It happened again. The reality of life with Spina bifida knocked me down and kicked me in the face yesterday. I hope you don’t think everything is easy when you read posts here but I also don’t want you to think it is all hard. It’s like any life, a mix of both. Yesterday was one of the harder days.
I took all eight kiddos to a Cub Scouts pack meeting with Joseph’s pack all by myself. It’s the one night each month that families are invited to come and participate. The plan was a bonfire. Fun, right?
While there were many places on the church grounds where the bonfire could have been held they chose an unmowed weedy field mixed with downed trees and holes. I couldn’t get the double stroller over to the fire, much less Mason’s wheelchair. Ouch.
Mason couldn’t crawl around in prickly weeds that would have been over his head. So the bonfire area where all the adults congregated was out. Ouch.
Then all the children were playing in a culvert overflow area by the bonfire field – steep sides and about 15 feet or so to the bottom – running and climbing up and down. All the children except Mason. There was nowhere for him to play and as my husband wasn’t even off work yet I had tired baby Samuel in my arms crying and couldn’t carry Mason down to the bottom to play with him. Ouch.
Meanwhile not a single adult said hello. Or waved. Or acknowledged my presence at all. I was 20 feet from the fire area and alone. Overwhelmed. Unable to help Mason play with the other children and unable to do anything else. Ouch.
When my husband got there and bees started bothering everyone we packed up and left. Twenty-five minutes after I had arrived. Exhausted. Discouraged. In tears.
Real life with Spina bifida. It’s not all fun. Came home to the lovely job of giving an enema and cathing. Great way to top off an evening, right? I think an extra pair of arms would be nice. Or at least an accessible world. Sigh.
I'm sorry. Really. I hope the next family event is more fun.
ReplyDeleteI'm so sorry that happened!
ReplyDeleteSo sorry! What a bummer :( I would cry too... actually I would probably throw a hissy fit.
ReplyDeleteTristan, I am sorry that happened to you. I think your blog over at Our Busy Homeschool was one of the first blogs I followed. I always look forward to your posts about homeschooling and about your sweet {and handsome} Mason. You are such a great mom. Thanks for sharing on your blogs. You are an encouragement to a lot of us on motherhood, homeschooling, budgeting, family life, etc. Thanks for showing us how it can all be done and for being honest about some of those less than stellar moments we all find ourselves in sometimes.
ReplyDeleteThank you for posting this. It's hard to post the discouraging moments, but I appreciate this one that you posted. It made me wonder when I have unintentionally left someone out who really needed my help. I think it's hard to take my six kids places without my husband (and I'm not dealing with a wheelchair!) Thank you for the service you give in posting your experiences. I hope you had the cry you needed to feel better.
ReplyDeleteThat is so sad and a lesson to us all to try to be more sensitive to those those around us. ;( So sorry you had to go through that. {hugs}
ReplyDeleteso sorry this happened to you. i so wish i could know you in real life. lol.
ReplyDeleteThank you everyone. I did have my good cry. And I agree, one thing this life parenting a child with disabilities is doing is opening my own eyes to where I can be more sensitive and aware of others needs around me. I know I have a long ways to go in that area too!
ReplyDeleteThat's terrible! You should have called me to come down. I would have driven down to hang out with you guys! For real, next time, NO suffering in silence! Not while I'm here. PS, the pic of Mason on the potty from the last post is adorable. He's such a little man.
ReplyDeleteToo bad I wasn't there I would have loved to help you with your little ones, I am the one that never gets to hold the babies when they are around and that is my favorite thing to do...how frustrating but thank you for being "real" and sharing with us, you are on my prayer list daily! You made the effort and that is what counts!
ReplyDeleteI get you. My eldest has CP and while she can walk stairs are hard and running is nearly impossible. We've had times like that too. And with a baby everything seems more complex.(I have 3 kids 10, 6 and 5) Hugs
ReplyDeleteI so sorry to hear that happened to you and Mason. blah. ((hugs)) You are an inspiration to me and I look forward to all your posts on anything. You inspire me to work hard with my family. I wish things were easier for you but you are so strong, and take things in stride but sometimes a good cry is what you need. :D We will pray for you!! If I lived by you I would jump at the chance to help out with your sweet family and get a chance to hold those lovely babies of yours.
ReplyDeleteYou were MORE THAN ENTITLED to cry, Tristan. You are normally so positive here, and I sometimes wonder if life can really be that easy -- because I know even in my house (and we have no special needs children) life is just plain difficult on some days. I think it stinks that no one said hello or offered to help you. That is really why I would have been crying - at people's lack of acknowledgement.
ReplyDeleteHugs to you, my friend. I wish I would have been there. I would have hung with your two cuties and you could have enjoyed the time there. ;-)
I really feel for you. It's extra hard to be among those who should see our obvious needs and to go unnoticed. Parents of children with special needs are often in a sea all alone. I think it's a continuous grieving process for each thing we discover our children miss out on, can't do, or how hard it just plain is to keep up with all their needs. Our own physical limitations are a pain in the neck, too, like needing more muscles and another pair of arms and a stroller that can levitate and self-propel. I'm dying to take the "big" stroller out of the car, but I know that the day I do it, my special kiddo will need it. I hope your husband pampered you a bit and that you were able to vent sufficiently over this and that the enema went well and produced in a timely fashion!
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