A long, long journey - no longer hiding from life or the pain
- A long, long journey - no longer hiding from life or the pain
- Let’s start at the very beginning, a very good place to start
- Let’s start at the very beginning, Part II
I don’t talk much about our Princerella, well, not more than I do the others and typical funny things she says or does. I have on rare occasion mentioned that she has been diagnosed with Cerebral Palsy and goes to Physical and Occupational Therapy. I’ve frequented blogs of parents who have children with Down Syndrome and sometimes run across blogs of parents who have a child with some other medical need or ailment. I often find myself turning away from them eventually (with the exception of two) because I feel guilty.
I think about my Princerella and wish things were different. I wish she didn’t have these issues and problems. I feel guilty for that.
I wish we didn’t have to struggle with so much: potty training, behavior, auditory processing, others excluding her because she’s “different”. I feel guilty for wishing we didn’t have these struggles.
I sometimes even find myself wishing she had been born with an extra chromosome instead of the hand she’s been dealt. I feel guilty for that.
Why do I wish that? Why would I wish for something else or for other (read: different) problems? Because with a definite diagnosis (and one of Down Syndrome) we would be able to help her better (I tell myself) because so much has been learned. Because with that diagnosis she would be accepted more easily (I tell myself) because the world is changing and more and more children born with that extra chromosome are living with their family and seen in public and live their lives as normally as possible as compared to so many years ago when they were sent to live in asylums.
Because then I wouldn’t feel guilty for what ails her. Because then I wouldn’t blame myself. Because more is known about DS than ever before and getting her help and education wouldn’t be as hard as it is now (I tell myself). Because I would know I didn’t do anything to cause her problems. Because I just wish things were different some days. Because I just want a break some days. Because . . .
I just don’t know what to do some days.
I don’t want to lessen the load or the struggle of children who are born with that precious extra chromosome. They suffer some very serious medical issues and fights of their own. I know this. I know many and have experienced the beautiful people God created them to be. I don’t want to lessen the load or struggle that parents of children with Down Syndrome have. I just mean that sometimes a definite battle to fight would make life easier. But isn’t the grass always greener, over there, in that other yard? Because my grass has so many weeds.
I don’t want to lessen who my daughter is either. God created her and I love her, just. the way. she is. I don’t want anyone thinking I don’t love her, or care for her - just the way she is. She is beautiful! Just the way she is.
Some days are hard. Many days are hard. Some days are absolutely perfect. I need to talk. I need to write. I need to share. I need to open up even if that means I have to make myself vulnerable to what I don’t want to face. About my journey. I need to write about the journey we share. I need to heal. I need to find out if I can heal. If it is possible for me to heal. I need to find some support. I need to find others who have been there or are going through it now. I don’t want this blog to become all about this or her. But this is part of me; it’s part of who I am and what my daily life includes. She is a part of me. I am a part of her. I’d be a hypocrite to deny the struggle or that it exists. I read a post over at ParentDish (formerly BloggingBaby) that really touched me and kicked me in the butt to open this side of my life up on this blog. I am terrified to follow through on this. I am terrified of being judged. I am terrified of anyone using anything I write against me as a parent. I am terrified to face what I must face to write her story, my story, our story. Old wounds will be ripped open and will bleed heavily, but they will heal (I pray). I pray they will heal better and cleaner and with less scarring if I do this. I think they will.
Our family is so much more than her hemiplegia and hypotonia. She is so much more than her hemiplegia and hypotonia. I don’t want my blog to become a blog about her or her difficulties. I need to begin writing about our journey with her. I need to begin the journey of healing. I need to put some guilt behind me and journey forth with joy instead of with pain and worry. It is time, past time.
As this journey begins there will be some changes on my blog, some I am glad about, others I still hold with apprehension. One of the bigger changes you may see are the changes in the use of my children’s names. I don’t really like this idea and I don’t really like the idea of hiding it anymore (or at least making it harder to know). I will still often refer to my children by their blogging nicknames, but this is who we are and this I can not hide. There will be many post about Princerella’s story: where we’ve been and what we have left to do.
I hope this will not run off any of the few regular readers I have, but instead show you a different side of the SmockLady and my family. I also ask that if you know someone who could benefit from what they may read here that you would send them my way. You may know someone who is just beginning a journey we’ve been traveling for over five years now and they could learn from what we’ve been through. You may know someone who has been traveling this road for many more years than we have and could help us along our road. Maybe you just know someone who might be interested in what life is like with a child who struggles more than a ‘normal’ child.
I’m not a journalist or a professional author with many books or articles under my belt. I have been published in some professional journals related to my college studies, but that doesn’t count here. Another change is that I’ll be putting my 6degrees badge back up to help raise money for United Cerebral Palsy. There will be other changes too, but those you will just have to see/find for yourself. So come back soon, invite your friends and visit as I try to put some clarity into all of this.
Hey Lady. Buck up! SMile and know that God loves you. I once read that God only gives special children to the parents he knows can take it. God chose you and JA as Lottie’s special parents. I think that makes you one of the Chosen few. Love you.
1. It’s your blog and where it goes is your choice.
2. I’ll still read. I’m a struggling mama like the rest out there and hearing someone else’s stories can be very inspiring and uplifting. We need that love and support that only another mama can give!
3. I love your faith and that you’re not afraid to show it!
It truly is s journey dealing with issues like this that come up in our children’s lives. My son has had many issues, not DS, but issues that make you have to rethink what you thought their would have in store for them. However, I have realized that I have had to face many negatives with his issues there are also many, many positives. I am glad that you feel like you don’t have to hide…anymore and I hope that you never feel like you have to hide again.
oops
issues that make you have to rethink what you thought their *lives* would have in store for them.
Well, I know that there are difficult things to talk about in life, but certainly there is nothing wrong with the emotions God has given you about Princerella’s condition. They are as sanctifiable as the intellect, God did create them both. I have a nephew with DS, so it has hit us close to home, and even though he lives 6 hours from us, it has increased our awareness of how all of mankind is made in the image of God, not just “normal” people. So, I say—write away and share your concerns, victories, sadnesses, etc.
Well, that brings quite a lump to the throat. I think these blogs are great for opening up to show others what our journeys are like - I think it does help us to heal when we’re more vulnerable - but I know what wounds are like, I know what being afraid of the risk that vulnerability poses. I applaud you.
I know I don’t see her all the time, but as her Sunday School teacher, I can sure say that God added something extra to her. Like He knew this would be a trial-laden journey, so he put in some kind of different “sugar and spice” while knitting her. She’s exquisite, Rae, really. Quite a precious jewel. Inside and out. And I’ve had several second, third, fourth, etc. my observation :-) It’s a privilege to have her brighten my day up each Sunday.
Thanks, everyone. I hope to get my next big post about Lottie us very soon.
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