I've pondered these 5 words during my whole pregnancy- a rote response given by a pregnant woman to the question: "do you want a boy or a girl?" The mother always smiles and says she doesn't care, "as long as it's healthy." This is an innocent enough and admittedly convenient response, but each time I hear it said I feel a stab which leads me to silently follow up with the question "well, what if it's not?" It doesn't mean much to the mom who says it, perhaps she hasn't pondered in her heart the reality of the child she carries not being healthy, perhaps it's just a response to politely end the conversation. The fact remains we were given the ability to speak to convey truth and our words are not meaningless, they in fact hold the weight of the world.
We all want healthy children who grow and thrive and eventually leave our home to do great things. But sometimes Divine Providence steps in and gives us not what we, or the world for that matter want, but what we need- a child that is not so healthy. Then we are forced to choose- allow our hearts to be expanded through the trials and tortures, joys and beauty of having a child who is disabled, or close in upon ourselves in anger and retaliation towards God. If we embrace this most generous gift from God we will know love in a way we never imagined.
I am writing this post at 4 in the morning after waking from my nightmare: I can't bring Dominic back. In my dream I am on the floor with a limp child, doing everything I was taught to get him breathing again, all to no avail. At the end I am holding him, screaming to God that it's not time yet. By the time I wake up in tearful panic I am pleading with God that He give me the grace to accept His will gracefully when He deems it time to bring Dominic home. THIS is what you embrace when you say yes to a child- healthy or not- the lack of knowing what might happen, but having hope. Not the shallow hope the world holds out that everything is going to be okay- because eventually everything will not be okay and if we cling to this pseudo-hope our life will be shattered when the unthinkable happens. But to true Hope- hope in the Christ, in the resurrection, in the infinite and unshakable goodness of our God, in the truth that this world is not our final destination, in the reality that our Father loves us more than we can ever fathom.
Today is the day I deliver our sweet fifth child- Kolbe Francis. I so very much want a healthy child. I want him to be born and be pink and to cry and to nurse. I want him to keep me awake at night not with the beeping of machines but with the healthy cry for food. I want him to learn to sit and crawl and walk and pull ornaments off of the Christmas tree next year. But I realize that it is not what I want that glorifies God, but what I say yes to. My Father knows what I want and in his goodness He often grants me my hearts desire. But I must be willing to also accept the gifts he gives that I do not want, but need. All indicators point to the fact that this child will be healthy like his three oldest siblings. Still, I struggle to say not "as long as he's healthy," but rather "God's will be done."
Please pray for a safe delivery for Kolbe and myself. May God be glorified in all things!
Monday, December 22, 2014
Thursday, November 20, 2014
It's okay, stare...
Have you ever been in public and had grown people stop in their tracks, suddenly loosing control of their ability to keep their jaw closed, and stare at you? Have you heard the hushed whispers of adult women echoing behind you "what a shame" as you walk by? What about the nervous shifting eyes as you wheel your disabled child past? Have you seen mothers pull their children out of your path with more force than necessary when you walk past to avoid any awkward conversation? What about the frantic scolding of a child by his embarrassed mother after the little one says loudly "what's wrong with him?" Have you looked up to see the face of the offending child, being dragged away, looking back at you with beautiful, curious, sad eyes?
If so, you have felt the tinge of pain that floods your heart, the sharp anger that flashes in your soul, the silent rebukes known only in your mind made to the offenders. You have grown accustomed to the sad state of desolation people's hearts drown in, the lonely existence of generations of people turned inward, unable or unwilling to go outside of themselves and stare reality in the face. When you have done this long enough, you have experienced the transformation whereas your stony, angry heart has grown softer, more understanding of the suffering humanity who have not have the privileged to learn to love from the most lovable of us. You empathize with the embarrassed mothers who you now know are doing their best to protect you from the seeming ridicule of their children, who unknowingly ridicule you themselves by correcting their children with such force. You are able to pity the poor souls who don't see the pure beauty and goodness of the face of God in your disabled child. The anger leaves, the hostility melts, and what is left is a desire to make your child known to all- to spread his light to these impoverished souls who so need to know what real love is. To give your child as he was meant to be given- as a sign even this stony generation can see- of the mercy and love of God.
In light of all of the times we have been stared at, whispered about, and pitied, allow me to share with you a truth I have learned. It's only been 3 1/2 years with Dominic but I learned not in the school of books and theory, but rather in the school of perspective. That agonizing school of day to day reality that painfully takes your cold heart, that same heart you were sure knew how to love those uncomfortable to love, but actually pitied, and makes it real. Let me give you a secret so many of us parents with saint-babies want you to know but don't have the words to share. The key to loving them, and us, as you ought:
When your child stops and is overcome with doe-eyes, don't rebuke him. It's okay to stare. The rule to teach your children is "look, but also speak." It is natural for a child to be curious, don't hinder that. If you do, you are building a stone wall around their hearts. Let them look. But always help them come up and talk. Don't talk about Dominic as if he were not there, talk TO Dominic. I will introduce Dominic to your child and you can help your child shake his hand. Touching an "untouchable" will forever impact them- will make them unafraid of the next encounter and hopefully eventually they will not need your help to love those so different from themselves.
