We had a really hard Sunday and Monday. We are back to a "regular" day for our family, and it's made even harder by keeping Danica's collar on and keeping her generally safe. There are a dozen phone calls I've made this morning which offer more questions than answers in many cases. We are stressed about why her symptoms are worse since we've returned, and she's been wearing the collar and how to respond to that. I will take Danica to her primary doctor this afternoon to set up all the scans and tests she needs for the Klippel-Feil diagnosis.
The statistics show that 40-50% of all marriages fail and this rate rises to 80% when there is a child with chronic health issues or special needs. Here's the additional stresses Dan and I are under right now:
• The financial burdens of medical bills and therapies not covered by insurance.
• The stress of battling with insurance companies or state funding programs, and navigating the maze of paperwork to get coverage.
• The loss of income due to one (or sometimes both) parent needing to scale back working in order to care for the child OR the astronomical expense of hiring specialized caretakers. (I am desperately needing to quit my job or take a leave. Please pray about how I can continue to manage everything I am doing and my own physical health.)
• Processing the overwhelming grief and sadness and coming to grips with the profound changes in your own life plans when faced with the long-term care of a disabled child.
• Watching your spouse process the grief, sadness and acceptance of your new life – his/her process will likely be entirely different from yours!
• The different points-of-view you and your spouse may share on exactly the nature of your child’s disabilities and the intervention steps to take.
• The opinions and input of extended family members – what your parents, in-laws, siblings and others think.
• Loss of friendships OR at a minimum, loss of time and energy to maintain outside friendships.
• Worries about your long-term future as a couple. Parenting disabled children changes your retirement plans, your ability to take vacations or explore enrichment activities.
• Finding appropriate childcare to be able to focus on your marriage by spending time together.
Won't you please pray that Dan and I will find comfort and strength in one another and our marriage and family will withstand this awful pressure we are under?
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MOST DEFINITELY praying for your marriage and the health and well-being of both of you!
ReplyDeleteHey, Monica. My name is Kate and I found your story about your precious little girl and your family from your sister on http://www.momslikeme.com. I've added your blog to my reader and am slowly getting caught up on your life and challenges.
ReplyDeletePlease know that you guys are not alone. You may not know me, but I'm praying for you and your family. My first daughter was born with severe torticollis. I'll keep reading your posts and praying for you all. Take care!
Oh Monica,
ReplyDeleteI know so well your very real concerns regarding your marriage. But, you know the statistics...keep your radar on...and when things just don't seem right together....stop whatever you can, take the time to make them right, and restore your relationship. Greg and I have recently been thru very similiar circumstances...and that makes everything else 100 times heavier for me. But we are back to supporting each other better, and the love is still there. We are weary, get testy, think the "if only such and such...things would be such a way" I could go on. But counseling...couples or family, maybe if you need that, is a good choice if you are careful about who you get...and God knows you need counsel....they actually give you permission to have the feeling you feel you shouldn't have, and to spend those extra few dollars to go out to a quiet dinner just the two of you...cause you need it. You definitely can't ignore the impact this has on a marriage...but there have been many who have stayed together and grown as well. Your husband seems to be hurting deeply...from reading his post a while back. Give him a hug from me. Love you you and your precious family. Love, Carol Crabtree and fam