CHRISTOFER’S STORY – A CHILD WITH A BRAIN TUMOR

“WHY DID I FALL”?

Picture a perfectly healthy three year old boy playing at a park with his dad observing him close by. He was running along a path and for no apparent reason he fell. Now, Christofer being the smart boy that he is must have been totally surprised as to why he fell. He turned around and ran along the path again and purposely fell at the same spot and looked around. Was there something he tripped over? No. He repeated this exercise one more time just to make sure. Again he could not determine what caused his unexpected fall. Then, he went up to his dad and asked him, “Why did I fall”? Well, dad did not know but in reflection realized that that fall at the park was the beginning of his son’s fateful journey with having a spinal brain tumor.


ESSANCE OF HOPE

This experience happened in June and it took until September to get Christofer and an MRI which diagnosed the lesion on the top of his spine. In six short months, Christofer has debilitated to an infant status, unable to walk or eat on his own and back to wearing diapers. His loving parents have been surrounded by a myriad of medical practitioners, family, friends and spiritual healers. All intervention from modern Western technology, alternative /holistic treatments available to them have been tried. Nevertheless, his latest MRI indicated some growth in the tumor which is now about two inches wrapped around the top of his spinal column at the base of his brain. While his is unfortunate, the overwhelming essence of hope still embraces his family and expanding support group.


SENSE OF GRIEF

It is naturally human to convince yourself, when in this dark valley that there is still hope. Reaching the prognosis of survival in young children is possible due to a child’s placidity or ability to replace body cells in a short period of time as compared to older children or adults. But, what I know for sure is that catastrophic experiences like this pull people into a sense of grief.
STAGE OF SHOCK Elisabeth Koubler-Ross told us the following “Stages of Grief” that apply whenever catastrophic experiences occur. The first is shock. Discovering that your child has a devastating disease would expectedly put you in shock. It feels something like this. You actually have a since of floating as if you are removed from reality. The best tangible example is that it’s like watching a movie of your life. Something has happened in the movie which you do not like and all you want to do is rewind, go back to yesterday, last week or any time - for God’s sake - before this happened. As a friend to those at this insane place, the best thing you can do is just listen “with eyes of hope”. Don’t judge. Don’t try to fix. Just listen and be there bringing your spirit to theirs.


STAGE OF DENIAL

The second stage, denial permeates your every fiber, you may even bargain that maybe it’s not so awful. The mantra is, “we will fight this thing and get through it”. This is where research takes over. You will slave on the internet, look for trial studies, go to the best research library in town and find out all you can about the condition that you are now planning to tackle like David vs. Goliath. As a friend of someone in this “insane” stage, you can help with the research, find what you can. Get real by starting fund raising if needed, write letters and put up signs if necessary. This is showing support.


STAGE OF ANGER

Then stage three, the tough feelings of anger, are the hardest to face. For some, depression will set into their souls. It is so hard at this point, to not let your anger turn to blame because blame can turn your life into a monster with a life of its own. Focusing on the origin of love that made this child in the first place helps. Friends can do their best help here by letting the person purdge, listen to the tears and hard language. Since their energy is so focused on aid to the one struggling anything you can do is appreciated. Getting groceries, washing the kitchen floor, doing some dishes all helps. The work to be done by the family is embarrassing positive affirmations and clearing caustic feeling which takes all their energy.


STAGE OF ACCEPTANCE

Eventually, the realization hits you. Acceptance is the next mountain to hurtle. It is like climbing Mt Everest. Every day you wish were different, easier, but reality sinks in and, of course, the miracle of reversing the disease is the desired results. After a while, waiting all day to see a doctor for ten minutes for a tiny glimmer of hope becomes the obsession of your life. And, needless to say, each day brings more evidence of the fatal outcome. At this point, and this is the definitely the hardest thing of all, the family needs to tell the child that it is okay to go to God. Hugs and hand holding help so much as the family reaches this vortex. Friends give so much comfort at this time when they leave food at the door step, baby sit any other children, do laundry or whatever it takes to help out.


STAGE OF FORGIVENESS

In the end and although it is not easy, it is best to forgive ourselves, God and anyone else we blamed. In reality, forgiving is a long term process that involves a step by step shift of the soul. Friends help by encouraging journal writing, support groups and counseling. And, given that the child does not survive, his transition into the spiritual life needs to be acknowledged as a purposeful life completed. It is so important that friends write notes of episodes remembered as though they were precious jewels to be cherished forever. In time, everyone just knowing this experience will understand the wisdom of the Devine for this gift of compassion.


