Jan 30, 2012

{on being a dragon mom...}

there was an article in the new york times a little while back - you can read it here. its beautifully written. & i cry every time i read it.

our situation with isaac is a little different, obviously, than this mom, but a lot of the thoughts she has are ones that i think, too.

we are both mommies to sweet boys that have genetic disorders.
& while her sweet son's life is quite certainly not projected past three years - our timeline is much fuzzier.
we could have three years. we could have 13. we could possibly have more - especially as they're making great progress with the research being doing for Fanconi.

but at the root of it we don't know. & that makes every moment special & sweet.

there is tons of hurt & sadness in not knowing.
but great comfort that God knows.

when i was little - really little - think 3 or 4, we always had little tapes playing that we would sing along with. i feel like i remember those almost more than any i hear now. i still find myself humming them sometimes.
& i sing them all to isaac now, for him to remember someday.

this one in particular i must have learned in sunday school & i hear the line over & over in my head when i'm talking to doctors & planning surgeries, or even when we think about how long we will have isaac with us:

He's got the little bitty babies in his hands. He's got the little bitty babies in his hands.
He's got the little bitty babies in his hands. He's got the whole world in his hands.

maybe that's silly - but there's truth in the little tunes I used to sing. 
not everything that happens will be things that make me glad. to be human is to feel all kinds of emotions. but I can know that God is holding our sweet boy in his hands. & He isn't going to let anything happen to Isaac that isn't supposed to & that is a comfort.

I know thats a big statement. one that brings with it a lot of questions.

but for now i think its enough to say that we know that as parents, we will do everything we can for Isaac, but at the end of the day, its not really up to us at all.

part of this being a dragon mom as daniel now calls me {from the aforementioned article} is pretty cruddy. i have to be an advocate for my son in a world of PhD's - a 23 that looks 16 year old mommy.
where my son's disease is so rare that most of his doctors haven't heard of it...

i don't like that.

i don't like being stubborn & asking questions.

i don't like to cry in front of strangers in offices & in the parking garage.

i do like to please people. i am a people pleaser.
i like to cause as little trouble as possible. 
to blend in. 

isaac makes me speak up when i don't want to.
to forget to be self conscious & timid.
he makes me an asker & a learner.
he makes our family different. & perfect.

everything the world told me for 22 years was that this wasn't the life i wanted.
that it would make things difficult & uncomfortable. all of those things scared me, but come to find out, all of those things i was told weren't totally true.


no one tells you that to truly enjoy laughing you have to cry. a lot. that hard things can make or break a marriage, but if you are committed to making it, you realise you love your spouse more than you thought you ever could. that hot tea & days at home are nicer. that kisses from daniel, smiles from isaac & time with family would be more special.

i am becoming a better person for being a mom of a disabled little boy.

i am four months into being a dragon mom, & this baby is more perfect for me right now than a 'perfect' baby could ever be.

i was so scared of what have a special needs child would mean - & now all i can see are the blessings.

so maybe i don't like having to be a dragon mom in a lot of ways. but maybe, just maybe, being a dragon mom was best for me. maybe i'll be able to tell isaac someday how Jesus knew what He was doing when He made me his mommy. that i wasn't just the right mom for him, but he was the perfect boy for me.

i feel like i couldn't ever totally say what it's like - to be a dragon mom. but in a small way, this is how.

34 comments:

  1. This was so heart-warming. It's really inspiring to hear about your faith in God and how you place your family in his able hands. I'm praying for the 3 of you and I wish you all the best for your future with Isaac x x- Berni

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  2. your faith is incredible.
    i am praying for you and your beautiful family.

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  3. you are wise beyond your years. This post touched me. I admire your faith. I know that you and your little family will be blessed because of it.

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  4. So beautifully written. My heart swelled with both sorrow and happiness reading this post. You are so strong and I thank you for allowing us to peek into your life. You are an inspiration and I will continue to pray for you sweet little boy.

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  5. Thank you for sharing this. I'm nearing 27 and I'm not a mom and won't be for quite awhile, but I love hearing your thoughts on what it means to be a mother. God definitely knew what He was doing when He gave you Isaac. What a blessing!