There is nothing in our lives to be pitied. In fact, I would argue that our lives are fuller than yours by the simple fact we are literally living with a saint. Sweet humans with such profound disability do not posses the ability to sin, making them closer to God than we. After all, it is not God who leaves us, but we who leave him. So please, don't say under your breath "what a shame," instead say "what a blessing!" Go ahead, come up and say hi, tell us what a beautiful child we have. This will help to soften the fortress guarding the heart that prevents you from being comfortable with the severely handicapped, and that makes us suspect everyone we meet. Coming up to those of us with children will prime you in effect to being confident to smile at those of us with "unsightly" adult children with the same disabilities.
If you are in the medical field, please don't pretend to understand. Practice humility, realizing you do not know what it's like and your book knowledge will not make up for that reality. Presumption is one of the greatest offenses we receive by those "educated" in the medical arts. Your education is in facts, books, theories, processes and procedures. You have much to learn. Know that and embrace it. If you have been called to this profession, realize your little years in school have taught you nothing compared with what you can learn by silencing your mind and listening with your heart to a child such as this for 10 minutes. A good practitioner is someone who can diagnose and treat. A great practitioner is someone who will learn.
I used to pray for Dominic to be healed, to be cured. I prayed for him to survive and be just like everyone else. But now I see such prayers are futile and shallow. It is not he that needs to be healed, it is us, me. It is not he who turns his back towards God, it is I. God shows his mercy to Dominic by preserving him from the ability to sin, but in an even greater respect, He showers his mercy on us by allowing such great a teacher as Dominic to show us how to love. We turn inward, into our plastic world, our well-manicured cyber-reality and deny the fact that God himself is calling us. What profound love He has for us to send such as Dominic in our midst- we may be able to ignore the whisper of God, but we can not ignore the shocking reality of those such as this. Now my prayer is merely "your will be done- may I learn what you intended me to learn in whatever time you give us." But he is not just ours, he is also yours, a living sign of the love God has for all of us. It is my hope you can hear His whisper through Dominic- listen, before it's too late.
If so, you have felt the tinge of pain that floods your heart, the sharp anger that flashes in your soul, the silent rebukes known only in your mind made to the offenders. You have grown accustomed to the sad state of desolation people's hearts drown in, the lonely existence of generations of people turned inward, unable or unwilling to go outside of themselves and stare reality in the face. When you have done this long enough, you have experienced the transformation whereas your stony, angry heart has grown softer, more understanding of the suffering humanity who have not have the privileged to learn to love from the most lovable of us. You empathize with the embarrassed mothers who you now know are doing their best to protect you from the seeming ridicule of their children, who unknowingly ridicule you themselves by correcting their children with such force. You are able to pity the poor souls who don't see the pure beauty and goodness of the face of God in your disabled child. The anger leaves, the hostility melts, and what is left is a desire to make your child known to all- to spread his light to these impoverished souls who so need to know what real love is. To give your child as he was meant to be given- as a sign even this stony generation can see- of the mercy and love of God.
In light of all of the times we have been stared at, whispered about, and pitied, allow me to share with you a truth I have learned. It's only been 3 1/2 years with Dominic but I learned not in the school of books and theory, but rather in the school of perspective. That agonizing school of day to day reality that painfully takes your cold heart, that same heart you were sure knew how to love those uncomfortable to love, but actually pitied, and makes it real. Let me give you a secret so many of us parents with saint-babies want you to know but don't have the words to share. The key to loving them, and us, as you ought:
When your child stops and is overcome with doe-eyes, don't rebuke him. It's okay to stare. The rule to teach your children is "look, but also speak." It is natural for a child to be curious, don't hinder that. If you do, you are building a stone wall around their hearts. Let them look. But always help them come up and talk. Don't talk about Dominic as if he were not there, talk TO Dominic. I will introduce Dominic to your child and you can help your child shake his hand. Touching an "untouchable" will forever impact them- will make them unafraid of the next encounter and hopefully eventually they will not need your help to love those so different from themselves.
There is nothing in our lives to be pitied. In fact, I would argue that our lives are fuller than yours by the simple fact we are literally living with a saint. Sweet humans with such profound disability do not posses the ability to sin, making them closer to God than we. After all, it is not God who leaves us, but we who leave him. So please, don't say under your breath "what a shame," instead say "what a blessing!" Go ahead, come up and say hi, tell us what a beautiful child we have. This will help to soften the fortress guarding the heart that prevents you from being comfortable with the severely handicapped, and that makes us suspect everyone we meet. Coming up to those of us with children will prime you in effect to being confident to smile at those of us with "unsightly" adult children with the same disabilities.
If you are in the medical field, please don't pretend to understand. Practice humility, realizing you do not know what it's like and your book knowledge will not make up for that reality. Presumption is one of the greatest offenses we receive by those "educated" in the medical arts. Your education is in facts, books, theories, processes and procedures. You have much to learn. Know that and embrace it. If you have been called to this profession, realize your little years in school have taught you nothing compared with what you can learn by silencing your mind and listening with your heart to a child such as this for 10 minutes. A good practitioner is someone who can diagnose and treat. A great practitioner is someone who will learn.
I used to pray for Dominic to be healed, to be cured. I prayed for him to survive and be just like everyone else. But now I see such prayers are futile and shallow. It is not he that needs to be healed, it is us, me. It is not he who turns his back towards God, it is I. God shows his mercy to Dominic by preserving him from the ability to sin, but in an even greater respect, He showers his mercy on us by allowing such great a teacher as Dominic to show us how to love. We turn inward, into our plastic world, our well-manicured cyber-reality and deny the fact that God himself is calling us. What profound love He has for us to send such as Dominic in our midst- we may be able to ignore the whisper of God, but we can not ignore the shocking reality of those such as this. Now my prayer is merely "your will be done- may I learn what you intended me to learn in whatever time you give us." But he is not just ours, he is also yours, a living sign of the love God has for all of us. It is my hope you can hear His whisper through Dominic- listen, before it's too late.
