My Breaking Heart

Today has been a very hard day. It is not only a Friday but it is also the 9th of the month. George would have been 10 months old today. Instead of holding him in my arms I am holding only memories in my mind/heart. He should be here crawling around getting into everything...insead I have his ashes on my fireplace and around my neck. In two months we would have been celebrating his first birthday and me being who I am, a planner to the core, would already be working on that. Instead I am left working on something to do in his memory to keep it alive not only for ourselves for for others and to know that his life just had so much more meaning and that there was a point to his death.

So many times I look at his picture and can't believe his is gone and other times it feels as if he was never here. The day that he died I lost part of myself and it is so very hard to keep it all together and keep moving forward. He was the child I never had to try with or learn how to be his mom. We were just so connected that I knew what he needed and never doubted myself where he was concerned. I miss him laying on my chest sucking his thumb just content to be with me and somehow no matter how bad my day was all of it would melt away when I held him.

I love all my boys and have a different connection with them. With George it was as if I had known him my whole life. The other boys I had to grow with and learn about them and how to handle them and the things about them that I just didn't always understand. With George I just didn't have that, we were kindred spirits who's souls had been intertwined forever. I never really thought that was possible but it really was and to finally find it and then loose it in the blink of an eye, is just so devestating. Maybe that is why in so many ways I feel so alone...I lost the one person who truly understood me without any words needing to be spoken. I didn't have to pretend to be someone I wasn't or work for his approval. I know he was only 4.5 months old but there was just such a strong connection there...maybe God gave it to us since he knew he would be taking him...I don't really know or understand it all.

The last few days have been kind of crazy with a lot of things transpiring. It looks like we will be taking a trip to Georgia August 10th to meet with a Mito specialist down there on the 11th. I happened to meet her years ago when she worked with the physician who had done Joshua's biopsy. She happens to now have a virtual practice where she manages the children's care from GA but works with the docs up here. She of course wants to see them once a year and especially the first time around to get a grasp on them as individuals and how the disease affects them. Unfortunately, she does not take insurance and the cost is quite a bit not to mention the trip but in all reality it is priceless to finally be able to be mom and not their doctor. I'm really hoping that this works out, I have a very good feeling about it all.

In many ways I feel this need to have one doctor willing to do this sort of thing before the baby is here. I really can't live what I did with George. There were so many things going on and I kept trying to convince docs who didn't think there was something wrong that there truly was something wrong with him. With me trying to do anything to get a doc to take an interest there were conflicting ideas and in the end there was not one doc overseeing his care although all of them were told what the other was doing. I just didn't know enough and trusted their judgment when it came to telling me what to do and may times I thought I was just being over protective.

Many times I was made to feel, even by other parents who had children with the disease, as if I was just wanting something to be wrong with them or that I didn't have a right to worry since they weren't really that. Even after he died I was made to feel like an outcast among them all being told that I didn't know for sure that he had Mito and that it demeaned their child's fight?! I really thought we were all in it together for the greater good of our children but apparently I was wrong. Since then I have kept my distance from docs, other parents, and even ended relationships because they were just not good for me to be in. I was told on numerous occasions that my kids weren't as sick and didn't need the care that others did, and I respected that but in the same token they do/did deserve as much care and attention...they are still at a higher risk to die...George proved that.

I do worry for the new baby but I am trying to put things in place this time around. Our pediatrician is a good guy but he is good for ear infections and vaccines. He is willing to work with any doc willing to call the shots but he is not all that into being the one to do that, which is hard for me since Ken(the boys old ped) always took the lead and kept up on all the kids care. I know I can't prevent anything from happening but I will do my best to make sure that I put things in place to keep on top of this. I guess now they will have to take me seriously...it only took my son dying to prove I was not crazy and that my kids are affected quite a bit dispite the fact that they look fine. George looked fine the night I put him to bed...it was the last time I saw him alive. Many of his doctos and therapists were just dumbfounded by it. I try to not hold resentment but I find it sad that it took him dying to get them to pay attention...by then it was just to late.

