Apr 15, 2013

{there are good days & there are bad days}

ready for a crazy, rant-like look inside my head? we're talking an all over the place, how-did-her-train-of-thought-totally-jump-there-i-am-not-following-at-all kind of look into what i've been thinking lately? & by lately, i mean on & off for the past two years...

in all the time i have been posting about isaac, i feel like we have been pretty...optimistic. i suppose you could say that. he has been our greatest surprise. he fills our live with smiles & laughter & fullness. he makes life seem precious. we have been able to live out the last few years as well as we have because we love him & we believe isaac is god's special gift to us -  to make daniel & i better people by teaching us love other people more, to share our story & to give isaac a family that will love & take care of him. that is just some of the good.

at times though, i feel some of the more negative things.
i wish i could just brush it all aside. that i was stronger. that my skin was thicker. but its not.

i don't handle all of the craziness well sometimes. okay. a lot of the time. i can get majorly stressed over treatments, diagnosis, xrays, surgeries, doctors not understanding isaac, reworking old treatment plans, isaac not eating, not growing, battling insurance companies...its the kind of stress that literally feels like you can't breath normally - that makes your brain feel fuzzy & lightheaded. the kind that you need a brown paper bag for. you know what i'm talking about? i know that is something i need to get under control. i pray so often for god to take away my anxieties, but they are quick to creep back in...worrying is something i've always struggled with. something i'm working on.

i go thru periods of big time exhaustion - having an 18 month old that still acts, in a lot of ways, like a newborn & wakes up in the middle of the night, every night, takes a toll. we adapt in a lot of ways. i joke about being used to sleeping 3 hours at a time - but really, a year & a half of the stuff is enough to make a lady a little crazy. & i have become a little of a crazy lady.

i cant cry anymore. daniel & i have talked about this a lot, but something happened in these past few years: my eyes just...dried up. most of the time i cant cry even if i want to. it probably sounds like im making this up, its such an odd thing to say. every so often, something will catch off guard & makes me tear up - & usually its something really small & silly, but on the whole, i have become a master at shoving all emotion somewhere out of thought - except for the stress. funny, isn't it?

it seemed like a necessity early on. i am absolutely incapable of thinking & communicating when i cry, & we had so many doctors to deal with, i just made myself stop & haven't really been able to since. it probably makes me come across as indifferent a lot of the time, or not fully understanding the weight of the things i am talking about with people. but i really don't even know how to change it right now, either...

we have had ups & downs all along, but right now seems to be one of the longer seasons i've been feeling more discouraged. its often just day to day, but the past few weeks - or month, have been especially trying for multiple reasons: extra feeding stresses, possible g tubes, shunt studies & overall added fussiness to name a few.

since isaac has been born, we have really tried to live our lives as much as possible like we did before we had a baby. we include isaac into a lot of the things we have always done. i feel like that is healthy in a lot of ways. i want him to grow up feeling like a normal kid. but the older isaac gets, i realize that he is different - wonderfully made, but different. our lives are just going to look a little different. we have tried - maybe too much to keep things the way they were - to strive for what we think normal should be, but i need to realize all over again that for us, its okay, & that some things we just need to do for our family may be...different {as i say different btw, i am totally thinking of the fantastic mr. fox wiggly hands kind of different each time}

we have started to fall into this pattern of wanting more: striving & grasping for things that maybe will never be. isaac has done so well. he is our miracle baby. when i was pregnant & we still didn't know what he had, we told each other that if he only was ever able to know that we loved him, we would be happy. we meant it when we said it, but as he has grown & progressed & also watching other babies grow, we have become dissatisfied with just that. as soon as isaac hits any kind of milestone - which is a BIG deal, we immediately want to push for the next thing. for more. more is good, but an attitude of 'more' that says 'we need to try to keep up! is that too much to ask, because i don't want to feel like a failure of a mom...' - that isn't the kind of 'more' i want to be apart of me.