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| This July Dominic had emergency surgery for a twisted bowel. We thought our time with him was up. God had other plans. |
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| He teaches us to embrace our cross- just as he embraces his. |
Tuesday, October 7, 2014
Incase you needed a smile...
There is so much to write, so much to say, but this little baby boy in my tummy wants me to go to bed so he can wake up and party. For tonight, here's a little something to brighten your day.
Thursday, June 12, 2014
"What's so wrong with that"
These are the words I heard after confiding to someone a couple years ago that I was too scared to have another baby. I said there was always a chance that the next baby would be like Dominic and I just couldn't take that risk. The response came quickly and simply; innocent and with pure intention. "What's so wrong with that." Those words cut my soul. They made me pause, flush with red glow, turn interior and admittedly get a little embarrassed and mad. What did I just say? Is my whole understanding of life and the value of each and every human person a sham? Do I really wish that no one else like Dominic be born into our family? Did I actually love Dominic and his handicaps like I said I did?
I remember pausing and looking at this person with the knowledge that all is pure to the pure, and this comment was just that: pure. Dominic was not a burden in this person's eyes, but an amazing blessing from an all-powerful and generous God. Most other people would have tilted their heads and nodded with that sort of pitying agreement that one doesn't mind at times like this. But not this person. This person spoke truth. And truth isn't comfortable and fluffy. Truth about ones self, when it comes from looking into the deepest recesses of one's own heart is miserable, bare, vulnerable, uncomfortable and sometimes even awful. It was these words which cut into my soul, leaving in their wake the bare naked reality of my closed heart.
It isn't often that something strikes you so deeply, wounds with that beautiful blade of raw truth, that you remember exactly where you were, what the room looked like, the expressions in the faces around you, and your gut feeling when this event took place. I have a hand-full of these memories, most occurring as a child, and this statement added to my collection. Why in these few little words was I so convicted? It is because of this: these words were spoken in love, all comforts and niceties aside, with no regard to making me feel happy in an earthly way, but in an eternal one. The memory is vivid in my mind and since that day years ago I have pondered this question with uncomfortable sincerity.
It is true another child would make things more difficult. It is true I will always have a huge infant to care for in Dominic (God willing as long as we have him). It is true that my resources may be at times completely spent emotionally, physically, and monetarily. But it isn't all about me. Any parent knows this job isn't about them. It is about these tiny little eternal souls that we have had the privilege to co-create. About their good, and theirs alone. And when we tend to their good, we in consequence enhance our own good. It's a great design, don't you think?
And so it happened that through these almost three years the fear of "what if" has lifted in my heart and I have become aware of my smallness in this world. I have learned that in this smallness God has chosen me to mother this baby saint Dominic. And it is precisely in the smallness of his forever infant-hood that he has touched countless souls, shown the face of God to those who can not see it elsewhere. Who am I to close myself off to another gift if that is what God desires? And so it is in this that I found my real fear and surprisingly it is not of having another child with special needs, it lies in my selfish desire to be free. It all boiled down to me: how will I do it, how will I transport a baby and a wheelchair, how will I care for two infants at the same time, one just much bigger than the other, how can I ever be independent with another child. And the answer came, as it always does, in the sweet stillness of my heart. My life is not mine, in fact it's not about me at all, but rather about all those I am called to serve while on this earth. About loving the Lord the best I can in the situations He places me by serving those he puts in my path. About the little jobs done lovingly which come with being a housewife and mother, however unglamorous they may be. This is what I am asked to do, what we are all asked to do. Serve where we are.
In this light saying yes to the possibility of another child is a no-brainer. Another baby would do nothing to Dominic but make his days filled with joyful squeals. He laughs hysterically when a baby cries and seeks them when they are laid down next to him. The other children have been praying for another sibling for years. They see another baby not as a burden that will take up their resources but as a priceless addition to their personal wealth. Another sibling is the best gift we could give them.
And so it is that we are over-joyed to announce the newest Short baby due Christmas 2014. We are humbled that the Lord has chosen us again to foster another eternal soul who will, God willing, spend his eternity praising God with the Angelic Choirs. My prayer is that this baby is healthy, but in all things, God's perfect will be done, not mine.
I remember pausing and looking at this person with the knowledge that all is pure to the pure, and this comment was just that: pure. Dominic was not a burden in this person's eyes, but an amazing blessing from an all-powerful and generous God. Most other people would have tilted their heads and nodded with that sort of pitying agreement that one doesn't mind at times like this. But not this person. This person spoke truth. And truth isn't comfortable and fluffy. Truth about ones self, when it comes from looking into the deepest recesses of one's own heart is miserable, bare, vulnerable, uncomfortable and sometimes even awful. It was these words which cut into my soul, leaving in their wake the bare naked reality of my closed heart.
It isn't often that something strikes you so deeply, wounds with that beautiful blade of raw truth, that you remember exactly where you were, what the room looked like, the expressions in the faces around you, and your gut feeling when this event took place. I have a hand-full of these memories, most occurring as a child, and this statement added to my collection. Why in these few little words was I so convicted? It is because of this: these words were spoken in love, all comforts and niceties aside, with no regard to making me feel happy in an earthly way, but in an eternal one. The memory is vivid in my mind and since that day years ago I have pondered this question with uncomfortable sincerity.
