Friday, February 27, 2009
But here I can be real...
1) It drives me nuts when people micromanage...
2) I hate it when some people are not clear on certain things they want, then criticize or "correct" you if you don't do it right.
3) I can't stand dishonesty...even with myself.
4) I dislike deadlines that bring out the worst in people.
5) I am really getting annoyed with this winter, Big Time!!
6) It is so frustrating when someone asks me to write a letter and then "proofs it" and changes just about everything. Why didn't you write it yourself?
7) Isn't it annoying when you can only DVR one program, record while watching another and there is a third program you want to see but can do nothing about.
8) The little dust bunnies that keep popping up even after I dust and vacuum, drive me bonkers.
9) I don't like not being liked, it causes my blood pressure to rise when someone dislikes me. Why wouldn't they like me?
10) I hate, hate, HATE dirty snow!
11) Don't read someone's magazine before they do, (especially if you have to open the plastic it is wrapped in) it is just plain old rude.
12) If you don't like a program on TV then don't watch it, don't go on and on about how bad it was and then watch again just to start all over about how much you dislike it. Quit watching it!
I hate that I am so petty. I want to see the best in everyone and everything all the time. Isn't that what God would want me to see?
I am done for now with my rants. Hopefully, it will be a long, long time before I do it again.
Monday, February 23, 2009
We splurge on Packzi!
Paczki, pronounced (PUNCH-key) plural or Paczek (PUN-check) singular, is a large filled pastry that resembles a donut. Paczki are deep fried and filled with everything from lemon, raspberry jelly, strawberry jelly, apples to cream or custard. They can be covered with powdered sugar, glazed or plain. You can pick them up anywhere, and I mean anywhere. Bakeries of course are the best place to get them, but you can also find them at grocery stores, convenience stores, drug stores, even gas stations. Unless you go into a bakery where you can purchase just one (I don't think I know anyone who has gotten just one!) you end up buying a box of six or more and you know what that means...you have to eat all of them before midnight Ash Wednesday! With each Paczek having between 420 and 600 calories each, no wonder it is called FAT TUESDAY!!
After the gluttony of Fat Tuesday, we tend to refocus on the sacrifice Jesus made for us. This is a time of reflection for me. Talking with my brother Phil this morning, you can read his blog here, he made the suggestion of doing something for the Lord, instead of giving something up. I like the idea of both. I need to get my thoughts, actions and words off myself and onto what God wants and to rededicate myself to His way of thinking. To live and love like Jesus.
In the meantime, I am going out tomorrow morning and buying three paczki for the three of us to celebrate. Hmmmm...I just may have to get a box and that means six...
Friday, February 20, 2009
Worship the LORD with gladness; come before him with joyful songs.
Know that the LORD is God.
Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name.
For the LORD is good and his love endures forever; his faithfulness continues through all generations.
Wednesday, February 18, 2009
1 (15 ounce) can chopped tomatoes (you can use the one with green chilies if you like)
1 (6 ounce) can tomato paste
1 carrot, sliced
1 onion, choppped
2 stalks of celery, chopped
2 gloves of garlic, minced
1/4 cup white wine (or you can substitute chicken stock)
1 pinch crushed red pepper flakes
1/4 cup chopped green bell pepper
1/4 cup chopped red bell pepper
1/3 cup bottled steak sauce
5 slices bacon
1 1/2 lbs. ground beef or turkey
1 (1.25 ounce) package chili seasoning mix
1 teaspoon ground cumin
1 (15 ounce) can kidney beans (or chili beans)
1 Tablespoon chopped fresh cilantro
1 Tablespoon chopped fresh parsley
In a large pot over medium-low heat, combine tomatoes, tomato paste, carrot, onion, celery, garlic, wine, pepper flakes, bell peppers and steak sauce.
While tomato mixture is simmering, in a large skillet over medium heat, cook bacon until crisp. Remove to paper towels. Cook beef or turkey in bacon drippings until brown; drain. Stir chili seasoning into ground beef.