I know he is in a better place, and I know it is selfish of me to want him back but God I want him back. Living with this hole in my heart is just so hard to do. I had already been through so much in my life and felt a great disappointment because of that but got over and through that. Nothing could ever compare to this though. I did happen to find another mom in England who feels very much the same way I do...she had very much the same connection with her son that I had with George. Although it does not take the pain of our breakign hearts away, we somehow find solice in the fact that there is someone who truly understands on so many levels. Life will never be the same again, there will always be what if's and all sorts of other mixed emotions. We will live our lives to the best of our ability as we always have but it will always be with part of us forever missing.

My New Normal Poem

My "Normal"
Author: Unknown

Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family's life.

Normal for me is trying to decide what to take to the cemetery for Birthdays, Christmas, Thanksgiving, New Years, Valentine's Day, July 4th and Easter.

Normal is feeling like you know how to act and are more comfortable with a funeral than a wedding or birthday party...yet feeling a stab of pain in your heart when you smell the flowers and see the casket.

Normal is feeling like you can't sit another minute without getting up and screaming, because you just don't like to sit through anything.

Normal is not sleeping very well because a thousand what if's & why didn't I's go through your head constantly.

Normal is reliving that day continuously through your eyes and mind, holding your head to make it go away.

Normal is having the TV on the minute I walk into the house to have noise, because the silence is deafening.

Normal is staring at every baby who looks like he is my baby's age. And then thinking of the age he would be now and not being able to imagine it. Then wondering why it is even important to imagine it, because it will never happen.

Normal is every happy event in my life always being backed up with sadness lurking close behind, because of the hole in my heart.

Normal is telling the story of your child's death as if it were an everyday, commonplace activity, and then seeing the horror in someone's eyes at how awful it sounds. And yet realizing it has become a part of my "normal".

Normal is each year coming up with the difficult task of how to honor your child's memory and his birthday and survive these days. And trying to find the balloon or flag that fit's the occasion. Happy Birthday? Not really.

Normal is my heart warming and yet sinking at the sight of something special my baby loved. Thinking how she would love it, but how she is not here to enjoy it.

Normal is having some people afraid to mention my baby.

Normal is making sure that others remember her.

Normal is after the funeral is over everyone else goes on with their lives, but we continue to grieve our loss forever.

Normal is weeks, months, and years after the initial shock, the grieving gets worse sometimes, not better.

Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. NOTHING. Even if your child is in the remotest part of the earth away from you - it doesn't compare. Losing a parent is horrible, but having to bury your own child is unnatural.

Normal is taking pills, and trying not to cry all day, because I know my mental health depends on it.

Normal is realizing I do cry everyday.

Normal is disliking jokes about death or funerals, bodies being referred to as cadavers, when you know they were once someone's loved one.

Normal is being impatient with everything and everyone, but someone stricken with grief over the loss of your child.

Normal is sitting at the computer crying, sharing how you feel with chat buddies who have also lost a child.

Normal is feeling a common bond with friends on the computer in England, Australia, Canada, the Netherlands and all over the USA, but yet never having met any of them face to face.

Normal is a new friendship with another grieving mother, talking and crying together over our children and our new lives.

Normal is not listening to people make excuses for God. "God may have done this because..." I love God, I know that my baby is in heaven, but hearing people trying to think up excuses as to why healthy babies were taken from this earth is not appreciated and makes absolutely no sense to this grieving mother.

Normal is being too tired to care if you paid the bills, cleaned the house, did laundry or if there is any food.

Normal is wondering this time whether you are going to say you have one child or none, because you will never see this person again and it is not worth explaining that my baby is in heaven. And yet when you say you have no children to avoid that problem, you feel horrible as if you have betrayed your baby.

Normal is avoiding McDonald's and Burger King playgrounds because of small, happy children that break
your heart when you see them.


Normal is asking God why he took your child's life instead of yours and asking if there even is a God.

Normal is knowing I will never get over this loss, in a day or a million years.

And last of all, Normal is hiding all the things that have become "normal" for you to feel, so that everyone around you will think that you are "normal".

Heavy Heart

My heart has just been so heavy lately. I don't know why it is that I miss you so much. Every single time I think I finally have it together something happens to just make me realize that this is forever and is unpredictable at best. Trying to explain the pain in my heart is just so very difficult since it is not like a cut or broken bone that will heal with time.

It is so hard for me to know you are going to be a big brother but you will have to do that from heaven and not here. We will have to be the ones to tell your little brother or sister all about you and how great you were and what you mean to us. This is just not the way that I pictured life for us all. Tears stream down my face at least once a day because I just don't know what to do or how to make the pain end. I know it will be the day I am with you again but that just seems so very far away.