when did i let the evil seed of comparison rob me of the joy of just enjoying isaac for where & who he is? why do i let comments on my parenting or looks we get at the park have such an effect on how i think?

here are the facts: isaac is almost 19 months & he is 12 pounds. not because we don't feed him. because FA kids are small & have poor appetites. & of them, isaac is still one of the smallest.

isaac doesn't eat food. no really, he hardly eats. he is a milk only kind of a guy. its not because i haven't tried countless times to let him suck on melt-in-your-mouth baby puffs. its not because i am trying to be too healthy with him & only feed him pureed veggies that i steamed myself {although i have definitely tried that}. i have tried every kind of puree. every mashed food. every juice. i have stuck trays of food in front of him & tried to get him to just PLAY with his food. i have tried getting him to just look at a spoon without crying. he has gotten progressively worse with his past few surgeries. i am in full gear every day stuffing his bottle with extra calories, because we ARE grateful he {most of the time} takes his bottle well. we see speech therapists & nutritionists all resulting in little or no progress. isaac doesn't crawl. he can't sit up on his own. he can't feed himself. he doesn't like his highchair - actually, he screams when he sees his highchair. other kids like THEIR highchairs? why...cant...i...just...FIX...THIS?!

i think like that more than i would like to admit. but sometimes, more & more, i try to catch myself & think of this: isaac is our precious miracle. isaac knows he is loved - isn't that all we ever wanted? isaac has a heart of gold. he is HAPPY. mostly. isaac is a survivor. isaac is the bravest boy i know. he recovers from huge surgeries in a matter of days. isaac can turn the page in his books. isaac LOVES plants. he loves them. isaac is an ever-baby & it means i have more years to snuggle him close to me when other babies just want to crawl away. isaac loves being outside. he loves birds & airplanes. he loves the blue swing in our backyard. isaac makes people happy. i don't understand it, but an isaac smile can make someones day brighter. isaac loves yo gabba gabba. he loves dance music. he can scoot across the room on his head to make up for his unwillingness/inability to crawl. isaac is alive. there are so many things that are right about isaac. he has such a personality already, so why do i let my heart become discouraged? it happens when i start to try to fix things on my own or wish for something that isn't where we are.

i haven't written anything like this in awhile. im hesitant to post it because i'm not looking to be really negative, or to be pitied or get on my soapbox & vent on a bad day to let you know that things can feel pretty cruddy around here sometimes...

all of this is to say that some days i feel none of the negative things, but other days.....
some days are really hard, too. & i don't say that a lot. maybe even knowing that will be encouraging to someone that feels like their days are long & stressful & crazy whether you have special babies or not. i mostly post just the good things. the smiling faces. my living room after it has been cleaned & scrubbed. i want this blog to be full of hope in the midst of our crazy, not-planned-for lives, but we are real people, too. & i want people to know that anything good they see in me is jesus in me - because the 'just mindy' part isn't so pretty a lot of the time.

i don't know how to end a post like this, i don't have a nice tidy way of wrapping up my thoughts, this is just...it. the good, the bad & in between.

103 comments:

  1. It's not negative! All babies develop differently, and your little blessing adds an extra layer of complexity. I still can't figure my little 15 month old out sometimes. He will eat something for a week straight, then want nothing to do with it and SCREAM for what seems like forever! I know you try not to, but do not,et yourself get suckedin by what Isaac should or shouldn't be doing. As an FA child or not. He's Isaac, and the same as every other baby he will do what he is ready to do when he is ready. Just keep doing what you are doing. You and Daniel are amazing people and amazing parents, and Isaac is lucky to have you both. He is such a cute and sweet little boy, just may be a little stubborn and on his own timetable, keep doing what you are doing, and put Daniel on baby duty and get some sleep! I am sure he does help, but if you need a few days, find a way to take a few days and recharge, I have found it extremely therapeutic! And you coe back soooo re energized and ready to take on everything, you guys are amazing and I pray for you often. Such a sweet family!