Stir seasoned beef, cumin and bacon into tomato mixture. Continue to simmer until vegitables are tender and flavors are well blended.
Stir in beans, cilantro and parsley. Heat through and serve.
Monday, February 16, 2009
These were just too funny not to pass along.
TBBGIIMC - This Better Be Good I'm Ignoring My Children
ISSBFMFTC - I Smell Smoke But First Must Finish This Comment
BE - Banner Envy
PWCEBB - Proceed With Caution Extremely Bitter Blogger
JHTMF - Just Here To Mooch Followers
SICS - Seizure Inducing Color Scheme
ECIZ - Extreme Crafts Intimidation Zone
UMO - Unwarranted Music Onslaught
CPA - Comment performence Anxiety
INTGTTBFFH - I've Needed To Go To The Bathroom For Four Hours
HAGDABB - Have A Great Day And Be Blessed!
Sunday, February 15, 2009
Over this past week I have been focusing on the extreme trials and stress put on families or people with disabilities, but this morning I want to write about the joy of living with a loved one with disabilities.
Our country diminishes the value of someone disabled. Did you know that 90% of women who find out they are carrying a baby with down syndrome will abort? 90%!! There is a young girl by the name of Elizabeth, who has downs. She and her family, have to be the most active family I know. She dances, swims, acts, sings, she attends family retreat along with two other camps during the summer time, she goes to school and tags along wherever her family goes and is the life of the party. When Elizabeth walks into the room, it lights up. She is loud and funny and loves to be the center of attention.
I told you a little bit about Jimmy and his family in the last post. Well Jimmy cannot talk, he pretty much sits in his wheelchair and just hangs out. But when a pretty girl walks by he starts to smile and if you tease him about it he laughs. It has to be the most wonderful sound in the world, Jimmy's laugh.
When we attend family retreat, we see special needs people as the norm, they are the majority. I have never seen a group of people worship God with such open abandon, pure hearts and adoration. The sound is surely a joyful noise! You may not hear beautiful harmony, but instead voices so off key it is comical. You may hear grunts and see sign language. These people have taught me that to love and worship God, is to give your whole self to Him, sometimes quite literally, as they wiggle and squirm and dance before Him. Many of the campers have never attended a church service where they are free to love God, so they do it with gusto! Ahhh...if only I were that free...
I think that because life is so tenuous for a family facing disabilities, that when there is happiness or joy, it is magnified ten times. So if Lances tells a joke that is a groaner, we laugh harder than we would if a typical man would tell the same one. When the "Through the Roof" group from church attends the Tiger baseball game during the summer, we have a better time than when we attend with "regular" people. It is so much fun to watch Scotty talk with the person selling peanuts or having Amy jump up and down when the Red Sox get a hit (even though we would have preferred them to strike out).
I guess what I want to say is, that my life and the lives of my friends around me may be hard, but they are full lives. Would I choose to live my life like this if I had a choice? Probably not, but I wouldn't change it for the world! Lance has taught me more than I would have ever learned without him. I am forced to cling to God everyday for my strength and sustenance. I am truly grateful I have had the opportunity to grow and to meet to many wonderful people. I am so thankful that I have had the example of the simplicity of loving God, I think the way He originally intended it, simple.
Friday, February 13, 2009
Janet is retired, she and her daughter Rachel, live by themselves. Rachel's father walked on them years ago, so Janet is taking care of Rachel by herself. Rachel is physically, emotionally and behaviorally disabled. She can walk, eat and dress herself with assistance, but is quite frustrated all the time. She challenges everything her mother asks her do, including getting up and getting ready in the mornings to go to the sheltered workshop that she attends. It takes Janet 2 and 1/2 hours every morning to get Rachel out the door and Rachel can be angry about something for three to four days at a time. Janet has also helped to raise a granddaughter who is now attending college, because her mother took her own life (Janet's daughter). Janet is extremely independent and doesn't like to ask for help. She also never gets time away from Rachel, it is very hard to find someone who would be willing to stay with her.
