Tuesday, December 21, 2010

Secret Santa

A little over a week ago we began receiving little gifts at our door...the 12 days of Christmas from a special Secret Santa. My kids have been so excited for the doorbell to ring every night. Last night the secret Santa brought something that was, probably by pure coincidence, wonderful for Ethan. I admit openly that I have an aversion to anything sticky, and that is probably why I have never bought these "ring pops" for my kids, but this ring pop was literally the first thing Ethan has ever really been able to feed himself in his entire 9.5 years of life. You have never seen a kid so excited and happy. I would have taken a picture to post, but he was only in his diaper....and that was my saving grace as it made it really easy to get him straight into the bath after without having to get very sticky myself. Thank you secret Santa for this small but amazing miracle you have given all of us!

Monday, December 13, 2010

For a little while....

In this life, we all have our trials and our triumphs....sometimes great and sometimes small. The past couple weeks I have had one of my lowest lows and one of my highest high points in my life. I realize that to have the triumph we must experience the trial, as difficult as it might be....sometimes it seems we have to endure a lot, for just a little gain, and sometimes you might wonder just why you are being blessed so abundantly, and other times, it might be just a relief to compromise. Today I know I am loved more than I could possibly ever know....and through it all, I hope that there are those in my life that will realize they are loved by me as well....more than they could possibly ever know. My life is blessed because you are in it. My life is enriched by your joy. My life is full of love because of all you give for me. Sometimes it is hard to see past the moment before us, uncertainty is part of what makes us who and what we are. I may have you in my life for but a little while, but it is those moments that matter most, those moments that will live for an eternity in my heart. It is up to us to make the most of our little while, while we have it.

Friday, December 3, 2010

...lean not unto thine own understanding

Today I had the chance to help a friend, though I had no idea how much until after the help was rendered. It was something simple and very insignificant and cost me nothing more than a few minutes of my time and knowledge I had gained from prior experiences. This friend had purchased a pair of bunnies from us a couple years ago. They are loved and very well cared for but as happens one became sick and this friend called to ask advice on taking her pet to a vet. I made recommendations on a vet and then relayed information I had gathered and researched giving her alternatives that I myself would have done in her position. I knew from what she was describing to me it was one of two things that afflicted their rabbit. One of those things was treated with a medication I had in my fridge, that I had just considered throwing away just four days ago because I would most likely never need it as we stopped breeding show rabbits six months ago, but I had a feeling that I should just leave it for a while longer and I thought nothing more of it until after this friend had left my home with the medicine in hand. I was also able to give her a source and information on the other medication for the other condition that has similar symptoms. I probably will never know the full extent of what I was able to do for this friend, I only know that they would have had to make some significant financial sacrifices had I not been able to help them. Sometimes we don't understand what things are done for or why....I didn't even recognize that feeling to keep the medicine a while longer as a prompting....but now I see it clear as day. Sometimes it is hard for us to see in our present circumstances as they are happening that something so small can have great outcomes, can make a difference.

Wednesday, December 1, 2010

Heaven's Light


It's not often that I share my work on my family blog, but this is one that I feel needs to be shared. I LOVE sculpting this time of year because I get to create some beautiful representations of our Savior as a baby. These are probably my most special sculptures and most are gifted to family and friends. I finished this tiny sculpture yesterday with the intention of selling him, and I just can't bare to do it. He is meant to bless someone's life, but I just don't know who yet. This piece is called " Heaven's Light " and the baby sculpture measures just over 3 inches. He is dressed in cotton muslin swaddling bands and also has a tiny woven basket manger.

Friday, November 26, 2010

Monday, November 15, 2010

He will see you through....

....IF....you let him. Our kind and wise Heavenly Father has given you the resources and the support to get through your darkest moments and your most difficult trials. This life is a test, and it wouldn't be a test if it was easy. We can be of a mindset that we are hard done by, an act of selfishness. We have but to look around to see how truly blessed we are. I can't count the people who look at my son and say he makes them want to cry with the lot he was given....and then the magic happens....he smiles. He was given in this life a body that is broken, that doesn't work, that is very different than what is considered normal. He was also given a mind that works perfectly in this body that doesn't. He was given physical limitations, keeping him from walking, keeping him from talking, from eating in the usual way....but, he was also given a devoted father, a loving mother, caring siblings, a birth in a time where the technology exists that would see him through events that surely should have killed him, resources to treatment that would make his situation more comfortable. He was also given a choice....he could be miserable or happy with his lot....he chooses to be happy. It is all in your attitude. You can look at your troubles and see them as barriers or you can see them as opportunities for growth. I could have been bitter about the fact that I will spend the rest of my life in servitude to this same child, but rather, I consider it an honor and a blessing. I can look back at how much this experience has helped me to grow, and I can see all the talent, resources and tenacity that my Heavenly Father gave me just for this task, this test....he gave me what I needed to get through this, and not just to get through it, but to triumph in this. Life is about choices and attitude. We all have what it takes, but in the end it is up to us.

Tuesday, October 12, 2010

Life isn't fair....

If it were fair, we would never do anything significant, for this, I am grateful for the injustice in this world, because it is that injustice which gives us the opportunity to shine.

Seeds of Truth

This morning, Tuesday is always my very early morning as Terry has to be to work early to help the school with morning traffic, my mind was on Aaron as I finished up a memorial doll of his brother Michael who died at just a few months old. Aaron had a broken life and hung in precarious unbalance when Terry's mum passed away in 2004. Aaron had been in her care from the age of eighteen months when his own mother could no longer cope with him, I imagine due to a number of reasons. Terry's mum and step dad were raising this very young child, in ill health themselves, raising a child with a plethora of developing problems. Needless to say, at the age of 10 1/2 when he arrived to our family he was a mess. I look at this massive difference in habits, attitudes and behaviors, between Aaron then and my own son Ethan at 9 1/2 and the difference is unsettling, though at the time our Ethan was only 3, and we had no idea what parenting a preteen/teen would involve, what was normal. At the time we let Aaron go, I felt like we had failed him, that we had just made his problems worse, but this morning as I thought on Aaron, I realized that in the three years that he was here, we gave him every opportunity we could, we gave him the guidance he needed, taught him life's lessons that he had somehow missed in the years before arriving to us, we had done our part to put him down a better path, and we HAD to let him go, let him use his agency to forge his own way. We planted the seeds in his heart that one day they might grow and blossom. I wonder if he was sent to us during this time to be that beacon of light that his family will need at some point, if it is his mission to bring them simple and beautiful truths when they need them, when they are ready. I was thinking about the path of sorrow and anguish this child is traveling right now and feeling unreasonably responsible....I think this is a common mistake that parents make during their childrens' adolescence, and then it cam to me Our vision is so limited, we tend not to look at the bigger picture, of the hope that we have given them and take there mistakes as our own personal failings. I do hope that one day, maybe many years from now that Aaron will think on the things he learned here and that he will treasure them and exemplify them and share them with those he loves.

Monday, September 27, 2010

Prayers for our friends....

Our friend Konner is back in the hospital, his cancer has come back after 20 months of being cancer free, and our friend Kate is not doing so well either....please pray for healing for them, and comfort and peace for their families!

