Seeing Him

I don't even know where to begin. So many thoughts running around in this brain of mine! Many of which, I am unable to even be able to articulate into words. One thing I know, that God is doing a work in my heart. A deep work. A work that I am confident that when it is completed will change me - forever.

I have been absolutely amazed at how much God has ministered to me. So many have ministered to us in the past several months. To this day, I still can be brought to tears to think of the sacrifice that went into our Christmas gifts from so many of our friends - (you all know who you are!). Deeply each one of you sacrificed for us, and how deeply your love has been engraved upon our hearts. He used you to minister to us. I am in awe, at your sacrifice. I am humbled at His love shown through you.

This past weekend I attended a parent / teen retreat with Abbey. I was looking forward to the weekend with Abbey. Just her and me. But I went with a heavy heart. Not worried or burdened with anxiety; but tired. Emotionally. It seems that in July when Rachel was admitted to the hospital the first time, that life stopped for me. Suddenly, my days were spent with one single focus - getting Rachel better. Much of my days have been spent at home or in a hospital room. Life for everyone else has gone on. Activities attended. Routines and schedules have regulated the everyday. My days plans have changed more times than I care to count!

With this time of absence, has also come a feeling of not knowing how to get back into life. (Perhaps this makes no sense; but it has been exactly how I have felt.) I go to church, and I feel like a visitor. The atmosphere is alive and people have their places to go; and I am left scrambling to try to figure out where I fit in. This weekend I had some of these same feelings as I headed to the camp. I felt numb - like life was going on around me and I was sitting there watching. Part of me wanted to just jump in there and pick up where I left off - but I felt so emotionally drained that I did not have even the energy. I was not looking for someone to minister to me - I was not looking for anything at all; but God knew my need, and once again He met it through others.

Throughout the entire day I was surrounded by other sisters in Christ. I was sitting under preaching that touched deep into my heart. Oh how deeply it all ministered to me. Like healing salve on a wound. I left blessed. I attended church today and felt like my cup was filled to overflowing. The music, the testimonies, the encouraging words offered by so many. Each person who told me they have been praying for Rachel touched me deeply. I left church tonight feeling like I belonged. I left knowing God had chosen this place, these people to minister to my heart.

It all has made me think of ministry in a whole new light. Have I ministered the way God has wanted me to. I believe that one of the greatest ways God works in people's lives is through other people. I have asked myself this question so much in the past four weeks: "If God's love is shown to others through me - how many have missed seeing His love for them because I have been too busy going about my life, doing my things, to take the time to minister?" So much conviction.

I want to minister - to meet needs. To have the time, yea, to make the time to be able to talk with someone. To have the ability to listen, without condemning, as someone opens up their heart and needs. To share Christ. The unsaved need to see Him through me. My neighbor. The cashier at the store. The woman I pass in church. The saved need to see Him through me. To minister His healing to hearts that are hurting. To pray with a sister in Christ who is struggling with her faith. To take a meal. To make a visit.

This week - I will minister Christ. I will share. I will love. I will pray. I have been so blessed in the past months by so many of you. Thank you. You all will never know what your love has meant to me. Every card. Every call. Every gift. Every meal. Every visit. Every email. Every text. You have been a picture of Christ to me. Thanks for making His image so clear. I needed to see Him. I saw Him in you. I will never be the same! Thanks!


Update on Rachel

We are still waiting for one last test to come back for Rachel from the immune deficiency clinic. There is only one test pending; however, it is the one that we need to compare with the other tests. So we continue to wait.

We have found a natural product that is supposed to help with the immune system. (We have tried a lot of them!) This one has seemed to help! She did come down with a virus last week; and that has made this week a bit of a yucky week; but we do seem to have more energy than 3 weeks ago. We continue to try to do our best to build up her immune system and to get into her body optimal nutrition. She is taking a liquid supplement that contains all the vitamins, minerals and enzymes the body needs. (She says it does not taste too bad - looks like it does, though.) LOL. She also is taking pretty good doses of vitamin B - as her thyroid has shown some weakness in some of the natural screening we had done. We have her on omega 3-6 to help with the overall inflammation in the body.

On the pain management scale, she still has quite a bit of pain. They believe that this is related to the guillian-barre syndrome from this summer. The GBS affects the nerves and this still seems to be an issue. She takes quite a bit of prescription pain meds - both for nerve pain and muscle pain. We have been able to pull her back a bit from some of this and not have her in so much pain that she is not able to move. We want to see her off all the meds asap; but we also need her to have mobility in order to get her better. Another fine line we are walking. UG.

She has been doing her physical therapy exercises and also able to go for walks to get the fresh air. She is usually tired and sore after a walk around the block; but we keep doing it. We have had to discontinue her regular PT session at the clinic because she continued getting sick every time that she went in.

