Sorry for those waiting for this post. Remember that for every comment that you leave, your name will be entered to win one of her books (there are 2, so 2 people will get the book!)
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September 4, 2009--Grand Rapids, MI--If your child or the child of someone you know struggles with a life threatening or chronic illness, then you know how all-consuming such circumstances are. There's no such thing as having a "normal life," only a relentless and often lonely roller-coaster of giddy hope, streak fear, blessed victories, and shattering defeats---and constant prayer.
Jolene Philo knows how it is because she and her husband have traveled the road with their own son. In A Different Dream for My Child, Jolene shares frank, heartfelt meditations to build your faith and hope. You won't find trite, easy words. You will find rare understanding, refreshing honesty, and a wise spiritual companion to walk with you through the highs and lows that only the parent of chronically ill children can know.
We avoid the subject of chronically ill kids and the needs of their parents because it makes us feel uncomfortable. But each year, 10% of newborns spend time in the neonatal intensive care unit (NICU), and over two million children are hospitalized. When the parent's needs are met, they can better meet the needs of their sick children.
I have had the pleasure to meet Jolene, she is a fantastic godly woman. I really enjoyed her book and even though I have not had a chronically ill child, we have had hospitals stays with both oour girls and I could relate. her prayers are beautiful and touch the heart. This is a book that I will keep close as we travel the road with Nina and her medical needs due to Cerebral Palsy and little medical intervention.
Check out the book trailer on my previous post A Different Dream for My Child #1
I am new to parenting children with special needs but daily I wrestle with the emotions of will they get better? will they be independent? should I push them or baby them just a little? and then there is the whole disabled bathroom issue. I was not even HOME with my adopted child and I was chastised for using the disabled bathroom in the airport. if it isnt for the people who need it who is it for? I was so angry I bout cried at that one. I am still learning how to be the best advocate for my kids. still learning how to balance their needs and mine. still learning how to balance the needs and abilities of my other children without leaving out those who just plain cant do what the others want to do. its a roller coaster ride daily.
ReplyDeleteOne of the stories that Jolene follows is of a couple that has two kids with arthroprygosis (I think I just misspelled that one!)
ReplyDeleteAnd I read her book while you were getting your kids, I thought about you of course :)
I haven’t heard of her or her books. I live in fear of something happening to my children.
ReplyDeleteThen that triggers me to think of all we have been through, (cleft lip and palate, Aspergers, OCD, Tics that is just our first child) then to only realise there are so many worse things that could come our way.
I was shattered when our daughter was Dx with Rheumatoid arthritis at 10yrs and then that Dx changed to MCTD after a few more blood tests, then to nothing now, but she still has all the symptoms and pain. I struggle so much and was so angry with God, Tay is our healthy child, she isn’t’ supposed to get sick. Ugh I know that sounds silly but our boys all have something going on, it’s too much sometimes. And as you said we don’t’ like talking about sickness. Even posting I panic, thinking what if THIS, typing / thinking / talking about sickness somehow triggers something else. Scary
It would be nice to think that tragedy or difficulty would never be part of our world. But, without such, we would stagnate, never change, and be ungrateful for what we have. It is a hard lesson that spiritual growth and maturity usually come through tough times. I still would rather stick my head in the sand and pretend it couldn't happen to me, though. Sigh.
ReplyDeleteI read your article in Gifts 2 and I was really touched. I have a son with Down syndrome. He is a twin and then I also have another little boy. The twins are 3 and my baby is 1. Right now I am in yet another phase of dealing with DS. Thanks for your article.
ReplyDeleteMoon Dog, Tara, and Cathy,
ReplyDeleteYour anger and fear are a normal reaction to parenting special needs kids, and you shouldn't feel guilty. Instead, find a support group or someone who understands what you are dealing with, someone who will support you.
Remember that God puts people in your life to show His love. Also, He knows what you need and how you feel. That's the message of my book and what my website tries to do for parents like you.
Gage, I tried to go to your blog but it is private. If you want to you can contact me via e-mail just click on the link :)
ReplyDeleteWe were sent this book by Earl Taylor from Hidden Acres - Jolene is a friend of theirs and lived not far from here, Pilot Mount. Funny, I was going to get a copy of this book for you. Maybe she could be invited up sometime.
ReplyDeletethe book caused discussion between Mike and I as one story was of a daughter with ALL.