Well, I'm really tired, but feel like I need to write while things are still fresh on my mind.
JoAnn Ward, a friend from church, was willing to take me to Cleveland Clinic (CC) today since Lowell and my mother-in-law had to work. I went for the echo cardiogram with Dr. Lorber. My appointment was at 9:30am and with traffic and weather we felt we wanted extra time to get there. Neither were an issue and we arrived at CC at 9am to check in. The doctor was with another patient, so we waited. About 9:15, nurse Mary Lou came in and introduced herself. I was a little harsh with describing her from her initial phone call since she really was helpful. I look forward to working with her and figuring all this out. She gave me so much info that was really good news. So, sorry Mary Lou for my bad first impression on the phone... I pretty much associated her with having to admit that this is serious and we are not going to have a normal baby and will need lots of help, including help from Ronald McDonald House whether I want it or not.
One thing she said was that CC will provide me gluten-free, low carb meals for free if I pump and try to nurse while staying there! I thought there was no way I'd be able to nurse with everything going on, but she said they really want Cayla to nurse as much as possible since it will help her so much more. I thought that was great that they actually pushed nursing since it seems so many times formula is just handier and seems to be the norm anymore. So... yay for nursing AND free meals! God is providing!
She also said that Ronald McDonald House (RMH) has a family room on the floor below the PICU where Samuel can come and stay at the hospital with a laptop and do his classes there with me, see Cayla and be part of things if he wants. He would also be able to sleep at RMH too. That was good news since that is the end of the semester with exams and all. Not that he'd need to be there all the time, but could come and stay a couple of days and go home for a couple of days. Very nice. Thanks to RMH.
She also set up some more appointments for me... Cayla's MRI is next Thursday, March 1st. Then we see the genetics counselor at 1pm on March 8th, Dr. Stewart, the pediatric heart surgeon, at 2pm to hear what he thinks about Cayla's condition and what he plans on doing, and then a grand tour of where we'll be in CC. She's going to introduce us to the nurses that will train us on how to care for Cayla when we bring her home. We'll go to the RMH and so on. It's an adventure really.
It wasn't until 10:20 that we were called back. Dr Lorber's "fellow" as they call the doctors that are studying under the specialists, Dr. Rao, spent a good hour trying to get the best pictures of Cayla's heart. She was curled up with her back up not allowing them a chance to see exactly what they wanted. She did move a little and they were able to get a few more pictures. Eventually Dr. Lorber came in and did some looking too. He kept saying things to Dr. Rao like, "I don't know what that is," or "I've never seen anything like that before." I wanted to interrupt and ask if that was a good or bad thing, but didn't want to distract them. After all their talk and pictures, he started trying to explain things to us. Good luck with that. :o) He kept throwing in big medical words and phrases that we couldn't understand. He did draw a picture and explain that Cayla's lower left chamber of her heart was too small to be functional at all. The lower chambers do the pumping. He went through what has to be done to the right side of the heart for it to do all the pumping. I really shouldn't even try to explain what he said, so I won't. I did finally ask him what her prognosis and survival chances were in his opinion at this point. He said that Dr. Stewart is one of the best pediatric heart surgeons in the nation which is a great thing. Yay! He said that the whole cardiology branch at CC is the top in the nation. As a whole, they have a higher survival percentage than anyone else. Dr. Stewart is a big part of that success. Dr. Lorber said that surgery is definitely an option for her and feels that Dr. Stewart can do the surgery needed to get her through the first crucial week. He said her chances for that surgery are around 80%. Then he said the chance of surviving the next 2 surgeries is about 95%. He will still need to know more though. He called that afternoon to tell me that he will send the pictures of her heart to a colleague of his in New York to get his opinion on some things he had never seen. Then he wants me to come back in 2 weeks again and see it all again. (So blessed to have insurance...)
Here's what I want everyone to pray about. Dr. Lorber is one of the 12 cardiologists here. Out of the blue, he made special note to tell me that when I come back in 2 weeks, nothing will have changed, nothing miraculous will have happened to make her heart any different than it is now. I don't know if he saw my "Jesus" necklace or heard us talking about church and such, but I almost felt that he was purposefully saying that miracles do not exist and don't expect one. He reiterated this a couple of times to make a point. I do not know what God's will is with Cayla, but wouldn't it be awesome to have God "change" something in her heart before the next meeting? If it's not what God has planned for her, that's fine, but I can still pray and ask others to pray for Dr. Lorber and Cayla's heart. I just ask to pray for God's will and that it be His will to not even have to heal that lower, left chamber, but just to show some obvious improvement that would make him sit back and be forced to know there is a God. I do want to repeat myself that it's God will above all. He may not choose this right now, but all I could think about as he was repeatedly denying the fact that there is a miracle-working God, was that this man needs to see the hand of God work in an undeniably miraculous way! So, will you pray with me? I see him again on Monday, March 12th at 10:30am. :o) It's in God's hands either way!
So, it's now Saturday night the 25th and I've just typed the last paragraph. I know there's more that was said and done... Let me think. He said they would do her surgery a couple of days after birth to run tests on her and let her catch her breath which will also give me some time to heal and be more ready to be there when she comes out of surgery. She'll have to stay around 2-4 weeks at the hospital, could be more depending on her reaction to surgery. They'll send her home and we'll have to monitor a 100 things while there. She will be brought back between 3-6 months for her 2nd surgery. We do hope that her second operation falls before the end of 2012 so insurance will still cover 100% of it then before it all starts over for 2013.
