I have always been an impatient person, rushing here and there, jumping to conclusions and tapping my feet at red lights :-) God has somehow turned my life inside out and speed is the last thing I can do! Waiting, waiting, waiting....5hrs to see the dr....two days for the PIC line....three weeks without eating...I've learned that progress isn't always measured by what happens but by what doesn't.
Today started out hopeful: waiting for the drs to round so we could tell them Ruth still had no pain and get their approval to move forward...10 o'clock came, then 11, then 12, then 1...my frustration grew as the clock moved forward with no sign of the drs...then I remembered: the doctors weren't in control, God was--I realized it was easier to write about singing in a hospital room than to actually do it :-) especially when I was WAITING! But eventually the doctors did come and told us her labs were good and we could start offering her liquids...
Then the process started: a swallow every 15minutes..>I was determined not to rush it this time....then another swallow...then two swallows...inching forward with progress! I have a brand new appreciation for everything I put in my mouth, as I'm sure Ruth does too :-)
Then while sitting in the waiting room I met a young mother with a four year old son with pancreatitis! They have struggled with the disease for a year and always wanted to meet another family dealing with it. We are the first family they have seen at 3 hospitals in a years time to have this problem! I wonder, what does God have planned for us--to bring our paths together.....
Moving on...one swallow, one minute, one day at a time!
Monday, May 31, 2010
Sunday, May 30, 2010
Singing from a Hospital Room
"There is an endless song
Echoes in my soul
I hear the music ring
And though the storms may come
I am holding on
To the rock I cling
How can I keep from singing Your praise
How can I ever say enough
How amazing is Your love
How can I keep from shouting Your name
I know I am loved by the King
And it makes my heart want to sing
I will lift my eyes
In the darkest night
For I know my Savior lives
And I will walk with You
Knowing You'll see me through
And sing the songs You give"
This song has been ringing in my ears throughout the past two weeks...in the darkest moments, the times I didn't know what was next--I felt His joy and His praises echoing in my heart. Praise His Name! I have realized that true joy isn't rejoicing when the labs go down or when the pain is gone...true joy is knowing that I am loved by the King and He is in control!
Today I sat in the playroom watching Ruth sing and play the keyboard...she has a tube in her nose with tape on half her face, she has a double lumen pic line hanging from her arm and where ever she goes a pole goes with her carrying her nutrition...and still, she sings with a smile on her face. What a testimony to us!
Even though we would rather not be here in a hospital room in Philadelphia, we have realized there is so much to be thankful for: so many other children are suffering worse than Ruth. I met a mom who has a 2yr old boy who can't eat...his intestines won't work and he has been in and out of the hospital and struggling for almost 2yrs. He is confined to his room here at Philly because of a previous infection and they aren't even sure he will ever recover from this disease....then there is the 10yr old boy happily putting together a puzzle last night...he asked how long Ruth had her tube and then told me he has a tube put in every single night and has for two months to give him nutrition. He suffers from Krone's disease. I could go on and on....We have discovered there is another whole world out there--a world of pain and suffering that we had never experienced before. Our journey has given us empathy and compassion in a way we never could have known before and yet we have discovered it is possible to sing from a hospital room!
Our current status is waiting, waiting and praying that Ruth will one day soon be able to go home and eat again...but I have realized that even if she doesn't I can still love her and share precious moments and most importantly praise our Heavenly Father who is still watching over us and always will.
Praise His Name!
Echoes in my soul
I hear the music ring
And though the storms may come
I am holding on
To the rock I cling
How can I keep from singing Your praise
How can I ever say enough
How amazing is Your love
How can I keep from shouting Your name
I know I am loved by the King
And it makes my heart want to sing
I will lift my eyes
In the darkest night
For I know my Savior lives
And I will walk with You
Knowing You'll see me through
And sing the songs You give"
This song has been ringing in my ears throughout the past two weeks...in the darkest moments, the times I didn't know what was next--I felt His joy and His praises echoing in my heart. Praise His Name! I have realized that true joy isn't rejoicing when the labs go down or when the pain is gone...true joy is knowing that I am loved by the King and He is in control!