The sore is back on her lip. She is scheduled for a biopsy on her lip on Monday morning. They want to determine exactly what we are dealing with there. The great thing is that they have ruled out bacterial infection ( like MRSA). That is great to know. Her throat is very sore most of the time, and the cultures keep coming back as strep. We have an appointment with an ENT in a couple of weeks to discuss a tonsillectomy. Not our first choice, but at the same time there does seem to be some issues coming up due to her throat and swollen tonsils. We have a great ENT that has done a good job with all of Zak's ear,nose, and throat issues.

Well, that is about it on an update for Rachel. Thanks for all your prayers. On a personal note, it has been so much easier balancing all of this without having the hours of driving in the van each day. I am enjoying very much having them home!

Thanks for stopping by - I am so glad you did.



Boots and Brushes

Found Anna in the bathroom brushing her teeth. What I loved was the shoes that she was wearing. She received these for Christmas. She LOVES these boots! She wears them all the time. She wears them out when she plays. She wears them when she is playing with her kitchen up in her room. We even have found her sleeping in bed with them on. She told me that she was wearing them to help her be able to brush her teeth better.

Whatever it takes, honey! I love having little ones around the house. The things they do, the things they come up with can keep you on your toes; but I would not have it any other way.

Thanks for stopping by. I am so glad you did.


I'll Take the Chaos

I was sitting the other day, waiting for two of the kids to get done with music lessons. In the distance I could see a van entering into a driveway. Someone was coming home from a day at work. I noticed that the house seemed shut up, dark and when he approached the door, he fidgeted for his key to unlock the door. I thought of how different it is for my husband when he comes home from a day at work.

The house is never shut up. The window blinds usually have failed to get pulled down, even though darkness has already set in the night sky. The lights are on - usually throughout the house as various rooms are used for the after school activities. I can also assure you, that my husband does not have to rummage through his pocket to find the key to the house. Usually there is one or more kids standing in the doorway, holding the door open, eager to greet him with their questions. ("What are we going to do tonight?" "Did you have a good day at work?" "Did you bring anything home for me?")

I think about the times I come home. Sometimes I have been out for a grocery run, or just taking some time to be out by myself. Coming home is never uneventful. With five kids in the house, there is always some element of organized chaos going on. I never get in through the door without some sort of question being launched my way. Normally, it is more than one question by more than one child. I will normally have to step over a set of shoes in order to get through the entry way safely.

Our kids have never been the kind that sit on the sidelines and watch life happen. They tend to be right in the middle of whatever is going on. Sometimes, they even are the ones that are making things happen - that can be good and that can be bad! If Rob and I come home from a date and decide to sit out in the car for a few minutes to finish talking, I can guarantee you that there will be children looking out the window, waving at us and watching us as we talk. (If we stay out too long in the car, the cell phone is bound to ring - the kids calling to ask us what we are doing out in the car.) Never a dull moment.

So, as I sat and watched the man go into the house, the lights within being turned on. I thought about the differences. While, coming home to our house requires some sort of mental preparation gearing up for what will meet you on the other side of the door, coming home to quiet seems far worse to me. Someday, they will all be grown and gone. We will come home, the house will be quiet, the lights off, the heat turned down. The prospect of having three teenagers this summer, makes me realize that 'someday' is closer down the road than I wish it were.

So, while coming home to our house is not for the faint of heart, I am going to enjoy having the chaos. Someday I will have my quiet, today I have energy and life staring me in the face. Children truly make your life more interesting; but when I walk past their rooms at night and seem them sleeping snugly under their covers I know that I have been blessed by God.


Mom: Zak, stop picking your nose.

Zak: (Quickly taking his finger out of his nose) Yes, Ma'am.

Mom: (quite taken aback by his great obedient response-- says nothing)

Mom: (Looking over at Zak's younger sister) Anna, stop picking your nose! (Quickly giving Zak a look that said, "see what you taught your sister to do!")

Anna: But, Momma. I need to get the rocks out of my nose!

Mom: (To Abbey sitting close by) What did she say?

Abbey: She said she needed to get the rocks out of her nose.

Anna: There are rocks in my nose

Mom: (Having never heard the word 'rocks' used for the word boogers) Leave the rocks where they are. Stop picking you nose!

Anna: (reluctantly) Yes, Ma'am.

Some days I think there are rocks in my head. Today my daughter thought they were in her nose! Made for a good laugh anyway.

Trust you are having a wonderful day. Thanks for stopping by, I am so glad you did.



Your Teeth Are Showing!

Zak came to me the other day and said, "Mom your not mad are you?"

