If you ever need someone to talk to I know it is very difficult to cope with this type of diagnosis. Even if you want to talk at 3am - I seriously don't mind, I have called several people myself during those hours. Together we can fight these battles for our children.
Email: lizettehnj@gmail.com
Email: lizettehnj@gmail.com
Hi Lizette, I have been reading your blog. What a beautiful little girl you have. You are a great Mom...your heart is big...I will be praying for you and Aliyah and your family...love...Gloria
ReplyDeleteHi Lizette, I have viewed your blog. I am praying for you, Aliyah and your family...love...Gloria Phifer
ReplyDeleteHi Lizette, would it be okay if I asked my Bible Study to pray for your and Aliyah? Blessings...Gloria
ReplyDeleteYesssss pleaseeeeeeee thank you Gloria I am so glad I had the chance to meet you!!!!! Thank you soooo much!!!!!! This means a lot to me
DeleteHi there, nice blog, although heartbreaking reading. My son was diagnosed with IS at 5 months old and after a failed Vigabatrin trial was put on ACTH which stopped the seizures & corrected the hypsarrhythmia. He is now 15 and near the top of his class in 10th grade. An absolute Miracle for which i give thanks many times every day of my life.
ReplyDeleteI understand your despair. I remember with clarity thinking the exact same things, that I would never be able to play baseball with my son, or do any of the 'normal'things. Your writings about your feelings on this hit me like a freight train... it brought back everything like it was yesterday and left me shaken and in tears. However, i see that you never ever lose hope and that is essential. Yours is a heavy burden, an awful lonely ordeal which most people can't or won't understand. But you are not alone. Many others are going through something similar, and many, many more empathize and pray for (or 'will') some kind of positive development for you guys. You are reaching out to others in different ways and that will help immensely.
This journey has many unexpected positive things too, you will find, and much beauty if you know where to look. The utter kindness and mercy shown me by both family and complete strangers is what ultimately saved me & led to the healing road for my son
Anyway, I just want to offer some support & encouragement. Will pray for you & little Aliyah. I advise you keep your soul to yourself, don't even talk about bargaining it away, even as a joke (though I can sympathize with you; I would have made the trade myself several times, during my ordeal with my son's IS). Clearly, your soul is a most beautiful one and will be worth far more than its weight in gold many times over for your daughter and son throughout all of your lives.
And please remember: always keep the flame of hope flickering, at all costs, as all is NEVER lost so long as hope, in any amount, remains.
I truly wish all the best to you and your beautiful daughter, and your entire family.
J.
Thank you! Your comment made me cry, I wish Aliyah had the same luck as your son!!! I feel as everyday goes by the clock is ticking and we are losing precious time for Aliyah to catch up to her peers!!!!! Ahhhhh I am soooo desperate sooo desperate and do feel like I am going crazy because I want my princess to be normal.. I love her as she is right now but I still want her sweet 16, her prom, her to join a sorority, still dream of video recording her ballet recital and teaching her how to play a violin, teach her Spanish , I hate epilepsy sooo much sooo much sooooooooo much why did it take my daughter's potential and future from her... At nights I am very fragile because at this time she is sleeping and she cannot see me cry so I let lose around this time and remember everything she is missing out on.
ReplyDeleteGod, I feel for you...I know exactly what you mean. But it seems you are doing everything, & I mean EVERYTHING, you possibly can to give her the best chance. I'm actually astounded at your drive & dedication to seeing that little Aliyah gets every bit of help possible. That, and keeping hope alive, is all you can really do. After that, you just have to look at things and accept them, while hoping for as much positive change as is realistic. Your beautiful daughter IS normal, she is who she is, and she has done & will give you more happiness than you could have ever thought possible, but on HER terms. Sometimes the key lies in managing our expectations. She can still be a very happy kid with a wonderfully meaningful life, even if, God forbid, she doesn't quite manage to fulfil all our expectations of what her life ought to be. I don't know, just some thoughts about what I have come to learn years after my own ordeal with my son's IS.
DeleteWhatever happens, I continue to pray & will the very best for Aliyah and you and your whole family. I'll continue checking in to see how things are going, and to offer what support I can.
Hang in there, you are amazing!
Jay.
Reading your blog was like reading my thoughts. I wish you and i to be able to let go when that time comes to let go. Cause it's highly possible that it will come. Let go and still live - inside and outside.
ReplyDeleteWhat is left of my heart goes to you too - i hope you always find the strength to carry on and more. You are doing great! As unfair as this is, our kids were given to us because there is nobody better to take care of them and we can do it. If only I never forgot that...
"because there is nobody better to take care of them" I believe it! That is what drives me as a parent. We are the "chosen" ones for our children. Aliyah has forced me to grow up fast and shown me the true beauty of an individual. I hope you and your family are doing fine! please know and consistently remind yourself that you are not alone! Many of us are fighting the similar battles…. hugs!
Delete