It is true another child would make things more difficult. It is true I will always have a huge infant to care for in Dominic (God willing as long as we have him). It is true that my resources may be at times completely spent emotionally, physically, and monetarily. But it isn't all about me. Any parent knows this job isn't about them. It is about these tiny little eternal souls that we have had the privilege to co-create. About their good, and theirs alone. And when we tend to their good, we in consequence enhance our own good. It's a great design, don't you think?
And so it happened that through these almost three years the fear of "what if" has lifted in my heart and I have become aware of my smallness in this world. I have learned that in this smallness God has chosen me to mother this baby saint Dominic. And it is precisely in the smallness of his forever infant-hood that he has touched countless souls, shown the face of God to those who can not see it elsewhere. Who am I to close myself off to another gift if that is what God desires? And so it is in this that I found my real fear and surprisingly it is not of having another child with special needs, it lies in my selfish desire to be free. It all boiled down to me: how will I do it, how will I transport a baby and a wheelchair, how will I care for two infants at the same time, one just much bigger than the other, how can I ever be independent with another child. And the answer came, as it always does, in the sweet stillness of my heart. My life is not mine, in fact it's not about me at all, but rather about all those I am called to serve while on this earth. About loving the Lord the best I can in the situations He places me by serving those he puts in my path. About the little jobs done lovingly which come with being a housewife and mother, however unglamorous they may be. This is what I am asked to do, what we are all asked to do. Serve where we are.
 |
| Dominic joyfully finding his newest friend, baby Polly. He wouldn't keep his hands away from her the whole time she was by him. |
And so it is that we are over-joyed to announce the newest Short baby due Christmas 2014. We are humbled that the Lord has chosen us again to foster another eternal soul who will, God willing, spend his eternity praising God with the Angelic Choirs. My prayer is that this baby is healthy, but in all things, God's perfect will be done, not mine.
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| This is a profile with the baby lying on his/her back, looking up. |
Monday, June 2, 2014
My dad taught me all I need to know about God
Remember back when you were a kid to your first trip on a roller coaster. It was hot, the ground smelled like tar, your dad's huge arm was wet with sweat but you didn't mind- that is what held you in to the roller coaster seat. He knew he couldn't trust the safety bar to do the job so he strapped you in behind his strong arm; you were safe. The car started, you were going up higher and higher on the tracks until suddenly you reached the top of the drop off. Now stop. You had so much faith in the protection your dad had over you, but now suddenly when you can see the entire amusement park, when you can see two cities away, you had the smallest glimmer of a doubt. Could he really hold you in?
This is how I can describe these past almost three years, but more precisely these past 6 months. There have been ups and downs, twists and turns. Sometimes I know my Father is there, other times I panic wondering if he has really got this under control. I have squeezed free of the safety of His arm, trusting myself more than him, just to fly into a complete panic and seek refuge again. I have found that under His strong arm is scary, but I can hide, knowing I cannot be harmed, but outside of that protection is terrifying. Outside of His grasp is utter chaos, mortal danger, certain death. I am a stubborn child; He is a patient Father. I escape, He waits. I seek refuge, He embraces me once again, holding me tighter than before.
A few months ago I was certain our life was about to come crashing down. I just knew Dominic's time was up. I was in a state of panic, mistrust, and utter agony. Dreadful mourning. Mike told me not to presume God's will- I responded no presumption was present- I just knew, this was it. I didn't write because I was too vulnerable; cut open, bleeding. I didn't want to hear everything was going to be okay, because it wasn't. It just wasn't. Finally I came to peace and waited. But nothing happened. Why? Why did he wake up every morning? Why did he come through surgery okay? Why did the surgeon say everything was great? This isn't the plan! I am ready now- if you're going to take him, then DO IT! Nothing. Stillness. I fly into a mistrust- a sort of crisis. I thought I knew God's plan. I was ready, I begged, He didn't listen. Where was He? Didn't He care?
Once I prayed for peace and my heart was quieted, I heard Him, a whisper in my soul. He had been there the whole time. Trust. Trust is what he asked from me. Complete abandon. Just like when I was little. The roller coaster would start the fast descent and all my panic would vanish. It was just my dad and me. I held on to his big, strong arm with all my might, a smile across my face knowing everything was going to be okay- my dad had me, nothing could hurt me. I may have been shaking from the fear of the unknown but I knew I was safe. He had me. No matter what may come around the next bend, my dad protected me and I knew it.
God is like this. We are like little children being held in to that roller coaster. He does not let us see what's coming after the next hill. He doesn't say we'll have easy lives with no hardship or sickness. He doesn't say terrible, awful things won't happen to us. He says "Trust Me. I'm enough." All we have to do is hang on, knowing whatever may come He is there... and He won't let us fall. He holds us tight, like my dad did. If we remain in Him, trust in Him whatever may come, He will never fail us. Though I tremble in fear, peace surrounds my soul knowing I belong to Him alone. I am His daughter and that makes me immovable. Even the gates of Hell can not overcome me if I hide behind his great, immovable arm. When the awful time does come when Heaven rejoices over their newest saint, I will no doubt be crushed. But I will remain safe under the protection of my Good God. I will look up to Him and He will say to me "Trust Me, I've got this." And God willing, I will.
I thank my dad with all that I am for teaching me how to trust my Heavenly Father. The father's job on earth is to show his children some of the truth of our Father in Heaven. He has made it natural for me- I learned to trust my dad which makes trusting God that much easier. Thanks for holding onto me tight. You never failed me.