Today I sat in the playroom watching Ruth sing and play the keyboard...she has a tube in her nose with tape on half her face, she has a double lumen pic line hanging from her arm and where ever she goes a pole goes with her carrying her nutrition...and still, she sings with a smile on her face. What a testimony to us!
Even though we would rather not be here in a hospital room in Philadelphia, we have realized there is so much to be thankful for: so many other children are suffering worse than Ruth. I met a mom who has a 2yr old boy who can't eat...his intestines won't work and he has been in and out of the hospital and struggling for almost 2yrs. He is confined to his room here at Philly because of a previous infection and they aren't even sure he will ever recover from this disease....then there is the 10yr old boy happily putting together a puzzle last night...he asked how long Ruth had her tube and then told me he has a tube put in every single night and has for two months to give him nutrition. He suffers from Krone's disease. I could go on and on....We have discovered there is another whole world out there--a world of pain and suffering that we had never experienced before. Our journey has given us empathy and compassion in a way we never could have known before and yet we have discovered it is possible to sing from a hospital room!
Our current status is waiting, waiting and praying that Ruth will one day soon be able to go home and eat again...but I have realized that even if she doesn't I can still love her and share precious moments and most importantly praise our Heavenly Father who is still watching over us and always will.
Praise His Name!
Life Happens
I found myself trying to settle into a new routine at home with 24/7 tube feedings for Ruth and tubes and syringes and hospital bags everywhere. Before we even found a new normal however the events turned again. Ruth was home less than 48hrs when she started to vomit...first occasionally and then hourly. After 24hrs we were back at the family doctor and later that morning were re-admitted to Hershey for dehydration and monitoring.
Forget surrender, forget peace, forget praying! My frustration and discouragement were at an all time low...what was going on? What did I do wrong? Did I miss a lesson God wanted to teach me? Did I not have enough faith? Were we being punished? We sat in the hospital another two days and then were sent home again to resume tube feedings...nothing made sense anymore..my confidence in drs and medicine had faded and I wasn't even sure Ruth was ok to come home but I just went along with the flow...Sure enough 3hrs later Ruth had a major attack of pain and we were frantically rushing back to the ER that night.
By this point we were furious, sad and frustrated...at medicine, at life, at this horrible disease! By this point Ruth had been stuck so many times there were little areas available for an IV so we asked for the best nurse they had. My heart broke again as we had to hold our little girl down as they tried to find a site. The nurse was excellent and as she started the IV she said, "Praise God! I was praying." It was so encouraging to be surrounded with fellow believers even in that tough situation.
Through this whole process I have had plenty of time to think and pray and it dawned on me one day that LIFE HAPPENS. As Christians we aren't granted free parking through life....stuff happens, trials, bad things, surgery, pain: it's all part of living in this world. The difference is that as Christians we have God's support and love to carry us through. I finally realized we weren't being punished. God had a plan in all of this and He would carry us through even though it might not be a quick trip or exactly the way we wanted it.
We sat in the ER 15hrs and waited for a bed in the hospital. Her numbers had tripled, her white blood count was up and the inflammation was back. I was once again reminded that God has a plan. We felt prompted at this point to ask for a 2nd opinion for her treatment. We felt that God was holding us in the ER for a reason....to prompt us that we were supposed to leave Hershey and weren't meant to get a bed. We asked the head doctor to be transferred to Philadelphia and he fully supported our decision. Within 7hrs we were in an ambulance headed to CHOP and arrived here Wednesday, May 26th.
Forget surrender, forget peace, forget praying! My frustration and discouragement were at an all time low...what was going on? What did I do wrong? Did I miss a lesson God wanted to teach me? Did I not have enough faith? Were we being punished? We sat in the hospital another two days and then were sent home again to resume tube feedings...nothing made sense anymore..my confidence in drs and medicine had faded and I wasn't even sure Ruth was ok to come home but I just went along with the flow...Sure enough 3hrs later Ruth had a major attack of pain and we were frantically rushing back to the ER that night.