Sunday, September 26, 2010

Sunday morning solace...

I truly love my Sunday mornings when the house is asleep, a time for me to reflect and prepare spiritually for the day.

Yesterday ended up being a pretty lazy day, but it is on my mind, reminding me of just how very blessed we are.

Yesterday one of the families from Ethan's Make a Wish trip were holding a blood drive. We went down to support them, not intending to donate since they won't take Terry's British "mad cow" blood, and I figured I might be anemic because I have been pretty tired the past week (I know, who wouldn't be with a child with pneumonia getting albuteral treatments and being super hyper). They had an empty slot so I figured I would at least do the finger stick....well, I ended up donating. It wasn't bad at all for my first time, having had four kids I wasn't a stranger to having a needle stuck in my arm and the phlebotomysts are WAY better at it than the nurses in L&D! I did get a little woozy at the end, but a little juice and crackers and it was all good.

We sat and talked with two of the families from our trip and it was awesome to see how well their kids were doing.....Alex is almost two years post transplant, and Dana will be finished with treatment for leukemia in just a couple months.

I was not prepared for how I would feel when we left the cool air conditioned room and slammed with 104 degree heat. I was so sick I thought I might need to borrow Ethan's wheelchair. And the rest of the day was spent recovering.....but I KNOW how worth it it was....I may have spent 1 day sick, not able to do much, but it reminds me of how much time these kids spent sick, and how much these blood donations mean to their lives.....they wouldn't have made it with out people willing to go through what I did, it is SOOOOO worth the day sick to save a life. And I am so grateful for my health, for the health of my husband and children and that even though limited as Ethan is, he is healthy and we don't have to live in a hospital for any length of time. We are so very blessed!

Friday, September 17, 2010

Confrontation

A few nights ago I had a horrific dream. It was a role reversal and in it I was the abuser abusing a child. The emotion was incredibly intense....the abuse it self was a blur, but how I felt after woke me with a start, gasping that it was just a dream, and it will forever haunt me, that feeling of utter sorrow and hopelessness that there was no forgiveness for what I had done and how I had irrevocably changed and harmed a life. The feelings so deep and so dark that I anguished that my abuser could be feeling this way, and after laying in bed for half an hour trying to calm down I had to get up and write and email to him as I couldn't remember if I had told him that I forgave him for the hell he put me through, for the acts of molestation, the humiliation, and then the emotional and physical abuse that followed until I left home.

I was wrong....he did not feel how my dream made me feel.

I thought that I had overcome everything I endured at his hand in the 15 years since I had moved away from home.

It confirmed something though.....I am a much stronger person than I was then.

I started simply:

I don't know if I said this to you before, and I need to make sure that you know that I forgive you for what you did to me.
Your Sister

A barrage of attacks followed. My first reaction was anger and I was ready to write him off, but my dear sweet husband talked to me, calmed me, lead me to see that there was a gentler approach, and it would allow me to be in control, in control of myself, which in the abusive situation I never had, it was always reaction and never response.

He tried to push blame on me, but through years of soul searching, and counsel from religious leaders and experts in the field, and friends who have gone through similar things....I KNEW there was no blame for this abuse on me....there is NOTHING in this world that a nine year old girl can do to deserve what this sixteen year old boy did to me....and the other abuse that followed while I had to continue to live with my abuser until I reached adulthood.

I tried to explain to him, that he can't know how what he did hurt me, and how it effected me for the rest of my life. I let him know that I was sorry if I said hurtful things to him because of what he did to me, but I also let him know that I WOULD NOT BE HIS VICTIM ANY MORE, I WILL NOT LET HIM ASSERT DOMINION OVER ME AND I WILL NOT OWN RESPONSIBILITY FOR HIS ACTIONS.

I tried to respond with sensitivity over four separate attempts to attack me , I had offered peace, but his intent was war. In the end I told him....I offered forgiveness, it is yours to accept or not.

He did not accept, he said good bye and good riddance. His choice, not mine.

I am reminded of something a friend explained to me, words that give me peace now:

It is found in the 18th chapter of Matthew:

6 But whoso shall offend one of these little ones which believe in me, it were better for him that a millstone were hanged about his neck, and that he were drowned in the depth of the sea.
7 ¶ Woe unto the world because of offences! for it must needs be that offences come; but woe to that man by whom the offence cometh!
8 Wherefore if thy hand or thy foot offend thee, cut them off, and cast them from thee: it is better for thee to enter into life halt or maimed, rather than having two hands or two feet to be cast into everlasting fire.
9 And if thine eye offend thee, pluck it out, and cast it from thee: it is better for thee to enter into life with one eye, rather than having two eyes to be cast into hell afire.
10 Take heed that ye despise not one of these little ones; for I say unto you, That in heaven their angels do always behold the face of my Father which is in heaven.
11 For the Son of man is come to save that which was lost.
12 How think ye? if a man have an hundred sheep, and one of them be gone astray, doth he not leave the ninety and nine, and goeth into the mountains, and seeketh that which is gone astray?
13 And if so be that he find it, verily I say unto you, he rejoiceth more of that sheep, than of the ninety and nine which went not astray.
14 Even so it is not the will of your Father which is in heaven, that one of these little ones should perish.

It is hard to know that I went out on a limb and offered healing, only to be thrown out of the tree and left bleeding, knowing he truly doesn't understand the impact he had on my life, the hurt and helplessness he caused me to feel. It hurts to "cut off the arm" and live with the scars the rest of my life, but knowing I can't move on while I am holding on to that.

I am strong.

I have played my role.

I have left an open door.

He has closed it....and the handle is only on his side.

I am moving beyond this darkness.

Monday, September 13, 2010

I am grateful....

....for leaders who are inspired and for the revelation that comes through them, it brings comfort and peace and I hope I will always remember the counsel they have given when I am feeling especially vulnerable in my situation.

Monday, September 6, 2010

For the Beauty of the Earth...


For the beauty of the earth,
For the beauty of the skies,
For the love which from our birth
Over and around us lies,
Lord of all, to thee we raise
This our grateful hymn of praise.

For the beauty of each hour
Of the day and of the night,
Hill and vale, and tree and flower,
Sun and moon and stars of light,
Lord of all, to thee we raise
This our grateful hymn of praise.


For the joy of human love,
Brother, sister, parent, child,
Friends on earth, and friends above,
Pleasures pure and undefiled,
Lord of all, to thee we raise
This our grateful hymn of praise.


For each perfect gift of thine,
To our race so freely given,
Graces human and divine,
Flowers of earth and buds of heaven,
Lord of all, to thee we raise
This our grateful hymn of praise.

Tuesday, August 31, 2010

Wild Blackberries

We spent the weekend up on the rim again....we love it up there. This time we picked a "free" spot and left our trailer up there so we have a space ready for Labor Day weekend. It is a really wonderful spot. I was thrilled for the kids when they found wild blackberry bushes and soon their little hands and faces were stained pink and purple from the juice of the ripe berries they all enjoyed. The ground was also covered by wild strawberry plants....but unfortunately they are just out of season or completely picked clean by the deer and other wildlife.