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  2. You are so brave, even just to post this. And you are entitled to your emotions and feelings, every single one of them. Your family seems so sweet. I love reading your blog and seeing the hope and hardships that you share-- because you are making a difference. Even just by relating with others who read. I don't share your same trials, but I feel uplifted by your diligence and faith. Thank you for that. Take care!

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  3. Mindy, this was such a beautiful and honest post and as hard as it is to read, I loved reading it, because your family is amazing and Isaac's story is incredible, and you're an inspiring mother.

    I think it's right and good and healthy to be honest about your feelings right now, and this post didn't seem at all negative to me - just real. Your boy is the same age as mine and I pray for him every time you post about a surgery or update.

    You are an awesome mom - I can just tell! - and you need to keep telling God's story for you on this blog (all parts of it: pretty and hard).

    Bless you girl.
    Em

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  4. Thank you. Thank you so much.
    My daughter is undiagnosed - all they can tell us..is nothing.
    I'm going through almost the same as you in my head. day.after.day.minute.after.second.
    i pray. i pray for you. i pray for all of us in this ocean of the crazy unknown.
    hang in there.

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    1. i feel for you, girl. not knowing is so hard. thinking of you today...

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  5. Mindy, you don't know me and I have never commented but I have read your blog for a while. I want you to know that I have seen Jesus in you both and it has inspired me. Thank you.

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    1. Alanah - greatest compliment. thank you!

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  6. This is a momma post plain and simple, to see the preciousness and blessings that are our babies we have to offer up the ugly and not so perfect days too, like we're saying "This is so so so so hard and some days I'm a total mess, but I would not change me being your momma for anything in the world." I get you girl, and so does every other mom who is honest with herself, you are an amazing mother.:)

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  7. I'm also a longtime reader who's never or rarely commented -- but I have a sister who is severely disabled, and we always learned to think of her as a gift from God, just as she was, who could bring new gifts to us and to the world. My parents always insisted that her presence in our family was a huge positive thing. And all this is true, for sure. But also, in the past few years (my sister is now 27) my mom has said that she now realizes that she had a ton of anger and grief about my sister's condition that she repressed, and it really messed her up in the long term to not acknowledge the ways in which my sister's disability prevented our family from doing some "normal" stuff. All this to say: positivity is good, but it's also really important to give yourself permission to experience your negative feelings too. Hang in there!

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    1. Marie - thank you for posting that!!! we obviously aren't anywhere near as far along, but i can already feel bits of that & i'm glad you shared about your mom. i can see myself going there down the road, so its good to hear from people that have been thru it already & learn from them...

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  8. I have also often read and never commented-- I'm so so so grateful for your honesty, and you have the most beautiful spirit. Isaac is very lucky to have you as his mommy.

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  9. this was awesome Min. really.
    You are right about people loving him. the Lord has already used him in many people's lives. He is our best boy. And you are the only one Jesus chose to be his mom. That is the biggest honor anyone i know could been given. And you are the perfect one for the job
    love you

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    1. kenni - i just love you. god knew i needed you in my life.

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  10. i can totally relate to your feelings...my daughter also has special needs and it is sometimes so hard to see her around other typically developing kids her age. i get so discouraged and want to push her to achieve more. and then the guilt and worry creep in. anyways, i just wanted you to know that i love reading your blog and you and your family are in my prayers daily

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    1. christina - wish we could talk in person about all of these things. its nice to know someone else understands :)

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  11. Mindy,
    Isaac is a miracle. He is laughter. He is infectious. He is a hope giver. He is a gift from God. And ultimately, he is not in your hands, but the Lord's.
    I've had this song bouncing around in my head all morning, and I think it is for you, but not necessarily the song YOU are supposed to sing, but one that Isaac is, & has been, singing.
    https://www.youtube.com/watch?v=wkix3Tg8L5E
    "I was held in Your arms, carried for a thousand miles to show not for a moment will You forsake me."