By this point we were furious, sad and frustrated...at medicine, at life, at this horrible disease! By this point Ruth had been stuck so many times there were little areas available for an IV so we asked for the best nurse they had. My heart broke again as we had to hold our little girl down as they tried to find a site. The nurse was excellent and as she started the IV she said, "Praise God! I was praying." It was so encouraging to be surrounded with fellow believers even in that tough situation.
Through this whole process I have had plenty of time to think and pray and it dawned on me one day that LIFE HAPPENS. As Christians we aren't granted free parking through life....stuff happens, trials, bad things, surgery, pain: it's all part of living in this world. The difference is that as Christians we have God's support and love to carry us through. I finally realized we weren't being punished. God had a plan in all of this and He would carry us through even though it might not be a quick trip or exactly the way we wanted it.
We sat in the ER 15hrs and waited for a bed in the hospital. Her numbers had tripled, her white blood count was up and the inflammation was back. I was once again reminded that God has a plan. We felt prompted at this point to ask for a 2nd opinion for her treatment. We felt that God was holding us in the ER for a reason....to prompt us that we were supposed to leave Hershey and weren't meant to get a bed. We asked the head doctor to be transferred to Philadelphia and he fully supported our decision. Within 7hrs we were in an ambulance headed to CHOP and arrived here Wednesday, May 26th.
The Worst that could happen............
Monday and Tuesday were spent in a numb daze, sitting by her bedside watching her sleep, barely talking or moving....the fluid started to accumulate in her lungs from the inflammation in the pancreas. We would anxiously ask the dr's..."but is she going to be ok?" They told us she was in the top 75% of the children that get pancreatitis...I was shocked when they said it might be 4-6weeks until she could eat anything. She was totally NPO(nothing by mouth) for days.
I was asked, "What is the worst that could happen?" The worst I would allow myself to think was missing Vanita's wedding which was quickly approaching--My friend pointedly said: "no, the worst thing is that you would lose your faith in a loving God." I couldn't even wrap my mind around that one...I wanted to have faith but right now I was feeling pretty beat up.
However, as the week progressed she improved quicker than expected and by Friday evening we were home...whew! I thought the worst is here and gone....far from it! By Sat evening we were back in the ER with her having pain and a fever. The nightmare continued and I just wanted to pinch myself and wake up. She was admitted again and for another 5 days I sat there in the hospital room and questioned and worried and hoped.
There was a point when she wasn't tolerating anything and we didn't know what would happen next. By this point I was feeling very defeated and wondering what good all the prayers had been. The wedding was now four days away: my parents were sick so they couldn't watch the children, our 2nd mortgage was coming due and Ruth wasn't getting better.
I remember driving back to the hospital in exhaustion and defeat and telling God I gave up everything: even Ruth...suddenly I realized that the worst thing that could happen WAS not to feel God's Love, not to believe that He was real and He was there for us...just as quickly I also realized that He was real that He was there with me in the car and I felt the presence of angels as I began to praise His name.
I have never felt such an awesome presence before--when I came to the end of myself, the end of all my plans,hopes, dreams...everything I held dear was laid at His feet--under His care.
I sat in the car at Hershey and sobbed: willing for whatever He had in store. I realized He was helping me face my worse fears of losing a child...He was giving me the privilege of laying her at His feet and letting Him protect her life in whatever way she needed.
Thursday night I was once again waiting and praying when suddenly a passage of Scripture came to me:
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8 For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.
9"Which of you, if his son asks for bread, will give him a stone? 10 Or if he asks for a fish, will give him a snake? 11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!"
I felt His gentle prompting...you gave me your Isaac--now I'm giving you the ram in the bush--here is My promise--pray it! So Dave and I prayed this verse together and asked our Heavenly Father for a 'loaf of bread' for our daughter.
Within 12hrs she was tolerating the feeds up to full speed and was home 24hrs before the wedding! We were all able to celebrate with Vanita and Joe last Saturday and even though the hard days weren't over--God gave us the blessing we asked for just when we needed it!