Sunday, August 22, 2010

Spontaneity


Sometimes it is really nice to just get up, go and get away from it all....sometimes it is exactly what we need. An unplanned trip out of town, to a favorite camping spot. The time and experience with this kids was priceless, inspiring, and uplifting. I am so grateful for the magic in these mountains, in this meadow and in the hearts of my sweet children, for their willingness to believe, and live in the imagination that inspires incredible things....for the mushroom houses and dancing fairies, and the opportunity to share in the enchantment that is contained only in childhood.

Thursday, August 19, 2010

Wednesday, August 18, 2010

A thought for Wednesday

Music is vital to my soul....I need it like air to breathe....silence is suffocating.

Tuesday, August 17, 2010

A mom is only as happy....

....as her saddest child....this makes me one unhappy mom today.

I really need to figure out what is going on with Helen.

I worry about her distraction, her acting out, I worry about how I am dealing with it. I worry about how it is effecting our other kids.....I worry that it is because she feels neglected because of everything we have to do for Ethan. I worry that she resents me. I hope that I can be sensitive to her needs with out being accepting of the behaviors that are not helping our family. I hope that she doesn't always think I am a bad mom. I hope that she will still talk to me even when things get even harder as she gets older. I hope that I can always be the mother and friend that she needs me to be.

My heart is full, with both joy and sorrow for this precious child, who I know must be needing me now more than ever, who is acting out to get my attention. I hope that I will have the inspiration and wisdom to respond the way she needs me to, whether she knows it or not, appreciates it or not, respects me or not, and the strength to accept that she will make her own choices and that her choices are hers alone and that I have taught her what is right and good and that she will remember who she is and that she will feel of my love, even if she doesn't get the answer she wants.

Thursday, August 12, 2010

♥L♥O♥V♥E♥

Creating through art has always been bitter sweet....here is one of the sweetest moments....

My newest 11 inch hand sculpted baby, finished today. I rarely fall in love with one of my creations, but this one I am head over heals in love, perhaps because he looks a lot like my Mark did as a newborn...which is the reason I have named him Mark.

Sunday, August 8, 2010

Counting Blessings....



1. I am blessed to know that I am a beloved spirit daughter of Heavenly Parents....and they will always be there for me.
2. I am blessed with a wonderful husband, who I chose, and still would choose, who loves me, understands me, and tolerates me.
3. I am blessed to have a son with incredible struggles, because with those incredible struggles comes incredible strength and courage.
4. I am blessed to have a daughter who is caring and loving, who will always put her arms around me when I need it.
5. I am blessed with a son with incredible imagination and creativity, who's quiet reflection is so dear to my heart.
6. I am blessed to have a daughter with and incredible zest for life, with a sense of humor that will always make me laugh, and who keeps me on my toes.
7. I am blessed with a home, that keeps us safe, and warm, and a place where we can be together as a family and share our lives with each other.
8. I am blessed with artistic talents, to give me an outlet, and a way to contribute to our family while being at home raising our children.
9. I am thankful for good food, for knowing how to prepare it, for a husband who can prepare it when I am not up to it, and the sensibility to enjoy it.
10. I am thankful for good friends, who I can turn to, who give me added opportunities to serve and who give me perspective that I might not otherwise have had.

Tuesday, August 3, 2010

Acorn Swaddle Sac and Cap knitting pattern

Swaddle Sac and Acorn Cap



Needles show in size 7 circular, four double point needles(various size needles from size 5-10 can be used depending on size desired and to accommodate bulkier or finer yarn) can also be don on straight needles with a seam.

Yarn: Approximately 1 skein (5-7 ounces) worsted weight yarn shown in ecospun plus 1 skein (less than 3 ounces) of light bulky weight yarn (shown in Bernat Alpaca Natural Blends) for acorn hat

Swaddle Sac

Cast on 60 stitches (worsted weight yarn) place marker to mark the beginning of the round (continue moving it to beginning of next round) knit rounds (stockinette stitch) until “tube” measures approximately 16 inches.

Decreasing round: (k 8, k 2 together) to end of round
K 1 round
Decreasing round: (k 7, k 2 together) to end of round
K 1 round
Decreasing round: (k 6, k 2 together) to end of round
K 1 round (switch to four needled when it is to tight/difficult to continue on circular needles)
Decreasing round: (k 5, k 2 together) to end of round
K 1 round
Decreasing round: (k 4, k 2 together) to end of round
K 1 round
Decreasing round: (k 3, k 2 together) to end of round
K 1 round
Decreasing round: (k 2, k 2 together) to end of round
K 1 round
Decreasing round: (k 1, k 2 together) to end of round
K 1 round
Decreasing round: (k 2 together) to end of round (6 stitches left)
K 1 round
thread a length of yarn through remaining stitches and pull tightly together, tie off and weave in ends.

Acorn Cap

Cast on 40 stitches (worsted weight yarn) place marker to mark the beginning of the round (continue moving it to beginning of next round) knit rounds (stockinette stitch) until “tube” measures approximately 4 inches. At beginning of next round switch to the thicker yarn and knit in garter (in the round this is k one round p one round) increasing (Kfb = knit in front and back of st)on the 10th, 20th, 30th and 40th stitch (44 stitches), purl next round, next round increasing (Kfb = knit in front and back of st)on the 11th, 22th, 33th and 44th stitch (48 stitches), purl next round. Continue garter pattern for 4 more rounds.
Decreasing round: (k 6, k 2 together) to end of round
P 1 round (switch to four needled when it is to tight/difficult to continue on circular needles)
Decreasing round: (k 5, k 2 together) to end of round
P 1 round
Decreasing round: (k 4, k 2 together) to end of round
P 1 round
Decreasing round: (k 3, k 2 together) to end of round
P 1 round
Decreasing round: (k 2, k 2 together) to end of round
P 1 round
Decreasing round: (k 1, k 2 together) to end of round
P 1 round
Decreasing round: (k 2 together) to end of round (6 stitches left)
P1 round
Decreasing round: (k 2 together) to end of round (3 stitches left) transfer all stitches to 1 needle and continue by making an I-cord (Slide stitches to opposite side of needle. The yarn should be coming out of the left stitch. Pull the yarn from behind. *K3. Slide stitches across needle.) Repeat from * until cord is about 1 inches, bind off and weave in loose ends.

IT HAS COME TO MY ATTENTION THAT PEOPLE ARE TAKING THIS PATTERN AND SELLING IT FOR PROFIT. THIS PATTERN WAS POSTED FOR FREE ONLY FOR PERSONAL AND CHARITABLE INTENTIONS. I WORK LONG AND HARD ON EACH OF MY PATTERNS AND ONLY ASK DONATIONS FOR THEIR USE AND THESE DONATIONS ARE USED TO RAISE FUNDS FOR OUR ADOPTION OF A SEVERELY DISABLED CHILD. BY USING THIS PATTERN FOR OTHER THAN WHAT IT WAS INTENDED OR STEALING MY WORK AND SELLING IT AS YOUR OWN YOU ARE ROBBING A CHILD AT HIS CHANCE OF A HOME AND LOVING FAMILY. IN ADDITION, IT MAKES ME HESITANT TO POST FURTHER FREE PATTERNS.

Wednesday, July 7, 2010

Changes....

