Cold &........

 

I Totally agree with this "angel" mommy. Calling kennedy an angel is a lot easier then saying "Kennedy Died"...The word Died is cold and way to over used.

 

 

 

 

 

 

 

 

 

 

 

 

 

https://www.facebook.com/#!/NeverForgetLilyGrace

 

Why I call Lily an Angel: I was asked "Do you refer to Lily as an angel because you really think she became one or just more of an adjective to describe her be...ing so angelic like?" I am not offended by this question.

Someone else approached me about this before and I was offended by their approach because they told me that Lily was not really an angel and the schooled me on why.. they meant well but it was not the right thing to do to a Mom grieving over the loss of her child. In case anyone else is wondering, here is my response:

Do I think Lily passed away and grew angel wings?.... No. Do I think Lily is my sweet baby in heaven watching over me? Yes.. To me she is my angel and always will be..

When people buy hairbows from our project I include a note: From my angel Lily Grace in heaven to your angel here on earth.

To me it's more about a symbol or the qualities of an angel but I do say "when Lily became an angel". It's more a sweet term of endearment for me.. a symbol of love.

Then I thought about it more and came up with this as well: I do say that Lily became an angel in my arms when I tell her story or when people ask how my baby is doing (those that don't know she passed away)- my response is usually that my baby Lily became an angel or that she didn't make it...

Why do I say angel.. After Lily passed away.. I immediately described her passing as "when Lily became an angel".. I never really thought about why but I did think about it.. my biggest reason is that saying Lily became an angel in my arms is easier than saying Lily died in my arms or responding with my baby Lily became an angel is so much easier on me than saying "died".. I have a REALLY hard time saying that about my child. I HATE that word died.. especially since Lily passed away.. it's so harsh and maybe because it's so real.. I hate it though.. I can barely speak that word anymore..

When I talk to other grieving parents.. I'm sure I use the term angel with them too because it is so much more gentle to say "tell me about your angel in heaven" or "can I ask about your angel child"... Than.. "Tell me about your child that died or can I ask about your child that died (or even passed).."

Another Mom (Nikki) who lost her son.. he was born sleeping responded with: I myself think of my son as born into angel's arms. I was brought up to believe that angels were created by God and we do not become them. My son is my angel but I think of him as being kept by Gods angels in heavens nursery to forever be young. When I get to heaven I will hold him as the newborn he was. And we will forever be that way.

In conclusion.. I don't know if I have really shared a picture of Lily's face after she became an angel.. but here is Lily with her Dad and I... RIP sweet angel.. I can't believe you will be gone from me for 5 months tomorrow.. ♥

Kennedy Explains

My Plan For Greif Support

On My Journey to Angel Parent hood i have found myself with the lack of Grief support so I plan on Making it my mission that NO PARENT(grandparent,aunt, uncle) IS LEFT BEHIND!!! You Can always come to Me and I will help you find the perfect spot for you.










Sunset Griefshare Group
One excellent resource for those coping with the death of a loved one is Griefshare offered at Sunset Church of Christ. You can read more about it here. It offers weekly support meetings from 6:30 to 8:00 PM every Wednesday evening. You do not have to attend consistently. The group will "help you face these challenges and move toward rebuilding your life." For more details call 778-2010 or 792-5605. Sunset is located at 34th and Memphis. You can also call the church office at 792-5191. Be sure to ask about childcare if you are in need of it during the meeting.
Monterey Griefshare Group
Monterey Church of Christ also offers a Griefshare group. It currently meets Monday evenings from 7:00 to 8:30. For more details, please call the church office at 795-5201. The secretary should provide you with the contact information for the local coordinators. Monterey Church of Christ is located in southwest Lubbock at 6111 82nd street. Visit the church website here for more details.
Hospice of Lubbock Grief Support Groups
Hospice of Lubbock also offers several grief support groups. They have a "Walking Together" group as well as an ongoing grief recovery support group. In addition, they provide a support group for Lubbock women who have lost a baby through miscarriage or experienced the death of an infant. Hospice also provides a grief support group for children called "Rocky Road." You can read more about the Hospice support groups on their website here.
These are just a few grief support groups in the Lubbock area. There is also currently a widow's group that meets at Daybreak Coffee House. Call 795-2751 for more details

Better explination

 

 

 

 

 

 

 

FIXED???