Nancy and Bob have two children, one who is now going to college and Jimmy. Jimmy is severely/profoundly disabled. He is non verbal, in a wheelchair and needs assistance with everything. He could not survive without someone taking care of him 24 hours a day, seven days a week. Bob is on disability himself and Nancy works to provide for the family. Bob is getting much older and was starting to struggle lifting Jimmy in and out of his wheelchair. Nancy has had three surgeries, her shoulder, elbow and knee. Her body is wearing out, even though she is only in her late forties. Nancy and Bob finally had to make the decision to put Jimmy in a group home and after two years of searching, they found one across the country. There son is now a 14 hour drive away from them and they are heart broken. In the mean time, they have had to put their home up for sale because every dime they make goes to traveling to see Jimmy, Jimmy's group home and college tuition.
Michelle started a special needs class in her church. She also interprets for the deaf. Michelle and her husband have two teenage boys, one is autistic and non verbal. Michelle is the most compassionate, kind, gentle person I have met and she has such a passion for people who are disabled in anyway. I was talking with Michelle this week and she was sharing about how she had to leave a women's Bible study because the women would ask for prayer for things that she would love to have her son do, such as, staying out past curfew, dating the wrong girl, sassing back. Michelle's prayer requests were different and the women didn't understand, such as her son not responding to the sensory integration therapy. It was too hard.
Lois and Missy live in a mobile home together. Lois is going to be 70 this year and Missy, her daughter, is in her mid forty's. Lois is going blind and recently had some major surgery on her foot which required her to be in wheelchair for several months. Missy has cerebral palsy but is able to walk and take care of herself. She is also legally blind and a little delayed in her development, but helps out her mom immensely. The two of them do very well together. Missy's father left them years ago and now they survive on Social Security. Neither one of them drive and have to walk or take a bus whenever they go out. This is getting harder because of Lois' sight and walking ability. Lois is so worried that if something happens to her, how would Missy care for herself. Who would be there for her?
My friend Lindsey is brilliant! She has several undergrad degrees and is working on a duel Master degree at the moment. Her gift and desire is to counsel people, to help them through difficult times, to be a listening ear. She has had a very hard time finding internships. Churches don't take her seriously. You see, she has cerebral palsy and her body is twisted. She walks with crutches, but even that is getting very hard to do. She is extremely proud and independent, has worked hard all her life and has not been on government assistance. But she cannot get a job and she is discriminated against. She is not doing well financially and I fear she isn't eating so she can make ends meet. Lindsey was married at one time, but the man she married was lazy, cruel and took her money. Need less to say, it didn't work out. Lindsey doesn't want to be a church project, she just wants people to see her, not her disability, be her friend and respect her.
I wanted to take a moment and share these amazing people's stories. Everyone of them have a saving relationship with Jesus Christ. They love Him and trust Him with their lives and the lives of their children. I hope that their stories will help you understand families that are affected with disabilities and encourage you to reach out and befriend someone who needs a friend.
Thursday, February 12, 2009
Do not grieve, for the joy of the Lord is your strength... Nehemiah 8:10
If you know God, you start to cling, cling, to His promises.
When your child is diagnosed with special needs, you are thrust into a world filled with the unknown. You start visiting hospitals and specialists. You not only have a pediatrician or a primary care physician, you have a neurologist, an orthopedic surgeon, maybe a neuro/psychologist.
You begin to have all sorts of evaluations and treatment prescriptions. Your child starts seeing physical therapists, occupational therapists, speech pathologists. You have consultations with people who can help with adaptive equipment, communication devices or sensory integration. Your child may need medication that needs constant blood tests to determine effectiveness or making sure the meds don't damage other organs in his/her body. There could be surgeries to help ease some issues. There may be feeding problems or sleeping disorders.
Dental work now has to be done with anesthesia, which means possible hospitalization. Other testing such as EEGS, MRIs, CT scans, blood work ups (which are many) may all have to be done under anesthesia.
Then there is the educational aspect. Again there are evaluations and IQ testings. You may begin sending your child to a special school at 12 months old. There are IEPs (individual education plan) every year. You meet with social workers, service coordinators, counselors, and teachers. There is the issue of transportation. On and on it goes.