The kids all had a slumber party last night in Ethan's bed and are now, very loudly playing in his room behind closed doors, leaving me to peace for the morning. Yesterday brought about a subtle but big change for Ethan....he took a shower and enjoyed it. Up until now he protested loudly about showers and we are not sure if they were uncomfortable for him for some reason, he did not like water spraying in his face, or if he was afraid or didn't feel safe in them....plus he really loved being in the bath. A little over a year ago we had a huge battle with the courts/attorney/case manager who love to butt in and tell us how to raise our child, and think they have the right simply because Ethan has a bit of money awarded to him for his birth injury. They wanted us to spend a huge chunk of it on remodel of parts of our home that would give Ethan his own bathroom with a roll in shower, which at the time was completely unreasonable as he refused to take showers and he was still plenty small enough for us to carry him in to the bathtub, etc. Well now that things are changing, Ethan is maturing, not to mention that for the first time in his life he has had significant growth, gaining over 15 pounds in the last 12 months, it is time to re-think how we need to move forward....the timing is bad with the economy and job market as they are(without security) but in all honesty, with Ethan, for us it has always been the here and now, because we don't know how long he will be here with us, we hope a long time, and who knows with his disposition and zest for life it very well could be, but statistics paint a picture where we need to enjoy every day we have, because time is limited. I have to remember to live every day to the fullest, because tomorrow is uncertain....truly it is that way for everyone, but having a child like Ethan just gives it more meaning. Be happy, share with others and give it your all while you have your all to give ;-)

Sunday, July 4, 2010

Humbled....

Sometimes we get so carried away with the trials in our own lives that we fail to recognise the sruggles endured by others. It is times like these that we need to remember to look beyond ourselves, for in giving comfort to others in their struggles we receive comfort in our own.

It has been a particularly annoying week....tired from our vacation, and chores building up as we try to get back to our regular routine, I find the battery on my van is dead, a victim of our intense summer heat....to busy is our schedule to take it in for repair at the immediate moment, my husband and I agree to share the car. I drove him in to work and then, due to some issues I was having with back pain, I take the children to the mall for a nice long walk which usually does the trick to sooth my back ache and it is nicely air conditioned, even though the kids would have prefered a park....not for me when it is 110+ outside! After a couple hours we make our way home, we are in an accident as a boy makes a left turn right into my fromt end in our only working vehicle. Lucky, the kids are ok....I am sore but with out major injury, but the car incured $6000.00 worth of damage from an uninsured driver.

We had planned to get our very delayed accounting done that evening, and now time was sucked up with talking to our insurance company, getting the car in for repair and getting a rental car to get us by until both our vehicles are operating again....and I am in pain, my shoulder, my neck, and my pelvis causing me quite a bit of discomfort. Needless to say, it did not get done, adding to our growing to do list. Other conserns arise as we get a call from the neurosurgeon to schdule Ethan's intrathecal baclofen trial in two weeks, he will be spending a week in the ICU, and now I need to get his hospital gowns done ASAP.....

STOP!

Need time to breath, slow down, relax. I know it was overwhelming and it was, still is hard to take in, hard to be pulled in so many directions. I needed so very much the lessons and testimonies I heard in church today, to bring it all into perspective. To remind me that we are all going through our own struggles and we are all being pushed to our own limits and that the only way we are going to get through this is to let go, put our faith in him, hold each other up, support each other and through serving others we will find the stregth to get through what we are dealing with. Today of all days we remember and celebrate FREEDOM, and there was a lot that went in to getting that freedom and those rights....people had struggles that I can not even comprehend being able to survive, and yet they endured faithfully.....and for them I am greatful, and humbled....my yoke is easy, and my burden is light.

Tuesday, June 29, 2010

Please say a prayer....

...for our sweet little friend Kate. She is under going some tests today, and we are hoping that the outcome is good. Kate is a very special little girl who is so full of love and so full of the joy of life and we hope she is with us for a very long time. Please pray for peace for her family regardless of the results. We love you Kate!
http://www.prayforkate.com/

Sunday, June 27, 2010

Understanding....

A lot has been on my mind just recently....it has been a difficult time, and that tends to be when my heart is especially full. We spent a week with families, who have challenges similar to ours with children who are sick, medically fragile, etc. Some will recover and live a normal life....and some, might not. It is in these circumstances I am grateful for my belief, faith and understanding. But I still grieve for them, and hope for a miracle for them. We have known for quite some time that Ethan will most likely not have a normal lifespan. I feel blessed for the time we have had with him, being blessed by his sweet spirit, our lives have been truly blessed, just because he has been here. He is the way our Heavenly Father meant him to be, because in his current condition, he is able to touch lives in a way he could not have done had he been a typical child.

During our holiday, Kurt Warner, a devout Christian, gave a sermon to our group. He talked about Moses, and his keen awareness of his limitations, and how God reminded Moses that he (Moses) was created in His (God's) image.... I believe with all my heart that God gives weakness unto men that he will be humble and that if we are sufficiently humble and faithful that God will make our weaknesses our strengths. I am grateful for my weaknesses because they do remind me that I can't do everything on my own....I was never meant too. And I have seen Ethan build his weaknesses into incredible strengths.

I remember a talk not to long ago where someone had reflected about wanting a "How to" book or instructions on what they had to do in this life to return to our Heavenly Father.....The answer was in the Sermon on the Mount contained in the book of Matthew and I have added my thoughts in ():

Matthew 5:3-12 (King James Version)

3 Blessed are the poor in spirit (who turn to Him): for theirs is the kingdom of heaven.

4 Blessed are they that mourn (and put their faith in Him): for they shall be comforted.

5 Blessed are the meek (and are humble before Him): for they shall inherit the earth.

6 Blessed are they which do hunger and thirst after righteousness (and seek after Him): for they shall be filled.

7 Blessed are the merciful: for they shall obtain mercy.

8 Blessed are the pure in heart: for they shall see God.

9 Blessed are the peacemakers: for they shall be called the children of God.

10 Blessed are they which are persecuted for righteousness' sake: for theirs is the kingdom of heaven.

I have heard many say that they will be saved by grace...but I don't believe grace alone is enough....we have to do our part. It isn't enough to say you have faith, you have to act on that faith.

Matthew 5:16 (King James Version)

16 Let your light so shine before men, that they may see your good works, and glorify your Father which is in heaven.

It is through your works that you will be saved....and those works are the service to your fellow men.

I have seen many good works, and I am grateful that My Heavenly Father has blessed my life through the actions of others especially those children who have incredible weakness (and amazing strength) and their families. Our lives have truly been blessed.

Friday, June 25, 2010

The Magic of a Wish....