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  6. Mindy- I really admire your faith and I love this post. The sermon at our church this past weekend was about Great Faith. David Chadwick preached about how at times there is a "fog" in our lives and we ask 'Why God". We may not understand why certain things happen, but we must continue to believe. I am new in this journey of building faith, and I have to say you are an inspiration to so many. I am 30 and have been blessed in so many ways, yet I think to myself there is no way I could handle being put into certain situations. But I have to remember God is in control. He makes the plans. Everything happens for a reason. I like how you mentioned the things that you don't like or you are not good at, but how having Issac has made you stronger and more vocal. I Pray that Issac will be with us for many many years. He is a special baby and you and Daniel are special parents. Thanks for sharing your thoughts and emotions.

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  7. Mindy, dear. I love your heart. I love your boy. God has made a beautiful thing here, and you bring him SO much glory. Praise Him for heaven, and the short time we have here to treasure Him first. thanks for sharing the picture you have of eternity with me.

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  8. I just started reading a book today about how God uses our children to shape and grow us- that "we need to raise them as much as they need to be raised". Your beautiful thoughts here reminded me of that in a very practical way. thank you sharing, and know that prayers are ever going your family's way.

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  9. Dear Mindy,

    I am a registered in an Intensive Care unit in Australia. I hear what you are saying about being "in a world of PhD's" "an advocate for your son" and a "dragon mum". Everyday I see mothers, fathers, siblings, friends and spouses who probably feel like they are being "dragons". They ask lots of questions, get upset and or angry (among many other emotions). However to us at the unit they are not "dragons" but loving family and friends, who probably feel lost in a foreign medical world, are stressed, worried, confused and so on. A good doctor or nurse wont judge you. Although I doubt it easy try to think of it as "instinctive motherly behavior" as opposed to a "dragon mum".

    My thoughts and prayers are always with you and your family,
    Alyssa

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    1. Sorry, that should say registered nurse :S :)

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  10. Mindy, may God continue to give you the peace and comfort that only comes from Him. I encourage you to be the strong dragon mom! My family went through something where we had to be "dragons" in the world of doctors,insurances, referrals, etc. and without the power of God, I'm pretty sure we would just throw our hands up and wail.

    It's amazing how God has it all under control and nothing happens without His provision, I'm so encouraged tonight after reading your blog. May He continue to use you for His glory!

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  11. I've told so many friends about your blog, because your bravery, courage, and faith in God blows me away...you may look 16 at 23, but you have the wisdom of a woman who's lived a long life depending on God. xoxo

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  12. Sweet Melinda girl! I love this. So much! I love what a brave, fierce, loving, full of faith mother you have become. And I love that perfect boy!!!!!!! I admire you and Daniel so much.

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  13. You are such a beautiful momma and insanely wise for 23 years old. Thanks for the constant reminder of how perfect Gods plan is howevr scary or hard it looks.

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  14. THIS is a beautifully written post & no doubt you certainly are THE very best mom for sweet Isaac! Your precious family is in my prayers. If I may add to the song a bit (our kids just sang it in SS this week & I totally agree that the songs we sing as kids can speak life & truth to us as grown-ups!), anyway, "He's got your sweet, little family in His hands!"
    That picture of Isaac & his smile, well, it just melts my heart! What a blessing he is!!

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  15. I have been a quiet follower of Clarity and Grey for over two years and there, I learned about your blog. I came here to comment, and just saw Clarity and Gray's Comment. :-) Those were the same thoughts I was thinking, but she wrote it much more eloquently than I ever could have. Your post is so genuine and full of love and grace. I admire your faith and trust. In the pictures that you post of Isaac, his eyes seem to capture the beauty of life, faith, and happiness that you and Daniel provide him every day. He knows. He feels it. He breathes it. And deep down, I think he knows how tough it is for you to learn how to be an advocate for him, but those eyes....he's thanking you with them every day for being that advocate. You're an awesome mom!

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  16. Prayers your way. What an incredible woman you are. xox

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  17. The end comes when someone is really dead. Until then just do what you have to do. I know I would if I were in your position. I would for certain have kept Isaac as well (many in Sweden wouldn´t have). It wouldn´t be easy for anyone to take care of Isaac, but if Isaac was meant to be born, which he obviously was, then that´s all you can do as a parent. It´s okay for it to be hard at times, and it´s okay for it to be sad at times, but as long as you care for him God won´t make it imposible. People always make things harder than they really are too, and I think a lot of people are thinking of how they could never do what you and Daniel do, but I think with God anything is possible, so keep on trucking. I pray your job never ends.