There is always something that will just make me think of you and hit me out of no where. Today I was driving home from a stop at Costco after my doctors appt and the song Homesick came on the radio and I cried the whole way home listening to it. Directly after that was over, the song I just posted on here "Better than a Hallelujah" I really thought about the meaning of it and how ironic it was playing when it was. Those are the moments I know that God is with me and will see me through this.

Better Than A Hallelujah Amy Grant

Parental Grief And A SIDS Death

The impact of a Sudden Infant Death Syndrome (SIDS) death presents unique grieving factors and raises painful psychological issues for the parents and family as well as those who love, care for, and counsel them. SIDS parents must deal with a baby's death that is unexpected and unexplained, a death that cannot be predicted or prevented, an infant death so sudden that it leaves no time for preparation or goodbyes, and no period of anticipatory grief. In many cases, parents of SIDS babies are very young and are confronted with grief for the first time.

SIDS often occurs at home, forcing parents and siblings or other children to witness a terrible tragedy and possibly scenes of intense confusion. In some cases, the parents themselves are the ones who find the child dead and they must always live with that memory. In other cases, the parents may feel overwhelming guilt or anger if the death occurred while the child was in daycare. They may feel that the baby might not have died if they had been caring for it. "All too frequently, a SIDS loss is not socially validated in the same way other deaths are. Others often fail to recognize that, despite the brevity of the child's life, the family's attachment to that child is strong and deep and has been present in various ways since the knowledge of conception" (Rando 1986,167).

SIDS parents must take a journey that "involves a trek through grief-a strange and hostile territory that no one would ever pass through if given the choice" (Horchler and Morris 1994, 17). SIDS parents often retain strong feelings of guilt and sometimes a sense of responsibility for what happened even though they've been told there was nothing they could have done to prevent the death. Sometimes, parents are the victims of undeserved suspicion from law enforcement personnel, even family members, neighbors, or friends. In the most difficult situations, the baby's death may cause parents to be subjected to grueling investigations and hostile questions; they may even face accusations of child abuse.


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Probably the most stressful and anxiety-provoking act in human existence is the separation of a woman from her newborn infant. The response to this, which humans share with most of the animal kingdom, is an overwhelming combination of panic, rage, and distress. - RUSKIN, IN HORCHLER AND MORRIS 1994,16


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SIDS parents, relatives, daycare providers, health care professionals, and other adults feel helpless in trying to explain the unexplainable to other young children who may have been present at the time of the baby's death. It is especially difficult for children to understand why a baby died when it didn't appear to be sick. Also, in some cases parents are required to explain SIDS to adults who are misinformed or know nothing about the syndrome.

Any infant or early childhood death forces adults to think about their own vulnerability, but a SIDS death also brings with it total mystery, an absence of answers, and a frightening loss of control. The chaos surrounding a SIDS death leaves most parents feeling that nothing in life is predictable; a SIDS death throws everything off balance.

As is the case in most traumatic experiences, SIDS parents are likely to continually replay the events surrounding the death over and over in their minds and in their conversations. Whether the parents put a seemingly healthy baby down for a nap or for the night or took the child to the daycare provider, they assumed their child was well and in a protected environment. They felt secure; their family and their world were in order. Then suddenly, everything has been turned upside down. Even though there may be attempts to reassure the parents that the baby didn't appear to suffer, frequently they are not convinced. They repeatedly ask, "How can a perfectly healthy baby die?" Often these parents are told that SIDS doesn't carry a high hereditary risk; yet fears about having subsequent children haunt them.


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[The grief SIDS parents feel is like a]...continuous, crashing waterfall of pain...SIDS is a forced separation that will last forever. In the beginning, survivors are so shocked that their bodies and minds cannot even begin to comprehend all that has been lost...Shock and disbelief overtake most survivors so they can only vaguely feel their own empty arms and the rage that will eventually come full force. ...SIDS parents attempt to transcend the awfulness of [the baby's] death by choosing to celebrate the dead infant's life while not denying the physical finality of the death...[After a SIDS death, parents attempt] to travel the long road of grief to a place of rest and hope...SIDS parents must [try to] actively seek peace and joy in life-even in the face of a grief that will never end... - HORCHLER AND MORRIS 1994, 2, 16, 17, 248


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SIDS parents also are very often plagued by "if only's" that they are never able to resolve. They mentally replay such thoughts as: "If only I hadn't put the child down for a nap when I did." "If only I had checked on the baby sooner." "If only I had not returned to work so soon." "If only I had taken the baby to the doctor with that slight cold."

