When she is in heaven

When she is in heaven

Our daughter was deemed to die, before she was even born, with Trisomy 18.  We fought an uphill battle, fighting for her rights to treatments and life.  Fortunately, we are at a phase of her life, where her medical professionals are handpicked (instead of taking whoever would be willing to help her), and she is flourishing against all odds that come her way. 

Years ago, I made a bucket list for all 4 of our kiddos.  We thought Kayli would have more challenges in marking things off, but we found instead, that she helped us to see all the things we and others take for granted and don’t even put on their bucket list.  To this day, Kayli has done everything on her bucket list, which also consists of all things on her brother’s bucket lists.  Kayli and her brothers have done more in their lives, than many adults have!  My hubby and I find ourselves the challenged ones, as we struggle to think of things to put on her bucket list, so we feel like we’ve given Kayli a full life.  The pressure was on us to do so, since the very first time a fellow human being told us that Kayli would only have a life of suffering and our family of regrets, even while we expressed our desire to not only give birth to our daughter, but to raise her as we do our boys.  The uphill battle has not been about raising a child with a terminal prognosis, nor of a medically influenced childhood….it has been a battle of wills between Kayli and those who had once not believed in her.  It has been a battle of mind, as the thoughts go through our heads; “is this the last time…”.  These thoughts come regularly, as we push Kayli in a swing, take a walk around the block, celebrate her birthday, sit her on a pony, take our cheerleader to her brother’s games, or are admitted to the hospital.  As the years go by, the fear has calmed, but the wonders never cease. 

I have been released of the fear of death, greatly due to the fact that my faith holds me to the understanding that while it is us who will cry, those who die will be fulfilled with peace and love, and free of any judgments, challenges, and harm, once home, with our maker.  While I find peace in Kayli’s, and all of our, imminent death, I find that I’ve refocused on what Kayli will say of us when she lives within God vs her present state of God living within her. 

I wonder if she will tell God she knows of our great love for her.  Is she proud of the choices we’ve made for her?  As I did as a child, will she exclaim what she would do differently in a parental role?  Will she only remember the great times, or will she remember lessons learned?  Would she say she wanted one more ride on the roller coaster, or hayride?  Would she wish she could have climbed that tree on her own?  Would Kayli sit on Jesus’ lap and tell him stories of the greatest moments of her life, or cry because she wasn’t done on earth yet?  Will she vouch for us and beg for us to join her in His kingdom, or will she know of His plan to keep us on earth longer? 

In truth, what will our boys say?  What will we say?  In this way, I think Kayli is no different than we are.  We are all children of God.  We are all challenged and we are blessed.  We’ve adapted, and we’ve been stubborn.  We have struggled, and we have found peace. 

If you were to look at Kayli today, you would see jaw stabilizers in her cheeks, a trach in her throat, eyeglasses on her face, a hearing aid in her ear, a feeding tube in her stomach….and a sparkle in her eyes.  You will see a will to live that is stronger than any other, and a depth to her eyes, that holds the secrets of her will to live.  You won’t see the appreciation for those who care for her every need, but you somehow know it’s there.  If you are open to looking past your expectations of what Kayli’s life “should be”, you will see the life lessons that she’s taught so many, as a selfless token of God’s love.  You will be Blessed to be in the presence of a child who could tell God, as she sits on his lap when arriving in heaven, that she has never caused harm to another, but has only shone them His love.  Kayli is likely to be one of the purest, who will ever go to heaven.  For this reason, many have called her His angel, on earth.  She has been granted the most Blessed of all lives, to be one of His pure souls, here on earth!  She will never sin, as we do.  Her life is simple (not complex like so many in the medical field claim her to be), yet most valued, as she has lived with a purpose, to share God’s love, unconditionally.  She is not the defective result of a fluke at birth, she is perfect.   She is a gift from God.  She is perfect for him, and perfect for us, in every way. 

