Does it ever get any easier when your child has a terminal illness

Beverly - posted on 05/28/2010

My daughter also has Lissencephaly and guess what? She is now 14yrs old and everyday with her in my arms is a true blessing. I have 4 other kids who never complain they also love her deeply!! I would love to chat with you sometime.



God bless

Mei-Li - posted on 05/17/2010

My son has Lissencephaly. It is really difficult. At times I feel rather alone because the doctors don't know much about the disorder.

Laura - posted on 07/26/2009

I don't know if it does or not. I have good and bad days. Today is a good one. My son has progressive epilepsy. He is adopted and was born at 34 weeks with a lethal dose of meth in his system and was drunk. We were told they didn't think he would make it. 4 days later he was home with no oxygen needed even. Three days after that he was rehospitalized because the withdrawals and seizures were so severe the could not be controlled. They called in a chaplin to do last rights. 10 days later he came home. We were told he did not see, would never talk or walk. At 5 months old he started having uncontrolled seizures. Somewhere along the way though, we found he could see, he started to vocalize and at 9 months he was walking (adjusted age of only 7 1/2 months). He had seizure control for awhile and then at 18 months not only was all seizure control gone, there was a major loss of skills. He lost all ability to feed himself, well basically all fine motor and daily living skills he had. Another EEG was done and we learned that his seizures were not only increasing in intensity but was showing up in new parts of the brain. We increased his seizure meds and things did better for awhile until he was 2 1/2. He then lost whatever he had gained again. At that time we added in another anti-seizure med. The EEG showed again his seizures were increasing in intensity and were now in more parts of the brain. The seizures had started just affecting the frontal lobe and the area controlling the right side of his body. By 2 1/2 it was affecting those areas, his occipital lobe, and the area that controls short term memory. We were told then he has progressive epilepsy and it is a terminal diagnosis. No one can say how long we have with him but it is doubtful he will make it to adulthood. Right now we have seizure control, but it usually only lasts for a few months before it gets worse again. He's now in a wheelchair about 50% of the time, has to sit in a bath chair to bathe, a feeding chair to eat and a corner seater for the floor. At 4 y.o. he still forgets if we are home and who people are that he's known for years. He's just relearning to feed himself again, but he can now dress himself and draw a circle.



What is amazing through all of the seizures, the prenatal exposures to drugs and alcohol, he has no brain damage. The neuro can't figure out why my little man doesn't. His MRI's have been sent to Stanford and other teaching hospitals to see if they see anything along with his med records to see if our neuro is missing anything. Nope! Every doctor is stumped. There are continuous loss of skills with each set of seizures and yet not one bit of brain damage. All have come back with the same diagnosis though of progressive epilepsy. We go through each day hoping and praying for no seizures. I watch him sleep at night and just hope he's there in the morning. He's stopped breathing with the seizures before so we really do know it's just a matter of time. I think the hardest part is not having a definite timeline. I think it would be easier to know it would happen in a year or two, not just sitting and waiting never knowing when it could happen.

Shanon - posted on 07/25/2009

Hello jennifer would yo uexplain what is lissenceghaly?? my sone has Schizencephaly and it is clefts in the brain..He was born 2 weeks early and was a twin we lost her when I was 4moths along we know something was wrong but didnt know what.. when he was born the doc said he would never come home the part of this brain fo rhim to suck was not ther..Docs dont know it all he kne wwhat the boob was for an dhe had his fisrt sez 3 days after we got home nad as a young mom I didnt know I just held him and cryed for the hour... ever time we go to the dr.. he tell us he wont make it to be 5 then it was 7 then it was IDK how he is breathing the part that tells him to breath is gone...we give him to age 10 then 12 Justin is turning 15 in augest. All to the Glory of our GOd..he ha had a hard life and it has been trying and I have even prayed for GOd to go ahead and take him but that is not in his plans..so press on and take courage God has it all in controll an djust love and raise him in th eeyes of God..and remember the devil is her to kill steall and destory.. but we must stick to gether with the Power that GOd has in us to make to through every day..Now this lissencephaly will you tell me more about it and your son and what he does and dosent do.... L&L (love & laughter) tks shanon

Denise - posted on 07/02/2009

hello my son Lucas was born normal, started having seizures at 13 months, at age 18 months he started getting progressively worse, the doctors couldn't find out the problem so they diagnosed him with a progressive neuro degenerative disease and told me he is classified as terminally ill the predicted he would only live till 10 and his 10th birthday just past in march, it's a horrible feeling when you have no clue whats next, i do pray alot. i hope the doctors are wrong. i agree with you to i wish i could keep my boy forever, we just have to be strong and smile for our little angels. and pray god protects them no matter what.