There's more, I'm sure, to tell, but once again, I'm exhausted and will post more later. God is so good with how He takes care of His children! We are blessed. Thank you Lord! I have a feeling that these next 2 months will actually go faster than a normal pregnancy. Oh and my planned delivery date is April 24th, on Mrs. Emery's birthday! :o) I also must, must say a huge thank you to my mother-in-law for her willingness to drive us to Cleveland for most of these trips. Our one car is barely hanging on, but money to fix it or buy a newer one is too scarce right now. We're not sure how Lowell will make all the trips to CC when she's born either, but so many people have stepped and offered to take us, especially Lowell's mom that right now we can't worry about it. Thanks to her and JoAnn and other's willingness to be a blessing to us! Goodnight!
Saturday, February 25, 2012
Monday, February 20, 2012
The name Cayla Joy
I'm going back and forth around the house trying to avoid the kitchen. I finally baked a loaf of gluten-free bread from scratch and I can't eat it until I take my blood sugar in a half and hour... The smell of fresh baked bread is killing me... I can walk through a bakery filled with gluten and not have a problem, but knowing the smell of fresh baked bread is for me this time... almost impossible to resist. :o) So, to get my mind off the smell, I thought I'd write in my blog. Hope this makes sense since I'm a little distracted at the moment...
I just wanted to write down the pretty simple story of how we came up with the name Cayla Joy. It shouldn't take more than 20 minutes. :o) We had somewhat decided on a boy's name, and no, I'm not saying what it was. When it came to a girl's name, we were kind of stumped. We tried to do family names, but didn't really get too far with that. Lowell kept saying it was a boy anyways, so what did it matter (hee, hee... I think he still owes his brother Cress for a $5 bet that it was a boy... funny). Anyways, the day we had the long, long ultrasound of 90 pictures or so, we found out it was a girl. The ultrasound tech said that it was definitely a girl and not just for lack of boy parts, but she found girl parts... Lowell and Samuel just hung their heads and tried to get pity from the rest of us in the room (all women), which didn't work. So on the way home, when we stopped for a few groceries, I took off getting what I needed and then couldn't find Lowell and Samuel. Eventually I found them in the bakery picking out doughnuts to "console themselves on the loss of their boy". Whatever... I knew he was slightly disappointed, but that he'd be happy either way. So, later that night when I went to bed, there's Lowell lying there with his internet in one hand and paper and pen in the other. He was going through lists of girl names from Celtic, Irish, German, Russian, Hebrew, you name it and writing down any favorites that jumped out at him. His disappointment of it not being a boy apparently didn't last too long... I started going through the list and thought, maybe, no, maybe, what was he thinking, no, maybe, I know people with that name and so on. Well then I saw "Cayla" and thought, Cayla Joy. I think I kind of like that. I told Lowell I liked Cayla and asked him which list it came from. He said he actually liked that one too and that it came from the Hebrew list meaning "Crown of Laurel". I had a friend add on my facebook comment that... "the foliage of the laurel is an emblem of victory or distinction". A wreath of laurel was put around the winner's neck. I kind of liked that and feel it fits this little girl perfectly. The middle name of Joy just came since it's my middle name and seemed to fit well too. :o) So, we thought we should mull it over a day or two to see if that's really the name we wanted. Well, the rest is history.
Thus, the long-winded version of how we picked "Cayla Joy". I did have to stop a few minutes ago and take my blood sugar and get 2 very thin slices of my bread. Oh joy! It was delicious. Didn't want to add anything on it that might ruin it, plus it would have put me over my 30 g. of carbs limit for the evening snack... The sacrifices, Cayla... You just wait until you're here and the doctor takes me off insulin... Actually it's been really good for me, and I do hope that I can carry what I'm learning with this low carb diet with me after the pregnancy. Time will tell. :o) I am back to my starting weight of this pregnancy after losing, gaining, losing and now slowly gaining a little back again despite the diet. Although with the food I'm eating, it's got to be Cayla's weight gain and not mine. So, I'm ready to go read my book and relax a little before bed. Man, I'm already thinking about breakfast and what to have with my slice of bread... Maybe some "dippy" eggs............
I just wanted to write down the pretty simple story of how we came up with the name Cayla Joy. It shouldn't take more than 20 minutes. :o) We had somewhat decided on a boy's name, and no, I'm not saying what it was. When it came to a girl's name, we were kind of stumped. We tried to do family names, but didn't really get too far with that. Lowell kept saying it was a boy anyways, so what did it matter (hee, hee... I think he still owes his brother Cress for a $5 bet that it was a boy... funny). Anyways, the day we had the long, long ultrasound of 90 pictures or so, we found out it was a girl. The ultrasound tech said that it was definitely a girl and not just for lack of boy parts, but she found girl parts... Lowell and Samuel just hung their heads and tried to get pity from the rest of us in the room (all women), which didn't work. So on the way home, when we stopped for a few groceries, I took off getting what I needed and then couldn't find Lowell and Samuel. Eventually I found them in the bakery picking out doughnuts to "console themselves on the loss of their boy". Whatever... I knew he was slightly disappointed, but that he'd be happy either way. So, later that night when I went to bed, there's Lowell lying there with his internet in one hand and paper and pen in the other. He was going through lists of girl names from Celtic, Irish, German, Russian, Hebrew, you name it and writing down any favorites that jumped out at him. His disappointment of it not being a boy apparently didn't last too long... I started going through the list and thought, maybe, no, maybe, what was he thinking, no, maybe, I know people with that name and so on. Well then I saw "Cayla" and thought, Cayla Joy. I think I kind of like that. I told Lowell I liked Cayla and asked him which list it came from. He said he actually liked that one too and that it came from the Hebrew list meaning "Crown of Laurel". I had a friend add on my facebook comment that... "the foliage of the laurel is an emblem of victory or distinction". A wreath of laurel was put around the winner's neck. I kind of liked that and feel it fits this little girl perfectly. The middle name of Joy just came since it's my middle name and seemed to fit well too. :o) So, we thought we should mull it over a day or two to see if that's really the name we wanted. Well, the rest is history.