Resources to share with,for, and help a grieving family

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Resources to share with, for, and help a grieving family: 

Funeral/Burial cost help   (negotiate price of funeral (with funeral home) BEFORE paying with funding assistance)  
1.  Local funeral home (some discount or free services for children)
2.  http://www.prenatalpartnersforlife.org/  (Headstone or Urn for children)
3.  http://www.missfoundation.org/family/funeral.html  (Help setting up and possibly funding a funeral/cremation)
4.  http://www.ehow.com/list_6741160_grants-pay-funeral-costs.html  (grants)
5.  Local churches or charities 
6.  http://kidswishnetwork.org/programs/funeral-assistance/ 
7.  http://www.afoofa.org/  (funeral costs)
8.  http://www.connorkirbymemorial.org/applyforassistance.htm  (Maryland and PA residents only)
9.  http://www.theunforgettables.com/burial-assis.asp  (southern CA only)
10. http:// www.thetearsfoundation.org  (funeral costs) (NJ,CO,SC, or Washington State only)

Setting up support
1. http://www.carecalendar.org/  (meals, sibling childcare, transportation, errands, answer calls/door, play with siblings, dishes, laundry/housework or yardwork, etc)
2. grieving family's local coupon organization (stockpile help)
3. Post an event on facebook and invite others to post Blessings/Memories
4.  Make a photo album/Memory book, print the Blessings/Memories and send one a day, week, or month to the grieving family to fill the handmade book so they can see the impact their child/family had on other's lives for days to come. 
5. Send out information to send pictures to the family's address of their child with yours/your family so they can post it on a board at the services.  
6. http://www.mealtrain.com/  (meals)
7. http://takethemameal.com/ (meals)

Monetary
1. http://www.giveforward.com/
2. set up a paypal account with/for the family
3. Give out the grieving family's address/set up a po box to receive cards, prayers, monetary gifts
4.  Set up a business account (you as the co account holder) at the family's bank and post donation information with obituary

Gift ideas
angel wings
personalized Christmas ornament (with deceased child's name)
a personalized teddy bear
personalized jewelry
donating to a treasured non profit organization
A scrapbook album of deceased child/memories
send inspirational words/phrases daily or weekly
a prepaid phone card
gas giftcard, fast food gift certificates, movie giftcards
(if coworker) donate vacation/sick time
plant a tree in honor/memory of ....
a personalized garden stone
a framed photo of the deceased child's name in the sand
Reborn doll 

Books

Empty Cradle Broken Heart
I Will Carry You by Angie Smith
Any of Cs Lewis grieving books


Do's

DO Allow them to express as much grief as they are able and are willing to share with you. 

DO allow them to express as much unhappiness as they are feeling and willing to share with you.

DO allow them to talk about their loss as much and as often as they want to. 

DO be available. to listen, to run errands, to help with the other children, or whatever else seems needed at the time. 

DO deal with the grieving individual gently and positively. 

DO encourage them to be patient with themselves and not to expect too much of themselves.

DO encourage them to not impose any “shoulds” or “I should be” on themselves. 

DO give special attention to the child's brothers and sisters at the funeral and in the months to come (they are often in need of attention which their parents may not be able to give). 

DO let your genuine concern and caring show.
DO offer specific help such as running errands, helping complete tax or medical forms, or helping to go through their loved one’s belonging.
DO offer to be a friend.
DO recognize that grieving has no time limit and varies from individual to individual both in the way they express their grief and the time required to stabilize.
DO talk about your memories of the deceased child and the special qualities that made the child endearing.
DO tell the family how sorry you are about the child’s death and about the pain they must be feeling.
Acknowledge the death through visits, phone calls, sympathy cards, donations, and flowers. 
DO Remember important days such as birthdays, the death anniversary, Mother's Day, Father's Day, and any other significant day, which may be difficult for the bereaved. A telephone call, visit, or card means a great deal to a bereaved parent.

Make specific offers to help, i.e.
i. I am going to the store. What do you need? 
ii. Can I take your kids on Sunday afternoon?
i. On Thursday I will be bringing by dinner for the family.
ii. I will take your child to skating lessons on Sunday.
iii. Can I come and baby-sit tomorrow evening to give you a break.
iv. Do you want to get out tonight to talk, walk, or both.

DO offer to take the children to schools, birthday parties, and extra-curricular programs.
DO immediately following the loss, take charge of the household and inform family and friends of the tragedy, help answer the phone, help dress and feed the children (if applicable), and set up a meal plan.

DO Call. Call often.

When you call the bereaved, ask, "How are you doing today?"

