Today I was going to participate in the Finish The Sentence Prompt hosted by the fabulous Kristi of Finding Ninee and her friends Mardra and Kenya. Instead I am sitting here with goosebumps, sick to my stomach.
When your child is diagnosed with cancer, mental illness, a Syndrome, ADHD, Autism, (put your child’s struggle here) or PACS1 a parents first thought is usually a variation of HOLY CRAP to what the heck do I do now?
The truth is, there is no road map to parenting a child who has more than typical needs.
- Whether it is learning that your child is not suffering from normal teenage angst but a serious mental illness.
- Whether it is learning that your child just isn’t making milestones but is seriously behind their peers
- Whether it is learning the worst news a parent can receive, that their child may have a terminal diagnosis
- Whether it is learning that your child has ADHD, something too many people think is a made up word for bad parenting
- Whether it is learning that although you always fed your child healthy meals, that child is now bulimic or anorexic
- Whether it is learning that your child committed a crime, even though they are a straight-A student
- Whether it is learning that your child was killed in a drunk driving accident, even though they were sober in the car
When a parent learns any of the above (or worse), that is sometimes all they learn. They may be given a pamphlet of with website information. Their child may be placed on medication. Yet from this moment on, that parent is facing the battle to have their child survive without any clue of how to start. Continue reading
I was asked recently about “fixing” Bridget. I was very happy Bridget wasn’t there to hear the question.
I understand that Bridget is different, but I do not want her to see different as bad or something that needs to be “fixed”. She isn’t a flat tire but a person. Continue reading
If we were sharing a glass of wine, I would thank you for being my Valentine and why you are so important in my life. Continue reading
I used to be the Clark Griswold of Christmas. I decorated every room in the house. I put ribbons, bows and labels on gifts. One year each member of the family had their own individual wrapping paper. I was the hostess with the mostess, a caterer could not put on a better meal. I knew exactly what I was getting everyone and planned out the holiday season to the moment. Each gift was chosen with thought and care. There was a time when I would shop throughout the year and remember where I put the gifts. Continue reading
When you first enter a Children’s hospital, scared out of your wits, most likely you will see a plaque or a friend will send you the link to read the poem, Welcome to Holland by Emily Perl Kingsley. You find solace, at first. Knowing that another parent understood how you are feeling at this moment. At this moment when your child is not the one you planned but the one you must make heartbreaking decisions. You prepared for one journey and ended up not even close to where you planned. Continue reading
The other night I had a too-real dream of Bridget dying; by drowning. The dream so real, I woke with tears on my face as I hurried to her room to check on her. Me, a person who when asked would claim she never has anxiety and thinks she is cool under any circumstance. Here’s the dream: Continue reading
I recently received an e-mail from a mom who is just beginning her special needs journey. She googled a few terms and this blog showed up in her search (wow!). As I read her e-mail I was suddenly taken back to that place. The place where I was completely overwhelmed and wanted Dr. Google to explain what was wrong with my child.
I remember looking into this face and feeling so overwhelmed and ill-prepared to deal with a child who had health issues. Not knowing in that moment that this would actually be the easy time. A time when we were cocooned with doctors and nurses just a call bell away. Continue reading
A fellow blogger, Jamie, did a recent post entitled “if we were having coffee”, what would she say to the person across the table. I thought it was a great idea, but I don’t drink coffee. Thus the change in title.
If we were having a glass of wine I would tell you about the hectic weekend we had moving my parents moving from Virginia to our home. That we left at 3am on Friday for Logan airport, flew down and packed up her house. That we left VA at noon on Saturday and everyone in the free world was on Route 95 so it took us until 4am to get home. That it was only possible to do her move because we have a great village of supporters who took care of the girls, the bunnies and the Bailey. How much I appreciate the gift of friendship and families. How glad I am that both our parents will be in close location of their granddaughters and the positive changes happening in their lives.
If we were having a glass of wine I would tell you how I seem to be on a World War II reading binge. In the past month I have read The Nightingale, Unbroken, The Heart of a Soldier, I Lived a Thousand Years: Growing Up in the Holocaust and am just beginning Escape from Davao. I would ask if you had any recommendations for maybe a lighter read.
If we were having a glass of wine I would tell you how excited I was to be leaving in a few days to go camping with our friends. Our annual retreat where there is no WI/FI or cell service. The one week a year where we completely unplug from the world. How we were looking forward to floating down the river, campfires and community meals. That I would be using this time to hopefully break the Facebook obsession that is taking too much time away from actually living life.
If we were having a glass of wine I would tell you how I am currently failing in my running goals but that I hope to get back up to speed and dedication soon.
If we were having a glass of wine I would tell you how I feel the summer is slipping by faster than I can breathe. That while we have traveled and taken vacations it seems like September is coming faster than expected.
If we were having a glass of wine I would tell how nervous I am about all I have taken on recently. That I am worried I am doing too much, yet not enough. I would ask you where you thought I could extradite myself from or how to manage my commitments better.
If we were having a glass of wine I would tell you about how David has been working too much and we recently had a conversation based on the Zac Brown song, Free. How that someday we want that life. The one where it is just him and I in a van traveling the country. How before marriage, “real” jobs and family we would put the tent and dog in the car destination unknown. That we want to get back to that feeling of just being us, no qualifiers. That I miss that connection of my husband and yet am thankful that after all these years we still wake up and want to be there for the other.
If we were having a glass of wine I would ask how your week was and what was new with you.
So tell me, how are you?
Today’s Throw Back Post is about my friend Kaylee. A girl who is an incredible hero. Once again she is participating in the Polar Plunge to support Comfort Zone. The camp that allowed her a safe place to grieve and to grow. Please consider to once again donating to her cause. No child should lose a parent, but if they do then they need places like Comfort Camps. Her plunge is coming soon, Feb 28, 2015. Given the current arctic winter we are having, I am hoping she doesn’t have blizzard conditions!
I am in awe of children. Children who want to make a difference in other’s lives. Whether it is a huge movement like Malala or providing comfort for another child. I would like to introduce you to a beautiful seventh-grader named Kaylee.