Thus, the long-winded version of how we picked "Cayla Joy". I did have to stop a few minutes ago and take my blood sugar and get 2 very thin slices of my bread. Oh joy! It was delicious. Didn't want to add anything on it that might ruin it, plus it would have put me over my 30 g. of carbs limit for the evening snack... The sacrifices, Cayla... You just wait until you're here and the doctor takes me off insulin... Actually it's been really good for me, and I do hope that I can carry what I'm learning with this low carb diet with me after the pregnancy. Time will tell. :o) I am back to my starting weight of this pregnancy after losing, gaining, losing and now slowly gaining a little back again despite the diet. Although with the food I'm eating, it's got to be Cayla's weight gain and not mine. So, I'm ready to go read my book and relax a little before bed. Man, I'm already thinking about breakfast and what to have with my slice of bread... Maybe some "dippy" eggs............
Saturday, February 18, 2012
A call from Nurse Mary Lou
It's about 4:45am this "lovely" Saturday morning... and I can't sleep with what I think is the beginning of a cold. I can't breathe laying down, so here I am at the computer in the wee hours of the morning now sneezing and blowing my nose. I see a nap or two in my future... I couldn't write about this phone call last night, since it was still bothering me in some ways, but I guess I'll just write whatever comes out this morning...
I've been feeling good after hearing that Cayla doesn't have chromosome problems. I guess I still needed a reality check though to help me realize that she's still got many hurdles to cross. I answered my phone yesterday around 4:45 and had a very nice lady tell me that she's my... I don't remember exactly what she called herself... my counselor nurse, maybe? She works at the Cleveland Clinic Main Campus (CC) and will be my "go to" person over the next months. She will give me tours of CC and introduce me to all the surgeons, doctors, social workers, genetic counselors, and people from the Ronald McDonald House (RMH). I have to say, when she started talking about the RMH, I was overwhelmed at that thought. It never really hit me before, but I remember over the years, seeing pictures of families there with their sick, recovering children and thinking, how hard that must be. I couldn't imagine what those poor families were having to go through. When she started saying how they would help me, let me sleep there for $20 a night while Cayla's at CC, provide transportation across campus back to the hospital, and all the other things they do... it hit me. We're going to be one of those families. I'm not sure why, but that thought was a huge reality check in itself. I missed part of what she was saying to me because I had to stop and let this sink in.
She went on to say that CC has just finished a brand new pediatric surgery center or something like that. She also said that Cayla Joy will be most likely delivered there with her heart condition. Maybe it was a new SDU, special delivery unit, I'm not sure. I didn't start taking notes until about halfway through the conversation. She was glad to see I have an appointment there next Friday with Dr. Lorber who will do an eco-cardiogram on Cayla's heart. I guess it's a 3-D ultrasound thing that allows them to see the heart and the computer will rotate it, or make it so they can see the heart whether Cayla cooperates or not. Don't quote me on any medical stuff... Anyways, I still see Dr. Rajabi next Wednesday the 22nd at Hillcrest.
Then nurse Mary Lou continued her reality check as she kept pointing out that Cayla's problems could be genetic in nature, meaning that her kidneys and other organs could be affected and they just can't tell right now. She kept telling me worst-case-senarios and making sure that I knew that Cayla's chances are still very uncertain. I had to keep teling her that Dr. Rajabi has done a great job of keeping our feet on the ground and telling us about her future chances and struggles. I kind of wanted her to stop talking... She's a very nice lady, I don't doubt that for a minute, but I think she needed to remember she's talking to a pregnant, hormonal woman who is dealing with all this news from the last 2 weeks with as much grace as possible. I know she will be a great help during these next few months, and I am thankful for her abilities, I'm just telling how I felt after yesterday's talk with her. I still can't believe it was only 2 weeks ago that we found out about all this. What a long time ago...
She did keep asking me how I was feeling and was trying to figure out how I was handling all this. I am thrilled to say that at least 3 times during the conversation, I got to talk about my Rock I'm leaning on, Jesus Christ. I don't know if she wanted to hear about it, but I didn't want to hear all the worst case scenarios either, so we were even. :o) Towards the end of the call, she said, "It sounds like you've got a great faith and support system." I said, "Yes, because I've got a great God that made Cayla and is more involved with her care right now than anyone else!" She has no idea what kind of support system I've got right now... so many wonderful people praying for us! Situations like this just give you a boost towards God becoming more real than ever before.
I guess the Lord felt I needed to remember that just because it's not a chromosome problem, which is huge, it could be many other serious things. I don't want to get comfortable and say that God is going to heal her, or make everything ok, because I don't know that. He could, and we are praying for His healing hand very diligently. But ultimately we just keep praying for God's will to be done and that He receives all the glory for this precious little life He's created!
