My son is going to die....

[Mitomom]

My 2 1/2 year old son Ayzac has Mitochondrial disease. Due to this disease his kidneys are close to failing and he is not a candidate for dialysis or a transplant. I've been told he does not have long and to cherish every moment...which I always have. I have known since he was a baby he would pass before me but nothing could prepare me for this news. I am terrified. I'm so scared and I can't stop crying. I'm not ready to let go...my grief has already begun and I'm wondering how am I possibly going to get through this........?

[shellyku]

Dear Mitomom - My heart cries as I read your post. I'm so sorry about your

baby boy. I can only encourage you to keep coming to this website, specifically

to Loss of an Adult Child, even though he's not an adult, as there are many

wonderful, compassionate people there who have lost a child. My 29 year old

daughter died from leukemia in August of 2010. We have been there and can

hold you up while you go through this. My prayers to you dear.

[Mom of Chip]

Mitomom..I feel your pain. When my 46 year old son was diagnosed with pancreatic cancer, he was told he probably had about 6 months to live if radiation and/or chemo did not help him. As it turned out he was gone in 5 weeks...Quite a blow to his 2 daughters and to the rest of our family. We were not ready to say goodbye.

Like Shelly said..come to the Loss of an Adult Child thread....I have only been a member here about 3 weeks, but the people in that section have already helped me tremendously. They have been there and understand.

May God give your strength.

Much love and hugs to you.

[blujonny]

To go from an emotional attachment like you have with your child to a kind of detachment sounds extremely difficult. I'm not sure if there is anything else anywhere that can be done for your child.

[BreathofAngel]

To go from an emotional attachment like you have with your child to a kind of detachment sounds extremely difficult. I'm not sure if there is anything else anywhere that can be done for your child.

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NEVER GIVE UP! There is ALWAYS Hope with God!

[widower2]

But also never be so afraid of reality that you pretend it isn't there. This is experience talking. mitomom I'm so terribly sorry and hope for a miracle for you both. Generally speaking, there is in my opinion nothing worse than what you are dealing with. For whatever it is worth this site is here to help however it can......

[hospicevolunteer]

Dearest Mitomom,

How sad it is to read how sick your beloved Ayzac is...

My heart is with you and I can't even begin to understand how difficult your journey must be.

I don't think there really is no preparing for a loss so incredibly devastating, just trying to cope...one moment at a time...

You know...for many, grieving begins well before a loved one passes away, because grief comes in many ways, and many many different layers.

And grief is a very personal journey, so it often may be very hard to find people who understand - because even with seemingly identical causes of grief - it's not the same.

I want to be careful as you are in such a tender position.

For one, I wanted to ask if you have a support system. I hope that is not a dumb question: sadly, I have met many people who didn't have anyone to support them.

I'd like to share a link with you to a support group: MitoAction.org, but the link is to a memories page of parents who lost a child to Mitochondrial disease. Even though they may not be in the exact same position as where you are, but may perhaps be helpful to be in contact with parents who have been there - who know how scary this may be and are all too well familiar with the specifics of - not only losing a child - but losing a child to Mitochondrial disease. And I also share the link to that specific page, because it shows a direct link to those parents.

http://www.mitoaction.org/memories

Sweetheart, I hope I didn't offend with that link - I mean well and I'll keep you and your precious Ayzac close to my heart.

Please don't hesitate to let me know if I can be of help in any way. Big hug, Francisca.

PS. A personal touch: I have met many people who find themselves in an emotional "fog" during times of such uncertainties and scare.

I would ask that if so inclined: write. Write down whatever whenever. I sometimes have left little notebooks with a pen with people and without "explanation' they wrote in it.

There doesn't need to be a reason or something spectacular to happen to write. However, over time...years from now even, you may just find a piece of paper with something you wrote down and perhaps you can link it back to some specific moment with your darling and then...it may just become the biggest treasure you accidentally found.

Or, sometimes, not so accidentally.

[JD99501]

...............I know this all too well be greatfull you have this impending warning. I found my son dead with no warning. That was in 2007 here it is 2013 and I am still a mixed bag of gears and cook-koo clocks. You'll quickly find out who really is family and friends. I would highly suggest you plan on you not being able to work for 6months or more. Make sure your never alone for any extended period of time. Sleep, eat, and drink fluids when your body asks for it. Depriving your self of basics will only make it worse. And will drive the grief in odd ways. Be open minded about strange events and circumstances. Be prepared to see familiar faces every where you go. And always remember your child loves you greatly and will be there. Keep your mind and heart open. We will all be here for you.

[Mermaid Tears]

MitoMom....yes...we are all here to comfort and care for you and yours...just write anything you want...however..whenever...we may not be able to 'touch' you...but our hearts are here to reach out to you in the darkest days and the deep sadness...please..please...practice 'self care'...be good to yourself..protect yourself....we here will pray and pray for you...His Arms of Healing, Grace, Love and Mercy are around you...

[hospicevolunteer]

Dear Mitomom,

How are you doing?

My apologies for the long message: I share from the heart, and I wanted to add about self-care as It is something that is indeed highly important.

Over time, I have encountered that a lot of people equate practicing self-care with being selfish: "how am I going to a park - when s/he is so sick/dying?!"

There is a distinct difference.

As a matter of fact: most people practice self-care every single day - we may just call it differently: singing in the car home from work, we call "winding down" but is self-care. Running on a beach, we call "keeping in shape" but it too is self-care. Gardening, we call cleaning up the yard and is self-care just as much. Not everyone likes the same things, and that Mitomom, is key.

You and only you can decide what self-care may entail for you: what may seem huge or futile to you may represent the opposite to others, and vice versa.

