Dear Mom On The Day Motherhood Changed

​This letter was written by Amanda Buck as part of the Spill It Mom Letter Collection. Are you interested in writing a letter for this collection? See here for all the details.

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Dear Mom On The Day Motherhood Changed
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By Amanda Buck

​Motherhood began a little rocky. It was a rough couple months adjusting to the lack of sleep, struggling to breastfeed and other aspects of the steep learning curve that is caring for a tiny, new life. But after a while my daughter and I found our groove and I began to love every moment. I basked in the warmth of her smile, felt my heart surge with love when she said, "Mama," and revelled in watching her discover the world. Then one day, when she was about 15-months-old, we were told our baby girl had a rare disease and my motherhood changed forever.
 
I write this letter from my present day self to myself 3 years ago on the day my daughter was diagnosed with cystinosis.
 
Dear mom on the day motherhood changed,
 
I see you trying to concentrate on the drive home. You're coming back from the children's hospital, where an ophthalmologist has just informed you, your precious baby girl has something called cystinosis. He didn't explain what it was, just told you she needs eye drops for the rest of her life. You're trying not to freak out, but not knowing what cystinosis is, is killing you.
 
You think back to what brought you here. At her one year checkup you learned she hadn't grown in 6 months. You'd brought up her lack of appetite before but the doctor had said she wouldn't starve herself and if you kept offering different foods eventually she'd eat. She hadn't yet, however they didn't seem concerned so neither were you. But after learning she’d stopped growing your doctor used the frightening term "failure to thrive” and ordered some tests.
 
Those tests brought you to the children's hospital. There was a problem with her kidneys and she was losing electrolytes in her urine. They suspected something but never told you what. You were told she’d need more tests, one of which was an eye exam. What did a kidney issue have to do with her eyes? As soon as you get home you plan find out.
 
Sitting in front of the computer with your husband you feel your world disintegrate. Your daughter, your very heart and soul, has an extremely rare metabolic disease. It affects her entire body, causing damage in every cell. The potential future complications are terrifying and the treatment overwhelming. You feel like a failure, you couldn't even protect the one person that really needed you. You didn't know a pain like this existed, like your heart has been pulverized into nothing and the gaping hole in your chest will never stop hemorrhaging. You feel yourself spiralling down, wishing it was only into a nightmare. That you could awaken and pull yourself out of the dark abyss.
 
You can’t see the bigger picture because you are in the middle of it. But I made it through that day to the other side and so I can see what you can't.
 
Let me tell you what I see.
 
I see a little girl who has more spirit, fire and tenacity than you know. She will adapt to her medication schedule quicker than you will and she will keep that radiant smile and infectious laughter through it all. Her strength will become your hope, inspiring you to give her the best life you can. To treat her as any other kid and give her the courage to live her life boldly.
 
I see an extended family and friends who will surround you with love and compassion. They will rally around your family, giving you support and encouragement. They will hold you when you cry and give you their strength when yours falters. Most importantly their optimism will make its way into your heart, until you believe that you can make it through.
 
I also see a mother who is not kind enough to herself. You push yourself to the background and focus only on your daughter. You feel guilty for your grief. What right do you have thinking of yourself when it's your daughter with the disease? This new journey through motherhood was never one you imagined yet you try to ignore your feelings because they're nothing compared to what your little girl must go through. You wonder if your life can ever be what it once was.
 
Though it will never be as carefree as before, your life will settle into routine. The meds will get tweaked and her levels will balance. You'll find a schedule that works best for your family and before long you will find your groove again. The happiness and joy that you tried to force in the beginning will feel more natural and you will even find the courage to expand your family and bring another precious life into this world.
 
And you will begin to heal yourself through acknowledging your pain, writing and connecting with others. The person you were before the day your motherhood changed may be gone, but you are better for it. You see the light in every day, you fight hard for your children's happiness and you see the beauty in other mom’s journeys through motherhood. We don't all take the same path but it's not easy for any of us. Yet we are still here and we are all still fighting in our own unique ways.
 
I will leave you with this, dear struggling mama, the future of your daughter can still be bright. When you embrace this new reality and understand that it will not change your original hopes and dreams, you'll realize it's not the end but just the beginning. As unbelievable as it sounds there will be good that comes from this struggle. You will find your place, your voice and your strength and you will still give your daughter the world she deserves.
 
Much love,
 
Amanda

Amanda Buck blogs at Elsinosis: Living with Cystinosis