I've been feeling good after hearing that Cayla doesn't have chromosome problems. I guess I still needed a reality check though to help me realize that she's still got many hurdles to cross. I answered my phone yesterday around 4:45 and had a very nice lady tell me that she's my... I don't remember exactly what she called herself... my counselor nurse, maybe? She works at the Cleveland Clinic Main Campus (CC) and will be my "go to" person over the next months. She will give me tours of CC and introduce me to all the surgeons, doctors, social workers, genetic counselors, and people from the Ronald McDonald House (RMH). I have to say, when she started talking about the RMH, I was overwhelmed at that thought. It never really hit me before, but I remember over the years, seeing pictures of families there with their sick, recovering children and thinking, how hard that must be. I couldn't imagine what those poor families were having to go through. When she started saying how they would help me, let me sleep there for $20 a night while Cayla's at CC, provide transportation across campus back to the hospital, and all the other things they do... it hit me. We're going to be one of those families. I'm not sure why, but that thought was a huge reality check in itself. I missed part of what she was saying to me because I had to stop and let this sink in.
She went on to say that CC has just finished a brand new pediatric surgery center or something like that. She also said that Cayla Joy will be most likely delivered there with her heart condition. Maybe it was a new SDU, special delivery unit, I'm not sure. I didn't start taking notes until about halfway through the conversation. She was glad to see I have an appointment there next Friday with Dr. Lorber who will do an eco-cardiogram on Cayla's heart. I guess it's a 3-D ultrasound thing that allows them to see the heart and the computer will rotate it, or make it so they can see the heart whether Cayla cooperates or not. Don't quote me on any medical stuff... Anyways, I still see Dr. Rajabi next Wednesday the 22nd at Hillcrest.
Then nurse Mary Lou continued her reality check as she kept pointing out that Cayla's problems could be genetic in nature, meaning that her kidneys and other organs could be affected and they just can't tell right now. She kept telling me worst-case-senarios and making sure that I knew that Cayla's chances are still very uncertain. I had to keep teling her that Dr. Rajabi has done a great job of keeping our feet on the ground and telling us about her future chances and struggles. I kind of wanted her to stop talking... She's a very nice lady, I don't doubt that for a minute, but I think she needed to remember she's talking to a pregnant, hormonal woman who is dealing with all this news from the last 2 weeks with as much grace as possible. I know she will be a great help during these next few months, and I am thankful for her abilities, I'm just telling how I felt after yesterday's talk with her. I still can't believe it was only 2 weeks ago that we found out about all this. What a long time ago...
She did keep asking me how I was feeling and was trying to figure out how I was handling all this. I am thrilled to say that at least 3 times during the conversation, I got to talk about my Rock I'm leaning on, Jesus Christ. I don't know if she wanted to hear about it, but I didn't want to hear all the worst case scenarios either, so we were even. :o) Towards the end of the call, she said, "It sounds like you've got a great faith and support system." I said, "Yes, because I've got a great God that made Cayla and is more involved with her care right now than anyone else!" She has no idea what kind of support system I've got right now... so many wonderful people praying for us! Situations like this just give you a boost towards God becoming more real than ever before.
I guess the Lord felt I needed to remember that just because it's not a chromosome problem, which is huge, it could be many other serious things. I don't want to get comfortable and say that God is going to heal her, or make everything ok, because I don't know that. He could, and we are praying for His healing hand very diligently. But ultimately we just keep praying for God's will to be done and that He receives all the glory for this precious little life He's created!
Thursday, February 16, 2012
Cayla's chromosomes are normal!!
Rejoice in the Lord alway: and again I say, Rejoice.
Let your moderation be known unto all men. The Lord is at hand.
Be careful for nothing; but in everything by prayer and supplication
with thanksgiving let your requests be made known unto God.
And the peace of God, which passeth all understanding,
shall keep your hearts and minds through Christ Jesus.
Philippians 4:4-7
It took me about 30-45 minutes to stop and let this news sink in. The nurse from Hillcrest called me tonight about 5pm and said, "I have the chromosome test results for you." I kind of froze and waited and then realized she was waiting for me to respond. When she said her tests showed normal chromosome levels, my heart felt like it stopped and I wasn't quite sure how to respond to her on the phone. I sat up, and tried to catch the rest of the conversation and realized she was going on and explaining the next steps to me. So, I went into a whole different mode and didn't give myself a chance to process the news. There are some tests that they want to do that will help them determine the extent of the damage in the left side of her heart. I listened as she went on about these tests, and then she switched gears and started talking about the gestational diabetes and the chart I sent her. She hadn't been able to catch the doctor since he's not been in the office, but would call me as soon as she saw him. Then she started talking about the Celiac disease and my carbs and blah, blah, blah. I was really trying to listen, something about getting their dietitian to help me find good carb, gluten-free substitutes and so on. Samuel walked by and I mouthed the words, "It's not a chromosome problem!" He stopped and did a jig and then asked if he could call dad. So while he's calling and all this is going on, the nurse is still talking. Too hard to focus. She told me to talk to my husband and call me in the morning. Uhh, what was I supposed to talk to him about... it was the testing and all. So, I said I'd do that. I didn't know which end was up at that point. I went to the kitchen and turned all the burners down so things wouldn't burn while I was focused on other things. I had just sat down and was trying to think through everything that had just happened in the last 5 minutes.
The phone rang again, it had only been about 10 minutes and it was the nurse again. She was excited because Dr. Rajabi had just come through the office after being at other hospitals all day, and he was able to see all my charts, paperwork, and results since she'd just had it all out talking to me! I love God's timing! She said that he wanted me to up my insulin a little, get with a dietitian to help me work through the carbs choices with Celiac, and he wants a test done before he sees me next Wednesday. I don't recall what she said the test was, but right now, I'll do whatever he says to do. She will call me in the morning to see what is available tomorrow since everyone had gone for the day.
