story/0,2933,534728,00.html

The North Korean prison camps are inhumane and to think that 3 generations of a family were thrown into one because of the actions of the Mom is unimaginable.  This unfortunately is the standard practice in North Korea.  Please pray for this family, especially the 3 children who will no doubt wonder if the God that their Mom loved so much, and was willing to die for, has forgotten them.  Reading about this situation made be thankful that though there are going to be tears of sadness and tears of anger in the coming weeks for us, I am so blessed to be in a free country where I can proclaim the name of Jesus without repercussions, that I am in a beautiful, safe and comfortable home with a loving husband that models what being a servant leader is all about, with two beautiful and healthy children in addition to the legions of family and friends who have stood by us.

This morning has not been easy.  Hope “allowed” me to sleep in and Bill had to come in at 1045am to wake me up.  I think I got almost 10 hours of sleep, which is a good thing, but sometimes makes me drag for a couple of hours before I really wake up.  But this morning was different.  As I was lying in bed looking at the clock it hit me that in 3 weeks, just 21 days, that would probably be the time that Faith will enter our world and would be separated from me, her life sustainer.  I did allow for some tears as Bill held me in his arms and I told him what was going through my mind.  He agreed that it seems to be sneaking up on us.  I received confirmation this morning that the outfit I bought for Faith has been shipped and should arrive next week.  I’m calling the pediatrician this afternoon to schedule the OB consultation where we will discuss the birth plan for Faith.  We’ve also been given a strong recommendation for a local funeral home to handle the cremation and possibly the memorial service. 

God can be so gracious at just the right time and in the most unexpected ways.  I have always felt blessed that though this is a very difficult time for us, at least He was so loving to give us two beautiful and precious gifts for us to care for, Hope and Nate.  This week His loving arms reached out to us through our children.

The other day Hope comes to Bill and I (Cheryl) complaining that her tooth hurt.  We asked her specifically where it hurt and she pointed to her bottom, center right tooth.  Mom does the test and guess what?  The tooth is loose, so she is on her way to losing her first tooth!!  Of course in some ways Dad and I are not looking forward to the day the tooth does come out because that means blood loss.  When she used to get nose bleeds, it was NOT a pretty picture.  I just hope that she will not react as badly as she did then.  We’ve told her that when she loses her tooth, Dad (Bill) will take her out for a special date to get frozen custard with rainbow sprinkles.  So we hope that will be a good distraction.  J

A couple of nights ago, our young adult pastor was over for dinner and to discuss Faith’s dedication service in the hospital room and the memorial afterwards.  I admit that talking about it was beginning to get to me when out of nowhere, right in front of us, Nate took his first steps!!  It was about 3-4 real steps and he just grinned the biggest grin while we were all clapping and praising him.

The Lord always knows when to give you what you need when you need it.  I asked him in the beginning to give me peace throughout the pregnancy so that Faith would not feel any stress while she is with us.  I know there will be more than enough time to mourn when she is safe in the Lord’s loving arms.  I am so thankful that my prayers and the faithful prayers of others were heard this week.

I want to start out by again thanking everyone for your prayers.  Today was actually a fairly decent day physically and even managed to make dinner, albeit a “dinner in a bag” type, but still dinner.  I actually find cooking very therapeutic and lately do a lot of it while sitting on a barstool next to the stove.  I noticed Hope decided to practice her “figure 8’s” on the glasstop stovetop with some type of food substance, so I had to clean the top before starting dinner.  As I was rinsing off the cleaner, I heard Jeremy Camp’s “No More Tears” and without warning felt transported to that moment when Bill and I must say goodbye to Faith and just about broke down.  Of course the practical side in me is saying, “Hey you can’t do this in the middle of cleaning now….”   While these thoughts are battling in my mind, the very next song was Matthew West’s “The Motions” which helps me get back on solid ground.  I know I’ve written about this before, but this is where I seemed to get sideswiped without warning the reminder of what is coming.  In the meantime I just can’t let myself become paralyzed with grief.  There will be a time to do so, just not now.