I am so tired right now that I probably would do much better to leave this post until later, but I know a lot of people are waiting to hear about our trip. About 9 months ago, my son Ethan, made a wish to go to the Wizarding World of Harry Potter. Just about a month ago, we were invited to also go to Disney World with Kurt Warner in conjunction with Ethan's wish trip. Terry and I weren't sure about it, but Ethan was all for it so we said yes....What an amazing and incredible experience it was to spend the week with 9 other wish families and Kurt's family. Every day was full to the brim with fun activities and good company and such very special people. I think my family earned the title of "thrill seekers" as all my kids braved...and mostly loved rides like rockin' roller-coaster and tower of terror. Chloe tried to cast a spell on herself with her wand (from Olivander's) to make her grow the two inches in height she needed to go on the Forbidden Journey, which the other kids went on at least twice. Ethan's was working his own magic, charming everyone with his cheerfulness and sweet smile and quickly built special friendships with Kate, Gloria, and Kurt's daughters Jesse and Jada (and Brenda bestowed MANY kisses on him too!). Volunteers Mark and Krissy took Mark, Helen, Chloe for an evening of fun and we had a special evening with Ethan at Give Kids the World where we were able to connect with Gage's family. It was an amazing experience....we could never have done as much on our own. Truly and experience of a lifetime!

Tuesday, June 1, 2010

Promptings of the Spirit

I wasn't sure if I was going to share this experience, because it seems such a small thing to me and I have posted about this kind of thing and how important it is to me before. Yesterday I was in the grocery store, just picking up a few things. I was standing in line (a pretty long line) to check out behind a woman on a mobility scooter. I didn't know her or know anything about her, but noticed I was immediately paying very close attention to her, something pretty out of character for me in that situation. Something was telling me to listen, so I did, without question, because I knew I would never even let on a thing about it. I noticed when she was checking out she mentioned very quietly to the cashier that she may need to put some things back because she was not sure if she had enough money to pay for her groceries. Then she ran her card, and there was not enough money there. She removed several items from her basket, and ran her card again, again, it was declined. She turned to all the people behind her, who were paying very little attention and apologized that it was taking so long. She was a bit flustered I could see, and I had a feeling that I should just hand the cashier the money for her groceries....it wasn't a lot of money, and I had recently sold a rabbit that would cover most of it....and I rarely ever have cash on me....perhaps only one of maybe 5 times in the past twelve months that I have really carried cash to the grocery store. Not that it was "extra" money, but it was money that was not committed to anything at that point....other than this woman, who was desperately trying to find a way to pay for her groceries, so I handed it to the cashier. At first the woman did not understand what happened, but then she turned with tears in her eyes to thank me....I just told her to pass it on. The cashier told me how sweet it was of me and relayed a story from an email she had just gotten from the store network how this same thing had happened recently, twice, and she was very touched by my gesture. It was not a big deal to me, but it impacted more than one life. I really don't know how this very small and simple act will bless the life of that woman, or the people that witnessed this act of kindness, I will never know, but I do know that it is important to act on these promptings. I have said time and time again that there are angels among us....and sometimes we are the ones called to be those angels.

Sunday, May 30, 2010

I don't do well in crowded places....


I know it is a strange title for a post about my little boy's Baptism, but I hope I can explain adequately.

Yesterday was a very special day for our family, especially Ethan, the day of his Baptism. It is a day I did not know if I would ever see. Religion and faith has always been a touchy and deeply personal subject, even more so since I chose a husband who was raised in a vastly different way, faith, culture and country and it has never been something taken lightly (which I am deeply grateful for!) In my chosen faith, children are baptized generally when they reach eight years old. It is recognized that at this age children really start to make choices on their own and should have learned right from wrong and what it means to be responsible for their choices. For my husband, deciding ones religion, I think is a very adult choice, something I don't think he thought one would be mature enough to make at such a tender age. Not so long ago, he was resolute that our children were not going to be given the choice until they were older, perhaps, I think, until they were 16, when they would be legally an adult in the UK. I knew one thing, and that was that he thought eight was too young, and there are very few things in this world that can change the mind of this stubborn man I so deeply love.

Several months ago (perhaps quite longer, but this is when I really started to notice it), Ethan, who was already eight, started to express, in his very limited communication, how strongly he felt about baptism. More specifically that he WANTED to be baptized. Every time the very word was mentioned he would start dancing in his wheelchair, turn to look at me with pleading eyes saying "I want..." one of the few phrases he is able to articulate. I noticed at this time, just how frequently baptism was talked about. I told him that I knew what he wanted, acknowledging that I understood, but that he needed both parents permission and that his daddy did not think that it was a choice that children his age should be making and that he should talk to his dad about it. I fully did not expect the events that would transpire in the matter of days and hours that would follow, that adamant opposition would end in a change of heart, that my husband's greatest weakness (or strength, however you choose to look at it), this very special little boy, had the power and conviction in him to change a resolute mind. Now I really don't think it was just Ethan alone, maybe angels, but I definitely believe that fasting and prayer played a part in it, and faith above all else....and believe me when I tell you this little boy's faith truly did move mountains!

He talked to his dad, mostly with his eyes, and those few short words said in the purest sincerity, "I want...". It wasn't even slowly, though it seemed in slow motion, he went from the answer, "when you are 14," to "when you are 12," to "when you are 10," Ethan's eyes must have been so pleading speaking to my husband's heart, because then something I completely did not expect happened, he said, "I can see this is something that is very important to you, and you have been so persistent that I know you really want it, so I know it is what you really want, so you can be baptized if you want."

You have never seen a more happy and excited boy.

A lot transpired between then and now, but yesterday was the day. Nervous and excited rolled in to one neat little package and I had to put it in the Lord's hands because it was beyond my capacity to handle everything, to contain all that was going through me. More people came than I expected....but despite a large turnout, the room felt unusually packed, and me in crowds don't usually mix well....perhaps I have a social anxiety disorder....generally I would have the urge to bolt, but I was at peace in this room that was so full of love and support, surrounding this little angel, who was the one person in the world that could open the door for his brother and sisters to make the same choices for them selves if they decide they want to. I often wonder what his mission and purpose is in life, and I KNOW WITHOUT A DOUBT IN MY HEART that THIS was one of his important missions, one of the reasons he was sent here to bless our lives, just one more thing to convince me that we are never alone, we are always in the presence of angels, even angels unaware.

Monday, May 24, 2010

Who would have thought...

...harvesting potatoes would be like a treasure hunt for a 5 year old!!!! I can't believe how many little potatoes 5 potato plants will produce....now to replant all the ones that are too small to eat.

Dealing....

Before...

And after...

I am still tallying the figure for what we lost and it is in the ball park of $12,000. including the trailer (at least that is what it will take to replace our losses I think)....but I am dealing with it. They are pretty sure they caught the arsonist, who also burned another property up there. I actually think it helped that I spent the day yesterday sick in bed, so I had a lot of time to think, and at the end of the day, it was only "things" nothing irreplaceable. And I know the feelings of being violated and vulnerable will still be there, but I also realize that that is just something that happens in our world that is full of both good and evil, but I also realize it could have been much worse and I am so glad it wasn't!

Friday, May 21, 2010

Ashes....

Things have never come easy to me....ever. It seems that we have had to work hard for and earn everything we have.....and in a moment, a blink of an eye.....it can be gone. It took several minutes for it to actually register in me when my husband phoned this evening with bad news....news that someone had broken in to our trailer, and then burned it to the ground. We had nothing of incredible value there, but we really don't own much of value and as I said before, we have to work hard for everything we have. The one thing that trailer was for me was my peace, my escape that rejuvenates me when I have had all I can take, my solace...and our back up plan, a place to go if all else failed, and it is gone. I feel violated beyond consolation. It doesn't matter that it was insured any replacement will just leave me waiting for it to happen again. My little desert oasis hidden from the world was found and desecrated by a stranger who didn't look twice....he didn't take notice of four little winter coats that kept my children warm...he didn't take notice of the stocks of medical supplies that are used to care for my little boy, his special chair...probably the most expensive thing up there. He helped himself to our food storage...and sleeping bags that we had to save up to buy. One set of footprints in and out....such disregard. It was just a thing, the trailer, to him. But it was more to me, and I feel violated...empty....broken.

