Seeking Moms That Are Caregivers of Child with Brain Injury

{{{{{M.}}}}}

I have a 6 yo son that had a TBI as a baby from the DTaP vaccine. We have 4 treating physicians and a judge that all agree.

My son has global issues too much stuff going on to list all here. I would be happy to email with you. ____@____.com

Suffice it to say, t has been a very long hard row to hoe for the past almost 7 years. It is getting easier as time goes along because we have dealt with the grief of losing "what might have been" and the anger over the situation in general. Not that we don't have feelings that come up, it is just easier.

I am a member of 2 online groups of parents and caregivers whose children (both young and adult) have neurological issues; many severe.

http://brain.hastypastry.net/forums/forumdisplay.php?s=28...
This is Child Neuro. There are families here with adult children they care for. There are also other forums within the Braintalk Communities that may be supportive for you.

There is also www.differentabilities.com. This is a private forum that requires permission for entry. Many of the people on Differentabilities have also been on or are on Braintalk. Braintalk is a public forum while Differentabilities is private.

I don't want it to sound like I think you aren't welcome here and can't share here on this site. You are welcome here and these people are very supportive. These other groups have families that have experience in walking this path and some very cool ways of dealing with various issues.

And no you are not alone. I love my neuro support groups. I would be lost without them. Facing the health issues we face daily and dealing with the myriad of Docs, Therapists, and community issues... These families are my life line.

B. (this is my tag line on both support groups listed.)

Please allow yourself to have a break, and you will find that you can care for your family with a fresh outlook.
I cannot speak from personal experience, as I am not in the same situation as you with your children, but as a fellow mom, you need to take care of yourself so that you can provide care for others. Part of taking care of yourself is allowing yourself to do the things that others do. Go shopping, read a book, see a movie, go to church etc. How is your health? Are you getting exercise, eating right?
Look into getting a least a few hours a week where you can do something for yourself to give yourself a sense of self.
We all understand that you love your children and your feelings are normal. I will add you to my prayer list. Seek Prayer and Gods Grace. If you want to contact me personally my number is ###-###-####.
J.

Are you needing any clothes for the 4 year old little girl? We have alot of summer and winter clothes that we have bought our 4 year old daughter. Alot of the items are new and simply didn't fit her. I will give them to you just to help you out. Please let me know.I am praying for you. Thank you. T.

God Bless your heart. My heart goes out to you my dear. I cant even imagine. Just know that Gods word says He will put no more on our shoulders than we can bare. He knows your every need before you even ask. He allowed your son to stay here with you and your family for a reason instead of calling him home. Maybe to lead a path home for someone or maybe God is going to use him in a magnificant way. A MIRACLE. Yes I believe in miracles for they have happened in my own family. I do not know the way you beleive but I do know what the scriptures teach me. If you have already prayed that God would touch your son and heal him, then start praising his name and thanking him for having victory in his life and yours.You only have to ask God once. After that start claiming his victory. Pray victory over your son. God Will bless you. His words will not fail. He promises his children who seeks him and is obediant to his word. Every knew day thank God that you have one more day. Ask him to guide you and direct you in the way you should go so you can be a light for his kingdom. Read a scripure to your son when you get up in the morning. He needs to hear the word also. Pray with him. I know how easy it is to get so lost in your daily chores and everything you have to get done. All the problems and everything else that goes wrong. At those times we forget that their is a higher power than ours. I have done it myself. I have learned the hard way. Thank God for everything in your life. The good and the bad. When something bad happens thank him and know help is on the way. HE LOVES YOU AND YOUR SON. His grace and mercy is upon you. He only picks special people as yourself to go through something like this. He knows you can do it or he wouldnt have allowed it to happen. The will of God will never take you where the grace of God will not protect you. With that I will say I love you in Christ and you are in my prayers. If you need anything just e-mail me back ok. I will be here for you anytime. Take care and God Bless you and yours.
S. B.
P.S. I do not know if you will do this or not but anything is worth a try. I took care of my Aunt who has been on a feeding tube for 12 yrs. She canot do anything for herself. I have to take care of her as though she is an infant. She has good days and bad days and it does make me wonder how God can allow someone to live in that condition but yet call someone home who is young and full of life. She is 82. But any way my twin sister dragged me to this meeting one night which I was totaly against going. It was one of these meetings where you have to start saling stuff and you make money off of it. One of those deals. So I went actually to shut her up and get her off my back. My twin and I are extremely close. But anyway it was a meeting about this juice drink called Mona-Vie. You drink 2 onces in the morning and 2 in the afternoon. I started to drink it my husband also. It has done wonders in our life. I have pretty much quit taking all the medicine that I was on so has my husband. But this juice is made out of nothing but berries. 22 different ones. It is not man made like all the pills you take. It is God grown. Mona-stand for tree of and Vie stands for Life. The tree of life. Doesnt the Bilble teach us to take from the tree of life. I can send you info regarding this. But I started giving it to my Aunt through her feeding tube and oh My God what a difference. She is so much more alert and she is even tring to get verbal with us. She stays awake all day now instead of sleeping. It had made a wonderful difference in my Aunts life. She has a deseise called PSP ( progressive supernuclear pullsy). Only about 20 thousand in the world has ever had it. There is no cure for it and they do not even know what causes it. But like I said it has changed her life and ours. If you would like to know more just let me know.