Thanks Dad,
Your Dega Bear Hunter
This is how I can describe these past almost three years, but more precisely these past 6 months. There have been ups and downs, twists and turns. Sometimes I know my Father is there, other times I panic wondering if he has really got this under control. I have squeezed free of the safety of His arm, trusting myself more than him, just to fly into a complete panic and seek refuge again. I have found that under His strong arm is scary, but I can hide, knowing I cannot be harmed, but outside of that protection is terrifying. Outside of His grasp is utter chaos, mortal danger, certain death. I am a stubborn child; He is a patient Father. I escape, He waits. I seek refuge, He embraces me once again, holding me tighter than before.
A few months ago I was certain our life was about to come crashing down. I just knew Dominic's time was up. I was in a state of panic, mistrust, and utter agony. Dreadful mourning. Mike told me not to presume God's will- I responded no presumption was present- I just knew, this was it. I didn't write because I was too vulnerable; cut open, bleeding. I didn't want to hear everything was going to be okay, because it wasn't. It just wasn't. Finally I came to peace and waited. But nothing happened. Why? Why did he wake up every morning? Why did he come through surgery okay? Why did the surgeon say everything was great? This isn't the plan! I am ready now- if you're going to take him, then DO IT! Nothing. Stillness. I fly into a mistrust- a sort of crisis. I thought I knew God's plan. I was ready, I begged, He didn't listen. Where was He? Didn't He care?
Once I prayed for peace and my heart was quieted, I heard Him, a whisper in my soul. He had been there the whole time. Trust. Trust is what he asked from me. Complete abandon. Just like when I was little. The roller coaster would start the fast descent and all my panic would vanish. It was just my dad and me. I held on to his big, strong arm with all my might, a smile across my face knowing everything was going to be okay- my dad had me, nothing could hurt me. I may have been shaking from the fear of the unknown but I knew I was safe. He had me. No matter what may come around the next bend, my dad protected me and I knew it.
God is like this. We are like little children being held in to that roller coaster. He does not let us see what's coming after the next hill. He doesn't say we'll have easy lives with no hardship or sickness. He doesn't say terrible, awful things won't happen to us. He says "Trust Me. I'm enough." All we have to do is hang on, knowing whatever may come He is there... and He won't let us fall. He holds us tight, like my dad did. If we remain in Him, trust in Him whatever may come, He will never fail us. Though I tremble in fear, peace surrounds my soul knowing I belong to Him alone. I am His daughter and that makes me immovable. Even the gates of Hell can not overcome me if I hide behind his great, immovable arm. When the awful time does come when Heaven rejoices over their newest saint, I will no doubt be crushed. But I will remain safe under the protection of my Good God. I will look up to Him and He will say to me "Trust Me, I've got this." And God willing, I will.
I thank my dad with all that I am for teaching me how to trust my Heavenly Father. The father's job on earth is to show his children some of the truth of our Father in Heaven. He has made it natural for me- I learned to trust my dad which makes trusting God that much easier. Thanks for holding onto me tight. You never failed me.
Thanks Dad,
Your Dega Bear Hunter
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| A boy and his dad |
Monday, March 24, 2014
10 reasons I haven't blogged lately...
...and why I've abandoned you poor people who love Baby-D and look for his smiling face on new posts :
1. Dominic is now a professional "de-cannulator" (a.k.a. trach-puller-outer). His trach seems to be coming out more and more often lately. The other day in the car he was on the vent and I noticed his trach looked sideways. Sure enough, it was out and the vent didn't alarm (never does- grrr). Emergency road-side trach change, laughing hysterically afterwards to relieve our nerves (not funny-ha-ha, but funny-can't-believe-this-is-our-life), and a beer afterwards to celebrate his breathing.
2. Dominic doesn't sleep. At night anyway. He has no regulation in his sleep/wake cycle so he will sleep all day then wake up at night. Of course I have to hold him til' I can't stay awake any longer so he remembers who his momma is, not the sweet African woman he chills out with all night (errr, that would be his nurse- not a random African woman. In case that needed clarification.).
3. We've moved! God always provides, and this time he provided a new pad for Baby D that has it's own therapy room. It is great, all his equipment in one room, all the home school stuff in another. No co-mingling of therapists talk/school talk. Perfect. I'm trying to figure out how to hang a therapy swing in there... because if I can't work as a PT for now, at least I can have a PT gym in my house. :)
4. I worked out. Once. But I was way too tired that night to write.
5. My kids have too much stuff. I seriously thought I would be unpacked in one day. Seriously. Well, 14 is almost the same as 1, right?
6. Dominic has too many appointments. True, the doctors visits have slowed... and true they are all during the day... but I'm fishing for reasons here.
7. I'm lazy. There, now the world knows.
8. I like to read. I have a small window at night to choose one activity only (prior to passing out): reading, talking to Mike, writing a blog, preparing for the next school day. Reading normally wins.
9. There's been no big news. Well, except all the close death-calls. But hey, that's old hat by now, right?
10. We got a new neurologist. That technically doesn't count as a reason why I haven't blogged but I have been bummed to loose our old one. He was after all, my favorite Doc. Remember, the big, goofy walking medical school? I love him. Our new one is good too... but he has big shoes to fill. Literally.
So there, 10 excuses for you. Forgive me. Even if I don't have anything to say, I'll try to post pictures anyway. That's what you really want anyway, right?