Sunday, May 16, 2010

Being Sensitive....

So, I don't want to pick on anyone, and I do understand where people would come up with the ideas they think....but I rather think it is wiser and more prudent to ask before assuming. Just because a child (or anyone for that matter) is disabled and physically not able to speak does not mean they are mentally handicapped. If there is ever any question about my son's condition and what he is and is not capable of, please do not assume, just ask.

His Official diagnosis is: Choreoathetoid Cerebral Palsy

This means he has a "movement disorder" related to damage in the basil ganglia and Hippocampus areas of his brain, this manifests in low muscle tone and coordination, uncontrolled movements, difficulty eating and difficulty with speech.

This is what he can not do at this time:
Eat enough to get the nutrition he needs by mouth (he is fed through gastrostomy tube)
Sit unassisted
Walk
Talk (limited articulation make it very difficult for him to be understood)
Assist in self help activities such as feeding, dressing etc.
Toileting is quite uncomfortable due to his low trunk strength, though he is fully aware of when he needs to go the the bathroom, so he is diapered.

This is what he can do:
Understand concepts appropriate for his age.
Answer yes and no questions verbally
Drive a power wheelchair using a head controller
Follow directions
Read (though we are not sure what level because of his limited speech and fine motor coordination)
Use a touch screen communication device
Identify letters, numbers, words, etc.
He understands right and wrong as well as consequences.
Communicate non-verbally through gestures and expression most of his wants and needs.

I am sure this is not a complete list....but just the very basics. So don't assume, just ask....

Friday, May 14, 2010

Summer Raffle


Time for a Raffle....

To welcome in summer!

For every $5.00 spent on new orders as of Friday, May 14, 2010 (excluding shipping).

You will obtain one entry for a drawing being held on June 4, 2010.

The prize is this beautiful hand sculpted One of a Kind 6 inch polymer clay baby.

This sweet baby girl has a full sculpted anatomically correct body and full sculpted arms and legs that are jointed at the shoulder and hips.

She will come dressed in her beautiful hand knit layette and tiny diaper.

She will be shipped to the lucky winner via priority mail with delivery confirmation.

Winner will be notified by email on their customer account!

Good Luck to all!

Please visit http://www.brightcreations.us to place an order!

Sunday, May 9, 2010

Mother's Day... Sigh....

Well Friday evening I felt a familiar and unwelcome pain starting in my right ovary, quickly getting bad enough that I didn't dare lift Ethan from his wheelchair to his bath bed to change him. I don't usually take pain medication for anything...not even after my c-section over 5 years ago, my one and only surgery, but I knew what the next few days would be like if I did not reach for the Vicodin. It left me in a fog for most of the day yesterday and that played havoc on my mood, so by yesterday evening I settled down with a book to ease my restlessness. It was nearly 10:00 pm when I found myself to the point of no longer being able...or wanting to keep my eyes open and I said goodnight to my husband and crashed in our warm comfy bed. Sometime in my unconsciousness, Terry had gone out to the store, to get ingredients for a dinner surprise he had planned. I had sworn he was in bed next to me snoring when the dogs were fussing at the nearly closed bedroom door and I stirred wondering if they need out to go to the bathroom. I was started to hear the beeping warning the security system made when ever one of the doors opened and I thought someone was in the house. I turned to find his snoring, sleeping body in our bed, but what ever apparition I previously saw and heard there was gone and the dogs were wagging their tails as there master returned home from his midnight excursion....so the gig was up.

I dragged my unwilling body to the kitchen where he eagerly showed me the spoils of his late night adventure and told me of his plans for my Mother's Day dinner. I was thrilled, even though it was normal for him to prepare Sunday dinner while I took the children to church....he has no idea what this small gesture means to me. I don't remember what I said to him, still very much wanting to be in bed sleeping and soon I must have found my way back there because I remember nothing else until first light this morning. It is in the quiet solace that I enjoy my mornings when the summer is almost here and the sun is rising much earlier than anyone else in my house would like to welcome it, but it is in these quiet moments that I find the strength I need to get through the day....my best days are when I am up before everyone, collecting my thoughts and enjoying the brief moment of peace.

Memories of Mother's Day Past....




And Mother's Day Present:






I feel so very blessed today!

Thursday, May 6, 2010

Resigning myself to the fact.....

....that youth is gone....I reach to grasp it and find I come back empty handed.

I can't say that I am sorry though I do miss it just a little....so here it is, middle life. A little sad that my arms will never cradle a newborn that belongs to "Me". But ever so grateful that I won't have those tired days after I have been up all night trying to sooth a fussy baby. And not quite looking forward to children in their teens, though I am getting my first tastes of it from an almost 9 year old boy who is trying very hard to make it very clear that despite his complete dependence on me he still has his agency....I hate the consequences....when I lost it after he got angry and kicked me with his "body armor" (AFO's) on....it hurt really bad and I made sure he knew it, the felt horrid for shouting at him as loud as I did. I would like to think it is an isolated event, but I know it's not as this behavior is becoming more and more common and it shocks me every time, even though I tried to prepare myself that this time would come....

I find myself wanting to spend more and more time up on out land, so my kids will at least have a chance at some of the freedoms that I had as a child. I hate how they are confined by the conditions of modern society and as much as my desire for "community" is strong, I cringe at the thought of letting my kids out of my sight in our "city home"....I hate the fact that they have not been given the liberty of a sleep over at a friends, things that I know I enjoyed as a child, at least when we are on our land they can run free without much worry and they are not confined to home. I find myself looking forward to when they are grown and they are responsible for themselves and at least comprehend the enormous responsibilities on their shoulders. I both look forward to and dread the whole high school experience, which I fondly remember in my own life was more of an escape than a challenge an escape for the reality of my life at home which was troubled and I hope beyond hope that it is not an "escape" for them as it needed to be for me because I truly enjoyed much of my teenage years and keenly I am aware of how different my children are from me and how I was.

Just lately I have been trying to reclaim some of the simple pleasures that I had then that I lost while growing up, things that were my saving grace back then, like my music and my writing....I find myself needing those escapes right now with the added stress the court system is in my married life with raising a child with incredible physical challenges. I feel violated as a parent by them, sometimes that I have no rights at all, regardless of how good of a job I am doing, and the fact that I know my child better than anyone or the fact that we truly do have his best interests at heart. This makes me incredibly angry, and it strains my marriage because there is nothing me or Terry can do about it, short of giving up everything we have works so hard for.

I also struggle spiritually, knowing who I am, and where I want to be and dividing myself between the nurturing I know I need personally (spiritually) and what I am keenly aware of what my marital and family relationship demand. I need to find a balance....I need to find peace which just lately seems impossible....I love the time my summers give me with Terry and with my children, but this year I find myself dreading it just a little and I feel guilty that I might be being just a bit selfish.

