Head out the Sand then someone moved the sand pit!

Hi Tina, I am so sorry I don't have any answers, but your letter really touched my heart. You & Eve are in my thoughts & prayers, sorry that's all,I can do. I do want to say always keep Hope in your heart; God will answer, our prayers; Hope for a cure and focus on her Beautiful Smile, My husband always tells me I have a great smile, remember they are contagious, and they make everyone feel good. Sorry I can't help.....God Bless...Lori:)

Tina, Remember we are all here for you. I remember before Anthony's diagnoses I would pray that we would find out what was going on. I think because as a mom I just wanted to fix except it and do what ever I needed to do for him. Finding out is was mito was no help to me because there are no answers there is no fix. I truely try to do as much as I can hoping that something will work. Our Nutrionalist has been with us for most of Anthony's life and the last time she was here she said " Sarah you need to remember you are not the doctor, not the therapist, You are his MOM and you need to remember your role is to love him."

Had another Neuro Appointment today, again I enter the appointment half terrified they are going to tel me they got it wrong and she is fine and half hoping they will! Of course they didnt! All the testing they have done to check for things that could mimic Mito but be treatable have come back negative! The evidence they have formt he muscle biopsy and the clinical evidence she presente before them confirm irevocably that this is a mito condition they just dont know which one! Todays findings add to the list of Mito confirming diagnostics. Her reflexes are now totally absent! Her muscle tone is much less. Her spasm is worse her myoclonic jerks are significant her heart arrythmias were not explained by an abnormal heart scan and therefore are more likely autonomic. There is a concern of heart block. The fact her condition has improved with continuous oxygen suggests the cells are needing more oxygen available to utilise it, I told the Doctor my biggest concern was to be making the most of what she has and to maximise her quality of life. He agreed that was important but also wanted to do further testing to see if things could be improved. He assured us he would be looking at what could be done and the likely benefit against the likely cost to her....he did not want to be considering doing something that would have little benefit but cause her much distress/pain or even risk worseneing anything. So we are now probably going to do Nerve testing and 24 hour cardiac monitorring. as well as the sleep study we are already waiting on. He was quite significantly concerned about the bradycardia and warned us that one of the possible causes could lead to arrest, so we deffinitely need to check that out. we could therefore be looking at a pacemaker. I had hoped for three things this wek at our respite stay at the chidlren's hospice. Sleep! That just didnt happen, I couldnt unwind, I couldnt swtich off and sleep just was not going to happen1 An opportunity to offload to someone who cared and who did not think I was crazy and who would listen and help me know how to " BE"! That didnt work out either. The Family Support Worker we know and trust and have a wonderful relationship with is on maternity leave, The FSW who is looking after us in the meantime is lovely, but she isnt jo! I found it hard to talk freely and she kept trying to know what I was going to say, trying to answer questions I had nt asked, and then told me I had to accept that Eve was not going to get better, there was going to come a time when nithing else could be done I had to stop looking for answers that arent there! This was not what I needed, I dont know what I did need, I dont know what I wanted, but that wasnt it! So I eas left feeling cheated, saddended deffinetly no better off emotionally and now with the Neuro's words ringing in my ears I am just BLARGHHHH! How do you Mum's do it? Do you put on a front of "I'm fine but are breaking apart inside, or am I making too much of this? I just dont know how I should be??? I cant go on feeling like my heart is ripped out but smiing and telling everyone I am fine. Yet people dont want me miserying like this all the time do they? Sorry, I really do need to buck up and find my smile again! hugs

Tina, I am so sorry for what you are going through right now. It is certainly a dark time. In what you wrote I did see your doctor as a bright point in that he seems to understand what you want for Eve and he is going to help you find out everything you can to try and improved her condition and quality of life being careful not to go too far with testing and perhaps cause her unnecessary suffering. It seems he wants to proceed only where he sees a real potiental payoff for Eve--If I got that right that is something to be very thankful for and comforted by. I think you understand the situation well but you are Eve's mom and as mom we don't respond well to people beating us with reality. I do have the experience of having doctors tell me to accept my son's death and that being a reality-when he was a neonate. It was an horrific pain and I am so sorry that you are having to experience that. Stay focused on what you can do-being there for Eve just to touch her or be next to her. Keep hope that your doctor may find something to help Eve's quality of life while keeping an eye out for her comfort. I wish you strength and I am sorry I can not be of mcuh help. Take care. Kate