I got off the phone with her, turned to Lowell, who was now home, and just hugged him. I still hadn't cried or anything. Got dinner ready while I called Marla, my sister-in-law, and then shot myself with insulin. I talked to my dad while I ate. It wasn't until I sat down again at the computer to write a quick update on facebook, that the tears kicked in. Lowell came around the corner at just the right time and held me while the dam broke. I was finally able to let my emotions of relief out. He prayed for Cayla as I cried which I think kept the tears coming. Samuel came in and we had a "group hug". :o) Lowell was teasing him that we used to do this and get hugged around the knees from Samuel, but now they're both hugging my head instead. We had a laugh, and I felt better than I'd felt in a long time. I was going to make some more family calls, but Lowell said we needed to do some grocery shopping. My evening has turned out well. I am sitting here resting, about to fall asleep, even though some more calls need to be made. So, this has all been written for me to just get it all out there.
Now, a brief version of what all this means. Cayla's chances of survival just went from 0-50%. I'll take it. Of course, this is just as it stands at the moment through the eyes of the doctors. When you add God into the equation, there is no percentage, it's just His ultimate will that will be done. I will have to go in and have different tests done so they can get as much info on her heart as possible before delivery. This is a syndrome and not a disease. He said the difference is that a syndrome involves many possible levels of outcome which means that there is no set problem and solution. It is very different in every individual. I said in an earlier post that there are 5 parts of her left heart that could all be at different levels of development or lack of development. It's Dr. Rajabi's job to help prepare the surgeons by gathering as much info as possible before she's born. He said they need as clear a plan as possible of where they're headed when she's born since things could turn out differently then. They will need to keep the valve on the right heart open for her 1st surgery. That I think is done right away by medication the first week since the valve closes within a week or so.
I'm sure there's more to be said, but it will have to wait for now. I'm feeling tired, but joyful. Cayla Joy is one active little girl. I don't remember Samuel moving around this much at all, of course that was 17 years ago and with my memory... I love it though! She's waking me up at night with some well places stretches and kicks, but more power to her! I love her, I love my family, I love my God, and I love all the prayers that are being sent to the throne room of God on our behalf! I love the friends that are so encouraging and praying too! Thanks! I wouldn't be able to go through this without God and all the prayers!
Rejoice in the Lord alway: and again I say, Rejoice.
Let your moderation be known unto all men. The Lord is at hand.
Be careful for nothing; but in everything by prayer and supplication
with thanksgiving let your requests be made known unto God.
And the peace of God, which passeth all understanding,
shall keep your hearts and minds through Christ Jesus.
Philippians 4:4-7
Wednesday, February 15, 2012
Like a River Glorious
We sang this hymn Sunday morning in church. When I play the piano, I can't help but study and follow the words of the beautiful hymns that are sung so I can pass on the meaning, emphasis and feeling of it through the music to the congregation. I've always loved this hymn, but, wow, did it's message just flow through me in a whole different way (no pun intended...). I had to keep moving through the service, and didn't get another chance to go back to it until now. It all came back. I just have to write out the words today in my blog, it is where I'm at. It is where God is taking me. It describes how I feel exactly. No matter where God takes us on this journey with our precious Cayla Joy, I want this incredible peace to be part of who I am in Christ through it all.
Thank you to Frances R. Havergal for writing these words. She was only a year older than me when she died. I don't remember her story, I'll have to look it up, but such inspiring words could only be written by someone who had been through some deep, rough times herself. Try to read it as if it's the first time you've read it. Enjoy...
Like a river glorious is God's perfect peace,
Over all victorious in its bright increase;
Perfect, yet it floweth fuller every day,
Perfect, yet it groweth deeper all the way.
Stayed upon Jehovah, hearts are fully blest;
Finding as He promised, perfect peace and rest.
Hidden in the hollow of His blessed hand,
Never foe can follow, never traitor stand;
Not a surge of worry, not a shade of care,
Not a blast of hurry touch the spirit there.
Stayed upon Jehovah, hearts are fully blest;
Finding as He promised, perfect peace and rest.
Every joy or trial falleth from above,
Traced upon our dial by the Sun of Love;
We may trust Him fully, all for us to do;
They who trust Him wholly find Him wholly true.
Stayed upon Jehovah, hearts are fully blest;
Finding as He promised, perfect peace and rest.
Thank you to Frances R. Havergal for writing these words. She was only a year older than me when she died. I don't remember her story, I'll have to look it up, but such inspiring words could only be written by someone who had been through some deep, rough times herself. Try to read it as if it's the first time you've read it. Enjoy...
Like a river glorious is God's perfect peace,
Over all victorious in its bright increase;
Perfect, yet it floweth fuller every day,
Perfect, yet it groweth deeper all the way.
Stayed upon Jehovah, hearts are fully blest;
Finding as He promised, perfect peace and rest.
Hidden in the hollow of His blessed hand,
Never foe can follow, never traitor stand;
Not a surge of worry, not a shade of care,
Not a blast of hurry touch the spirit there.
Stayed upon Jehovah, hearts are fully blest;
Finding as He promised, perfect peace and rest.
Every joy or trial falleth from above,
Traced upon our dial by the Sun of Love;
We may trust Him fully, all for us to do;
They who trust Him wholly find Him wholly true.