MESSAGE FROM THE LIGHT

As someone who has experienced a brain tumor of a loved one, I just know the inertia it can cause. I know too that Christofer’s family and loved ones as well as anyone else going through this type of trauma of seeing a loved one struggling for life can give you invincible strength of empowerment to do amazing things. I send you this “message from the Light”, knowing the essence of Spirit and all the angels are present with you at your time of need.
Peace and blessings Diane Hawkins Summers
Author of Parenting Outside The Box, Honoring the Spirit in Your Child For workshops and speaking engagements call 760-728-3222

With the holidays over and the Christmas items all tucked away it just may be a good time to organize your child's room. In fact, whenever a child has a transition time, it really helps fill the child's spirit to validate the shift that is taking place by making adjustments to his room.

I happened to be at my sister's house on New Year's Day when she said, "Would you like to help me clean-up Alisa's room"? I had been noticing the 'kid clutter' and was so happy that I was asked to help out. Alisa has just turned six and was living in the room decorated for her when she turned two. Picture this. It had an age appropriate black iron canopy bed with pink drapery hanging over the top, a vanity, a corner shelf, free-standing full length mirror and bench to match. Then there was newly inherited adult level dresser and two end tables in natural wood from her grandmother's estate. And, lastly there was a white book shelf that was packed. This was a case of TMF - too much furniture. Another factor is that Alisa is the third girl in the family and her room had become a place for her older sisters to put their discarded stuff. I'm not kidding when I tell you that Alisa's bedroom was packed.

My first step was to talk to Alisa and ask her what she really liked the best. Of course, her new pirate ship was really appreciated, the new High School Musical dolls that she had not even opened yet is what she cherished the most and her Karate belts and outfits were prized. The many old Barbie dolls were something she only played with sometimes and one item pushed into the back of the closed that she cherished was her older sister's American dolls and some really nice accessories of a small table and tea set. So we arranged for her to play at a friend's house while we got to work.

I asked her dad to run over to Target and get some bed raisers and three under-bed storage plastic storage boxes. The first things to go were the draped pink fabric that adored the canopy bed and the bedspread and sheets went into the laundry room for washing. Then we started to make the following piles: things to give away, things to stay, things to throw away and things to be saved as treasures. We also started to figure how we could make some more space in her 12 x 12 foot room. We put the bench in the hallway with a couple of dolls which looked surprisingly great! One of the older sisters got one of the end tables and full length mirror. The book shelf got dragged into the closet and then we got really brave. Now that we had some extra space we moved the bed with the head end in the corner and the foot end facing the door or angled into the center. When the bed raisers arrived we moved the bed up and noticed how much better the bed skirt now looked not dragging on the floor. Also, the higher bed allowed room for three storage boxes which were filled: one for shoes; one for her Karate belts and outfits; and, one for summer clothes. We attacked absolutely all the clothes in the closet moving the most used things on the lower bar. And, all the clothes in the dresser were organized as well. A little wall mirror that worked for her height when she was two was moved up. The High School Movie dolls were opened and placed on a table with her pretend phone. Cute! And the American doll with the tea set of her sisters got a special place on the far wall tucked in the space made by the angled bed. The pirate ship was put on the grandmother's dresser with all the accessories spread out for easy play. The cleaned sheets and bed spread were being put on when she returned.

When Alisa saw her new, big girl room she was so excited we knew our efforts were well worth the four hours it took. We gave her a drawer of her little things to sort so that she felt she was part of the process and just spent time appreciating her new space with her. Before she went to bed I did some story reading with her. The last thing I noticed she needed was a clip light for the bed so that she could read a little on her own before sleeping each night. Overall, it was a successful inexpensive way to do a transition change for Alisa.

Please tell me if this example has inspired you to de-clutter your child's room. I would love to hear your story.

I live in Southern California where we were recently hit with an extreme fire disaster. Thousands of people have lost their homes and many of us were evacuated, forced into temporary housing for days. From time to time disasters like these have happened in many parts of the country due to natural consequences of fires, hurricanes, earthquakes and tornadoes.

In our situation, many families were lucky to get out early enough and were able to stay with families or friends. In many cases, the place where people escaped to also was evacuated forcing many to find hotel rooms. Families with recreation vehicles packed up and moved into parking lots in safe areas. Still others ended up in shelters in high school gymnasiums, and athletic stadiums. Then there were all the animals. If you could not take your pets, you were forced to put them in temporary shelters. We were fortunate that the humane society provided a great place for our cat.