It doesn't help my mood at all that Mother's Day is practically here and it comes with a lot of mixed emotions....in fact that is tearing me apart inside....I am to terribly hurt to just forgive and forget because doing so means letting go entirely and accepting that I never will have the relationship with my own mother that I am so desperate for my own children to have with me.

Youth is gone....midlife is here....35 is just weeks away....and I am going to be fine if I can just find a little peace and accept that not everything can be the way I want it to be.

Wednesday, April 7, 2010

Don't even want to write....

....because I don't want to be seen as "the complainer"....but feel like I am that person laying on the street who has just been kicked in the gut by a thousand boots of an angry mob.

Sunday, April 4, 2010

Easter Weekend

Spent a lovely couple days up north at our land.....so funny to drive through the Arizona mountains in APRIL and see TONS of snow. The kids enjoyed an Easter Egg Hunt on our property and a "treasure hunt" for petrified wood and Indian pottery shards.....even found an arrowhead. They had so much fun, at least everyone but Chloe who decided to sneak way too much candy that she made her self miserable and violently sick. I *THINK* she learned a valuable lesson but we will see. I think we have now decided that we really want to get a move on things up there as it is so peaceful. Perhaps in the summer after we get back from Ethan's Make a Wish trip we will start working on building some buildings for storage and enclosures for animals and gardens so that we can make it more livable on a long term basis. Not that we are planning a move just yet, but perhaps an every weekend escape away from this fast paced life.....it eventually may become permanent though!

Wednesday, March 17, 2010

Healing...

Yesterday I felt incredible strength and courage....and I KNEW I was not alone.

I will fill my life so full of light that darkness will not be able to find it's way in.....I find it curious that even a tiny light has power over darkness....but a tiny darkness can not power over light...the darkness has to completely envelope and the light extinguished.

"the Spirit giveth Light to EVERY man that cometh into the world...."

Hence, we are all beacons because of the divine light of Christ which is in us.

"Let YOUR light so shine before men, that they may see your good works, and glorify your Father which is in heaven."

Tuesday, March 16, 2010

Happy Anniversary


Just Point Me in the Right Direction....

And I will get there.....working on making my blog pretty and uniquely me. Thank you so much Vicki for pointing me in the right direction to get the job done!

Thursday, March 11, 2010

Perfect Love, and the deceiver....

I am trying to figure out why, where it began, where we all get the idea that "we must be perfect"....I see it in my children and I wondered if I have misled them somehow and I wonder how I can correct this problem, because we need to change our hearts and our was of thinking so we do not get into a cycle of self destructive behavior. We can strive for "perfection" but we need to realize that it is a very long process, and something that is not even attainable on our own. I need to switch our thinking to "trying our best in all things, knowing that we will probably fall short and THAT IS OK". It is not about who wins, it is about how we play the game....BUT the deceiver is doing an excellent job. He plays on these ideas we have so masterfully. He lies and we believe him. We get caught up in a negative cycle of imagined failure and the claiming of shame and guilt that is not our own....it is a trap, and it is the most fantastic trap and it works so well. There is another side though, one that is hard to see from the dark pit that we so often find ourselves at the bottom of. Our Heavenly Father's Love is Perfect and if we LET him, he will make up for our short comings if we just embrace the fact that we are not perfect, we can not do it on our own, but if we do our best in all we do (and acknowledge and take responsibility when we don't and change our ways) he has ALREADY "paid the difference" for where we fall short. The deceiver has been working hard on me lately, trying to discourage me from the path that I know is right, playing on very real emotions and concerns, but twisting them to make me feel bad about where I fall short....which is why I am writing this post, because perhaps if I write it down, I will be able to read it and remember when I am feeling a little bit of that shame and guilt that I will remember that our Savior has ALREADY paid the difference, and I just have to try my best. I am not capable of doing everything and it is not about being perfect, it is our effort that counts. My heart is in the right place and I need to allow him to share my burden, because HE CAN NOT just take it from me....I HAVE to LET him. *I* feel My Saviors LOVE, in all the world around me. I taste it in the wonderful food I am able to grow in my garden. I hear in beautiful music that calms my soul. I smell it in the clean air after a storm. I see it when my husband looks at me. I touch that love when I held my newborn babies. I feel his love when I acknowledge him in all things.

Rising from the Ashes....

The last few weeks have been both AMAZING beyond words and incredibly trying for me. I have been lifted up. I have experienced incredible heartache, tears of joy and sorrow. I have pondered and I have prayed. I have searched the depths of my soul for answers that still allude me, but found others easily. I have studied, and meditated. I have been confused, and I let go. I have opened myself to new possibilities and I have thanked my Heavenly Father. I have confided in friends like I have never confided before on subjects so tender they still have the power to consume me, and they have responded with such gentleness and sensitivity. I have learned that this healing process will probably not be complete for a very long time, but I am embracing it, and I can see that there is a light at the end of the tunnel and I can see that I am not alone....I am like a Phoenix though I have yet to unfurl the magnificence of myself made whole.

Wednesday, March 10, 2010

Tuesday, March 9, 2010

Children need to be taught to be charitable....

It is good to teach....but it is better to do.
Some of God's children on earth were born with a natural tendency to be charitable. The rest, need to learn this quality and embrace it in their hearts. And it is not something that just comes to us over time, it is easier if charity is a part of our lives from a young age, demonstrated by our parents, teachers and leaders, then it becomes second nature. I have a special child that was born with a charitable heart, but my other children have learned charity by watching me. My charity work began long before they were ever born, when my own troubled childhood, a high school service project, my passion for babies, especially those born too soon, and my God given talent for sewing led me to a group called Newborns in Need. I could never know at that time that I (or my children rather) would be the recipient of items so lovingly made by volunteers of this group when three of my four children were born ill and spent time in the NICU at a hospital I had regularly donated to. Also I had made donations to the Make-A Wish foundation and done charity fund-raising events for the organization before I ever knew my own little boy would have a wish granted. Charity was healing, charity filled an emptiness in my heart after abuse in my childhood, charity helped build a fragile self esteem, charity helped to calm a troubled spirit and filled my time with a positive activity that could have just as easily be filled with a negative one. Charity gives you purpose, And most importantly, through charity we are acting as our Heavenly Father's hands here on earth....we are his Angels, his Miracle Workers, and what greater honor could we give our children than this: to be angels unknown. And what better way to build character and love and compassion for those who are less fortunate and help others bear a heavy burden as our have been lifted by our Savior. I have a small bit of insight on what those tiny items of clothing meant to a new mother who's baby was connected to all kinds of machines just to sustain life, those clothes bring comfort and ease very real fear....and that wish has brought excitement and hope to my child, a child who is so brave and strong and happy just to be what he is, who doesn't resent that his body does not work even though his mind does and he is very aware of how different he is....but HE is not the one who is broken, he is the most perfect, loving and giving person I know and he gives me strength through his courage and willingness, he "gives" just by being here in my life. He touches lives without ever having to do anything other than smile, though he does so much more. His voice is loud through his actions even though he can not speak, not the way you and I can. He has power within him that we can not even fathom to change hearts to those who let him take part in their lives, I have seen it, and I have marveled at it, and I have rejoiced in this and I am HONORED above anything to be part of his live and blessed with the strength I have gained from being a mother to a Giving Child. My other children have learned by this example to have charity in their hearts, a lesson that I have always tried to demonstrate and teach them through my work, but could not be better taught than by their brother, a small child like them who is so willing to give.