Stayed upon Jehovah, hearts are fully blest;
Finding as He promised, perfect peace and rest.
Beautiful description of raising a child with a disability
This is a beautiful word picture a friend sent me of a mother's outlook on raising a child with a disability. I don't know what our future holds, but if this is what is in our future, I trust God for the ability to handle every situation that will arise.
"I am often asked to describe the experience of raising a child with a disability
- to try to help people who have not shared that unique experience to understand
it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip -
to Italy. You buy a bunch of guide books and make your wonderful plans. The
coliseum. The Michelangelo David. The gondolas in Venice. You may learn some
handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags
and off you go. Several hours later, the plane lands. The stewardess comes in
and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm
supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and
there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence, famine and disease. It's just a different
place.
So you must go and buy new guide books. And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there for a while and you catch your breath, you
look around…and you begin to notice that Holland has windmills...Holland has
tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all
bragging about what a wonderful time they had there. And for the rest of your
life, you will say "Yes that's where I was supposed to go. That's what I had
planned".
And the pain of that will never, ever, ever, ever go away...because the loss of
that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you
may never be free to enjoy the very special, the very lovely things...about
Holland."
© 1987, by Emily Perl Kingsley. All rights reserved.
"I am often asked to describe the experience of raising a child with a disability
- to try to help people who have not shared that unique experience to understand
it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip -
to Italy. You buy a bunch of guide books and make your wonderful plans. The
coliseum. The Michelangelo David. The gondolas in Venice. You may learn some
handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags
and off you go. Several hours later, the plane lands. The stewardess comes in
and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm
supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and
there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence, famine and disease. It's just a different
place.
So you must go and buy new guide books. And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there for a while and you catch your breath, you
look around…and you begin to notice that Holland has windmills...Holland has
tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all
bragging about what a wonderful time they had there. And for the rest of your
life, you will say "Yes that's where I was supposed to go. That's what I had
planned".
And the pain of that will never, ever, ever, ever go away...because the loss of
that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you
may never be free to enjoy the very special, the very lovely things...about
Holland."
© 1987, by Emily Perl Kingsley. All rights reserved.
Tuesday, February 14, 2012
A special group of people
Just have to put out a big Thank You to the Ashtabula County Concerts of Prayer Board! During the last month, I have felt so overwhelmed at times with organizing this year's county-wide Prayer Walk. Then with all that's happening with the pregnancy, I haven't been able to follow through on certain things I've wanted and needed to do. This morning was a super example of God's love from you all to me. I do not want to step down from this position, but knowing that you all will fill in the gap and make this Prayer Walk a success for the glory of God has given me such peace. I love working with you all and will continue to the best of my ability during the next few months to do whatever I can.
Then the peace I had as this special group of Pastors and prayer warriors put their hands on me and prayed for me and my precious Cayla Joy, was wonderful! God is in control of my life and Cayla's. What a great testimony of God's people pouring their hearts out for one another! I am truly blessed! Thanks to each one for your prayers and support!
Then the peace I had as this special group of Pastors and prayer warriors put their hands on me and prayed for me and my precious Cayla Joy, was wonderful! God is in control of my life and Cayla's. What a great testimony of God's people pouring their hearts out for one another! I am truly blessed! Thanks to each one for your prayers and support!
Sunday, February 12, 2012
Elise
You know, I have to bring this special little girl, Elise, into my blog. God gives us what we need when we need it, not before.
I have made no secret that, for a lack of a better way to say it, I am not a baby person. Although I love children and have always wanted a bunch, which is different since they don't all come at once like you have in a nursery... (most of the time), I have never volunteered to work in the nursery at church in my life. When we had Samuel, all the parents had to take turns in the nursery and I had no choice, but Lowell had to do it with me which made it easier for some reason. I love babies, don't get me wrong, I just don't enjoy a setting like a nursery where there are multiple babies all needing attention now. Not my cup of tea. Give me my fifth, sixth, or seventh graders ANY day, they're more my speed. They fuss too, but you know exactly what they want. :P I remember my first year teaching, I got a lovely kindergarten class and about went crazy even with that age. I remember begging God to open up other positions, and He did with 5th and 6th graders after that. Yay! I have never babysat for anyone as an adult on a regular basis and only have babysat a handful of times for a friend here or there.
I say all that to say this... A sweet young couple at church asked me to babysit their little Elise this semester while mom's getting her nursing degree. So, I thought, I'm staying home now, she will break us back into the feeling of what it will be like having a baby in the house, it would be a little extra money, and it would help them, so I said sure. It was only for 2 days a week. She was about 10 months old when we started. Could not tell you the last time I changed a diaper. Too be completely honest, I was a little nervous. Samuel's not had much interaction with babies either, but I thought this would be great for him too.
Well, the first day Elise arrived, Jan. 10th, we only had her an hour, but that's all it took. Samuel and I were under her spell and wrapped completely around her little finger from that day on. Her bright smile and laugh are so sweet! She's so good and easily amused which is good since I don't have a lot of things for a baby to do around here. At one point, I was sitting on the floor with her in my lap, and Samuel walked by. He stopped, looked at me, looked at Elise, looked back at me and then her again. I said, "Just think! This will be us a year from now!" We both laughed and shook our heads at the crazy reality of this! I remember asking him to pick her up for me, and he looked at me and said, "How?" After I had my chuckle, I told him to just put his hands under her arms and lift her up. So he did and they ended up face to face about 3 inches apart and he said, "What do I do now?" After another chuckle, I told him just to say something to her and talk to her. On occasion now, I have to tell him to get back to his school work. But all she has to do is flash that million dollar smile and how can you resist??? There was one day after we had the news about Cayla and her uncertain future, that Elise was sound asleep on the couch with her hands above her head looking like she was being arrested, and I caught Samuel watching her. I said, "She's sweet, isn't she?" and he looked a little emotional and said something to the effect of, "Yeah, I'm just praying I get to see Cayla laying there someday." I shed a few tears then, and I am shedding a few now as I type. I am just so thankful that God saw fit to bring Elise into our lives at this moment when we really seem to need this little presence more than we realize.