I was able to volunteer for a short time at the high school where I work as a teacher and found out that the children were having a hard time because they did not have any toys, games or items for crafts. I rushed around my classroom looking for crayons, paper, small children's books and playing cards and donated them to the people in the shelter.

Over 6000,000 people were evacuated. And, it accrued to me that many families could be helped with an emergency back-pack filled with a small sample of everyday things to keep their kids occupied in a disaster situation. Things that would be the most helpful would be at least one stuffed toy, a simple game, crayons, paper and age appropriate books. For clothing packing one pair of pajamas, a sweat shirt and pants and some underwear and socks would really help. You could then place this back-pack in the RV or trunk of your car. For grandparents, aunts and uncles making an emergency back-pack would be a great holiday or birthday gift for that child you love so much. Teachers can also make emergency pack packs as part of a safety unit as a class project.

While an emergency back-pack can help the immediate initial days of a disaster, I am also concerned about the psychological consequences facing the children especially those who have lost their homes, pets, relatives or friends. Maybe not all perished in the disaster but because of the disaster changes are forced to occur that were not planned like moving to a new location for housing. It is times like this that I like to reflect on Elisabeth Kubler-Ross' Stages of Grief: denial, anger, bargaining, depression and acceptance. When disaster smacks into our lives it is just so hard to believe it is really happening. This is why many people reluctantly leave their homes even when the danger is eminent. It was just crazy what my husband and I took and did not take and then there we were driving down our street at 3:00 in the morning not knowing if our lives would ever be the same again. For some of our friends who lost their homes, 200 in our town alone, the hardest blow is to see the house in ashes. It just makes you so mad. Why us? Why our block? Why our town? They may be asking themselves things like, why did I leave this or that. Then, they may fall into the blame game, blaming someone or something for what happened. Subsequently, bargaining starts and it goes something like this: we were so happy there; maybe we will never be that happy again; and, maybe we should just leave the whole area? Eventually, depression is expressed with sadness, tears, frustration and just missing what they had. Eventually, they will accept that the disaster has happened and they will just make the best of it. They may even find the fresh start to be a good thing. In the end, I really believe it is important to just forgive yourself for anything you feel you did wrong, forgive others and just forgive Mother Nature for causing all of it to happen.

To get through all this is most difficult for the adults; their loss is based on years of building a life. The children will manage the changes of the family better if the parents are aware that all these stages of grief will pass. That, of course the main thing is that the family all have each other. Focusing on all the wonderful volunteers that are out there helping them with donations and gifts from people they do not even know really helps. In the end, this whole experience will most likely inspire them to volunteer their time, talent and treasure to others in the future.

When faced with a tragic situation, talk about the steps of grief that the family is going through. For the children that are old enough, get them a spiral notebook and encourage them to keep a journal of the experience. For children who cannot write yet, have them draw pictures of their old home, where they are now, and their new home of the future. For some of the older kids, a disposable camera might be just perfect to document the process. By doing this, your children will see the magic of life unfold before their very eyes. Sing songs the family likes whenever you can. Make jokes of some of the little things that make you all happy. In time, your new home will take shape. You will all make a new experience for yourselves that you did not expect. Most importantly, you will understand that life is all about lessons and that the big lesson your family learned was love.

Diane Hawkins Summers M.A., is the author of Parenting Outside The Box: Honoring the Spirit in Your Child

1. Do not eat peanut butter while you are pregnant, and avoid feeding it to children under the age of five.

2. Try to consume hormone-free meats and meat products.

3. Eat organic produce whenever possible. Wash all produce with vinegar and water. Eat in-season fruits and drink fruit juices in between meals for optimal digestion.

4. Drink bottled water: spring, reverse osmosis, or distilled. Get a water filter for the whole house.

5. Use only nontoxic soap and cleaning products.

6. Do not cook with aluminum foil or aluminum cookware. Use stainless steel cookware instead.

7. Be careful of fluoride use and dental fillings.

8. Use olive oil and avoid partially hydrogenated oils in processed foods.

9. Microwave your food in lead-free ceramic or glass containers. Never microwave in plastic containers.

10. Limit soda consumption.

11. Stay away from artificial diet products. Use natural sweeteners instead.

12. Take vitamins, minerals, and herbal supplements for good brain development, strong immune systems, and healthy bones.