Finding our way through our families "normal" life of illness and special needs children.
Thursday, June 13, 2013
Look For Your Invitation, My Inspiration to cook
I am enjoying my time down. O K, I am really trying to. When I am healthy I do a lot. I had to stop looking at Pinterest. It can be depressing when you are a doer and all your allowed to do is sit on the couch. I have made quite the progress on the kids quilts and read some good books. My favorite, Bread and Wine by Shawna Niequist is a great book about gathering around the table with friends and family. Just to let you know I am planning on having dinner parties as soon as I am able. I can tell you the company will be wonderful but can't say the same about the food. I'm not saying I am a bad cook. I worked at a catering company and picked up a few lessons from the chefs. Unfortunately after my last flare I had memory loss and it seems it wiped out my cooking skills. Or possibly they were bad to start with and my family is really nice. Part of it comes from growing up Italian in Southern California, I can make a mean pizza (not frozen) and my pasta is perfect, always al dente. Our family has a standing Taco Tuesday and Pizza Friday. I do enjoy baking and have made progress in that area. My progress is due to some excellent recipes I've been given by friends. Usually after Jim has eaten the majority of cookies at any function we attend, I know I need to ask for the recipe.
So I guess what it comes down to is I don't have the right recipes. I know the techniques, just not the ingredients. I started figuring this out early in my marriage. I really don't know how to cook traditional "Midwest" food. Jim wanted to have beef and noodles, I asked how to make it, he laughed and said beef and noodles. I also asked how to make pot roast.
One of the benefits of being down for 6 weeks is all the meals our friends have blessed us with. My family has noticed how wonderful these meals are. Not just because they taste so delicious, but we can feel God's love through their service. These meals have also inspired me to read more cookbooks and use my Allrecipes App more often. I am planning menus for those dinner parties, I'll try a new recipe every week, and its never to late to learn to cook. I promise I will test it out on my family first. They tend to be brutally honest when it comes to my cooking adventures. Look for your invitation, I promise you'll have a good time and we always have frozen pizza as a back up.
Sunday, May 26, 2013
My Slice of Humble Pie
We are rejoicing in The Lord, non cancerous calcifications! I do have what is believed to be abnormal cells. Of coarse, I have abnormal cells. My life wouldn't be normal without them. So now we wait for the University of Michigan's opinion. If they also find me abnormal I get to go in for a lumpectomy.
The phone rings. I get the results. Benign. We post all clear. We release the breath we didn't know we were holding.
The phone rings.
Can you come in tomorrow to see the surgeon?
You already called, everything's fine.
Well the surgeon has the report, he'd like to discuss it.
Ok?!? NO!! NO!! NO!!
He tells me my cells are borderline atypical. Not normal. Borderline, sounds familiar. At 15 I was told I had borderline Lupus, two years later I had Lupus nephritis (kidney disease). Not borderline Lupus anymore. To tell if more cells are atypical a large tissue sample needs to be taken or I can wait to see if it changes. I tell him no. It just comes out, without thinking. I'm tired. I can't. I'm done. I have been having problems with my reproductive organs. They're scheduled to come out. I have put it off twice for my breast biopsy. I can't take the pain anymore. I want it fixed. So I say no. I ask my doctor to remove my ovaries. She asks why. I may have the BRCA 1 gene. I was advised to remove them at 32, to lessen my risk. I thought it was silly. Not so silly now. My surgery is done. My ovaries were enlarged, they need to be biopsied. Now we wait.
I am in a be patient and wait on The Lord mode. I realize this should be my mode at all times. Do I really know what is around the corner? I think I should know how to fix control, solve control, and answer control all my problems. They're mine. I should have control. I said it. I don't really want to have patience. I want control. It turns out I need to be patient and wait on the Lord to answer, lead, and guide me. My health, marriage, children, friendships, all these could benefit. If I just stop trying to fix, solve, answer all my problems on my own. How many times has God shown me I don't have to endure alone? Plenty. Unfortunately I battle a giant monster called pride. I know the solution to pride. Humility. I've had a few tastes of humble pie. Nothing says We'll be ok, we don't need your help like losing the feeling and muscle control from the neck down. Learning to walk again with a walker. Humble pie. Coming home from the hospital to find your home cleaned and laundry done. The laundry you couldn't do because you couldn't raise your arms. Humble pie.
This time I have said yes. Prepare our meals, do our laundry, clean our house, drive our kids, pray for us. Yes, I will let people in. Allow others to serve us, to encourage us, to be the hands and feet of Jesus. Now I can rest. Rest in the arms of a God who has blessed me with friends and family who have asked to serve us, has a plan to carry me through the waiting of gene testing and biopsy results, and will walk along side me as I face new trials. I will rest, wait, and enjoy my slice of humble pie which is teaching me to allow others to serve me with grace.