I was asked, "What is the worst that could happen?" The worst I would allow myself to think was missing Vanita's wedding which was quickly approaching--My friend pointedly said: "no, the worst thing is that you would lose your faith in a loving God." I couldn't even wrap my mind around that one...I wanted to have faith but right now I was feeling pretty beat up.
However, as the week progressed she improved quicker than expected and by Friday evening we were home...whew! I thought the worst is here and gone....far from it! By Sat evening we were back in the ER with her having pain and a fever. The nightmare continued and I just wanted to pinch myself and wake up. She was admitted again and for another 5 days I sat there in the hospital room and questioned and worried and hoped.
There was a point when she wasn't tolerating anything and we didn't know what would happen next. By this point I was feeling very defeated and wondering what good all the prayers had been. The wedding was now four days away: my parents were sick so they couldn't watch the children, our 2nd mortgage was coming due and Ruth wasn't getting better.
I remember driving back to the hospital in exhaustion and defeat and telling God I gave up everything: even Ruth...suddenly I realized that the worst thing that could happen WAS not to feel God's Love, not to believe that He was real and He was there for us...just as quickly I also realized that He was real that He was there with me in the car and I felt the presence of angels as I began to praise His name.
I have never felt such an awesome presence before--when I came to the end of myself, the end of all my plans,hopes, dreams...everything I held dear was laid at His feet--under His care.
I sat in the car at Hershey and sobbed: willing for whatever He had in store. I realized He was helping me face my worse fears of losing a child...He was giving me the privilege of laying her at His feet and letting Him protect her life in whatever way she needed.
Thursday night I was once again waiting and praying when suddenly a passage of Scripture came to me:
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8 For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.
9"Which of you, if his son asks for bread, will give him a stone? 10 Or if he asks for a fish, will give him a snake? 11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!"
I felt His gentle prompting...you gave me your Isaac--now I'm giving you the ram in the bush--here is My promise--pray it! So Dave and I prayed this verse together and asked our Heavenly Father for a 'loaf of bread' for our daughter.
Within 12hrs she was tolerating the feeds up to full speed and was home 24hrs before the wedding! We were all able to celebrate with Vanita and Joe last Saturday and even though the hard days weren't over--God gave us the blessing we asked for just when we needed it!
Saturday, May 29, 2010
Drawing closer
"Crosses are a means that God uses to draw us closer to Himself". A quote I had saved from my accident scrapbook--a previous time in life when I had to walk through a trial and felt God's presence.
The story goes back to August of 2003 when I was involved in a serious accident by myself in the hills of WV. A kind truck driver stopped at the accident scene and stayed by my bedside in the ER all night long until I was discharged with no serious injuries. He then drove me home, stopping to buy me breakfast and then deliver me safely to my parents. I never forgot his kindness or how God worked in my life that summer. I have never felt God's love so clearly or powerful as I did that August--when I hit rock bottom and had nothing left but Him.
Saturday, May 8th I was reminded of that through an amazing 'God-planned' encounter. The truck driver, Bob, called me out of the blue and said he was in the area that day could he visit?! I was shocked and excited. We had been praying all day for Ruth who had vomited that morning and was looking worse throughout the day. Bob's sudden call seemed so providential..what are the chances that a truck driver I only met once who had since moved to NC would be in my town the day that I was calling out to God for help? I felt an amazing spirit of excitement and started to praise God for what He was going to do in our life. Dave and I planned a quick meal and Bob came that afternoon...we talked about the accident and how God had worked that summer...Later over the supper table Bob talked about his wife who had died of cancer 2 years after my accident. He looked at us and said, "Sometimes it's hard to know why God allows some things to happen...but He always has a plan." I felt a sudden warning, like maybe things weren't going to be just 'fixed' for us--maybe it was part of a bigger plan.