I am looking forward to a time of fellowship this weekend.  A shower/fellowship is being given for Faith and I and I have requested instead of gifts to me that the ladies at my church home would instead submit written prayers covering a list of areas before, during and after Faith’s birth.  One of my friends who is a scrapbooker has generously agreed to help assemble these prayers into a book for us to have as part of Faith’s keepsakes.  What I would like also from my wonderful friends who have been following my blog is to do the same thing, except send them to me by email.  When the time is then right, I will also assemble these prayers into a book to keep as a keepsake.  You can email them to me through the link to the right if you feel led to participate.  If you feel comfortable doing so, please include your name and where you live (you can just list your state), especially if I don’t know you personally.

Prayer Book Topics for Faith Kathryn

Before Faith’s Birth:

1.       Praying for peace as we come to terms with Faith’s condition.

2.       Help us be able to explain to Hope what is happening.

3.       We would have wisdom making the decisions surrounding Faith’s birth plan.

4.       Wisdom for decisions regarding her cremation and memorial service.

5.       There would be no complications that would require an earlier delivery date.

Day of Faith’s Birth:

1.       There would be no complications surrounding the insertion of the IV or epidural.

2.       The doctors and nurses would be able to focus on what needs to be done and not be overwhelmed with the situation and feel helpless to be able to do anything to save Faith.

3.       The delivery would be smooth and that the completion of the surgery would not be too painful.

4.       We would be able to keep Faith as comfortable as possible during her hours here with us.

5.       We would be able to have some family time with her and Hope and Nate.

6.       We would be able to have her dedication in the room and that it would be a time of celebration.

7.       We would have only the kind of peace the Lord provides when Faith takes her final breath and we must say goodbye to her.

When Faith is in Heaven:

1.       My recovery from the surgery would be without complications.

2.       We would be able to explain to Hope where Faith has gone.

3.       Her memorial service would be a time of celebration of where she is and not dwell that she is no longer with us.

4.       We as a family would be able to mourn and begin to heal.

May the Lord continue to be glorified in your lives this week!!

I am one of those who is very nauseated during my first trimester of pregnancy.  Some people refer to it as my “green” phase.   It’s bad enough to be drained of energy but to not be able to eat much just adds to the misery.  Then the second trimester rolls around and you find yourself not only eating twice what you would normally eat but having an excessive amounts of energy.  I know this is God’s way of enabling you to get things ready because before you know it, the third trimester comes around and you are feeling more and more like an oil tanker than a jet ski.

There are times when I’m having severe backaches, pinched nerves, swollen feet and heartburn that would light up the city of Toledo, I just wish that it would all be over with.  Then I realize that when that happens, Faith won’t be with us anymore.  Then the guilt rolls in that I’m putting my personal comfort over her life.  In some ways, you would think I was catholic with all the guilt that I tote around these days.  Guilt that I can’t pick up Nate anymore and take care of him the way I need to.  Guilt that I can’t do things with Hope that I want to because of the physical limitations that prevent me from doing so.  Guilt that I can’t be the wife to Bill that I want to be in taking care of the house and having so much of the burden falling on him.  Of course after telling Bill all of this, he just looks at me and smiles and says, “It’s only for a short while; it will be ok”.  How blessed I am to have such a wonderful husband that helps me keep things in perspective.

So I would really appreciate prayers to help me deal with the physical pains of this pregnancy.  This one has been much harder on my body than when I was carrying Hope and Nate.   Also, that I would not let the enemy plant the guilt in my mind that he has been trying to sneak in.  This is still a battle for my mind in how I choose to see our situation and the enemy would love nothing better than to distract me from what is important, giving glory to Him and reaching out to others.   

I want to send a quick thank you to those who have commented on my blogs.  I do like to hear from those who have read it and were blessed, especially if I don’t know you personally.  It is neat to know that through this medium, I can be a blessing to others who I may not ever met this side of heaven.  You can also contact me directly and send me an email by going to the link in the right hand column.

May the Lord bless you abundantly!