Monday, April 29, 2013
I breathe deeply.
My forehead is red. Waiting for the mark to go away. I found myself in the most awkward position. IV in, face down, arms behind my back. Take a deep breathe. A new test. A new day. A new normal. I should be recovering from a partial hysterectomy. Instead I am waiting for a full hysterectomy and going through test after test. Laughingly, I tell the technician, I've been through a lot of tests but nothing like this.
I am thankful God's timing is perfect. Since my partial hysterectomy was cancelled I decided to have my yearly mammogram. It was supposed to be routine. The next day the call came. I pray. I breathe. We are used to those calls. We need you to come back. Something abnormal found. We take another picture. The next day the call came again. We need to biopsy. MRI scan to check for more clusters. Is this a dream? I have lupus. I can't be suspected of having Breast Cancer too. Our new normal has begun. They review my history, I have too much risk. So today I find myself in the MRI machine. In an awkward position, trying to slow my breath with prayer, searching my mind for every calming verse His word has spoken to me.... I fear.... How can this be? It has to be a mistake.... I remember who is in control. Who loves me. Who never forsakes. Who asks to carry my burdens. I breathe deeply. His peace fills my lungs.
I have heard all about you, Lord. I am filled with awe by your amazing works. In this time of need, help us again as you did in years gone by... Habakkuk 3:2
I am thankful God's timing is perfect. Since my partial hysterectomy was cancelled I decided to have my yearly mammogram. It was supposed to be routine. The next day the call came. I pray. I breathe. We are used to those calls. We need you to come back. Something abnormal found. We take another picture. The next day the call came again. We need to biopsy. MRI scan to check for more clusters. Is this a dream? I have lupus. I can't be suspected of having Breast Cancer too. Our new normal has begun. They review my history, I have too much risk. So today I find myself in the MRI machine. In an awkward position, trying to slow my breath with prayer, searching my mind for every calming verse His word has spoken to me.... I fear.... How can this be? It has to be a mistake.... I remember who is in control. Who loves me. Who never forsakes. Who asks to carry my burdens. I breathe deeply. His peace fills my lungs.
I have heard all about you, Lord. I am filled with awe by your amazing works. In this time of need, help us again as you did in years gone by... Habakkuk 3:2
Thursday, April 11, 2013
Beautiful Creation
On our flight home from California we flew over the Grand Canyon. Pictures and movies can not do it justice. I can't begin to imagine the wondrous beauty it would be to behold from the ground! It amazed me, the vastness, the time it took to be created, and is taking to be created. Millimeter by millimeter it is being carved out. Only God knows how deep and wide he has visioned it to be or which minuet piece of sand and rock will flow through to bring it to completion.
I realized we are similar to the Grand Canyon process. I too am being shaped. By the friends and family I have, my struggles with my Lupus, the consequences of my sins, the lessons I learn every day, each one is a minuet piece of sand and rock shaping me. God is slowly carving me into who I am meant to be. He is the Living water to bring all the rocks of hurt, disappointment, and sin in our fallen world into something beautiful. I am one of God's beautiful creations. How often do we think of ourselves as a beautiful creation? We were created by God to be his beautiful creation. But we have damaged his creation through our sin. He so eagerly wants to restore us to the beautiful creation he has visioned for us. If we stand firm and allow him to shape us with the freeing grace found through Christ and follow him in obedience we will become the beautiful creation he has visioned us to be. Even more wonderful than the Grand Canyon.
Whoever believes in me, as Scripture has said, rivers of living water will flow from within them.” (John 7:38 NIV)
You answer us with awesome and righteous deeds, God our Savior, the hope of all the ends of the earth and of the farthest seas, who formed the mountains by your power, having armed yourself with strength, who stilled the roaring of the seas, the roaring of their waves, and the turmoil of the nations.
The whole earth is filled with awe at your wonders; where morning dawns, where evening fades, you call forth songs of joy. (Psalm 65:5-8 NIV)
I realized we are similar to the Grand Canyon process. I too am being shaped. By the friends and family I have, my struggles with my Lupus, the consequences of my sins, the lessons I learn every day, each one is a minuet piece of sand and rock shaping me. God is slowly carving me into who I am meant to be. He is the Living water to bring all the rocks of hurt, disappointment, and sin in our fallen world into something beautiful. I am one of God's beautiful creations. How often do we think of ourselves as a beautiful creation? We were created by God to be his beautiful creation. But we have damaged his creation through our sin. He so eagerly wants to restore us to the beautiful creation he has visioned for us. If we stand firm and allow him to shape us with the freeing grace found through Christ and follow him in obedience we will become the beautiful creation he has visioned us to be. Even more wonderful than the Grand Canyon.