In the mean time, if there are other children in the home, you are trying to keep things as normal as possible, so you are running them to school and to after school activities. Helping them keep up their school work and home work. Wanting them to have friends outside of the home. Going to conferences and meeting with teachers. Well, you know the things an average family needs to do...
The average middle income family may have insurance, but it will only cover so much and there for, many of the medical expenses have to come from the parents. Because you make too much money (the government decides what is too much and believe me it is not very much) you do not qualify for governmental aid. PT, OT and speech is usually not covered, at least for us it wasn't. Many medications are not on the approved list. You want your other children not to go without, so you are paying for the gymnastics and music lessons, the soccer and art clinics, maybe even private school. What little bit of money you may have, if you have any left over, you put away for college. There is no thought of retirement. The father is working as much overtime as possible or taking a second job just to make ends meet.
You can see how much stress there is for a family, and the parents are exhausted most of the time. They never take time for themselves. It takes everything they have just to crawl into bed at night, only to start all over the next day. Sometimes the parents don't stay together, it is just too hard.
We are the exception, God miraculously kept Kevin and I together. We grew stronger (not without difficulty) and made it. I cannot image what my life would be without the love of God. Kevin and I have learned to laugh and rejoice in the mundane. We appreciate the quiet times and look for ways to share God's love with others. We thank Him for teaching us so much and hopefully we are able to teach others what we have learned. We love that our daughters have developed compassion for those who are weak and hurting because of their experience and love for their brother.The Lord is my strength and my song; He is my God and I will praise Him... Exodus 15:2
Tuesday, February 10, 2009
80% of parents with a disabled child end up divorced. Mostly it is because the father cannot fix it and they feel like failures.
When Lance was born he was transferred to a large hospital with a specialized NICU. My doctor felt so bad for me that she released me about twelve hours after I gave birth. I remember that I begged Kevin to drive me to the hospital to be with our baby. We went into the room and just stood over his little isolette.
That was the last time Kevin took me to the hospital. He refused to go back and told me that I couldn't go. That was the first time I totally and completely ignored any request he had made. I asked my parents to drive me back and forth to see Lance. I want you to know that Kevin isn't hard or unfeeling, he just couldn't bring himself to be in a room and feel so impotent. He couldn't fix Lance, so he ignored him. When we were together I wanted to tell him what was happening and he didn't want to talk. (This is quite unusual since Kevin loves to talk!)
Kevin finally went back to the hospital with me and the girls when it was time to bring Lance home. We made it. Lance was going to live! Kevin thought everything was okay. He cuddled Lance and walked him when he cried and did what every other father of typical babies do. And then our world crashed down around us a second time.
Mothers are on a mission, they forget and ignore everything else and do what needs to be done. They become very focused...how do I take care of and improve my child's life? What needs need to met right now.
Fathers are different, they totally disconnect. If they can't fix it, then they walk away emotionally. Sometimes physically.
Both parents are no longer in the "normal" world. Their thoughts have changed, their focus has changed, their lives are changed. They no longer think about the get together next week or what the new fashion is this year...
Talking with many, and I mean many other parents of special needs children, these reactions are almost universal.
Sadly, the ones who end up hurting the most are the siblings of these little ones.
Monday, February 9, 2009
You want the best for your child. You have dreams for your child. Your child is going to be the smartest, most beautiful, incredible...
We were blessed with two beautiful typically developing daughters. Brigette was 5 and Angela 6 when we found out we were expecting Lance. He was planned and wanted. The girls were so happy to find out he was on his way and we all wanted a boy, but decided to wait to find out and be surprised. Just like so many families.
Something can happen, whether from birth (before, during or after), illness (mental as well as physical) or an accident (this could also result from violence).
The first emotion is denial...this can't be...will he live?...we just have to wait a bit and things will be okay...let's pray...things will be fine...
This one can last from several hours to years, yes I said years. Usually the mother will face reality first.
The next emotion is anger...how can this happen to our child?...why would God let something like this happen?...didn't the doctors know about this?...