Libby - posted on 06/17/2009

I'm so thankful that you had one of those days! :-D What a blessing!

Jennifer - posted on 06/16/2009

Thank you so much and you and your family will always be in my prayers as well! Thanks for understanding. I have had one of those days today! I have done hardly nothing today but rock and play with Wes! I know the house needs cleaned and the laundry needs done, but today I am just gonna be Wes, Beck, and Johns mommy! Hope to talk with you soon.

Libby - posted on 06/16/2009

Jennifer, I have been thinking of you and will continue to pray for you. Sometimes our burdens just feel like too much...and why do we have to carry such heavy loads when others don't?! But, you know, there is a reason, and even though I don't know it, I can't stress about it. And I say this more for my sake than for yours. I think ultimately our struggle is really to remember to have hope and faith in what our God has promised us, and to be thankful for all He has given. I was thinking of you today, and started to think what a blessing it is to have a special child--one who needs more attention. How wonderful that we can lavish love and care on them like our heavenly Father does on us. Usually I am stressed by watching and caring for my son--wondering what to do for him and what will happen next. But, I think for me, over the next few days, I will try to delight in lavishing my attention and care on my son. And I know you have other children, so you can enjoy caring for them as well! I'm praying for you, Jennifer.

Jennifer - posted on 06/12/2009

Thank you so very much for sharing your story with me! I know that the good Lord is the very reason why Wes is still with me and it is scary how very similar our stories are! Wes will be 4 in Aug. and wasn't suppose to make it to the age of 2! God has been the very reason I get through this and every other thing in my life! I would never ever want people to think I would take that for granted, but up until Wes was born I thought a appreciated everything and it really makes you stop and see that you really don't. That they are so many little things we complain about and take for granted that you don't even realize! I am so thankful to the good Lord he chose me to be Wes' mommy! He has changed my life and made me a better person and as with all my children, my world revolves around them! Thank you so very much and please keep us in your prayers as I will keep you in mine.

Betty - posted on 06/12/2009

My son, Scott was born nearly 22 years ago, 7 weeks early. The first day that my husband got to see him (he had to be taken to another hospital 70 plus miles away from where lived and he was born late the night before) the Drs. told him that his chances of survival were slim and it would be best for my husband to basically go home and start thinking about having another child. Needless to say the Dr was wrong! Scott may have had many many health problems but he lived until he was 16. Yes it does get better! Then you have those days that you think that it is your last. But my advice is not to think about those days. Cherish every good moment, relish in the fact that you do have your child with you. God is in total control, believe me. Scott's health had declined somewhat but on "that day", I thought that he was having a fairly good day. His death was totally unexpected. I think we put so much emphasis on keeping our children and wondering when that moment will come that they are taken away from us that we loose precious time with them. Just cherish and document the good moments and pray through the bad ones! God bless...

Jennifer - posted on 06/10/2009

Yes I know! I wouldn't have made it this far if it wasn't for God carrying me and I am so thankful that God chose me to be his mommy! Thanks for sharing your story with me and yall will be in my prayers!

Libby - posted on 06/10/2009

I totally understand how you feel. While my son doesn't have a diagnosis yet, I often am just so scared, and despair at the thought of losing him! I want to keep him forever--just like you're saying! For me, I am just trying to constantly remind myself of why we are here, on Earth, and that having Elijah (my son) for whatever time I am given, is something to be thankful for. I am trying to be more presently thankful--thankful for each moment, and delighting in who he is, in all of the ways God made him. I don't know if this helps you, and sometimes, I still fall into despair. But I try to put my trust in God's unfailing love and faithfulness, remembering that He is working for good, and that Elijah is a blessing that God has given me for a certain time--don't worry about how long it is, but be thankful for each moment we have.