I am so upset .....I can't stop crying.

United States
May 18, 2007 1:57pm CST
Well as most of my friends know my son has some severe disabilities that stem from a traumatic birth. he was dead at birth and they worked on him for 9 minutes before they were able to bring him back. well, from loss of oxygen he has severe cp, brain damage, a movement disorder and a seizure disorder. well he will soon be two and he still only takes a bottle every three hours, he functions only on the level of about a 3 month old. he is severely delayed. well we recently started having some feeding issues with him, he has really regressed and is not eating very well. almost next to nothing actually. he's not getting enough nutrition and it's starting to cause weight loss and other complications from weakness, he sleeps all the time. i just can't handle this. i know that this is something that has to be done however i kinda feel like this is like end of the line decision and it's way to early for that. he will only be two on june 13, we still have many more years to come and i just wish their was another way. I feel so helpless and if i could trade places with him, i would in a heartbeat. he doesn't deserve all this pain, he's just an innocent baby. i just don't know how to cope with this. thanks everyone for listening.
13 people like this
46 responses
@mira666 (165)
18 May 07
Hi Hun, words cannot begin to express the sorrow I felt when reading your post, my brother also had severe CP caused by oxygen loss @ Birth, he lived till he was 25 and I would always ask myself why him and not me, but i bet everytime your son smiles or looks at you then you feel proud that he is your son, I know in my heart that you will love and care for him and he will grow up knowing what many children do not, what true love is.
3 people like this
• United States
18 May 07
I'm very thankful to have him, it could of been much worse. I just wish he had a better quality of life. thanks so much, it's nice when someone can relate.
3 people like this
@OhMyDayz (157)
18 May 07
I am sorry to hear about your son and I understand how you would take his place if you could. Its very sad for you and him both. Have you had any support from the hospital to give you advise and guidance to deal with the many issues that will come with having such a severely disabled child. Sometimes, especially in my country they have all the specialist equipment to save babies but then when the parents are left to bring up their baby, which is very demanding, they seem to not give the support these parents need. I hope you find the help you deserve as no one should be expected to do this on their own. My thoughts are with you and your son.
2 people like this
• United States
18 May 07
yeah, the doctors here tell me how to take care of him but they don't help with the mental anguish that i have to go through. thanks
3 people like this
@OhMyDayz (157)
18 May 07
I'm sorry to hear this dedicated, this is what you and your son need the most. My mum works with children who have special needs and she is always telling me how parents have to fight to get what they rightly deserve and this includes emotional support.
1 person likes this
• United States
19 May 07
how right u are , thanks so much.
1 person likes this
@wachit14 (3598)
• United States
18 May 07
My heart just breaks for you really. I can't even imagine how hard it is for you to have to deal with these complicated issues with your son on a daily basis. There is nothing I can say to make you feel any better, only know that now that I have met you, you and your son will be in my thoughts. No child deserves to be put through such pain, nor any parent such agony. All I know is that people, including our children, come into our lives to teach us things about ourselves and about life. Clearly, your son, with all his disabilities, has brought much deeper meaning and wisdom to your own life and the lives of anyone else he touches.
• United States
18 May 07
thank you so much. that child has definately brought a new meaning to my life, sometimes i feel like God may be testing me.
2 people like this
• India
18 May 07
Hi Alayna..!!! Infact i don't have any words to express, how much i feel for ur son... I love babies very much.. They r so innocent, and sometimes we do feel that why God is testing them... I nearly got tears in my eyes when i read abt ur son.. That's why i told u to chat later with me.. The moment u told me, i immediately started praying to god for the speedy recovery of ur son... I'm sure, our prayer's will definately work for him... I just feel pity on u and ur son... and i just ask god, why not me instead of ur son??? I can't see the innocent kids suffering from all this stuff... And i'm a very sensitive person... But anyways dear... i wish if i was there, and i could have helped u in whatever way u want... But still its my duty to cheer u up... So please stop worring dear.. Have faith in God.. He will certain help u out... I am sure, my prayers will definately help ur son getting out of this trouble.. So let's hope for the best... So when u feel depressed, just remember the smile of ur cute baby... That will certainly make u smile... I wish my all luck to you and ur child... and i'm always there to help u whenever u r in trouble... Atlast i will say that i'm ready to help u in whatever way i can... So all the best for u and ur child.. "O Jesus.. Please save that innocent child..!!"
• United States
18 May 07
see shrenik, u have made me cry. u are always so supportive of me, thanks for always being there and being such a good friend.
1 person likes this
• India
18 May 07
no dear... my intention was not to make u cry again... I just wanted to cheer u up.. Infact i was very emotionally down after reading abt ur son... But i listened to that song named "Numb" which u had added to my profile.. It always heals me when i feel down.. Thanx a lot dear.. i'm really grateful to god to have a friend like you.. God will definately help ur son.. i'm preety sure..