Would Have Surgey "fix" Kennedys Heart?

~ NO, Surgery is not a fix, it aids in repairs. But She Still might need transplant. Kennedys Heart would have needed more "fixing" and yes it would have been even harder to explain what was goin on. Why her boo boo on her chest hurts. So yes in a way i am sooo happy Kennedy no longer "requires" FIXING.

Would surgery have helped kennedy live?

~ NO, Her Intestines were bad, gone, all 95-100% gone. even if there was something they could do, there would have been no quality of life.

Why do you call this baby a : RAINBOW?

~In some circles, babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm. "Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope

First....Second...???

So the first anything is hard and you learn to be better for next time.
~First time you ride a bike you fall off you learn to try and try again.
~ First time you drive a car, you stop and go then you learn to relaxe and trust the cars mechanics.
~ First date...You are so nervous, you for get your first name.
~First Kiss
~Porposal
~Wedding
~First Child.....First Child with a Congenital Heart Defect.....I admit I was SOOOOOO Scared, "Can i be a mom?" "Am i strong enough?". Kennedy Help realize i am Strong, I am an Amazing Mom. Although Kennedy's story was short she was heard around the world. Her legacy will continue to be heard.

 

~First Angel child.......A club not to many brag about but why not I have something my friends who have kids dont....An Angel. My friends who have children dont get to say they held an angel and saw them fly to the arms Of GOD. I have a personal Guardian Angel, Do you?

~First time out without your Child......This was the hardest, harder than do a selfless thing, Leaving the house and grabing dinner. You gulity, you feel pain of not having yours while others have theres. Walking through a store you hear parents complain about there children while i would GLADLY take your place and love your children. Watching as friends have their babies, secretly being soooo angry because you had to go through what you did. Having people who havent ever lost a child, try to give you advice on a daily basis, and then realizing you have to say thank you and walk away before you kill them.

~FIRST CHRISTMAS WITHOUT YOUR CHILD.......this past christmas i just wanted to scream, i would have loved to spend christmas in hospital. But thats not what i was ment to do. Kennedy spent her first christmas in the arms of mine and Michaels Grandfathers, which i would love to do. Kennedy Spent her first christmas picking out Her sibling.

First are ALWAYS scarey because they are unknown. Our First Rainbow child is sooooo scary, but with Faith and the Hand Of God, I CAN DO THIS.

You asked I answer!

Questions from Differant people:

Is there anything you would have changed with Miss Kennedy?

~~ Honestly....No, Kennedy was made Perfect in her own way. Most parents would say yes but not me, Kennedy was/is a good baby. She taught me that fighting wasn't an option...ITS THE ONLY OPTION. She taught so many people that YES ONE LITTLE BABY CAN TOUCH SO MANY LIFES.

What exactly was Kennedy's diagnosis?
~~ Kennedy Had a Congenital Heart Defect(CHD)-- Hypoplastic Left Heart Syndrome(HLHS)== were her Left heart and left heart structures are under developed. Yes this can be deadly if left untreated. Me and Michael went over all of our options, Kennedy would have "maybe" lived 48-72 hrs if we had desided not to anything.(i say maybe because nobody really knows) We wanted to give kennedy the option to fight, not just to give up. We and her drs were ready for anything but no we were prepared for her to leave.

What is NEC?
~~ Necrotizing Enterocolitis-- In Human terms, Kennedy was in Renal faliure. Her Intestains died, there was nothing they could do. Even if we pushed for surgery, Kennedy would not have any quality of life. She would have been in pain and we would have kept her here for our own selfish needs.






Could this happen to me?
~~ Yes, 1 in 100 children born, sad part about 5% go undiagnosed. Please Please if not for my sanity but for your own, Get a PULSE OX as part of a newborn exam. there are plenty of Celebrities that have passed from undiagnoed CHD's.