Whoever believes in me, as Scripture has said, rivers of living water will flow from within them.” (John 7:38 NIV)
You answer us with awesome and righteous deeds, God our Savior, the hope of all the ends of the earth and of the farthest seas, who formed the mountains by your power, having armed yourself with strength, who stilled the roaring of the seas, the roaring of their waves, and the turmoil of the nations.
The whole earth is filled with awe at your wonders; where morning dawns, where evening fades, you call forth songs of joy. (Psalm 65:5-8 NIV)
Monday, March 18, 2013
Too Much To Do or Maybe Not
We are going to California this weekend. I am so excited! Probably driving my family crazy. This will be the first visit the kids will remember. I am so excited, really, really, excited! I have it all planned out. I have looked at the maps, [I think I have the freeways memorized, and I can say freeway without being made fun of while we're there because that is what we Californians call the highways] calculated gas milage, food budget, and planned where we will go. I am so excited!
We are as prepared as can be for the whole TSA thing. We had trouble the last time because of my sunblock, it contains metals and banned ingredients. I think we will just buy some there. But now we are in a whole new situation with Sunny. Although they do approve her to carry on all her supplies, she will need to be personally searched according to their website. Our plan is to arrive early and be patient.
And now let the resting begin. I know it is what I need to do, but it's not what I want to do. There is packing and preparing for our home visit. Oh, did I mention that we have our home visit the week we return. The last step and our home study is done!! Did you read that? Our home study will be done! Finished! Complete! Now that is exciting, really, really, really exciting. If all goes well, we will bring our kids home this sumer. Did you read that our kids? I am smiling from ear to ear. Our kids! I love the sound of that! That is worth resting for. Our house really is ready, it's not going to ever look like it came from a magazine and that is ok. As for packing, Jim and the kids are quite capable of helping to pack. So now I can rest and just be really excited! Yep, I am really, really, really, really excited!
We are as prepared as can be for the whole TSA thing. We had trouble the last time because of my sunblock, it contains metals and banned ingredients. I think we will just buy some there. But now we are in a whole new situation with Sunny. Although they do approve her to carry on all her supplies, she will need to be personally searched according to their website. Our plan is to arrive early and be patient.
And now let the resting begin. I know it is what I need to do, but it's not what I want to do. There is packing and preparing for our home visit. Oh, did I mention that we have our home visit the week we return. The last step and our home study is done!! Did you read that? Our home study will be done! Finished! Complete! Now that is exciting, really, really, really exciting. If all goes well, we will bring our kids home this sumer. Did you read that our kids? I am smiling from ear to ear. Our kids! I love the sound of that! That is worth resting for. Our house really is ready, it's not going to ever look like it came from a magazine and that is ok. As for packing, Jim and the kids are quite capable of helping to pack. So now I can rest and just be really excited! Yep, I am really, really, really, really excited!
Happiness vs Courage
I want my children to be happy, however I have discovered what makes them happy is not always what is best for them.
Sunny had a rough start to our homeschooling year. Actually Sunny and I had a rough start to our homeschooling year. There were tears, angry words, and stomped feet. Not proud to admit, many were had by me. We both often wanted to be right. O. K. We both wanted to be right ALL the time. She said her work was too hard, in "real" school teachers are trained to teach the subject they teach so they know more than I do, she wanted to be with her friends, and she wanted to be a normal kid (still trying to figure out what that looks like). I agreed with her 100%.
So back in November I placed her back in "real" school. School was still hard, her teachers do have more knowledge about the subjects they teach, her friends didn't have "room" at their lunch table and she had to find new friends to sit with, and being "normal" for a diabetic kid is a whole different kind of normal.
Sending her back was the easy choice or at least I thought it was. Her anxiety is too the point of tears some mornings and we have weekly discussions about letting her be homeschooled again. She would be much happier she says, but is it the best option for her.
She became ill last month and missed most of the month of school. She started failing her classes, she just couldn't keep up. I was frustrated with the school for not helping her get caught up. Then Jim pointed out to me I was doing all the talking with the school. Sunny is more than capable of working with her teachers to make up assignments. But it meant she had to speak up for herself. She had to learn to use her voice. Being someone with a chronic illness needs to have their voice heard or they can easily be pushed aside. I knew this personally with my Lupus, during high school I had to constantly ask for extensions on assignments. There were days when I literally could not sit up or even hold a pencil. Sunny has days when her blood sugar is so high she cannot concentrate on the simplest subject. Our voices need to be heard, we need to have the same opportunities as those without medical complications. But it takes courage (lots of it) to say I can't do this, today I need help, I have an illness that affects my entire life. She will need that courage until the day she stops fighting her diabetes. Life takes courage. Courage is not always the option that will make us happy.
We told her last week she will remain in public school. No discussion. She was not happy. I wanted to say yes we will pull you out, we will protect you from being afraid of challenges, working harder then you think you are capable, and dealing with your peers. Then I got my head out of the clouds and accepted life isn't that easy. She will always face these issues, there will be situations that take us out of our comfort zone. We have to accept that we will grow through finding courage or hide from the realities of the world we live in.