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    1. Thank you! i haven't listened to that song in awhile!

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  12. Mindy,

    I love your honesty. Do you know how many people surpress their feelings for the fear of what people will think?? We are human. Life is hard and not always great. I look up to you and Daniel and for everything that you have been through. You do not have a normal child. Your life is more difficult than others. Of course you are going to have bad days. Days where you wonder "why me"? But the Lord has a purpose for all of us. He has a purpose for Isaac. The joy he brings to others is priceless. So please know it is ok to feel this way. It is ok to have BAD days or even months. I am proud of how you look at the good side of things and how you realize how special Isaac is.
    I will pray for you and Daniel and this phase of life.

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  13. Mindy, you are a rockstar! Isaac is so lucky to have you and you are lucky to have him. I can't even begin to know what you are going through in this season of your life, but I know that you will make it through. You are an incredible woman.

    Alwaysalwaysalways keeping you & your family in my thoughts.

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  14. i'm so glad you posted this.
    Seriously.
    it shows that you're real...and that what your'e going through can be very challenging. I've been reading y'alls blog for a while and i'm blown away at the glass half-full attitude you adopt...but i know it isn't always that easy. The emotions/crying thing...i'm there with you. I've been going to counseling for a few things and she mentioned that it is a defense mechanism. That when i developed it i was at a point in my life where i felt i had to be strong, push through, an get things done...but when it came time to actually process the emotion, i was empty.
    you're not alone in that either.
    ::hugs::

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  15. Thank you so much for sharing your heart and allowing us to cover you in prayer over those areas. You are unbelievable...your heart is golden. How blessed you are Mindy! Praying for sweet Isaac Always! <3

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    1. Haley - you breath life through your words girl! an encourager thru & thru :)

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  16. http://www.harvest.org/virtue/girl-talk-2012/7QAZyqlWUvU.html


    this is a wonderful sermon.
    will freshen your heart.

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    1. Ally - i watched this. thank you for sharing it! so encouraging...

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  17. This was a beautiful post. As a mum to an 18 month old, who has comparatively minor health issues, I see this as a mum post. Wether your child has additional needs or not every mum feels the way you do. Being honest and open about negative feelings is the only way to feel positive. You are doing an amazing job but you, all of us, are only human and the glass can't always be half full. :-)
    Love, hugs and blessings to you all.
    xx

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  18. Hi Mindy,

    You don't know me but I know and love the Tong family and they told me about your family. Thank you so much for sharing your heart. REALLY, it means a lot. Your hearts are so beautiful and I know Jesus is at work. We are so used to seeing 'perfect' lives posted to instagram that when I read something like this I see authenticity, I see hope, I see courage. When you spoke of worry, comparison, and fixing things I am there right now, yesterday I received a test score in nursing school that I was not expecting, I thought I aced the test and well, lets just say the result was not near what I wanted. It's amazing how God can use even nursing school to mold me and shape me into the image of Christ. Anyways, all that to say, I am so encouraged by your blog, your words helped bring me out of the muck and mire of self pitty and despair. Please know that your blog is impacting lives and your precious boy is softening even the hardest of hearts.

    Sincerely,

    Becky Heller

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  19. Mindy,

    I don't think I've ever commented before, but this seems like the right time to start. I've been following your beautiful journey for a while now and have seen such grace and love portrayed through you and your husband. I don't have children yet, so I won't even try to pretend that I comprehend what you're going through. But just know that you give me hope that I will be able to love my future children with even half as much grace, kindness, and love that you do. Sometimes seasons in our lives are hard, but Jesus has a way of turning a situation around in ways we never imagined.