Thanks Kate. I dont want people to be fed up of my whining. I seem to have been in a dark place for a long time. I am hurting and when people ask how things are I feel compelled to say fine. Most people dont really want to hear how things really are. Those who are brilliant but I dont want to wear out their sympathy...does that make sense? I am also mindful that I do not want to cry away the time Eve has left. I want to ge tot a place where I can accept the situation toi a degree and make the most of the time we have together. In that time I want to ensure we are making the most of what she has and liveing that life to the full whilst ensuring she is not overstressed by our living. Thank you for your understanding and care. Much love

I can completely understand why you feel you are in such a dark place--you are in a dark place! I can only imagine what you are going through. I do know what you are feeling because I have been there but not for as long as you have been dealing with this. The month I spent listening to people tell me that my son was dying seemed like years. It is all you can think about and it is hard to fight off the tears. Of course you are worried about laying all this on others. I would say that if someone is brillant than trust that and if they ask for you to share and you think they are real then share with them so you can gain some strenth to be with Eve. I felt worst when the doctor would not allow me to be with my son. Because he was a newborn they assumed I was not attached and perhaps he was not attached--of course that is not true. I felt much stronger when i sat with him. I remember for a time he could not tolerate it if I touched him-all his sats would go crazy and so I just kept one finger on his forehead and I would talk to him. I do better when I have something to do. You are Eve's mom and being with her is something to focus on. I would not pressure yourself to accept what is happening just try to focus on what you can do for her when you are with her and give yourself time to just fall apart when someone else can be with her or when she is asleep. Whenever you feel you want to 'whine' don't hesitate. I said to my husband after my son started to recover that I would always feel love toward anybody who was ever feeling the fear of losing a child--it is just something you never understand until you are faced with it. Take care. Kate

Tina,it's times like this, i wish i had the perfect words, but just can't seem to find them. My heart aches, to think of what you and your family are going through. Know that you are not alone, we all share in your frustration, and your pain. We are all here to support you, if all we can do is listen. So VENT, VENT, VENT! We do care! Hugs

I was just checking in to see how things are going. Janice is right-vent away whenever you need to. I will be checking back in later tonight. Take care. Kate

Hi all. you are so kind...it is hard knowing where to be myself and how to "be" when I shouldnt! Today we had a lovely time with a friend for a birthday party. It was Eve's friends birthday but the whole family was invited as the older children are friends with our older ones too and th eparents are good friends to us. It was nice, Eve sat in her wheelchair in the conservatory looking out at her friends playing on the trampoline, she enjoyed games with the balloons and her friend bought her the presents to see close up....lots of girly pretties and a wonderful bouncing Tigger which got a giggle from Eve. Eve dozed on and off throughout the afternoon but enjoyed the time when she was awake. When it came to the birthday cake and singing happy birthday, I turned off Eve's feed and oxygen and picked her up to come and join the singing and the happines of the birthday cake and candles. it was lovely! Then as I was walking with her back to her chair the birthday girls Grandma...who had been listening in to a conversation I had had with birthday girls Aunty a little earlier, where I was explaining Eve's diagnosis and prognosis, grandma came over in that tell tale patronising voice...so is he better now then? I was taken aback...emotions are very raw right now, so with a trembling voice I answered , no she isnt going to get better. Grandma smiled and looked me in the eye and said...but better than she was then! I am glad I had Eve in my arms or I may just have thumped her one! I would have replied more bluntly had my other children not been in ear shot but I just kept quiet and walked away....it keeps coming back to me now as we sit here this evening. Eve has had a good half hour of being smiley and interactive and enjoying some fun with Daddy...she is now flopped and struggling to get comfortable and is almost asleep. she is exhausted from the day but happily so I think, although I do wonder if she is aching in her muscles as she keeps wincing with each myoclonic jerk. How do you tell someone "my child has a condition that is going to cause her to die?" Eve's condition has deteriorated so much in the last few monthsit is fairly obvious that it is going to be extremely life limiting if nothing can be found to slow the progression. I am sure this comment today is going to be the first of many that stabs like a knife to my heart! A friend who also has a child with a terminal condition was asked a similar question about her son the other day...she was quick with the response, Well aside from the fact he has a terminal illness he is fine thanks! I wish I had been quick enough with that today...but Joshua and Christina were in earshot. They ahve a lot of understanding but I dont think making a public statement like that would have been in their best interest! sorry I am waffling now but you said come here to vent! thanks loads of love

PS does anyone use MSN?

tina_hillier@msn.com

would love to chat real time,

but dont email me at that address as I rarely check it.

thanks

I am so glad that you and Eve had a chance to get out with all of the family and it sounds like Eve enjoyed the party. Treasure those family times and forget the comments. Thanks for sharing your day. Take care.