At long last, I’m writing about Hope’s evaluation with Little Giant Steps.  The evaluation did confirm several things we suspected were issues but also revealed something we wouldn’t have thought of.  The actual program that was created for her has us doing several activities with her throughout the day to improve several different areas.  I won’t be going into detail as to exactly what we are doing because these activities are proprietary in nature.  I can though go into what was determined to be the areas that needed work and a very general description of what will be done.

The highest priority area that needs work in is regarding discipline.  Anybody that has been around her for a period of time can tell you that though she can be compliant when she chooses to be, there are times when she will dig her heals in the sand and not budge, and it can be over the strangest issues.  For example, during the evaluation, the evaluator wanted to observe her gross motor skills and asked Hope to crawl on the floor like a baby, then to move like a snake on the floor.  She flat out refused.  I know she can do this because she had done them at home the week before.  I bought a BOZ board game and if you draw a blue outlined card, you have to act out the action and one of them is to crawl like a baby.  She was also moving around like a snake on our floor and getting big giggles from Nate.  Yet, for whatever reason she would not do it for the evaluator.  So I told her if she didn’t do what was asked of her, she couldn’t have the strawberry dessert at the restaurant that night.  No soap; wasn’t budging an inch.  There were other times during the evaluation that she was not cooperative so the evaluator determined that Hope’s cooperation was vital to being able to do the program activities.  After reviewing the videos of the floor exercises and massage stimulating activities, I could see why this is a highest priority area.  In fact our evaluator said if we were unable to get anything else done, if we were able to see real progress in this area, it would be a successful trimester.  Our next appt is Oct 5, so we hope to be able to do more than just have this area worked on.

Based on the information we provided in the documents we submitted, the evaluator was still able to determine that some of Hope’s gross motor functions are off.  We will be doing a series of floor exercises with her to help develop the neural pathways needed to improve this area.  Admittedly we have yet to get started on this portion of the program.  Some of the floor exercises only require 1 person but the others require 2 people to help her and if I get down on the floor these days, it takes a crane to get me back up. 

Another area where she is having problems in is related to her hands.  She is very rough with her toys and books and this is because her hands have not developed the sense of light touch, so we will be doing some stimulating massages on her hands, arms, legs and feet.  She also still has a tendency to not only put things in her mouth, but gnawing so much that the object gets damaged.  We want to be able to break this habit before she gets in her adult teeth so that she won’t cause any damage to them.  She also does have some food aversions related to their texture.  There is a stimulating activity we will do to help her overcome this need to put things in her mouth.  I can relate to this need for something in your mouth as I had to find something to substitute a cigarette when I quit smoking.  Pen caps and lollipops were my usual choices and I never had to worry about someone swiping my pens at work because nobody wanted them.  Can’t imagine why?  J

We will also be doing a head massage to help with not only the oral need, but the hypersensitivity to sound, especially high pitched sounds and her hypersensitivity to having her hair brushed.  If you were in the next room while brushing her hair, even without tangles, you would think I was torturing her.

One area we have known to be a problem is her auditory processing skills.  We will be having her listening to classical music, Mozart to be exact, and books on CD.  I purchased several audio books this past convention, so that was a providential purchase.  We will also be doing some exercises to help her hear a list of items and be able to repeat that list back and in order. 

One final area she will need some work on is regarding her vision.  She has the eyes of a hawk and can spot crosses on top of buildings and water towers miles away and notice details that we would overlook, but she does tend to rely on her peripheral vision, especially when you are talking to her and when she is watching TV.  We will be doing some visual exercises to help overcome this but this is considered to be a very low priority.

Following the evaluation, Bill and I were brought back into the evaluator’s office and she began to explain the program and what we needed to do.  At that time we realized that when we submitted our paperwork we didn’t know about Faith’s condition, so we told the evaluator about Faith.  It didn’t change the program but it will give us some grace in knowing that our family situation is understandably stressed.