    Praying for you and your (beautiful) family,
    Jenny

    PS: here's a link to a blog post with verses of encouragement for those times when you're feeling a little "crazy" :)
    http://rachelwojo.com/12-bible-verses-for-when-you-feel-like-giving-up/

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    1. Jenny - GREAT blog post. thank you for sharing it :)

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  20. I see Jesus in this post and in you because of this post...more than in all the others. Obviously, we need to celebrate the blessings to be reminded how good God is. But recognizing the bad days and the ugly thoughts and the knowledge that we are helpless on our own...reminds us of how GREAT our God is. Of how much bigger and better he is. Of how much we need him. And it forces us to talk to ourselves and remind our doubting hearts that he's got it. And then we are reminded of how much he loves despite the fact that sometimes we live like we believe none of these truths.

    I thought of this verse as I was typing. It is a familiar one but I hope it is refreshing. From Romans 8:

    31 What then shall we say to these things? If God is for us, who can be against us? 32 He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? 33 Who shall bring any charge against God's elect? It is God who justifies. 34 Who is to condemn? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, who indeed is interceding for us. 35 Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? 36 As it is written, “For your sake we are being killed all the day long; we are regarded as sheep to be slaughtered.”
    37 No, in all these things we are more than conquerors through him who loved us. 38 For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, 39 nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

    We are more than conquerors. It is done, sealed by his blood. Thank you for this post. These are thoughts you hold close but I'm glad you shared! It's very encouraging.

    Prayers are with you!

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    1. Allison - i NEEDED that today. thank you thank you!

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  21. thank you for sharing this. we've lived much of this with our own special needs kiddo. thank you for being transparent about the blessings and the struggles. we will be praying for your sweet family.

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  22. Wish I lived closer to help you and give you a break. I have followed your blog since Issac's birth and you are a wonderful encouragement. Issac brings joy to my heart. Just seeing him smile still blesses me greatly because I have prayed for him and he is so loved . . . not just from his precious mother and father, but loved by all of us he has never met. Not many parents can say that . . . that their child is loved by so many around the world. I am at a different season of life, but I think your ultimate struggles are not so different. You are very special . . . so mature for your age and situation. Very difficult to find yourself in a role model position for other young mothers of special needs children, but you are handling it all with grace, truthfulness and honesty. You are truly a beautiful person and I feel very honored to know you through your blog. You inspire me to be a better mother, christian, and person. Always felt from the beginning that you are the perfect parents for Issac and feel even more so now. Through Issac and his story, you are able to minister to so many of us who struggle daily. Thank you.

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    1. Pamela - i have no words…those are the kindest words. thank you for encouraging me today!

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  23. I know the kind of stress you are talking about... it literally takes your breath away sometimes.

    But you are a light. John 1:5 says "The light shines in the darkness, and the darkness has not overcome it." This is why your story is precious and should be told. You guys shine Jesus... even when the days are hard and long. You're still living for Him, still loving Him and that speaks mountains to this world!

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    1. that just encouraged me! we all encourage one another. so beautiful. thank you Jesus!

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  24. Oh my goodness, I just read this post and I wish I could say that I understand what you're going through on a daily basis but I cannot. I do want to say that I think you both a incredible strong and brave and that even though you don't feel like you're doing anything to help, just seeing his little face smile is proof that you're doing something right. As much as everyone tries not to compare their little ones to others', it's human nature. No one wants their child to be behind in anything, but knowing the strides Isaac has made since he's been born is truly incredible. I hope that you can see through your past posts that your child is happy. Even though he won't eat food, even though he hates his high chair, he's so smart to have his own opinion on things which is so incredible at such a little age.

    Treat yourselves well. Continue to treat him like the most precious gift but also need to remember that you are precious also.

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  25. Min,

    Just caught up on your blog, and I have to say your rant seems very normal. Even with Kyle and Zach I've experienced similar issues. You've got classic motherhood, with a very special child! So, while you feel unique, the reality is you're not, and not alone. Motherhood is crazy, overwhelming, satisfying, painful, joyous, frustrating, and then it starts all over, again! It is God teaching, refining, and drawing us..to the ONE and ONLY who can help and understands the joy and crazies! : ) You make me

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