Then comes guilt, depression, wanting to fix it, fear, loneliness...
And finally the death of a dream
The funny thing is that these emotions will come and go continually throughout the life of the child. But there is one emotion that finally comes and stays, even though the others bounce around, it is acceptance. I will elaborate more tomorrow.
Sunday, February 8, 2009
Please don't say "You only have to believe and know it in your heart and your son will be healed".
Please don't say "It is not God's will that your son is disabled, He wants everyone healed and whole".
These have been comments made to my husband and I more than once. Having a loved one with a disability is not easy, in fact it is beyond what anyone can imagine.
If you don't know, our son Lance is disabled, you can read a little about him here.
My husband had a conversation with someone yesterday that brought all these thoughts back. Will you indulge me and let me address these comments here?
First of all, we are not anymore special than anyone else. Things just happen, we are in a fallen world and it can happen to anyone anytime. Whether it is through birth, illness or an accident, bad things happen to good people and you just do what you have to do, period. As far as being kind...believe me, there are days when I want to throw Lance out the window, I have no patience left and am tired, beyond tired and there is no kindness left in me. Also, you only see the "good" side of us while we are out, there are other times when grace is so not evident in our lives.
Next, I wish it were that easy, just to believe that it will be okay and it will happen. God is not a fairy godfather, I can't just wave a wand around and say or believe the right thing. If it this were true, don't you think that sick and broken people everywhere would be healed and walking in wholeness? I believe in miracles and have seen them in my life as well as others, but sometimes we aren't healed, what more can I say on that.
As far as it not being God's will, I don't have the answer, I just don't know. All I know is that He loves me and my family. He cries for my son because He loves him more than I do. He watched His own Son die, so I know He knows exactly what I am feeling, He has been there.
All I ask, is that you don't use cliches. If you feel you need to say something, offer to pray or just say "you are a blessing". Be real with me, and if you can't think of something to say, that's okay, a hug does wonders.
I am going to use this blog as my journal and will write more about the world of disabilities in the coming days. Thanks for letting me get this off my chest.
Friday, February 6, 2009
When I started to blog last summer, I just wanted it to be a little journal, an account of my life, about the joys and struggles of being a woman who finds a world that is not too easy to live in. I was never good at journaling via paper and pen and thought that since I spend way too much time on the computer, it would be a good way of putting down my thoughts however good, bad, fun or ugly they may be. In the process I have met some wonderful people that have turned into good friends. Thank you dear friends you are a Blessing to me.
Wednesday, February 4, 2009
This picture is of my son-in-law David and our daughter Brigette. David married our oldest daughter Angela and they moved to Charleston, SC, for David's job. This past August they opened their home to Brigette, so she could finish her education. Brigette is attending The College of Charleston and will graduate in December with a degree in scene/light design. Anyway, Angela e-mailed a few pictures of herself, David, Brigette and our nieces while they were visiting the local beach. David and Angela fly huge kites and he was instructing Brigette on how to fly it. I love the look of joy on David's face.
Thanks Cindy, this was fun!!
Monday, February 2, 2009
During this massive cleaning, organizing and decorating frenzy, I was thinking about what I needed to make this house what it should be. I wanted to run out and buy the curtains and pictures that we need to finish decorating the house. The dinning room table, chairs and buffet that I absolutely need to finish off the eating area, were just crying out from the Ethan Allen catalog. I really need to get more baskets for the closets and of course new towels for the bathrooms since mine are so ratty. On and on the thinking went until I realized that I really needed to think frugally. Okay, how am I going to be frugal yet make a good impression?
Repurpose, Recycle, Reuse...
One of my favorite shows on HGTV is Free Style. It is a program that have decorators come into a dull or nasty room and use all of the owners items from the other parts of the house to make it beautiful. I think I did that. The appraiser said our house was lovely, that was a nice compliment.
Now, I want to continue to improve the house the best I can with what I have available and I think that when I am out and about I will stop into thrift and antique stores or even go the local flea market. No telling what I can do!!