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 ;-)

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.

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/

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.

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!

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.

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.