Courage

When Doctors have the courage to speak the unspeakable and tell us what no parent ever wants to hear, they give us the gift of quality time with our children.  We hope that the web of support they have given us through treatment doesn’t end with this new phase of life.  For those of us who choose to take our children home from the hospital when western medicine has failed, we are not taking them home to die…we are taking them home to live.

 We bring our children home to live and we protect them with fierceness and strength as we compress a lifetime of happiness into the little time we have left.

When Doctors have the courage to speak the unspeakable they set in motion the vehicle of support that will drive us through the waters of end of life and bereavement.

When Doctors have the courage to speak the unspeakable we aren’t hearing the words Palliative Care for the first time over the phone after a year-long battle of surgeries, chemotherapies and radiation.

When Doctors have the courage to speak the unspeakable, a pediatric hospice nurse meets us at our door our childrens pain and ease our burdens.

When Doctors have the courage to speak the unspeakable it allows our relatives to fly in from out of state, allows parents to get the support that’s specific to our needs, allows us the tools to have the conversations with our children that need to be had.

When Doctors have the courage to speak the unspeakable, they offer families the opportunity to live fully.



Confessions of a Care Giving Parent

In between treatment we find ourselves in offices that reek of lavender and sage, where lights are low and “practitioners” only take cash. Where people talk in whispers as we glance other faces like ours: eyes wide, mouths shut to muffle the screams of terror that well up inside of us day after day as we do our best to care for our critically ill children. We come away with tinctures wreaking of dirt, little bottles of homeopathic pills that we hope will give our children some relief from the nausea, inflammation, itching, and insomnia….  Please help us.

We travel dirt roads deep into the forest, meeting in Tee Pee’s, taking part in “Sweats,” meeting with tribal elders, hanging on their every word, “Massage her with olive oil every morning, supplement almond milk for regular.” We accept prayers; get on the circuit with the Catholics, Christians all the groups that are asking God to heal our child. We throw pennies into fountains; feel pangs of guilt for deleting chain letters- the possible missed opportunity. Desperate.

 We are willing to do any thing that doesn’t cause more harm; Energy work, qigong, calostrum from cows, color, laser, massage therapy, acupuncture.  We log hundreds of hours online searching for a cure.  We funnel our funds into supportive therapies, many of which don’t take insurance hoping that this will be what makes our critically ill child better. Please let this work..

We accept donations from friends, organizations, even strangers to keep roofs over our heads, clothes on our bodies and gas in our cars. Just a little more time.

 This is not something most of us care-giving parents speak of, but in the midst of desperation, there beats within us the determination to give our children the best life possible. Make every moment count.

We shield our children from the dark so they may soak in the light. We plaster smiles on our faces during the day; our hearts bursting with gratitude for the incredible gift that is our child and break in the sea of uncertainty that is their life. In the night, when the house is quiet and everyone is asleep, we lie awake watching the rise and fall of our children’s chests, wishing God would take us instead.

Then we return for the next hospital admission. Our sweaty skin shining with olive oil, prayers fill our heads, as we humbly, yet hopefully, sign in for the next treatment.

Valentines Day

Valentine’s Day is a day for lovers, a time to celebrate our passion for one another.  But what happens after our child has died?  Our innocence is lost and it takes every ounce of strength to be civil or even interested in what our partners are saying.

What happens when our psychological energy is consumed with the memories of our child and it is taking everything we have just to get through the day? What happens when we can barely look at our spouse because it reminds us of the dream that was our life, a dream that evaporated the moment our child took a last breath?

What we do is follow our own breath, let it take us deep inside ourselves to20find the love and gratitude for the history we have shared with our partner.  We take this time to acknowledge that our partners experience the same love we have for our child; many of our memories are theirs as well.

This Valentine’s Day is an opportunity to remember the love we have for our child and the magnificence that our love created.  Know that we have the ability somewhere deep within ourselves to rise above the loss just long enough to create something that comes from our hearts, even when they are broken: a collage of our family, a table decoupage with our pictures, a necklace engraved with our children’s names, a new remote control so our spouse can continue to zone out on the television, a quilt made from our child’s clothes, a rose bush in the garden that is our child’s favorite color.

Or we can wait until it’s Valentine’s Day and buy massive quantities of half-price chocolate and eat until we fall into a sugar coma, sleeping off the hangover as we hope to be more up for Valentine’s Day next year.  We all have choices in this life, I believe in the human spirit and that we are all trying to do our very best… whatever that may look like. So do your best to love yourself and know that the love, passion, and energy you once felt for your partner will begin to flow yet again.

Lisa Buell is a writer, activist, mother of three and parent of two. She works with Children’s Hospice and Palliative Care Coalition, Partnership for Parents www.childrenshospice.org , as a parent advocate bringing a parent’s perspective to the development of palliative care programs and policies. To contact Lisa email her at lisa@sharingwisdom.us

Mantras

A mantra is a sound, syllable, word, or group of words that are considered capable of "creating transformation."

Mantra’s can be done anywhere, just take a few minutes to set your intention and develop the mantra that works for your situation. Here are several examples. Feel free to state them out loud or silently, repeat them and feel if your mood shifts.

I am perfect, whole and complete.

My child and I are connected always.

I carry (insert child’s name) in my heart.

(insert child’s name) is with me always.

My family is safe.

I keep my heart open to love.

I will always be (insert child’s name) mother/father/relative.

When I sleep, I rest.

I embrace my tears.

I allow myself to be happy.

I allow myself to be vulnerable.

I am healed in all ways.

My life continues to be fulfilling.

I am a good person.

I belong.

I know I did the best that I could with what I had at the time.

I will sleep when I am tired.

I breath through my sadness.

I continue to talk through my tears.

I am supported.

I ask for help when I need it.

I make myself, my health and my heart a priority.

I will see (insert name of child) again.

I tap into the energy of the universe.

What will be healed will be revealed.

I am a child of the universe.

We are all connected.

I breath deeply and appreciate the day.

I am grateful for my life.

Sometimes the thoughts and feelings of grief would take over and spin in my head. It was helpful for me to have something else to shift my conciousness. Maddy’s Mom-

What To Do When You Don’t Know What To Do

Days bled into weeks and sometime months after my daughter died. Often I’d find myself caught in the trap of the couch or turning round and round in the kitchen; it was like I was short circuiting.  I mentioned it to my friend and she said that maybe a list of things to do when I didn’t know what to do would help me get unstuck. Here is the list that I had posted up on the fridge. There were many times when I was stuck in bed and heard it call to me from the kitchen. I have to say that this was the silliest but most practical tools that helped me through the toughest parts of grieving.

• Let yourself cry
• Go for a walk through the neighborhood, on the beach, through the harbor, in the mountains.
• Call a friend
• See the sun
• Go for a swim
• Read
• Write
• Garden
• Quilt
• Get a massage
• Go out for lunch
• Get a pedicure
• Make a salad/popcorn
• Drink lots of water

Everyone has different needs, write down what you think will help you to shift your thinking.