Later than night we had to take Ruth to the dr and she was admitted to Harrisburg hospital for dehydration. I was puzzled...I had felt God's presence so clearly that afternoon--how did we end up in the hospital? where was His healing touch?
The next morning her condition worsened and after tests and labwork the dr's diagnosed her with pancreatitis and had her transferred to Hershey Medical Center.
It was then I realized this wasn't a little stomach bug, it wasn't going to be an easy answer: our little girl was really sick. I felt myself go into a numb sort of fear and worry as our little girl was transported by ambulance to the ped floor at Hershey and my mind tried to sort out what was happening and why....
A team of dr's, nurses and residents surrounded her and quizzed us on her sickness. They ordered a stomach tube placed to drain her swollen belly. Dave and I stood back and watched a team of people hold our little girl down and force a tube down her throat as she screamed in terror and vomited as she fought. I couldn't take the pain of watching our little girl suffer. I stumbled out to the hallway with Dave--we sobbed at the heart-wrenching screams of a little girl in pain, our daughter, I could no longer protect her from pain, I couldn't make it all better, I couldn't shield her from this experience...I have never felt so helpless as in that moment when as a mother I had to walk away from my daughter.
Suddenly, amidst the pain and realization that we couldn't be there for her--I heard a still small voice..."But I am"...and I realized that it wasn't my job to protect Ruth or carry her through life....God was there and He would take care of her even when I couldn't.
The story goes back to August of 2003 when I was involved in a serious accident by myself in the hills of WV. A kind truck driver stopped at the accident scene and stayed by my bedside in the ER all night long until I was discharged with no serious injuries. He then drove me home, stopping to buy me breakfast and then deliver me safely to my parents. I never forgot his kindness or how God worked in my life that summer. I have never felt God's love so clearly or powerful as I did that August--when I hit rock bottom and had nothing left but Him.
Saturday, May 8th I was reminded of that through an amazing 'God-planned' encounter. The truck driver, Bob, called me out of the blue and said he was in the area that day could he visit?! I was shocked and excited. We had been praying all day for Ruth who had vomited that morning and was looking worse throughout the day. Bob's sudden call seemed so providential..what are the chances that a truck driver I only met once who had since moved to NC would be in my town the day that I was calling out to God for help? I felt an amazing spirit of excitement and started to praise God for what He was going to do in our life. Dave and I planned a quick meal and Bob came that afternoon...we talked about the accident and how God had worked that summer...Later over the supper table Bob talked about his wife who had died of cancer 2 years after my accident. He looked at us and said, "Sometimes it's hard to know why God allows some things to happen...but He always has a plan." I felt a sudden warning, like maybe things weren't going to be just 'fixed' for us--maybe it was part of a bigger plan.
Later than night we had to take Ruth to the dr and she was admitted to Harrisburg hospital for dehydration. I was puzzled...I had felt God's presence so clearly that afternoon--how did we end up in the hospital? where was His healing touch?
The next morning her condition worsened and after tests and labwork the dr's diagnosed her with pancreatitis and had her transferred to Hershey Medical Center.
It was then I realized this wasn't a little stomach bug, it wasn't going to be an easy answer: our little girl was really sick. I felt myself go into a numb sort of fear and worry as our little girl was transported by ambulance to the ped floor at Hershey and my mind tried to sort out what was happening and why....
A team of dr's, nurses and residents surrounded her and quizzed us on her sickness. They ordered a stomach tube placed to drain her swollen belly. Dave and I stood back and watched a team of people hold our little girl down and force a tube down her throat as she screamed in terror and vomited as she fought. I couldn't take the pain of watching our little girl suffer. I stumbled out to the hallway with Dave--we sobbed at the heart-wrenching screams of a little girl in pain, our daughter, I could no longer protect her from pain, I couldn't make it all better, I couldn't shield her from this experience...I have never felt so helpless as in that moment when as a mother I had to walk away from my daughter.
Suddenly, amidst the pain and realization that we couldn't be there for her--I heard a still small voice..."But I am"...and I realized that it wasn't my job to protect Ruth or carry her through life....God was there and He would take care of her even when I couldn't.