So now that I chose for her to find her own courage. I have to find the courage to allow her to grow.
But now be strong, (Jenna) Zerubbabel,''declares the Lord. ‘Be strong, (Sunny) Joshua son of Jozadak, the high priest. Be strong, (Sunny, Jenna) all you people of the land,’ declares the Lord, ‘and work. For I am with you,’ declares the Lord Almighty. (Haggai 2:4 NIV)
Sunny had a rough start to our homeschooling year. Actually Sunny and I had a rough start to our homeschooling year. There were tears, angry words, and stomped feet. Not proud to admit, many were had by me. We both often wanted to be right. O. K. We both wanted to be right ALL the time. She said her work was too hard, in "real" school teachers are trained to teach the subject they teach so they know more than I do, she wanted to be with her friends, and she wanted to be a normal kid (still trying to figure out what that looks like). I agreed with her 100%.
So back in November I placed her back in "real" school. School was still hard, her teachers do have more knowledge about the subjects they teach, her friends didn't have "room" at their lunch table and she had to find new friends to sit with, and being "normal" for a diabetic kid is a whole different kind of normal.
Sending her back was the easy choice or at least I thought it was. Her anxiety is too the point of tears some mornings and we have weekly discussions about letting her be homeschooled again. She would be much happier she says, but is it the best option for her.
She became ill last month and missed most of the month of school. She started failing her classes, she just couldn't keep up. I was frustrated with the school for not helping her get caught up. Then Jim pointed out to me I was doing all the talking with the school. Sunny is more than capable of working with her teachers to make up assignments. But it meant she had to speak up for herself. She had to learn to use her voice. Being someone with a chronic illness needs to have their voice heard or they can easily be pushed aside. I knew this personally with my Lupus, during high school I had to constantly ask for extensions on assignments. There were days when I literally could not sit up or even hold a pencil. Sunny has days when her blood sugar is so high she cannot concentrate on the simplest subject. Our voices need to be heard, we need to have the same opportunities as those without medical complications. But it takes courage (lots of it) to say I can't do this, today I need help, I have an illness that affects my entire life. She will need that courage until the day she stops fighting her diabetes. Life takes courage. Courage is not always the option that will make us happy.
We told her last week she will remain in public school. No discussion. She was not happy. I wanted to say yes we will pull you out, we will protect you from being afraid of challenges, working harder then you think you are capable, and dealing with your peers. Then I got my head out of the clouds and accepted life isn't that easy. She will always face these issues, there will be situations that take us out of our comfort zone. We have to accept that we will grow through finding courage or hide from the realities of the world we live in.
So now that I chose for her to find her own courage. I have to find the courage to allow her to grow.
But now be strong, (Jenna) Zerubbabel,''declares the Lord. ‘Be strong, (Sunny) Joshua son of Jozadak, the high priest. Be strong, (Sunny, Jenna) all you people of the land,’ declares the Lord, ‘and work. For I am with you,’ declares the Lord Almighty. (Haggai 2:4 NIV)
Tuesday, January 1, 2013
A Lesson Gained from Failed Resolutions
Every year I make resolutions for the New Year. I have even written them out and signed my own contract. Year after year I do not keep them. Usually due to loopholes I purposely place in my contract. They are for my own protection. It can be devastating to my self esteem to see I have failed again. Usually I fail because I don't have a realistic plan. Now I am an avid planner. I have plans for budgets, vacations, how to be a better wife and mother, and of course the ever popular lose weight. My weight loss plans are the most devastating, the chart that shows were I should have lost x amount of pounds after 12 weeks. Normally I just start the chart over, but it really is not a productive plan. I do think it is important to try again even if it means trying anew every day.
I have decided that instead of a resolution list this year. I will focus on making each day new. Each day is a new day to turn my focus on God and when I turn my focus on God he will guide me. I will still make a list to love my friends and family unconditionally, be a loving respectful wife and nurturing mother, take my health seriously by taking meds as I should no matter how good I feel at the moment, exercising even when it feels I have no energy, and feeding my body healthy food instead of feeding my emotions. These are all extremely important to me and can all be accomplished. They will be accomplished by prayer, gaining wisdom from God's word, and trying over and over. I will not put a time frame on it for each day will always bring a new challenge that may stop me from my goals. But only for that day. My list will be a lifelong list because even if I become healthier than I have ever been in my life I don't know what the next day will hold.
My list is important it contains no loopholes, because I am handing my list over to God and He has it all worked out for the greater good. I may not lose 100 lbs this year, reach a medication free Lupus remission, or become the world's best friend, daughter, sister, mother or wife. I WILL face each day God has blessed with as an opportunity to grow in God's wisdom, learn from my failures, and try again.
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