Monday, March 8, 2010

Progress

Only my fourth post today....but, I neglected to post an update on Ethan, who finally after waiting more than six months was seen by the Doctor in Physical medicine.

First: Ethan gained 9 pounds since his last visit at the hospital in August....this is simply amazing and the only thing I can contribute it to is the Hippotherapy.

Second: The Doctor agreed that Ethan should be on a trial of Baclofen to see if it helps him control his movements....and if it does he should get a Baclofen Pump (major progress!)

Third: Ethan is finally getting AFO's and a Brace for his back and the doctor thinks he may be able to st on his own and maybe even stand! (something I wrote off years ago, but with all the progress lately I am even hoping that someday he might even walk with a walker!)

There will be....

There will be....no more skeletons in my closet....
And there will be no more demons within me....
And this hard day will not discourage me....
Nor any hard day that I have yet to endure....
I will not stay silent and pretend the silence protects me....
I can not be broken, because I am not yet made whole....
And once I am whole I will never again let myself be broken....

Ashes....

I have always been a firm believer that it takes a community to raise a child....there is simply now way in our day and age for any set of parents to have all the life experiences to be equipped to handle everything that our children will come in contact with and experience....and in these times we can often feel alone and confused, and perhaps even feel like we are out of our own minds, when actually we are not. With technology and our current situation in the world I find, as have many others, that our children are exposed to far more and at a younger age than we ourselves were exposed or encountered similar situations, therefore, we find ourselves at a loss when things do not go as we, as parents, have planned and we find ourselves in uncharted territory.....but all is not lost. I am so glad that I was able to help a friend today understand the feelings of her own child, who she was struggling to understand through the "ashes" of my own childhood, or adolescence to be exact. I call them "ashes" because they are burning feelings that had at that time in my life and they worked themselves out and cooled and are now are gone. And I am so glad that I was able to do this, because he simply is a delightful young man, who probably has difficulty even understanding what he himself is feeling, and therefore has difficulty expressing his thoughts appropriately, and acts out because of this....I know that anger, I went through a similar situation when I was about the same age....and I said the same things he did to his mom and acted in much the same way. I wonder if my mom felt as crazy and helpless as his mom did as I know that my mom probably had no one that had gone through the same thing that could help her understand what I was feeling, even though I couldn't even explain why I felt the way I did in that situation. As parents, we all know that there is no "manual" that can tell us how to fix everything, why our kids do and act the way they do. It doesn't help that every child and every set of circumstances is different either....but it does help to know that we are not alone and that what our children are feeling, and expressing is normal and we "are not nuts". We are not drowning, we just need a little help and encouragement, a little bolster or life-vest in this vast dark ocean that can go from calm to tempest in the blink of an eye.

My Treasures....


My sweet children....
My greatest delight
My love for you has only grown
from the moment you were born
I love your each discovery
Your amazement and wonder
Even when you are naughty
When I have to correct you, and guide you to where you should be
With each new stage my heart grows to accommodate
As my love for you expands
You are my diamonds
More precious than any gem
You are my every treasure I could hope for
and more.....

Wednesday, March 3, 2010

I want *MY* computer back....

As much as I have appreciated having this computer to use....I want MY computer back....you know the one that has my photo editing software, and all the other programs I use that are NOT on this computer.....so MISTER BRIGHT, if you are reading this, AND you do not have time to work on my computer.....please tell me what I need to do so I can fix it so I can post updates to my website and edit all these beautiful pictures I have taken with my new camera....so I can personalize my blog so it is *pretty* rather than boring....where I don't have to worry about you unplugging things I use and taking the hub (or what ever it is called) to work and not bringing it back for days or weeks or months.....I *know* my computer is old, but I like it, and I like how my old programs work and I am used to them and I don't want to learn how to use new ones....PRETTY PLEASE!!!!!

Tuesday, March 2, 2010

Excruciating.....

I have NO idea what I could possibly have done to my back....other than lifting Ethan in and out of his wheelchair and in and out of bed. When we got back from the Highland Games on Saturday my back was a little achy....on SUNDAY....I couldn't even really get out of bed and I think staying in bed was probably not the right thing to do either. Well I had the brilliant idea yesterday that all my back needed was a nice long walk....WRONG! After a LONG walk (which I am really glad I at least got Chloe out of the house and let her play at the park a little) I was crippled....Tylenol was not even touching the pain even while alternating hot and cold packs so by the time Terry got home I desperately needed to take a vicodin..... which I never take pain meds for anything, but was glad I still had some from my ruptured cyst. It only took about 4 more hours of pain after that before my back muscles started to relax a bit and then I was able to get and ok night of sleep, and I am a TINY bit better this morning, but am afraid to do much of anything even though I KNOW sitting can't be good for my back either! I need some distraction.....

Friday, February 26, 2010

Bucket List.....

Visit as many of the wonders of the world as I can ( I have seen the Grand Canyon many times, and I have been to Stone Henge so far)
Do Humanitarian work in either Africa or South America
See stem cell therapy become approved treatment for children (any adults) with Cerebral Palsy
Parent a child(ren) (through adoption) that may not otherwise had the oportunity to have a forever family.
Play the bagpipes
Have a honeymoon
Build a house on our land
See my son outlive anything the doctors could have predicted
Get my degree, either in nursing or special ed
Push my grandchildren through Hyde Park in a 1967 Wilson high coach pram
Be to the point where we are completely self sufficient (other than Ethan's ongoing medical needs)
Spend a whole day where I don't have to worry about anything or anyone, maybe relaxing in the hammock and read a book uninterrupted.

Thursday, February 25, 2010

Special Angel Girls, Special Angel Boys....

So I was very motivated this morning....I got up from infront of the computer and washed the dishes and started working on getting the kitchen tidy'd so that when Nancy comes today, she can focus on the rest of the house rather than the kitchen sucking up all her time....also I wanted to have a clean place on the kitchen table to set up my sewing machine and get a few projects done.

THEN...

I decided that I would just check my email because I am having a problem with a litter of rabbits which I would really like to get solved ASAP, then I noticed something was wrong with my blog feed on facebook....then I found another blog....a blog about special needs adoption, something my husband and I have been working on. But this one had a photolisting for kids with Down's....oh how I would love to bring all of them home. As it happens, my husband would like to focus on children with CP like our oldest son, but I have such a soft spot in my heart for these sweet little kids. Not to mention that they were all international adoptions, and I have next to nothing to spend on an adoption. I have a big heart, but a tiny pocket book like so many in these difficult economic times....and without subsidies, an international adoption would be impossible. I guess I just need to push forward with our current plan and finish our homestudy for a special needs fost/adopt right here....but if I won the lottery (pretty impossible as I don't play) I would be bringing home atleast three or four of those sweet faces home to be a part of our family.

I guess I had better get back to what I was doing :-(

Wednesday, February 24, 2010