I have no experince,But caring for your son instead of putting him in a home or hospital is amazing.I read this and I'am glad that you are caring and nuturing your son back to health.And to care for another child who has lost her mommy. There will be good thing's coming your way after all you've done The good Lord watches over all of us.Unfortunatly traumatic thing's do happen everyday in everyone's lives. Keep your head up and seek the Lord's guidance.
sahm of 2

Hi M., I can't even begin to understand what you are going through as I have not had any incidents in my life that even come close! I noticed there are no responses here, and I am sure you know you are not alone! My heart goes out to you and your children, it can't be an easy task. Maybe someone will respond to you here, but continue to search through Children's Mercy and the doctors that you deal with. Good luck and God bless!

What a strong person it sounds like you are. I'm so glad to hear you are looking to your faith for help. I have not experienced anything like that, but could you maybe ask your son's physician if he knows of any other families in this situation? I'm sure he has to keep most things confidential, but he may know of a support group or something. He sees situations like this all the time I'm sure, so he must know of some place you could go for support. Hope this helps, and I wish you all the best!

First, know that you have my total support. You have taken on a monumental job, I know, I have been somewhat in your position, but to a different degree.

My oldest son suffered a brain injury in an accident over six years ago. He is now 47. We were estranged by philosophical differences at the time, and I knew nothing of it until his brother casually mentioned that he had been in an accident.

He has had clinical depression all of his life, and the injuries to his head created additional problems. After his third suicide attempt, he finally contacted me and said, "Mom, I am drunk, depressed, homeless and I will succeed on the next try", not a good opening line after some seven years of estrangement. I convinced him to contact the crisis center to send someone to come and get him, then to call me right back. I kept him on the line until they arrived to get him. I knew that I would be unable to physically handle him in the event that he became defensive about being committed for the mandatory 72 hours.

It was the next day before I was allowed to see him at the center. He was deathly thin and looked nothing like the child that I had given birth to. He had been sleeping on friends couches until they all feared that they could not handle him any more.

He had been under the supervision of a state funded mental health outreach program, and subjected to repeated (3 times week) electroconvulsive therapy. Without family involvement, he was literally being used as a guinea pig for tolerance, and was so messed up that he was devoid of most memory functions, 'walking dead' was his self description.

Long story short, we brought him home, got power of attorney and immediately stopped the ECT. It took some time to adjust medications to control seizures and self destructive behavior, including alcohol, but eventually, he began to improve. He will never be completely 'all right', but has progressed to the ability to move to more independent living, sharing an apartment with a friend who is similarly disabled. Living at home with mom was undermining his sense of self esteem. He is on Social Security disability and state assisted medical care as his medications exceed $2000 per month.

I still retain the medical power of attorney and have been appointed his financial guardian, but am so grateful for the progress thus far, not to mention the blessing of reconnection with him. He has three teenage children and an ex wife who would all bleed his finances dry in a heartbeat. He feels guilty that he cannot support them as he did before the accident, so they play on that as often as they can.

The ups and downs of having a brain injured child, whatever the age, can seem overwhelming at times. You are so right to have put it in Gods hands.

Locally, we have a brain injury support group, there may be one in your area. Because of my own disability issues, I have done most of my support seeking on line, and have met some terrific Moms like yourself.

Good luck and God bless you.

I've not had a similar experience but I thank you for caring for your son and his daughter. What is good and right is not always easy or fun but God will bless you richly through your work. Thank you,
another mother

I don't have a child with TBI, but I am a person with a serious brain injury since I was 16 yrs. old and I'm 31 now. I was in a auto accident too. I was walking across a street and my head went through a windshield. My heart stopped twice and I was in a coma for 16 days. For about a month after, I had to keep asking what my name was like 5 min.'s later! I had cognitive, speech and physical therapy. I had to relearn how to walk again and everything else again. Well, as he grows up and he learns how to deal with all this better with help, your love, and most important, with God guiding him, he probably will overcome some of his struggles. I irritate people that live with me with my bad memory at times, but I thank God their still here with me and putting up with me. I overcame alot and I believe he will too. I am so thankful of being alive. I used to be suicidal, isolative and a mess as a teen before my accident. But afterwards, I realized I have purposes of being here like all of us do. I am so thankful for the accident. It made me a better and stronger person inside. I talk too much now, though and go into too many details too. I hope this testimony may have helped somewhat on what he may overcome. I didn't mean to talk too much about myself, but I hope he has a possitive outlook on things too and I also wish him a good life and for you and your family to handle things ok with some help out there. I'll pray for all of you. Oh! Another thing! Do you know if he has seizures? I didn't know until I was about 23 yrs. old if I had them. They were'nt noticable for me. There's all different kinds of seizures. Mine just causes a numb feeling and a feeling of out of sorts, like I'm 1/2 way real for a few min.'s, or something like that. I don't shake at all. I've been seizure free for about 1 yr. and only had a few in the past 5 yrs. or so. I take medicine. That's another thing! I didn't always remember to take my meds! That's why I had seizures off and on after starting my medicine. Well, I take them alot better than I used to now. Also, God has blessed me with 2 children, which my pregnany were really high risk. Both pregnancy were tough, but in the long run the children have been in good hands. God's hand. My 13 yr. old daughter has been on the A honor roll for years and she's pretty smart. Sorry so long. Good luck and God bless you!

I cannot even begin to know your pain and suffering. However as you pointed out God does. He seems to never give us more than we can handle even thought he trials feel as though the burden is to heavy. I lift you and your family up in prayer and say what an extrodinary person you are for giving your Son the love and devotion you have. I would do the same for mine. Please continue to do Gods will and he will take your son home when the time is right. There are reasons for all things and he has a plan and a lesson in each of us. Take care of his child and love her as you do so she can grow to be a wonderful person. Nothing is more important than God and family.
Heavenly Father I pray you will give them Stregnth, Wisdom and Love to carry on with your plan. In Jesus name we ask Amen. Please write anytime I will try and keep you encouraged. M.