I know I've kind of gone on and on, but I remember thinking at the time that I hope I don't forget these little things that were said and feelings that we've had. So, now that I've started the blog, I have to write them down. Having a baby in the house after all these years, has been a great preparation for our future - to kind of get me back in the swing of things. I know I call her a baby even though she's about to turn one now, which I guess makes her not quite in the baby category anymore, but she's still been a huge blessing to us at this perfect time when God knew we needed her. Thanks to her mom and dad for entrusting her to us! And thanks to God for providing for our needs, even emotional ones. Love you Elise!
I have made no secret that, for a lack of a better way to say it, I am not a baby person. Although I love children and have always wanted a bunch, which is different since they don't all come at once like you have in a nursery... (most of the time), I have never volunteered to work in the nursery at church in my life. When we had Samuel, all the parents had to take turns in the nursery and I had no choice, but Lowell had to do it with me which made it easier for some reason. I love babies, don't get me wrong, I just don't enjoy a setting like a nursery where there are multiple babies all needing attention now. Not my cup of tea. Give me my fifth, sixth, or seventh graders ANY day, they're more my speed. They fuss too, but you know exactly what they want. :P I remember my first year teaching, I got a lovely kindergarten class and about went crazy even with that age. I remember begging God to open up other positions, and He did with 5th and 6th graders after that. Yay! I have never babysat for anyone as an adult on a regular basis and only have babysat a handful of times for a friend here or there.
I say all that to say this... A sweet young couple at church asked me to babysit their little Elise this semester while mom's getting her nursing degree. So, I thought, I'm staying home now, she will break us back into the feeling of what it will be like having a baby in the house, it would be a little extra money, and it would help them, so I said sure. It was only for 2 days a week. She was about 10 months old when we started. Could not tell you the last time I changed a diaper. Too be completely honest, I was a little nervous. Samuel's not had much interaction with babies either, but I thought this would be great for him too.
Well, the first day Elise arrived, Jan. 10th, we only had her an hour, but that's all it took. Samuel and I were under her spell and wrapped completely around her little finger from that day on. Her bright smile and laugh are so sweet! She's so good and easily amused which is good since I don't have a lot of things for a baby to do around here. At one point, I was sitting on the floor with her in my lap, and Samuel walked by. He stopped, looked at me, looked at Elise, looked back at me and then her again. I said, "Just think! This will be us a year from now!" We both laughed and shook our heads at the crazy reality of this! I remember asking him to pick her up for me, and he looked at me and said, "How?" After I had my chuckle, I told him to just put his hands under her arms and lift her up. So he did and they ended up face to face about 3 inches apart and he said, "What do I do now?" After another chuckle, I told him just to say something to her and talk to her. On occasion now, I have to tell him to get back to his school work. But all she has to do is flash that million dollar smile and how can you resist??? There was one day after we had the news about Cayla and her uncertain future, that Elise was sound asleep on the couch with her hands above her head looking like she was being arrested, and I caught Samuel watching her. I said, "She's sweet, isn't she?" and he looked a little emotional and said something to the effect of, "Yeah, I'm just praying I get to see Cayla laying there someday." I shed a few tears then, and I am shedding a few now as I type. I am just so thankful that God saw fit to bring Elise into our lives at this moment when we really seem to need this little presence more than we realize.
I know I've kind of gone on and on, but I remember thinking at the time that I hope I don't forget these little things that were said and feelings that we've had. So, now that I've started the blog, I have to write them down. Having a baby in the house after all these years, has been a great preparation for our future - to kind of get me back in the swing of things. I know I call her a baby even though she's about to turn one now, which I guess makes her not quite in the baby category anymore, but she's still been a huge blessing to us at this perfect time when God knew we needed her. Thanks to her mom and dad for entrusting her to us! And thanks to God for providing for our needs, even emotional ones. Love you Elise!
Saturday, February 11, 2012
Insulin, Needles, Lowell and Blueberry Tea
I woke up around 6am this Saturday morning feeling like I can't sleep in since I have so many time slots to schedule in my day... Eating 5 time slots, Insulin 2 time slots, and blood sugar testing 4 time slots. Looking at my first full day of this, I felt a little nervous. Then my mind went to the 200 other things I should get done and I started crying. My husband. He has been so good through this. I think I was tossing and turning and must have woke him up, but he just held me close and let me cry and then talked me through my day and all the pressures I feel from other commitments. He said he feels helpless in this whole situation. That came as a shock to me, but I can understand what he's feeling. He is anything but helpless! He has been so wonderful to me when I've needed him the most. He's massaged my calf muscles when they cramp up, he's been running around getting things for me, he's just held me close and let me cry healing tears, he's prayed with me and helped me turn all this over to God, he's kept up with Samuel's school work when I've not been able to, he's not minced words with me when I've needed to hear them, he's working all day providing for me so I could be home right now and not working, he bought me blueberry, gluten-free muffins by Udi's (way too expensive, but oh, so, so good), he's loved me unconditionally and been my biggest support through everything. I love him more every day and thank God for him.