Nobody has the right to tell you what you should or shouldn't do, especially because what may help one day may not be helpful the next. Your journey with your sweet Ayzac is sacred and terrifying at the same time and therefore even more reason to practice self-care. However big or small: self-care has no size, it has no protocol or rules.

Self-care however big or small, is never selfish: it can actually be the exact opposite. When practicing self-care you are merely recharging your battery as best as possible - within the circumstances at hand - for what is yet to come. Dealing with life may be difficult in general ways, let alone when having a loved one who is sick and/or dying. When dealing with this in regards to a child...many extra levels of stress, pain, feeling helpless, certain levels of guilt etc. may be added to an already difficult journey.

If able, and I mean IF you are able to take a little breather it may help to cope a little better. I don't know if there are other people involved and neither do I know you or your circumstances, but there's going to be stressful moments along this journey and I know that people overall think they won't, but under certain pressures people do indeed push each-other's buttons - even the best of friends sometimes do so. Then it's often not really a personal matter - it's a reaction to inability to cope and/or help. Not an excuse, but a reason. With self-care for anyone involved, this may be a way to prevent or curb such incidences and it may mitigate extra hurt.

What may be of help too, is coming here: sometimes it is easier to share with a stranger - because they don't carry judgement and don't know about "pushable buttons".

Children are overall very perceptive because they don't necessarily have up all the "walls" like many adults do. This means that they are oftentimes incredibly perceptive to what goes on around them and they overall see right through it when we try to hide our fears and concerns. Depending on age and circumstance however, they may not be able to put things in context just yet. And that poses the risk of them feeling that they somehow caused for the adult to be sad. I am tying that into the topic of self-care, because there is no way you are going to be able to suppress all of your being scared and such and you shouldn't attempt so either: both you and little Ayzac are worth so much more than that. I'm mentioning it because well...he may very well sense that you are dealing with something major. Self-care comes to play here, because suppressing emotions may really hurt in the long run and it may also help you to guide your sweet little boy.

Honesty is often crucial with children. That doesn't mean that he needs to be told details, but it may help for instance that if he happens to see that you are sad - to acknowledge.

To acknowledge that sometimes mommies are sad, just like Ayzac has been sad at times. To acknowledge that there is nothing wrong with tears and that they often mean we love someone in a special way. It may open the path for your bond to be even stronger. You may be surprised at how little ones may react: they may try to comfort you - like you have comforted them before.

I am aware of the fact that perhaps people may think that that isn't right - how can I possibly suggest to look for support in a child, especially as sick as little Ayzac?!

My view simply stems from the fact that children remember how you bringing them let's say...their favorite teddy bear, brought them comfort. So that may just be what he offers and i would say - accept, even for a few minutes. Adults often forget that children worry just like we do. If Ayzac would offer comfort in his own way - let him. He may just feel as helpless as you perhaps may have felt over time. Allowing him to share his own compassion may help him along his path because in children worry and sadness may be mitigated by allowing them to be an active part of the process - they feel pride within being able to help. The fact that Ayzac is a very ill little boy - doesn't change his love for you or his natural instinct to be protective of- and helpful to- his mommy and if able to practice self-care, you may be able to help him and you in that manner.

A very important part of self-care, is that when/if you can - to verbalize to others how they may be of help. Oftentimes, and especially when dealing with a seriously ill and/or dying child, friends/loved ones wish to help so badly. But oftentimes they don't know how and what oftentimes happens is that they end up doing nothing because they worry that they'll do something wrong. At the same token: people who are the ones with the dying sick/child often don't want to "bother" anyone with their needs, and a lot of hurt may be created because of that for all involved. And just as important within selfcare and the concept that I just mentioned, is to let people know what you don't need. And that can be just as difficult to do. But what oftentimes is difficult for friends/loved ones, is that they think that when you reach out - they HAVE to respond with an incredibly profound answer. While in all reality people going through such a difficult journey as you have been in and still are - overall do not ask for answers: it may be a lot more helpful to find a listening ear and/or acknowledgement. Nothing more - nothing less. If you are able to share these kinds of things, your journey with little Ayzac is still difficult and as said: I cannot begin to understand what you are going through - but through self-care you may be able to guide your little man a bit easier and allow loved ones/friends may be able to support you a little better...

Don't hesitate to come and share, Mitomom: the people here may not know your specific circumstances, but they know about caregiving and loss and they will be here for you...

Many blessings,

Francisca

[dsmurph]

I can ony tell you this story and give you the name of a Dr. who practices healing instead of masking a wound. I have a friend whose son at the age of 2 was diagnosed with a disease that effected his intestines. I Think it was ulcerated colitis. They wanted to remove some of his intestines. When I met him he could only eat rice, lamb and broccolli. They met this (Homeopathic) Dr. who started them in the right direction. 3 years later he can eat almost anything healthy. I can only give you her her name and number. I do know she will work with you over the phone and send meds to you. When and if you call her, be sure snd stress the importance and urgency of your sitution. I don't know if she can help but she may be able to.

Dr. Debra V. Gilliam DC, PHD, 256-722-0555. madison.clinic@yahoo.com

Bless You

[hospicevolunteer]

Hi Mitomom, I just wanted to stop by and let you know I'm thinking of you and little Ayzac.

[Jesse David & Taylor Mom]

Hello, Just to let you know that I am praying for you during this difficult time. I have had two sons die, one at infancy and one on October 10, 2012.

I have found Trudy Harris column on Life after death to be extremely helpful. She worked in Hospice for many years. Here is her column

http://www.guideposts.org/inspiration/life-after-death

Praying for you.

[Redium]

Really its a very sad news.You don't worry about this because god can mut help you in another way.Keep faith on god.God must be help in another way.