How did you stay so strong?
~~ Honestly, I dont know. I have a good family and Faith and I leaned on them. Dont get me wrong I had---HAVE my days, I wouldnt be a Mommy if i didn't. I may have come of strong through words but honestly on this side of the computer I AM BALLING LIKE A BABY! Truth is I want my baby, I want Kennedy but I would never want to bring her back because we all die, if 22 days wasnt her time to go then day 35 might have been. Kennedy wouldnt want tears, She want giggles, and grins AND BOWS.lol.. Iwouldn't Want her to suffer for my selfish need to be a MOTHER. I stay strong by thinking of all the thing she would have gone through, And how much fun she is having with her Great grandparent( who in real life would have done anything for her), How much fun she is having Dressing up our four legged children. You have see the bigger picture to be able to be half as strong as we have been, the other half comes from FAITH.

Grieving as a Grandparent

Grief of Grandparents

The grandparent-grandchild relationship is very special. When a grandchild dies, the grief of grandparents is complicated because not only do they mourn for their grandchild, but they also feel the helplessness of not being able to take away the pain felt so intensely by the parents of their grandchild, one of whom is their own child. Both parents and grandparents have lost a part of their future.

Grief Is Individual

As with parents, grandparents often grieve differently from each other, and this difference may create a strain in their relationship. This does not mean one is right and the other is wrong. There is no one right way to grieve. Communication with each other remains critical. Knowing what to expect during grief may help bereaved grandparents as they grieve, as they try to understand their child’s grief, and as healing slowly occurs for all.

Denial

There are many elements to grief. But because grief is not necessarily ordered or rational, there is no logic or pattern to how it is experienced. However, when a grandchild dies, most grandparents feel a protective numbness in the beginning. Even though they may know their loved one has died, their minds want to deny it and the numbness allows this. They may find themselves talking to and about the grandchild as if he or she were still alive. They may “see” the child somewhere, only to realize it is another child. Denial of the death gradually disappears as grandparents realize that all are vulnerable to loss. The ache in their heart can become a nearly constant companion.

Anger

As denial lessens, grandparents feel much hurt and frustration. This can lead to anger directed inward and toward others. It may be focused on the spouse or even on the dead child. Their own grief-stricken children, whose pain they share, may become the object of their anger. They often are angry with themselves for not being able to stop the injustice that has devastated the family; they may feel anger with God.

Guilt

Guilt, real or imagined, is always there, with the recurring “What if . . . ?” and “Why didn’t I . . . ?” As grandparents try to resolve their guilt feelings, anger often returns in full force.

Because grandparents love their children, they often are torn between this love and the fear of loving too much, lest they then lose a child or another grandchild. Grief over a death long past may resurface. Often, as in the multiple losses that may occur from an accident, the grandparents are grieving not only the loss of a grandchild, but also the death of a child in the same tragedy. Guilt may occur because the grandparents live on, while the young ones died.

Depression

Some depression is a normal part of the grieving process. Yet it may be so overwhelming to bereaved grandparents that they fear they are going crazy. Bereaved grandparents also worry about sanity and depression in their grieving child. Friends may burden them further by voicing their concern in this respect. Occasional thoughts of suicide are not abnormal when experiencing intense grief, but a focus on this aspect indicates professional counseling is needed.

Time Is a Slow Healer

The passage of time alone does not provide healing. How that time is used is what makes the difference. During grief, which lasts much longer than society wants to admit, talking with those who have had the same experience is useful. Grandparents may assist other grandparents in this respect. Some find help in reading about grief and the experiences of others, particularly grandparents. They may be aided in helping their children by reading about parental grief itself. Some draw comfort and strength from their religious faith, although that faith may be severely tested. Self-help groups, such as The Compassionate Friends, can provide needed support.

Grief Work

Those acquainted with grief speak of “grief work” and this is fitting, for grieving takes energy. Those who grieve are tired much of the time. Oftentimes today’s grandfather was raised in a home where tradition held that even after the death of a loved one, men didn’t cry. Men may not give in to tears, instead believing they must maintain composure to properly support their wives and children in their grief work. A grandmother, being the matriarch of the family, may try to suppress her own grief, also in order to support others within the family. Studies have shown the healing power of tears, and crying should not be suppressed as this is a natural part of the grieving process.

