The sun is setting later each night. It's as if she's hollering for me to awaken.
Wake up Wake up.
It's a glorious reminder that all things can come alive, stay alive and revive again.
And I need that, now more than ever.
This morning the house was quiet as I sat in the warm toy room with my two youngest. The early morning sun was shining in and I couldn't help but feel subdue in the moment. These are my children; the gifts that God has given me and they have awakened me to life.
True, desperate, beautiful life.
Nora hasn't been feeling well and the last few days have been secluded ones. It has been reflective for me in a time that I desperately needed it to be.
Mabel has regressed.
It's hard to type it although I know it's true. She was getting so strong [for her] and in the last 2 months we have seen a downward spiral that is both upsetting and scary.
Therapy has been difficult. She is extremely needy.
She's overly tired and her head is lagging again. She is constantly laying on one of us.
My mind takes total control and runs wild with thoughts that I can't dare to write.
What is life going to be like for a baby this weak?
What is life going to be like for a baby this weak?
When I start to think about all the complications that could physically take place in Mabel's body, I try desperately to think about something different. Today:
Hair length and lipstick color should never depend on your weight or your age.
One year ago, today, the Lord took Steph home to Heaven.She has been pain free, disease free, and in perfect peace for an entire year.
It's incredible and yet so deeply painful.
And all too real.
I have this ache deep inside of my soul that longs to never know of all the horrible disease that can ravage the lives of children. Some days I wish I didn't know. But then I wake up and realize I can never go back. I will always know. I will always look at everything differently and I will always know pain that others will never have to. As they watch their children bounce through life, make mistakes and recover from them-
I will [hopefully] get the opportunity to watch mine sit up and [maybe] eat a meal on her own.
Because I love Jesus and because it's a very real part of my existence, I think about death alot. I think about Heaven alot. I think about the peace that I have in both.
And I mean that.
But it's a sad, harsh reality to have to think about death and Heaven when it comes to your own child.
I don't go through every day thinking that Mabel is going to die. I am not focused on all the negatives or all the discouraging things that happen from moment to moment. But it is something that enters my mind more often than it maybe should and far often than it once did.
I look at Nora and Braden and I realize that at any moment, life could be stolen from them as well. But they are truly the picture of health right now and so it is difficult to think about anything other than a long, vibrant life for them. But when I see Mabel, especially on a bad day, I mentally think about the photos I would use on a picture board at her funeral or the songs I might play.
And then I beg my inner self to STOP. Just stop.
The things I'm writing have been spoken aloud rarely. To Rache. And sometimes to Jeni.
But I haven't been able to be so honest as to write them here yet.
I have wanted to so many times and I need to, as to never forget.
It needs to be validated, for myself only of course, that I feel this way and it is important.
It's important because it's part of the journey-just like acceptance, so is the same as fear.
I'm past fearing if she won't walk. I'm past worrying about if she will ever talk or sing.
I'm past being afraid of whether she will ever live on her own or not. Those things have come and gone in my own process. And in the midst of it, I have had to come to terms with an outcome, whatever it may be, and be ok with it.
Not lack of hope.
Not giving up.
Just Accepting that if she doesn't do those things, we'll still be ok. We will still make it.
Will she walk? Maybe.
Will she talk? Maybe.
Will she eat? Maybe.
Will she live? Hopefully.
It's not just a 'hopefully' for Mabel.
It's a 'hopefully' for all of us.
We are all alive, sure.
But will we choose to live? Hopefully.
Will we choose to jump into life feet first and do something amazing? Hopefully.
Will we choose to love the Lord and live with a hope of Heaven? Hopefully.
'Hopefully' living, when it comes to Mabel is not me worrying about whether she will truly live when she's here because she is doing that. She is living to the greatest of her ability which is far more than I can say for almost all of us. She loves without regard.
She is honest because she knows no different.
She is genuine. She is pure.
The 'hopefully' for Mabel is my own selfish need to have her here forever.
Because she changes my life every single day. I am humbled to be around her, let alone to be her mother.
So the only reason that death scares me or makes me feel inferior is because the thought of not having this life with Mabel in it, is unfathomable.
Today my heart aches for Steve and Val. I can't imagine the way that they miss their girl. Steph was an amazing, pure, lovely lady She lived 15 years and suffered many of those years with a horrible syndrome that controlled her body and her days.
Please take a few minutes to pray for Val today, because as a mommy, I don't know how she is getting through each day--only that I know she is amazing and brave.
To read more about Sanfilippo Syndrome, please visit www.teamsanfilippo.org
May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.
It's funny and not so coincidental that you write about this. I have had a long/beginning journey with the grieving over the death of a child and have finally found His words and my words to talk about what it truly means to love, let go and be ok with death. I'm anxious and nervous to write about it, but it must be said; it'll probably stir a lot of people up, but what about God doesn't stir up emotion?
You so perfectly put into words so many of my same fears and thoughts. Thank you.
Crying hot, wet tears. This is not how it should be. This is not how it could be. But this is how it is. Our God is in control. Praying everyday for strength for you for this journey, whatever it holds, and also praying for a long full life for Mabel. I love you, Ramee. I hope this is taken correctly. It is hard to know what to say, you know? So if any of this just hurts, please throw it out, and just take my I love you.
Just when I was able to get myself together after seeing Maggies video (posted link on my blog) Now Im all in tears again...
I feel like I could of written these words myself, well I probably have before, many times.
I look at Mabel and say, this was Jack at this age. He was clingy, wasnt walking or eating, and basically laid on his back most of his days. His 2nd Birthday went by and he still hadnt taken his first steps.
But then he did.
He still doesnt eat except for a chip once in awhile but like you said, I dont think about or wish for things like eating anymore, acceptance.
But I probably dont go a day without thinking about death... well yes a day but when I lay down each night and close my eyes, it some how creeps into my head. Im not sure it will ever go away, not when you have a child diagnosed with a disease that has a way of reminding you of it. But like you I do my very best to push it away and hold onto what we do have now... and that is life.
Thinking about you tonight, and praying you see some positive changes in Mabel soon. Love and hugs.
R, deep and intense post.Acceptance is liberating feeling. So many emotions and thoughts you never thought you would have to go through as a Mom. In my prayers as always.
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