1 person likes this
• United States
18 May 07
much thanks, shrenik =)
1 person likes this
• United States
19 May 07
oh my goodness. i am so sorry to hear of the pain you are experiencing right now. i wish i had advice or wish i could be of some help...but i just don't know what to say. but you are in my prayers, your whole family is. what a special little guy you have, a special blessing. and it's not that God is testing you, BUT he knows you are strong, (whether you feel that or not), and he gave you your son to care and protect over him. to love and cherish. to do all you can. He made you the strong woman you are, to work with your son. i know that may sound silly, and or upsetting, that why would God do that, or put you thru that...sometimes we don't know what God is doing, His reasoning, BUT there IS a reason. i admire you honey, and you just keep loving that boy with all your heart. you are doing a fantastic job. i can be here to cry with you when you need it.
• United States
19 May 07
Much thanks. i'm really not a why me person, i can honestly say i have never once asked God why me for giving me a sick child. i think more along the lines of "why him".
• United States
20 May 07
oh yes, "why him". yes i can see that. how you said you wish you could trade places with him, why should he have to suffer so. i am crying as i envision you and your son, and how you are crying, and seeing him in the helpless state he's in. it's so hard to see kids suffer. and he's still a baby, ya know? my son is 3, and it's amazing how they grow, yet i still consider him my baby. i wish your family the best, and will pray and pray that he lives the happiest, fullest life that you will provide for him. you seem like a fantastic mother, and he is so lucky to have you in his life, to hold your patience with him, to love him, and to just be you.
1 person likes this
• United States
21 May 07
thank u so much:)
@bigcage (108)
• China
19 May 07
sorry to see that , when lost my family member my mom. i can't accept it for several years, but i must move, my dad tell me: you loved won't feel well if she know you're in such mood. everybaby is a angel, he cames ,he's smart, and what's more he'll be happy because of you.
1 person likes this
• United States
19 May 07
much thanks:)
@bigcage (108)
• China
21 May 07
so much people care about you ,you should be strong.
1 person likes this
• United States
21 May 07
thank you
@dixie1 (1330)
• United States
18 May 07
I write this with tears in my eyes. I'm so sorry for you and also, for your son. Is he still in the hospital? Talk to your doctor...I do not know if something like Boostplus would be an option for nutrition or not. Also, a friend of mine who had cancer, used a "peg" for year to get nutrition..your doctor should give you close guidance. You are in my thoughts and prayers.
• United States
18 May 07
no he's not in the hospital. they have scheduled to put in the tube next week. thanks for the advice, but he won't eat because he can't suck, swallowing problems and i have even tried to syringe but all that does is choke him because he won't swallow. i can't use boost or anything due to him having a milk and soy allergy. he receives prescription formula right now.
1 person likes this
@dixie1 (1330)
• United States
19 May 07
The "peg" will help him get the nutrition he needs. What else are they doing to give "YOU" some support and relief? Blessings, Dixie
1 person likes this
• United States
21 May 07
Absolutely nothing sadly enough. thanks
• United States
19 May 07
I can't even begin to imagine what you're going through. My oldest son has ADHD & Tourette's syndrome which was very hard for me to deal with in his younger years. Is there a way you could get involved in a support group if you haven't already? Having moral support from others who understand and share your experiences can be helpful. My thoughts and prayers are with your family.
• United States
19 May 07
The closest support group around here is 50 plus miles away, way too far to travel. thanks so much.
• United States
19 May 07
i wish u and your son a wonderful life. he's lucky to have a good parent. i think it is harder in their younger years, over time the doctors are able to find out what works for them along the lines of treatment. over time also, my son's immune system has become alot stronger.
• United States
19 May 07
How terrible for you, I wish that there were more to say to make you feel better, but I know there is not. Just remember to be strong but take care of yourself, too, because you need to be whole and well to take care of that precious baby. I wish there were more options for you to help him get the nutrition that he needs. I saw that someone else asked about support groups, that would be my suggestion. My husband and I lost our only daughter to SIDS and it was terrible. The best thing that we did was to get together with another couple near our home, and be able to discuss our feelings and issues with someone who had experienced the same thing. I know that you are a wonderful person just by reading what you do on a daily basis to give your son a good life. I know that the quality of life for him may seem bleak to you, but I am also sure there must be some good times, too. I wish you the best of luck and I will keep both you and your son in my thoughts and prayers.
1 person likes this
• United States
19 May 07
i'm so sorry for the loss of your child, i'm so glad u are a strong person and have learned how to cope. thanks so much.
• United States
20 May 07
Thank you, and I know that you will learn to cope with everything that goes on with your son. I wish you the best!
1 person likes this
• United States
23 May 07
I'm so sorry to hear about this. I wish you the best of luck with this. I will be praying for you. I don't know what you are going through so I'm not even gonna say I do. I just know that I can pray and that prayer works.
1 person likes this
• United States
24 May 07
Much thanks, prayer is the answer to everything.
• United States
23 May 07
I'm so sorry. I don't know what to say. I couldn't imagine having to sit there and watch my child be in so much pain and not be able to do anything about it. My heart goes out to you and your family and I hope you could find the strength to get through this. (((HUGS)))
1 person likes this
• United States
23 May 07
much thanks melissa528. (((hugs))) right back.