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  18. Every time I read your posts I am moved to tears and yet inspired to worship our Great Heavenly Father! I work with children with special needs and love every minute of it but I can not begin to imagine what it must be like to be a mother to one. Your little boy is so blessed to have you and Daniel as parents who seek their strength not from within themselves but from a much stronger power = God! Thank you for your pure honesty and please keep sharing! I will continue to pray for you, Daniel and little Isaac. xx

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  19. You make me weep and laugh in one post my dear friend.
    Still praying for " the boy" as Augustine says

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  20. reading your blog reminds me so much of the way my mom felt when my sister was born. because of some issues in utero, a week after my sister was born, she had to have her right hand amputated and has minimal function in her left. of course, her situation is much different from yours, but the pain is similar. My sister is now almost 18 and going through such a hard phase of wanting to be "normal". people have stared, asked rude questions, and said hurtful things to my sweet sister every.single.day. of her life. i wish i could do anything to take away her disability.
    I am so glad that you have a husband who is with you and isaac in your fight. my dad was not very accepting of my sister and my mom had to fight alone. my sister has never felt quite accepted by my father because he never accepted her situation...he just kept praying that God would make her perfect, when in fact, she was already perfect in God's eyes!
    thank you for loving and accepting your wonderful little babe just as he is. it makes a world of difference.

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  21. Your strength is inspiring and I hope one day to be as great a mother as you are. Your love for God and your reliance on Him are the greatest gifts you could ever give to little Isaac, he is so blessed to have you as his mom. My prayers are with your family, and I thank God that He has made His hand in your life so evident to you in these past few months. Your act of entrusting Isaac fully into God's hands and surrendering your will to God's when it comes to your baby's future has touched my heart so deeply and I thank God that I was led to your blog and got to read this post, even though I do not know you. Again, my prayers are with you. God bless :)

    "The Lord will fight for you; you need only be still." Exodus 14:14

    P.S. I recently finished a book called Stepping Heavenward, it's about a woman's journey in her everyday life of growing closer to God. Your words about trusting God with little Isaac's life reminded me of it, and I just thought I'd recommend it to you as a good read with many valuable life lessons. I know I learned a lot from it and was touched by it and if you read it I hope it does the same for you. :)

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  22. oh mindy--thank you for sharing.
    "he's got the mommies and the daddies in his hands!" too!!!

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  23. love you :) p.s. remember, 'perfect' or 'normal' is a relative term and is not defined by all the masses see it.
    xx amadea

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  24. Your testimony is a blessing to read. I could not imagine facing what you are facing. It is a reminder that children are a blessing and a gift from God. Ours to hold and love for a time but ultimately they belong to God. That is a something Im struggling to learn. Giving our babies completly over to God is so hard! Continue to lean on God for strength and may God grant you His perfect peace to handle all situations.

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  25. You are such a strong woman. It amazes me how much faith you have. Keep cherishing those moments and don't let any pass you by! I'm keeping you in my prayers!

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  26. My heart goes out to you and your precious little family. Praying that the Lord would wrap His arms about you and give you strength and peace.

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  27. Nothing but good things come from that little boy I swear....
    I am so proud of you it's ridiculous.
    Love you sis.
    Briauna Hoyt

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  28. Thank you for sharing. This post made me cry. Your little boy is so perfect for you and your husband. He is truly lucky to have parents that love him so so much.

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  29. In the sharing of your story, you're becoming an advocate for your son and you're becoming and advocate for all families touched by disability. I do social work for adults with developmental disabilities and it's so encouraging to see you as a passionate mom dedicated to providing the best love and passion for your baby. Thank you. Your blessing is going to stretch far beyond just your baby.

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  30. You are such a hero to me. Keep doing what you're doing, you're clearly an amazing and brave woman and Isaac couldn't ask for a better mother in a million years. Life can be so scary and unexpected and I sometimes have a very hard time seeing how my struggles can actually be good for me in the long haul. You remind me that difficulties can be the biggest blessings in the world in disguise.

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  31. God definitely had a great plan when he made you Isaac's mommy. That little boy is going to grow up with SO much love. <3

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  32. Hi there! I just came across your blog because a beautiful picture of your family made it's way onto a tubmblr and I thought, "what a gorgeous family that is so full of love, wonder what their story is?" Boy, you have an amazing story, your blog had me hooked. But I lost it when I read this post. So beautiful. As a woman wondering if I will ever get pregnant naturally, and fears of if I would even want to be a Mom, you said it all and then told me I am wrong. I hope you have an amazing Mother's Day. God made you an amazing mother!

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