So with that all said, we would appreciate prayers in the area of discipline for Hope.  We have been very focused on this, especially the last 3 weeks, and of course there has been some strong resistance and bucking on her part.  We need prayers for steadfastness and consistency.

For those that haven’t known me long, I used to drive a bus while a student at Texas A&M.   I drove for 5 years and it was the best job for a college student.  There was something about being in control of a 50-55 ft bus and the smell of burning diesel that just got the juices flowing.  To this day I can’t help but smile while passing by a bus idling, catching a whiff of the fumes.  At one time, that was the smell of money.  I guess that’s why I’ve always wanted to have a big SUV, and was looking forward to getting a GMC Yukon XL Denali, used of course.  After all, it was going to be pretty tricky trying to cram in 3 car seats in the back seat of our Envoy, plus the need for more room for the extra gear needed when we travel.

Now, there really is no reason for us to get the “big daddy” SUV because we won’t need the extra room.  Yesterday as I was pondering this, we passed by no less than 3 of the exact type of Yukon we planned to purchase, and all were black.  My heart just sank not because I won’t get my SUV and experience the thrill of driving something akin to a Sherman tank, but it is just a reminder of how plans changed when we learned about Faith’s condition.  At first we thought we were going to be adjusting to life with 3 children, instead of 2.  Then when we learned of Faith’s heart defects, we were preparing for surgeries, doctor and therapy appointments on top of the normal adjustments.  Then came the news we weren’t expecting that our Faith not only would not live long, but may not even make it to the due date.  It really did feel like the wind was sucked out of us and the rug pulled out from under us.  Some people might think all of this sounds pretty superficial, but it’s things like this that seem to catch me off guard and remind me of the reality we are facing.

We had our latest ultrasound appointment yesterday and Faith is now 2 lbs 6 oz and her birth weight is predicted to be 4 lbs 8 oz. We were able to get some really great 4d pictures this time and on the video recorded many shots of Faith.  She actually was still long enough that we could see along her side and legs.  It was amazing to see her face and look at Nate’s and see how similar their facial features are. How long she will live is still something only the Father knows, but according to Dr. Mirabile, statistically she will probably live no more than 24 hours when she is born.  The date of delivery is still set for August 14, only 36 days away.  My amniotic fluid is at a high level, but it is not interfering with my health yet.  I am occasionally having difficulty breathing, but usually it is toward the end of the day and probably more from fatigue than the fluid putting pressure on my lungs.  This of course could change, but so far, the date will stand.

One of the hardest decisions we had to make was whether to have her buried or cremated.  I’ll admit this was not the kind of decision I envisioned would need to be made by us anytime soon, much less for our infant daughter.  Last week a couple of things came together that led us to make a decision that we were both at peace with.  On July 3, we “celebrated” the 3 year anniversary of buying our Envoy (do we know how to party or what? J) and we were reminded that back then, we had no clue we would even think about moving, much less move out of Texas.  A friend from a ladies Bible study, Kristen Morgan and her husband Colby who had moved out of state earlier this year shared with me a while back about the loss of their twins and that they had made the decision to cremate and keep the urns with them.  I thought about how agonizing that would have been for them to leave the twins behind here in Oklahoma when they moved if they had opted for burial.  Now no matter where in the world they are, the twins will be with them.  Bill and I also realized that who knows where we will be in 3-5 years.  Hopefully we won’t need to move anytime soon, but if we did, I couldn’t bear leaving Faith behind.  So, we will opt for cremation and keep the urn with us.  I have been looking online for an outfit for her to wear on her Birthday and before the funeral home comes to get her, we will change her out of the outfit and wrap her in a soft pink blanket.  Her urn will be on our mantel and next to it a teddy bear will have her Birthday outfit on.

Our next ultrasound is July 31, so we will have one more time to get more pictures and video.  We will also be meeting with the Pediatrician to go over the birth plan for Faith and what will be done and what will not be done.  We will also be meeting with our Young Adult pastor soon to discuss dedicating Faith in the hospital room.  So many details and decisions still to be made, so please keep us in prayer that everything would fall into place and that we would be at peace with each choice made.