I was taken aback by his question. Of course I was not mad! I was humming and cleaning the bathroom. The day had been a good one - and I was enjoying it. "Uh, no. I am not mad."

"I knew it!" he smiled one of his big toothy grins! "I knew you wern't mad! I could see your teeth! If I see your teeth - I know you are not mad!"

I sat there for a moment. Took in the statment; and then vowed in my heart to show my teeth a little more often. I seem to have one that takes a special fancy to my teeth. Funny, I never had thought of it that was before.

So if you stop by and I answer the door with one of those big cheesy grins - I have not lost my mind. I just have a little one who finds it far more comforting to see my teeth rather than just my lips when he looks at my face.

When Life Becomes a Waiting Room

It seems like we have spent a long time waiting. Longer than I would have wanted to wait - had I been the one to choose. No matter how cozy the accommodations of a waiting room, after spending enough time in one, a person can start to feel boxed in. When life becomes a waiting room, the same thing happens. It has been a year since Rachel got sick. We have a clear understanding of this concept of the waiting room of life.

Today, we go down another path. I can not help but feel we are close to finding out the answer. I am not sure if the answer will be something that will be easy to understand; but waiting and not knowing seems harder than even the worse diagnosis. Even if the ailment has a dreaded name - isn't at least knowing the name of what is afflicting her better than knowing nothing? Perhaps if a few days - I will know the answer to the question. Today, it is purely hypothetical.

I thought about the title of this post last night before I went to bed. I got up early this morning and read in my devotions. I like what He had to say to me: "It is good that a man should both hope and quietly wait for the salvation of the Lord." Lam 3:26.

He has set our life on 'hold' so to speak. We are waiting. Waiting for answers. Waiting for healing. Waiting for answered prayers. Waiting... and, it has been good for us. I may not feel that; but I can trust that. He knows what He is doing. He knows what is best.

I need not concern myself with begging and pleading for this trial to end. I need not concern myself with fervent prayers for her complete healing (although in my flesh I feel I would not want anything more)! I need only to ask God to accomplish His will in our lives. His will in her life. I need turn to Him and allow this trial of our faith to draw me closer to His side. Daily, hourly, every moment laying down my desires for the situation upon His altar and asking Him to do what is best - for us.

My husband has a plaque on his office wall that says, "Faith is not believing that God can - it is knowing He will." I know God can heal Rachel - and I know that God WILL do that which is best for us. Faith is trusting that God WILL do that which is best for me.

So, today we go to get answers. Direction. The answers may be hard. The new direction may be difficult - - but it will be what is best. I ask for your prayers. Pray that we will be ever drawn to our precious Saviours side. That we would know His presence. That we would understand His grace. Pray that we would be a light to those with whom we come in contact. That they would see Christ. Pray that we would be surrendered to whatever God has for us. That He would be real to us. That Heaven would be real to us. Pray these things for us - for this is best.

"In the shadow of thy wings will I make my refuge,

until these calamities be overpast."

Ps 57:1b

Another Update

We have been in and out of doctor's offices since I last posted. Rachel continues to battle with several infections. She is also having some peripheral nerve issues surfacing again. Her vision has changed in the last couple days. These things happened this summer when she was in the hospital for the Gullian-Barre syndrome.

We made a trip down to Children's last night because her doctor here felt that we had another infection starting up. Her lab work last night at the hospital did not send up any red flags and they sent her home for the time being. (She was so glad to be going home!)

She has an appointment with the Immune doctors tomorrow afternoon. We are awaiting what tests they will decide to run; and get their opinions on what is going on with Rachel's health.

Things at home here have been running pretty smooth. We seem to be in a holding pattern and that can be a bit unnerving. I have been trying to get things done and be proactive in having things ready in case we have an extended hospital stay ahead of us. I also have tried to keep busy - so as to help me not go crazy with all the details we are being given in regards to this T cell disorder.

God is good. I have been prompted several times to read a certain passage. Always I find comfort and encouragement through God's words to me! I feel quite assured that God wants me to make Him and Heaven so real to Rachel that even though what she is going through at this time is hard, she will have a peace that God is greater and Heaven is better than anything this world has to offer.

I will keep you all updated as I can. Thanks again for your prayers.



Searching for Answers

Pictures of Rachel before she was sick...

Rachel continues to be sick. The skin on her arm is healing in some parts - other parts of the arm continue to be open sores. This causes a problem if the sores get caught on something or rub on her sheets wrong. They have opened up and bled more than once.

This week she has been very sick. The anti-viral medication makes her ill. The doctors have increased her anti-nausea medication to their highest possible dosing. This has helped some.
She went in again this week - and has strep again. They are quite concerned because the strep that she has is not your normal group A or B strep. It is a very very rare form of strep. She is in a lot of pain with her throat.