@xmanifold (456)
• Nigeria
22 May 07
hi dedicated it's really touching to know that that's what you go through everyday,i'm very very sorry for you and especially your lovely son;he is lovely cause God gave him to you and please stop crying because you'll smile at the end of it all
1 person likes this
• United States
22 May 07
thanks so much, i'm sure that i will smile:)
@KissThis (3004)
• United States
21 May 07
Hey Dedicated, my heart is hurting for you. I know how hard it is to take care of a child that is special. Everyday it is a struggle to watch your child suffer so. No mother wants their child to suffer in life. I always tried to look at the brighter side. Its harder to do some days then others. Remember, to keep talking about ti and not to bottle it up because it will make you feel sadder if you were to keep it bottled up.
1 person likes this
• United States
21 May 07
Much thanks for all the advice. You are such a good friend.
• Philippines
21 May 07
just pray. God wont give that problems to you if he know you cant handle it. i'll help to pray for your son's health and recovery.
1 person likes this
• United States
21 May 07
thank so much. welcome to mylot:)
• United States
19 May 07
I really can't begin to understand how anyone in this position feels honestly. All I can offer is my support in the power of prayer. I believe GOD can do all things! I'm a firm believer in miracles, this is because I'm not supposed to be here today but I am! I'm very saddened that you are very sad, but then that's how moms are when things go wrong, so it's normal. I will hope and pray for the best possible outcome, it might not happen instantly, but in GODS time he'll come through and thngs will all work out for good. Just try you best to keep your head up, I'm always here to talk anytime anyone needs someone to listen...God Bless :)
1 person likes this
• United States
19 May 07
thanks chrisrock619, you are such a good friend. thanks for the advice and reminding me that my reaction is normal and i'm just not going crazy. i will also be praying that you will get better, rest is the best medicine.
@makingpots (11916)
• United States
19 May 07
Oh, dedicated, my heart is breaking for you. I feel like I have nothing to say that would make you feel better. But I will promise to pray for you and your family. I know that my child has gone through some time frames when he has not wanted to eat much for one reason or another, perhaps your situation will turn around eventually. I hope you are remembering to take good care of yourself as well. You have to be strong physically and mentally. If mental health support is difficult to come by for whatever reasons, I recommend you start visiting churches and ask for support with it. You might be surprised at the help they could find for you.
1 person likes this
• United States
19 May 07
thanks so much for the advice, all this stress definately does tear a person down mentally and physically.
@TerryZ (22078)
• United States
19 May 07
Hi dedicated my heart does go out to you. Please dont cry and dont be sad. It sounds like your taking very good care of your little sweetie. And by the way he is so cute. You must be strong and continue to stay strong for your son. I wish you all the best and will keep you in my prayers. Hugs to you.
• United States
19 May 07
thanks so much for your kind words. that is mylots pic though. i haven't uploaded a pic yet because the only ones i have right now he has a tube up his nose and some other things. i don't want to make everyone cry with me.
• Pakistan
19 May 07
i feel so distressed with your situation. a 2year old baby, and having to cope with so many problems. poor little darling soul. there is nothing that prayers cant achieve, pray to God with all your heart, be very sincere, and then depend on Allah fully and leave him to sort out your matters, and only trust him in this situation. i am a muslim and believe me, when we trust Allah and believe that no one but He can save anybody, it usually happens that you learn to surrender in front of Him and then he takes you out of your troubles.
1 person likes this
• United States
19 May 07
You can achieve anything with God, thanks so much.
@windhair (498)
• Germany
19 May 07
So painful to read this for another family suffering the CP problem. My nephew has just the same like your son, I have already heard so much about such situation. My nephew always got ill after the birth, he even stay in the oxygeon cabin for several days just after the birth. He was so thin and very weak when I sew him first time. But, we have some good news also, when he was 4 years, he begin to act better, there is a big improvment. Yes, there is still small difficulties, but mostly he act like a normal child. My words are, be patient, try not think too much about the delay, at the same time, try to force him to get enough nutrition, it is hard to change the diet of a small baby,maybe he will cry a lot, but is this important, after several hard days, he will begin to suit to the new food. Good luck, dedicated 28. Please accept my best wish for your son and you.
1 person likes this
• United States
19 May 07
thank you so much, it's always nice to receive advice from someone who has been through it.
• United States
19 May 07
I'm so sorry for your difficulty. May the Lord Jesus hold you in His Loving Arms and give you the strength you need for this time of testing. Only the Lord knows why. We just need to keep our eyes on Him and ask for His strength in time of trouble. He will walk with you and comfort you. He loves that little one more than you know and why this has happened. Draw your comfort from Him and cry when you need to. He holds all your tears in a bottle in Heaven. Praying for you.
1 person likes this
• United States
19 May 07
That was beautiful and gave me a sense of hope. thanks so much.