DO Appreciate that your bereaved relative or friend doesn't always return phone calls right away.
DO appreciate that nothing you say will ever make the bereaved parent sadder than the reality of what has happened to their child.
DO Talk in your natural tone of voice.
DO remember that when you phone, even if it is to only leave a message, the bereaved feel comforted by your efforts.
DO tell the bereaved family how much you care.
DO remember it is usually the simple little things you say or do that mean so much.
DO Listen.
DO continue to support bereaved parents well beyond the acute mourning period, even if it means years..
DO Congratulate the bereaved on good news while appreciating that they still carry a tremendous burden of grief.
DO Find local support through bereavement groups, church, synagogue, bereavement organizations and forward the information to the bereaved family.
DO Be sensitive that being in the presence of other children of similar age to the deceased may make the bereaved parent uncomfortable.
DO Give the bereaved time to resume the activities they participated in before their loss.
DO Know that effort of any kind is appreciated. 
DO Learn how to give good hugs. The bereaved need every heartfelt hug they can get.
DO Expect your relationship with the bereaved to change. When you are bereaved, every relationship is affected in one way or another.

DO Share your own good news with the bereaved. They still want to hear it.

Say any of the following:
i. Call me at any time if you ever need to talk.
ii. I can't begin to imagine how you feel.
iii. I am so sorry for your loss.

DO Feed and walk the dog who has probably been forgotten about.
DO Talk to your children about the loss.
DO Talk to your children about death and the rituals surrounding death.
DO Find the right time and the right materials to broach the discussion of loss and bereavement with your children.
DO Consult with your libraries and bookstores for bereavement reading materials for children.
DO Provide your surviving children with a picture of the departed child as a cherished momento.
DO Give children the option to attend the funeral.
DO Give children the option of visiting at the cemetery.

Dont's
DON’T avoid mentioning their loss or the child's name out of fear of reminding them of their pain (they haven't forgotten it!).
DON’T change the subject when they mention their dead child.
DON’T tell them what they should feel or do.
DON'T avoid the bereaved parents because you are uncomfortable (being avoided by friends adds pain to an already painful experience.)
DON'T let your friends, family or co-workers grieve alone. There is a tremendous sense of isolation and abandonment during the grief process. You can help by caring, by being there, and by being the best friend you can.
DON'T make any comments which in any way suggest that their loss was their fault.
DON’T point out that at least they have their other children (children are not interchangeable; they can not replace each other).
DON'T say "Your loved one is waiting for you over there," "God wanted him," "It was God's will," or "God knows best."
DON'T say “you can always have another child.”
DON'T say “you should be coping or feeling better by now” or anything else which may seem judgmental about their progress in grieving.
DON'T say that you know how they feel (unless you've experienced their loss yourself you probably don't know how they feel).
DON'T suggest that they should be grateful for their other children. Grief over the loss of one child does not discount the parents’ love and appreciation of their living children.
DON'T tell them not to cry. It hurts us to see them cry and makes us sad. But, by telling them not to cry, we are trying to take their grief away.
DON'T tell them what they should feel or do.
DON'T try to find something positive (e.g. a moral lesson, closer family ties, etc.) about the loss.
DON'T Allow your own fears from preventing you from offering support to the bereaved.
DON'T Fear that bringing up the dead child's name will create sadness.
DON'T Say, "If you need anything call me" because the bereaved don't always know how to call and ask for your support.
DON'T Be afraid if you make your bereaved friend or relative cry.
DON'T Think that good news (family wedding, pregnancy, job promotion, etc.) cancels out grief.
DON'T Have expectations for what bereaved parents should or should not be doing at different times in their grief.
DON'T Forget the overlooked mourners (grandparents, uncles, aunt's, close friends etc.) who need your support too.
DON'T Force bereaved people to talk about their loss. They will engage you when the time is right.

DON'T Find yourself saying any of the following:
i. It was God's will.
ii. It was meant to be.
iii. He's in a better place now.
iv. Time heals all wounds.
v. I know just how you feel.
vi. You are still young enough to have more children.
vii. Are you not over it yet?
viii. At least you have other children.
ix. Your child is in a better place.
x. It was for the best.
xi. Now you will have an angel in heaven.
xii. It could have been worse...
xiii. It's been ______ amount of time and you have to get on with your life.

DON'T Expect grieving parents to be strong and don't compliment them if they seem to be strong.
DON'T Tell a grieving parent how they should feel.
DON'T Be afraid of reminding the parents about the child. They haven't forgotten.
DON'T Be afraid to cry or laugh in front of the bereaved.
DON'T Assume that when a grieving parent is laughing, they are over anything or grieving any less.
DON'T Wait until you know the perfect thing to say. Just say whatever is in your heart or say nothing at all. Sometimes just being there is comfort enough.

DON'T Underestimate the impact of grief on children. Children understand and retain a lot more than they may show.
DON'T Think that children are too young to appreciate loss or death.