A Jump into the Unknown
The past three weeks have been a blur under which one passage of Scripture keeps coming back to remind of us God's promises. Here is the backdrop for our story:
The month before Ruth's illness was filled with setbacks, frustrations and hurdles. Our old house was on the market with no buyers in sight meaning we were juggling bills for two houses and problems for two houses. A $400 plumbing back-up in our new house one week and the next week water in the basement of our new house and our old house! The children were struggling with sickness and the typical issues parents deal with. Bills kept coming and money kept going and we struggled to keep everything going....one particularly challenging morning I felt like I just couldn't keep going and a friend of mine shared this passage of Scripture with me:
Psalms 20 "May the LORD answer you when you are in distress;
may the name of the God of Jacob protect you.
2 May he send you help from the sanctuary
and grant you support from Zion.
3 May he remember all your sacrifices
and accept your burnt offerings.
Selah
4 May he give you the desire of your heart
and make all your plans succeed.
5 We will shout for joy when you are victorious
and will lift up our banners in the name of our God.
May the LORD grant all your requests.
6 Now I know that the LORD saves his anointed;
he answers him from his holy heaven
with the saving power of his right hand.
7 Some trust in chariots and some in horses,
but we trust in the name of the LORD our God.
8 They are brought to their knees and fall,
but we rise up and stand firm.
9 O LORD, save the king!
Answer us when we call!
This passage inspired Dave and I...we definitely felt like we needed help and realized that we had been trusting in chariots and in horses instead of truly depending on God for all our needs. We prayed and asked God to take control of our family. We felt some of the stress and burden roll away as we claimed this passage knowing He could meet our needs.
It seems funny now looking back to think how we worried about bills and decisions--how I wish I could go back to that simple life! We had no idea at that time that we were about to enter one of the hardest times of our life as a family and that trusting God is a journey not a destination.
Thank you for supporting us on this journey--prayers, offers of help, gifts, phone calls and cards--all a tangible reminder to us of God's love. My goal with this blog is to share with you as I process and reflect on the lessons we are learning. Thanks for joining me!
The month before Ruth's illness was filled with setbacks, frustrations and hurdles. Our old house was on the market with no buyers in sight meaning we were juggling bills for two houses and problems for two houses. A $400 plumbing back-up in our new house one week and the next week water in the basement of our new house and our old house! The children were struggling with sickness and the typical issues parents deal with. Bills kept coming and money kept going and we struggled to keep everything going....one particularly challenging morning I felt like I just couldn't keep going and a friend of mine shared this passage of Scripture with me:
Psalms 20 "May the LORD answer you when you are in distress;
may the name of the God of Jacob protect you.
2 May he send you help from the sanctuary
and grant you support from Zion.
3 May he remember all your sacrifices
and accept your burnt offerings.
Selah
4 May he give you the desire of your heart
and make all your plans succeed.
5 We will shout for joy when you are victorious
and will lift up our banners in the name of our God.
May the LORD grant all your requests.
6 Now I know that the LORD saves his anointed;
he answers him from his holy heaven
with the saving power of his right hand.
7 Some trust in chariots and some in horses,
but we trust in the name of the LORD our God.
8 They are brought to their knees and fall,
but we rise up and stand firm.
9 O LORD, save the king!
Answer us when we call!
This passage inspired Dave and I...we definitely felt like we needed help and realized that we had been trusting in chariots and in horses instead of truly depending on God for all our needs. We prayed and asked God to take control of our family. We felt some of the stress and burden roll away as we claimed this passage knowing He could meet our needs.
It seems funny now looking back to think how we worried about bills and decisions--how I wish I could go back to that simple life! We had no idea at that time that we were about to enter one of the hardest times of our life as a family and that trusting God is a journey not a destination.
Thank you for supporting us on this journey--prayers, offers of help, gifts, phone calls and cards--all a tangible reminder to us of God's love. My goal with this blog is to share with you as I process and reflect on the lessons we are learning. Thanks for joining me!
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