Sleepily yours,
Chasity
1. Dominic is now a professional "de-cannulator" (a.k.a. trach-puller-outer). His trach seems to be coming out more and more often lately. The other day in the car he was on the vent and I noticed his trach looked sideways. Sure enough, it was out and the vent didn't alarm (never does- grrr). Emergency road-side trach change, laughing hysterically afterwards to relieve our nerves (not funny-ha-ha, but funny-can't-believe-this-is-our-life), and a beer afterwards to celebrate his breathing.
2. Dominic doesn't sleep. At night anyway. He has no regulation in his sleep/wake cycle so he will sleep all day then wake up at night. Of course I have to hold him til' I can't stay awake any longer so he remembers who his momma is, not the sweet African woman he chills out with all night (errr, that would be his nurse- not a random African woman. In case that needed clarification.).
3. We've moved! God always provides, and this time he provided a new pad for Baby D that has it's own therapy room. It is great, all his equipment in one room, all the home school stuff in another. No co-mingling of therapists talk/school talk. Perfect. I'm trying to figure out how to hang a therapy swing in there... because if I can't work as a PT for now, at least I can have a PT gym in my house. :)
4. I worked out. Once. But I was way too tired that night to write.
5. My kids have too much stuff. I seriously thought I would be unpacked in one day. Seriously. Well, 14 is almost the same as 1, right?
6. Dominic has too many appointments. True, the doctors visits have slowed... and true they are all during the day... but I'm fishing for reasons here.
7. I'm lazy. There, now the world knows.
8. I like to read. I have a small window at night to choose one activity only (prior to passing out): reading, talking to Mike, writing a blog, preparing for the next school day. Reading normally wins.
9. There's been no big news. Well, except all the close death-calls. But hey, that's old hat by now, right?
10. We got a new neurologist. That technically doesn't count as a reason why I haven't blogged but I have been bummed to loose our old one. He was after all, my favorite Doc. Remember, the big, goofy walking medical school? I love him. Our new one is good too... but he has big shoes to fill. Literally.
So there, 10 excuses for you. Forgive me. Even if I don't have anything to say, I'll try to post pictures anyway. That's what you really want anyway, right?
Sleepily yours,
Chasity
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| Anthony received his First Holy Communion last month! |
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| Afterwards, to celebrate, we brought the whole family to a ranch, thanks to some very good.generous people. There was a little house we stayed in with electricity so Dominic could go. A family retreat- it was the best gift! |
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| Mike watching the other kids play while Dominic talked in his cute trach-baby way |
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| Chillaxin'. He says he could get used to this! |
Tuesday, February 11, 2014
Cowboy Dominic- YeeHaw!
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| Dominic getting ready for therapy! |
We walked into the barn and I was taken aback by the enormous horse who was standing in front of me. Because I have not yet learned a solitary thing about this new type of physical therapy using horses, I assumed a little guy like Dominic would be on a little horse, just his size. But instead there stood in front of us a giant of a horse, a 24 year old draft horse, the type with long fur encircling his ankles. He was being groomed and eating treats, great globs of green-treat slobber falling from his mouth. We patted his head and I helped Dominic feel his fur. Dominic showed his excitement by raising his eyebrows in the curious way he does- that way that speaks for his whole body. That boy sure does have great eyebrows. What he lacks in the ability to express himself with his body, he makes up with great, expressive eyebrows.
Dominic was fitted with his helmet and off to the arena we went (drove actually because I'm too lazy to carry that big ol' boy that far). I guess by now you are wondering why in the world we are at a ranch, looking a horse, and putting a helmet on Dominic, eh? He has started hippotherapy, which is physical therapy using a horse as a modality, or tool, to facilitate the desired movements in the patient. Children can start at the age of two and his physical therapist just happens to be a certified hippotherapist! Back to the story. To mount the horse, there is a big box, about 4 feet high where we all stand. The therapist mounted first then took Dominic and sat him in front of her. The whole session, there was a horse-leader and two side-walkers (my mom and myself) to make sure Dominic was safe and sound. We walked with that horse around the arena for about 30 minutes and Dominic would off and on smile, showing his pleasure of being on top of his new friend named Dixie. The therapy was fun, but very tiring for him, and after 30 minutes he was just about a little mush-pot. We gave him a rest and our sweet therapist let each of the other kids have a turn riding Dixie for a few minutes. She realized how the siblings of special needs children often get pushed to the side, unable to do the "fun" stuff like play during therapy or get all the attention from the doctors and nurses. I am so grateful for her heart that is open to the needs of the siblings too- that is a rare find to be sure.
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| MiMi enjoying the beautiful scenery |
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During that session when I saw him slowly start to sit more upright, start to hold his head a little higher, look around as if a tad bit more alert I felt the first glimmer of hope in his improvement that I have had in quite some time. Normally, I fully expect him to continue to decline in function, but that little sweet bag-o-treats just keeps proving me wrong. I am hopeful this new therapy will help him gain the strength to enjoy his family, his home, and his environment just a little bit more. Who knows, maybe he'll even learn to sit all by himself!
So here's a heart-felt thank you to his sweet therapist and her unyielding commitment to make his life just a little better. Ride on, Cowboy Dom!