SIDS parents also need to know the value and importance of obtaining reliable information. They need to have access to professional support; and they need to be aware of the great benefits other parents have gained from attending support groups and sharing their experience or by expressing their thoughts and feelings in writing.

Moreover, bereaved SIDS parents often find that health care professionals are as perplexed as they are and cannot provide them with any explanation for the death. Although most health professionals know about SIDS, not all can provide parents with the information they so anxiously seek. They are unable to provide answers to questions such as: "Did my baby suffer?" "What are the possible causes of SIDS?" "What can I do to prevent another child from dying of SIDS?" "Are there symptoms I should have known about that could have prevented the death?"

In the case of some SIDS deaths, the autopsy findings may still leave unanswered questions, or the child's death may be attributed to causes that are problematic for the parents. Some families are subjected to agonizing doubts and delays from the legal system about the exact cause of death. The absence of standardized procedures for determining the cause of unexpected infant deaths brings added pain and frustration to parents already in the midst of a harrowing nightmare. Thus, SIDS parents are often denied the sense of closure that comes from knowing the exact cause of their baby's death.

A single SIDS death can have a ripple effect on as many as 100 people who came in contact with the baby or the family. "The expanded circle of concern" (Corr et al. 1991, 43) can include parents, extended family, neighbors, coworkers, child care providers, health care and emergency personnel, clergy, funeral directors, and other care providers.

SIDS parents and family members need to be around people who will offer them support in a nonjudgmental way; they need to know that some things in their lives are permanent and there are certain people on whom they can truly depend. Other family members, friends, or professionals can provide this sense of dependability and assurance by allowing parents both permission and ways to express their grief and talk about their confusion. SIDS parents need to talk and they need someone to listen-really listen-even if they tell their story, express their doubts and fears, and ask the same questions repeatedly. What SIDS and other bereaved parents are really saying is, "Let me tell you about my pain; let me talk about my child with you; please do call my child by name; please do not let my child be forgotten."

Friends and family members should try to do all they can to show their concern and help the parents in keeping alive memories of their baby. For most SIDS parents, it is also reassuring for others to try to mention special things they noticed about the baby and to remember the child's birthday or the anniversary of the death. By extending these personal and sensitive gestures, loving and concerned relatives, friends, and caregivers can become a source of reassurance and comfort for the grieving parents.

Some SIDS babies are so young when they die that family members and friends never had a chance to welcome them. They may have missed sharing the parents' excitement over the birth and affirming the child's existence. Many individuals do not understand the depth of parental attachment to a very young child. Bereaved SIDS parents should not be made to feel that others don't want to hear them, that others won't permit them to openly grieve. The parents of SIDS babies want their child's short life to matter not only to them, but to their families and friends, to the others in their "circle of concern," to the world.


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The dynamics of a SIDS loss [mean]...there is no chance to say goodbye to the infant or to absorb the reality of the loss gradually over time; the unexpected loss so overwhelms people that it reduces their functioning and compromises their recovery...The physical and emotional shock of the infant's death undermines the [parents'] capacity for regaining a feeling of security; the SIDS loss evokes particularly problematic grief reactions, such as the abrupt severing of the mother and father infant bond. - RANDO 1986, 166

Great Explaination for how a Parent Feels after the Loss of a Child

"A Pair of Shoes"
author unknown


I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes. They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think
about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

So to all of my new friends who, like me, have suddenly found themselves in this new pair of shoes...thank you for walking with me.

Natalie Grant - In Better Hands Now

I absolutely love this song! So much meaning to me! The toy in the video was one that George had before he passed...it was one of his Christmas gifts! Whenever I see it I think of him.

Happy 4th of July

You never did get to celebrate a 4th of July with us. I thought about you all day long and missed you a lot. It was a very draining day for me from beginning to end. I hope you are in heaven looking down on us all knowing we wish you were here. I love you my little monkey!