I can face my day with 6 needles and carb counting thanks to my wonderful Lord and Savior. I must add that with my husband's encouragement and 3 cups of hot blueberry tea, maybe 4 by the time I'm done, (0 carbs) :o) my day is looking good! Plus, the snow outside is just icing on the cake this morning!
I can face my day with 6 needles and carb counting thanks to my wonderful Lord and Savior. I must add that with my husband's encouragement and 3 cups of hot blueberry tea, maybe 4 by the time I'm done, (0 carbs) :o) my day is looking good! Plus, the snow outside is just icing on the cake this morning!
Friday, February 10, 2012
$400 or so worth of diabetes "stuff" for $40
It's been a long day. Looking forward to going to bed early. I first HAVE to share what God did today! Such an awesome God we serve! I went to my appointment with the diabetes nurse/dietitian. It was a 2 and 1/2 hour long appointment. She was so sweet, patient, informative and giving. She went over the whole gestational diabetes info with me. She went through the whole process of using the machine to test my blood sugar level. Then she offered me any machine for free of the 8 samples she had on the table. I told her I didn't know one from the other, so she grabbed what looked like the most expensive one there with a USB port and all and told me she'd go get me a new one in a box. She said she chose this one because she had the most strips for that one available to give me free. All the other ones she just had a couple of packs of 10 strips to offer, but this one she had 2 bottles left, one with 50 and one with 25 and gave all 75 to me free. All the strips for the machines she had cost $1.00 each. I will be using minimum 4 a day and some days more! That alone is $75 worth! The machine was around $50 too. Then she came back in the room with 2 boxes of syringes that each had 100 syringes in them and said, "They're yours too!" She was having as much fun giving me all this as I was receiving it! She threw in a wad of alcohol swabs too. Oh, and she added a Getting Started Take Home Kit full of supplies too! I sat there wanting to cry but was too excited, although I do think a tear managed it's way out. I was overwhelmed. I honestly don't have a clue how to even really put a price on all she gave me, but I feel blessed! Maybe she gets to do this with every patient, but I felt like God was right there with me jumping up down with excitement and joy having fun blessing His child! Such an overwhelmingly amazing feeling!
Well, then the fun really began as she went meticulously through the whole process of shooting myself with a needle... Not the easiest thing for me to do, but she had me actually inject saline solution into my abdomen to practice. Bleh. But I really appreciated her thoroughness and great help! I had no problem (took me a while) but was able to mix the N and the R into one syringe and do it fine at home my first time. So I think she's a very good teacher to make me get it on my own right away!
After all this, we still had to talk about my meal plans. (boo, hiss) Ok, so it's not as bad as I imagined. It's not a no sugar diet, but just a low carb diet. She worked with me on substitutions with gluten free foods...and I CAN make my bread and treat it as a slice of whole wheat since there is enough fibrous flours in it. :o) Let's just say that made me happy. I left there feeling like I can do this with God's help and even gave her a hug and thanked her for everything!
What all this meant is that when I went to the Pharmacy, all I needed to get was the actual insulin. Of course, the price she said to me was $217.00 for it, which made my mouth hang open, but then she said, "Oh, that's not been adjusted with your insurance. Hold on while we check on this." So I waited and the other lady told me that will be $50 instead, $25 for each bottle. Yay! So she went to run my credit card and I noticed it was only for $40 and asked her if this was a mistake. She re-checked it and said, no I guess it's only $20 a bottle. Big smile... SO... I just had to share how God gave us so, so much today for a grand total of $40!!! I just love that! Jehovah Jireh, my Provider!!
Now, I just need to sit down and figure everything out and get all my ducks in a row... Kinda hard right now since I'm feeling a little scatter-brained, sore and tired. But, I surely cannot complain after all God has done! To God be the glory!
Well, then the fun really began as she went meticulously through the whole process of shooting myself with a needle... Not the easiest thing for me to do, but she had me actually inject saline solution into my abdomen to practice. Bleh. But I really appreciated her thoroughness and great help! I had no problem (took me a while) but was able to mix the N and the R into one syringe and do it fine at home my first time. So I think she's a very good teacher to make me get it on my own right away!
After all this, we still had to talk about my meal plans. (boo, hiss) Ok, so it's not as bad as I imagined. It's not a no sugar diet, but just a low carb diet. She worked with me on substitutions with gluten free foods...and I CAN make my bread and treat it as a slice of whole wheat since there is enough fibrous flours in it. :o) Let's just say that made me happy. I left there feeling like I can do this with God's help and even gave her a hug and thanked her for everything!
What all this meant is that when I went to the Pharmacy, all I needed to get was the actual insulin. Of course, the price she said to me was $217.00 for it, which made my mouth hang open, but then she said, "Oh, that's not been adjusted with your insurance. Hold on while we check on this." So I waited and the other lady told me that will be $50 instead, $25 for each bottle. Yay! So she went to run my credit card and I noticed it was only for $40 and asked her if this was a mistake. She re-checked it and said, no I guess it's only $20 a bottle. Big smile... SO... I just had to share how God gave us so, so much today for a grand total of $40!!! I just love that! Jehovah Jireh, my Provider!!
Now, I just need to sit down and figure everything out and get all my ducks in a row... Kinda hard right now since I'm feeling a little scatter-brained, sore and tired. But, I surely cannot complain after all God has done! To God be the glory!
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