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| Anthony getting his turn. (Ignore my high-waters. What, you didn't see them til' now? Shucks) |
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| Mary Grace refused to go alone so her bug bubba Jake obliged and let her tag along. :) |
Wednesday, January 15, 2014
Dear Angry Dad at the Hospital,
I saw you yesterday in the hospital cafeteria play room. You sat in a booth, hunched over in your mechanics work shirt. You were tired, ragged, and damn mad. I saw your kids run around while you waited. You were frowning and had your face buried in your phone. I saw you yell at your children when they asked for attention. All 5 of them. I saw you scold your littlest one, who must have been 4 years old, for not knowing how to put his shoes on. You yelled at the other kids who stole away with your Diet Coke. I saw your teenage daughter's attempted for attention ignored, pushed off. She shrugged it off and went back to her sisters and brothers. I could see the weight of the world on your shoulders. And I get it.
After all, people don't come hang out in the hospital play room for fun. You're there because one of your children is sick. This could very well be the worst day of your life, the day your child gets that awful diagnosis or the day chemo starts. Maybe you had a fight with your wife this morning and this day that is dragging on and on and on has just gotten the best of you. Surely you have to return to work to finish out your labor intensive day.
The truth is we've all been there. All of us fellow hospital parents I mean. We've waited those long waits. We've succumbed to the temptation to get pissed at the world, pissed at the staff, pissed because we can't take one more day of hospital food. We've been down and out. Done.
Our healthy kids have waited too. They've feasted on the crap they pass off as food in the cafeteria. We've given into their incessant pleas for goodies and paid for it with the subsequent sugar highs... and lows. We've watched TV till we saw double and left that same seductive box a little emptier in our souls than when we began. We've gritted our teeth watching the nurses hurt our kids, for the good of our child of course. We've waited. For hours. And hours. And the moment we finally leave the room to grab a quick bite to eat, that elusive person for whom we've already waited 8 hours has come and gone. Impeccable timing.
It's the waiting that's the worst part. It's the sheer mental and physical exhaustion of just being there, doing nothing, waiting.
I get it. I understand why you're so dang mad. I've been mad too. Just like you, I've wanted to bury my soul into useless things, to sit with my face illuminated by the glow of my phone or the TV. Actually, I have done this. And I've felt any residual hope, or life, or happiness sucked right out of me during those difficult low moments. The truth is, these pointless things will not get us through, they can't fix what's broken. Being too busy to watch our kids newest amazing acrobatics won't help anyone. Not us, not them. These times are one long, brutal fight. A fight to keep afloat. A fight to keep the faith. A fight to not allow your soul to die off little by little.
What you need dear Angry Dad, is to put your phone down. To sit, waste time with your kids. Watch their stupid little rolls and tricks. Laugh at their silly antics and their game of chase. Help your kids put their shoes on. It is not only you who is being crushed by the gravity of the illness your sick child has. It's your kids too. And your wife. And any other family you are lucky enough to have standing with you at this terrible time. They are all crushed. Down. Angry. And that is why you must stand. You must be the strength that holds everyone together. You HAVE to be present, to be the safe place your kids can go. The person who can affirm the unfortunate reality of the situation while at the same time hugging that worried child and letting her know you're not going anywhere. And especially your teenager. If you don't hold her, I guarantee she'll find someone who will.
But know Sir, you are not alone. All of us fellow hospital parents are silently behind you. If nothing more, to just give you that familiar look of understanding. But it is not us that you must rely; it is Him. I have told you to stand, to be the glue. But rest assured, it is not you who will be holding everyone together. You are not strong enough. You are weak. And it is in this weakness that you will find Strength. Allow yourself to be broken down, pleading on your knees, utterly demolished. It is precisely then that your Strength will come, precisely at the moment you admit you can't do it that you will be rescued. Your Strength will be Him. He who carried the weight of the world on his shoulders. He who sweated blood for you. It is Him. You no doubt have been given more than you can handle. After all, if you are never stretched, how would you ever grow? So, rely on His divine providence. His unfailing fidelity. You take the first step, He'll carry you the rest of the way. This will not be easy, but just remember, His grace is sufficient.
Sincerely,
A fellow hospital parent
P.S. Please remember these little words of wisdom dear Angry Dad. You may be the one telling them to me next time.
After all, people don't come hang out in the hospital play room for fun. You're there because one of your children is sick. This could very well be the worst day of your life, the day your child gets that awful diagnosis or the day chemo starts. Maybe you had a fight with your wife this morning and this day that is dragging on and on and on has just gotten the best of you. Surely you have to return to work to finish out your labor intensive day.
The truth is we've all been there. All of us fellow hospital parents I mean. We've waited those long waits. We've succumbed to the temptation to get pissed at the world, pissed at the staff, pissed because we can't take one more day of hospital food. We've been down and out. Done.
Our healthy kids have waited too. They've feasted on the crap they pass off as food in the cafeteria. We've given into their incessant pleas for goodies and paid for it with the subsequent sugar highs... and lows. We've watched TV till we saw double and left that same seductive box a little emptier in our souls than when we began. We've gritted our teeth watching the nurses hurt our kids, for the good of our child of course. We've waited. For hours. And hours. And the moment we finally leave the room to grab a quick bite to eat, that elusive person for whom we've already waited 8 hours has come and gone. Impeccable timing.
It's the waiting that's the worst part. It's the sheer mental and physical exhaustion of just being there, doing nothing, waiting.
I get it. I understand why you're so dang mad. I've been mad too. Just like you, I've wanted to bury my soul into useless things, to sit with my face illuminated by the glow of my phone or the TV. Actually, I have done this. And I've felt any residual hope, or life, or happiness sucked right out of me during those difficult low moments. The truth is, these pointless things will not get us through, they can't fix what's broken. Being too busy to watch our kids newest amazing acrobatics won't help anyone. Not us, not them. These times are one long, brutal fight. A fight to keep afloat. A fight to keep the faith. A fight to not allow your soul to die off little by little.
