Lately, I find myself having conversations I never imagined. Like the other day with Jayden and Brooklyn’s palliative nurse. Or the one I had with their sister, Ellie, on the floor of her bedroom.
I guess when two of your kids are labeled “terminally ill” these conversations are bound to happen. For those of you new to our story, we have 3 children, the two oldest, Jayden (10) and Brooklyn (7) have a rare and terminal disease, Sanfilippo Syndrome. Our youngest, Ellie (4) is does not.
This piece is part two of a series of blog posts entitled, Confessions as I Anticipate Grief.
WARNING: Friends in painful places, especially for my “me too mamas,” my Sanfilippo sisters. This is a difficult read. I wouldn’t have read it even a year ago. It just depends on where you are in your diagnosis. Just know it is here when you need it. But, I am 7 years in and this is our reality. A tough, gut wrenching, honest, reality. Sometimes it can be too much. But isn’t it all?
My intention is to share truth. Here’s what I promise if you choose to read. You will see me rise. Just like you are rising. We are not just surviving, but thriving in the midst. Death doesn’t win. We don’t drown. I am tired of trying to avoid the darkness, because light is so much brighter when we acknowledge how dark it is. Thank you for showing up in the meeting for a club you never wanted to join. Since we are all members, may these be our words. Continue reading “Confessions As I Anticipate Grief: part 2”
A version of this post was published on TheMighty.com
As a parent of two children with special needs, and one typically developing child, I get asked a lot about this topic. And to be honest, even after building our special needs ministry at church, and being part of the special needs community for 7 years, I am still learning how to talk to my 3 year old and her friends about special needs. So, yay! We can navigate it together!
Thanks for stopping by today! Last Wednesday, we started talking about a few phrases that are gaining traction around our house. These little phrases are helping us navigate conversations with Ellie about her brother and sister with special needs. And my prayer, is that they help you navigate conversations with your children about their friends with special needs. If you want to get caught up, you can read PART ONE here.
Continue reading “How to talk to your child about their friends with special needs: parttwo”
She’s starting to notice.
Ellie is finally at the age where she is starting to recognize that Jayden and Brooklyn do things differently. And she is asking questions. Good questions. The problem is, there’s no parenting manual for these type of conversations. Quite frankly, we are making it up as we go. A lot of our friends ask us how to navigate these noticeable differences with their typically developing children as well, so here is the first of two phrases that are gaining traction on our house.
Continue reading “How to talk to your child about their friends with special needs: part one”
Our doors and hearts are open and ready to include children and love families touched by disability at Immanuel Church!
I am so thrilled to see another dream become a reality. It really is a dual blessing-our children, and the story God is writing through us, has forever changed our church family, and they have forever changed us.
Continue reading “OASIS-Special Needs/Inclusion Ministry at Immanuel Church”
Because of the nature of my job, Justin never gets to go on overnight retreats with our high schoolers. I am in charge of all the details from booking, to schedules, permission slips, etc….except for our fall retreat. Fall retreat is with a number of other area churches and I don’t have a lot to do with the actual weekend so the option was open for Justin, instead of me, to go. So, with my blessing, he went but that meant all three kids, all weekend for me. Stubborn as I am, I really wanted to do this whole weekend with no help. I mean, I am their mom, how hard could this be?!
Continue reading “My Birthday Breakdown”
Today we went to Brayden’s 5th birthday party. Brayden is 10 weeks younger than Jayden, and they have been friends since they were born. It was a beautiful day and wonderful outdoor party, with tractor rides, train rides, yummy food and a play set.
I will be honest, it was hard to be there, seeing all of the boys Jayden’s age running and playing together, while Jayden played with us on the play set. He didn’t care. He would watch the boys then go back to playing with us, but it broke my heart. Parents stood around and lightly supervised their kids while they chatted about how as their children they get physically easier to take care of….while we tried to smile as we went up and down the play set with our kids. Our lives are just different. Not even bad. It was just a sad reminder of what Jayden can’t do, but a happy reminder that we are happy being different.
Continue reading “Oct 1: Brayden’s birthday”
What do you say to parents of 2 children with a terminal illness? I have been thinking about that. And, as one who now fits in this category, I have learned a few things. I used to be aweful with other people when they were grieving. I asked dumb questions and then probably tried to compare it to some less than comparable experience I went through, and then maybe prayed (or forgot to pray) once for the person. I am ashamed to say that, but it’s true. I am sorry. So, in light of that, I was prompted to write this.
Continue reading “What do you say?”