Resolution and Reorganization

Perhaps one of the most troubling aspects of grief is the question that grandparents continually face: “Why?” Friends try to comfort with answers. But for the bereaved, no satisfactory answer exists. Thus, grandparents must finally accept the unacceptable. This does not mean that they understand why death struck, or that they are forgetting the dead grandchild. So often bereaved grandparents and parents are told that they “must get back to normal.” But what is now normal for them will never be the same as it was before the child’s death. Life without that child must go on, and as healing occurs, it will.

Holidays, birthdays, and anniversaries, including the anniversary of the child’s death, may be stressful times. Allow time and space for your own emotional needs. A deeper appreciation will grow for those children and grandchildren who survive. A greater understanding of others who experience similar loss will emerge. Many grandparents and parents become more compassionate because of the tragic event that has touched their lives. Healing will help the bereaved accept the new understanding that has been forced upon them.

Love Remains as Healing Occurs

Grief is the price we pay for loving. Grandparents love both the grandchild who died and the grieving parents. As grandparents grieve and try to understand and support the parents, healing will take place. Just as love remains and will never leave, time will bring healing. Though they retain hidden scars, grandparents will recall the happy times they once shared with their children and their grandchild, and not just the tragedy and sense of loss they have come to know.

Effects.....

When we had Kennedy it wasnt just our lifes that change but two little boys who are very close to us and are practicaly our own. Slyder is handling like any 8 year old, He ask questions and wonders. From my stand point he loves her very much and wishes that he could have seen and loved on her but not to much wouldnt want to seem "non boy-ish". Stetsyn on the other hand.....She didnt leave, she'll be back. I encourage him to talk and get out his feelings toward her. I know hes a 2 year old but he understands MORE than what we give him credit for. I know that if stetsyn could have he would have saved her, gave him half of his heart. He was in love with his "kenni" by the way he gave her that nickname....in the middle of babys r us he saw a dress and said kenni wants that, i told him not know, he then procceded to SCREAM "MY KENNI WANTS THAT"....needless to say i bought it. He love to talk to her and ask about her pawpaw and tell her he has a pawpaw, and asks her if she wants to come back, when shes comeing home, if she likes heaven,...Ect. Stetsyn really does love his angel and loves telling people where his "sissy" is.

Know with bug I fear that Stetsyn will be fearful to get to close. I would be to, But we are working on getting him closer to being warmed up to it.

the Green Monster???

Jealousy.... Someone asked me if i every got jealous of women who drank , smoked, did drugs ect.... I said sometimes but they will have to live with what their choices did to that child. I did nothing, did what the dr's said, listened to MOST wives tales....I did everything right and still ended up witha special baby. Yeah i feel jealous because I had to struggle to have a healthy happy baby, when others didnt have to try to have healthy babys. Most of my friends whom were/ are pregnant I am happy for you, as you watched my childs life began and end, learned alot, leared what to ask for, Yes its painful for me to look at baby pictures but its getting easier. I LOVE CHILDREN. My journey to a family may have been differant but i have learned something no other parent should have to learn SOOO early But the lesson was for me and my husband. If your an angel parent you might might not yet learned your lesson, but i promise there is a lesson, God does have/ and do everything for a reason. OUR journey may have been harder but it makes me love a little hard and longer, Learn to let go when i know i have no control, Love my other children a little extra for/from Kennedy.


 So to answer "do you get jealous?".....Its not so much Jealousy, as it is unanswed question left over from Kennedy. I wonder why do they not have to stuggle, then i realize they will, my struggle started early so i could enjoy the little things.....Like waking up to a wonderful, just waking up, Being able to help other angel parents through their personal journeys, being an inspiration to SOOO many that most i have yet to meet. If you have any questions please feel free to ask.

Praying For Bug!!

Overall it been real quiet onthe baby frount, Our rainbow's heart beat was 150's. If ibelieve correctly Kennedy's was in the 160-170's. My Nausea has gone down just drinking EXTRA and eattin EXTRA!! We are still set to go to our specialist on Feb 21st. Keep praying please!!!