The doctor contacted the infection disease clinic requesting for them to see Rachel. After reviewing her records and having a conference call with her two doctors here, Infectious disease doctor's felt that her care needs to be handled by an immune deficiency group. Those doctors were contacted. After they reviewed her case, they feel that we are looking at there being something wrong with her blood. More specifically, the T-cell part of her blood cells. The T-cells are the part of the blood cells that fight viral infections.

There is one particular disorder that is extremely rare but shows itself after a case of mononucleosis. After the body gets sick with the mono, the blood cells do not fight off viral infections. (I am trying to write this - the best way I understand it .. I hope I am saying this all correctly!) :) They are running blood work and tests and looking into this as one of the possibilities of something that could be causing her to be so sick.
She has an appointment with the immune deficiency clinic at Children's hospital next Wed. She will meet with the oncology specialist of the clinic at that time. I have done my fare share of googling and researching the t-cell deficiencies. It is 'over my head' , so to speak; but understandable enough to know that none of these issues are fun/good issues with which to be dealing.

We covet your prayers! I will be spending the week trying to not go crazy wondering about it all. I plan on being proactive in getting things around the house in order and organized - that if I have to stay with Rachel for a hospital stay - things here will run smoothly for a short time. If Rachel gets sick with anything else before Wed, I am pretty sure we will end up at Children's early.

Thanks for all your prayers, gracious emails and kind notes and cards. They mean so much to us at this time. I will keep posted as I find out information.

A Chapter Closed

What an eventful week we have had here! When Rachel went into the wound clinic they felt that they were looking at a staph infection moving up her arm toward the lymph system. They told me if it did hit the lymph system it would be a matter of life or death. (Not the most pleasant thing to hear as a Mom!) From the moment we walked into the clinic to the time when they were putting the IV into her arm was a short 2 hours. I knew we were looking at something serious.

The attending doctor came and looked at her arm and told me that he was wondering if we were looking at a case of shingles. He said it did not look like shingles but it was following the nerve line of the arm like shingles would. He also said that both thoughts - the staph infection and the shingles - were both theories. He said that they would treat for both and watch it overnight to see what happened. So IV meds were started - antibiotics and antivirals. They also began morphine for her pain.

By the next afternoon the doctor felt confidant that we were looking at a case of shingles. He also felt that we could take Rachel home and continue the meds there. She is taking anti-viral meds. She is on a quite high dose of the anti-viral meds. It is interesting that everything that she has had has been viral and in the herpes family of illnesses. We followed up with the doctor on Friday and he said that he wants Rachel to see a specialist about her immune system. About every 10-14 days she is getting sick with something else.

Back in November, Rob and I began talking about and paying about taking Rachel out of school for the second semester. We feel very strongly that God would have us bring Rachel home and continue her school here at home. I would like to say that this was an easy decision; but it was not! For one thing, this is Rachel's senior year. Taking her out of school would mean that she would not be formally graduating. This fact became less and less of an issue in the past several weeks as she continued to have her health deteriorate. I think the hardest part of the decision was knowing that if Rachel came home - that all the kids would come home. Because we live almost an hour away we knew that it would not be possible to home school Rachel and have the others continue school in the academy. This was the toughest part of the decision. In the weeks before Christmas break God gave great peace that it was a decision that we needed to make and a decision that He would bless.

On Christmas day we broke the news to the kids that we would be homeschooling after the break was done. There were tears. Abbey was especially disappointed in the changes. It was hard to see her so sad. Today while Abbey was in for church she cleaned out her locker and Rachel's locker. We have closed a chapter in our lives and reopened a new one.

The time the kids were in the academy was a time of real growth in our family. We are so thankful that God opened the doors for that opportunity. This past semester has been the hardest and most draining weeks we have lived through in our entire lives. They also have built character and brought a clear picture of what is important in life. Even though we are not finishing the entire school year, we feel that as a family we finished strong at the academy and now God is moving us on to a different chapter in our lives. We are excited.

I have missed the homeschooling routine and schedule of our lives. I am looking forward to being back in the saddle again. We plan on taking a couple of weeks working on routines and housework that have been neglected because of our busy schedule this past semester. We also want to give Rachel some added time to rest and get stronger before she jumps into her last semester of high school.

So, a chapter closes and another one reopens. We know this is what God has for us at this time. We are praying for strength and healing in Rachel's body. We are looking forward to more time together as a family. For all of you who are praying and have prayed for us - thank you so much. Words can not express how much your prayers have and do mean to us at this time. Thank you!

Thanks so much for stopping by. I am so glad you did.