I know there isn't much activity on my blog, and that there is likely very few who will see this, and that's just fine. Someone might see this and find something helpful, and that would be great. Either way, I feel like writing and that's what I'll do.
I just finished watching a video that makes a LOT of sense. The link is here...
https://www.youtube.com/watch?v=w0rCfXSdYPE
The topic is grieving and since I'm still trying to figure out this grieving thing, I found it very insightful. The speaker talks about grief and the natural inclination to deal with it, and put it away (or we try anyway). Sometimes we're even encouraged to seek 'closure' and move on... "put it in a box" ...so to speak. But we don't move on from those we loved and lost.
Ashley and Hope are part of every moment of my day. I feel joy and sadness at the same time. I laugh with delight as Mira tries on the next box of Ashley & Hope's clothes, and at the same time, I feel the tears as I remember...
Sometimes I ache so deeply, and I wonder how it is that I walk around with smile and continue to what needs to be done. I'm allowed to hurt. This doesn't mean there is something wrong with me, or that I haven't grieved properly, or that something is left undone. It just means I love my girls in heaven. I don't need to move on from them. I will love them, miss them and ache for the rest of my life. This makes some people uncomfortable, and I don't want anyone to be uncomfortable. So, instead of trying to fix the hurting person, I'll give you a hint...just love them. Look at them tenderly, wait quietly, or ask, "what memories come to mind today?". It is such a great gift when I am asked to share about my girls. I don't prefer to put them 'in a box'.
I still struggle with a difficult moment after the funerals. It was kindly, but wrongly suggested that I should end the blog and wrap it up nicely...kind of like the end of a story. I've never really understood why I reacted so strongly and felt so hurt by that suggestion. It was certainly not meant to hurt, and I don't hold it against the individual. But I realize now, that I was instinctivly reacting against the idea that I should 'end' the story on my girls, that somehow their lives on earth were over therefore I should be done talking about them. I should somehow just keep everything to myself, deal with it on my own, find closure and put it all in a box so that everyone else can be comfortable around me.
What do you think, as I talk about Ashley & Hope here on the blog? Do you think I'm in need of healing, that I don't have 'closure', and that I should get over it already? I may have thought that way at one time. Watch the link above, because it's the wrong way to think.
I hurt, and that's okay. I still laugh, smile, and have fun with my kids. I still go to work, and meet the daily expectations that come my way. I can be sad and be joyful at the same time. It's not an 'either/or'. If you're uncomfortable because someone is hurting, it may be because you want to fix it, and you don't know what to do. Watch the link above, you may find something helpful. Most importantly, don't try to fix people who are hurting, just hug them.
Kids give the best hugs...
7 comments:
This is a beautiful post. I know about grief, too. Not everyone does. That's probably true of the person that thought that death ends relationships, stories (and blogs). I love your girls, and I've only met them through your blog.
I have a little son who was stillborn and I love him very very much too.
Love conquers all.
I still read your blog and I love to see your insights. I would never ever insinuate that you need to get over it. I think your grieving process is your own and that's OK. whatever it takes.
Please continue to share with us.
Love your blog, and I think just keep on - it's healing for you. I love that picture of Brodie and Ashley - how I so remember her and her beautiful smile. Love you always, Madelaine
I want to let you know how incredibly valuable your blog is. I have a friend whose daughter has been diagnosed with ADSL deficiency and it is so hard to know what to say to her. Through reading your journey with your precious girls I feel a bit more at ease with how to act and what to say/not to say. It has really helped to read about the daily challenges and joys you experienced. I am a mother myself and I was surprised by how much of your sentiment I could relate too. After all, a disabled child is still a child.
I have always viewed children with intellectual disability as a burden, but you have really changed that for me. Your girls were beautiful. Reading your blog has helped me to understand that lives such as theirs are valuable and meaningful.
You also write beautifully. Best wishes, Kathryn
Jolene, not sure if you remember me but I contacted you several years ago after finding your blog. My daughter, Bethany, has adenylosuccinate lyase deficiency diagnosed at 9 months of age. I just wanted to let you know that I still check in on this site from time to time to check on you and your family. Your angels in heaven hold a dear place in my heart as do you. My Bethany is twelve years old now. Every day is full of blessings and challenges as we travel our journey. My reality is that one day my angel will be in heaven too and I will be trying to find my way. Reading your experiences, your thoughts and reflections, makes me cry, gives me hope, frightens me and brings me comfort all at the same time. Just wanted you to know that what you share has great meaning. God Bless. Christine
I stumbled upon your blog and wanted you to know how touching it has been to read about your family. My parents had 4 children, two of which were diagnosed with severe ASLD. My oldest brother Alex passed away 12/25/93 at just 3 years old. Justin (25) and I (21) were both born normal. Our youngest brother Andrew will be turning 20 this year and also has ASLD. Every day brings a new challenge, but without them none of us would be who we are today. Always remember that we have the greatest little blessings watching over us from Heaven. Best wishes & prayers! -Caroline (from FL)
Please don't ever take this blog away, Jolene. It is where we parents find each other. Where we connect. It is where we come to know we are not alone as we walk the same journey you walked. And although the girls are gone, their story will absolutely impact many of us for decades to come. It gives us strength, friendship, and courage. This blog must remain.
With love,
Meredith
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