What you need dear Angry Dad, is to put your phone down. To sit, waste time with your kids. Watch their stupid little rolls and tricks. Laugh at their silly antics and their game of chase. Help your kids put their shoes on. It is not only you who is being crushed by the gravity of the illness your sick child has. It's your kids too. And your wife. And any other family you are lucky enough to have standing with you at this terrible time. They are all crushed. Down. Angry. And that is why you must stand. You must be the strength that holds everyone together. You HAVE to be present, to be the safe place your kids can go. The person who can affirm the unfortunate reality of the situation while at the same time hugging that worried child and letting her know you're not going anywhere. And especially your teenager. If you don't hold her, I guarantee she'll find someone who will.
But know Sir, you are not alone. All of us fellow hospital parents are silently behind you. If nothing more, to just give you that familiar look of understanding. But it is not us that you must rely; it is Him. I have told you to stand, to be the glue. But rest assured, it is not you who will be holding everyone together. You are not strong enough. You are weak. And it is in this weakness that you will find Strength. Allow yourself to be broken down, pleading on your knees, utterly demolished. It is precisely then that your Strength will come, precisely at the moment you admit you can't do it that you will be rescued. Your Strength will be Him. He who carried the weight of the world on his shoulders. He who sweated blood for you. It is Him. You no doubt have been given more than you can handle. After all, if you are never stretched, how would you ever grow? So, rely on His divine providence. His unfailing fidelity. You take the first step, He'll carry you the rest of the way. This will not be easy, but just remember, His grace is sufficient.
Sincerely,
A fellow hospital parent
P.S. Please remember these little words of wisdom dear Angry Dad. You may be the one telling them to me next time.
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| "The Dream of St. Joseph." Trust, Angry Dad. Just Trust. Saint Joseph, pray for us! |
Monday, January 13, 2014
Don't cry over spilled... avocado??
As you can imagine, there are a lot of spills in our house. Four kids combined with 3 meals and two snacks a day at home, we average a spill a day at least. These are normally no big deal: a glass of milk here, a cup of ice water there, some soup maybe, Fun Dip (blame my mom, she bought it for them), little water puddles under Dominic's vent tubing. Nothing note-worthy really. With the business of homeschooling and preparing (and cleaning) up 3 meals and two snacks every single day of our lives (sigh), you might expect the kids to be the biggest culprits of messes in this family. Well, dear reader, you guessed wrong. I will not spill the beans as to my extreme messiness as a whole, but only give you a little insight into life with me.
Imagine if you will, 3 hours of washing, chopping, cooking, blending and jarring baby food. My mom and I have already gone through a cup of hot coffee and another glass of iced coffee, the chatter is slowing, we're ready to be done. And then, SMASH! A box my mom was carrying had it's bottom fall out and the result was a big ol' fat hot mess. There was glass mingled with Dominic's breakfast blend: avocado, oatmeal, butter, egg yolks, apples, and bananas everywhere. On the floor, up the cabinets, on the back of our pants, in my Birkenstocks, across the kitchen floor under the dining table, on my shirt. We stood still, silent in complete disbelief. Should we be upset that all that work was now scattered across the floor? Should we be mad at the dang box that broke? We looked at each other in this decisive moment and opted to take the path of hilarity. Loud laughter filled the room mingled with sighs and "oh man's." My sister, who had been cuddling Dominic in the living room, peeked around the corner and saw our mess. Lucky for her, she had only enough time to snap a few pictures before having to leave to get her girls from school. I just stood, staring at the mess- really unsure where to begin cleaning this massive disaster.
After all the goo covered glass shards were scooped up and the floors mopped, a slippery film remained. We could have mopped a second or third time, but we preferred the danger of repeating the same accident and getting it all done to having to waste any more time cleaning. After all, this is the woman from whom I learned it is better to break you leg and carry 27 grocery bags (and a baby on your hip) in at once than to take a second trip. I am just like her in this way- ferociously, hopelessly stubborn. Luckily though, we finished the rest of the breakfast and dinner foods without further incident, taking special care to walk flat footed across the slimy parts of the floor as to prevent any further spillage. The floor remained nasty for 2 more days (lest you think me super-mom or something) until finally last night I scrubbed the remainder of dried breakfast blend from most every surface in my kitchen. Our main objective after all, upon completion of this labor intensive work that is Dom's food prep, is to collapse on the couch for a few blissful moments of uninterrupted sighing and coffee drinking. A perfect reward for a job well done.
Here's to you Dominic- I hope you enjoy the rest of your breakfast food that actually made it into the jars and in the freezer. You may be a mess, but you're worth it!
In and For Them,
Chasity
Imagine if you will, 3 hours of washing, chopping, cooking, blending and jarring baby food. My mom and I have already gone through a cup of hot coffee and another glass of iced coffee, the chatter is slowing, we're ready to be done. And then, SMASH! A box my mom was carrying had it's bottom fall out and the result was a big ol' fat hot mess. There was glass mingled with Dominic's breakfast blend: avocado, oatmeal, butter, egg yolks, apples, and bananas everywhere. On the floor, up the cabinets, on the back of our pants, in my Birkenstocks, across the kitchen floor under the dining table, on my shirt. We stood still, silent in complete disbelief. Should we be upset that all that work was now scattered across the floor? Should we be mad at the dang box that broke? We looked at each other in this decisive moment and opted to take the path of hilarity. Loud laughter filled the room mingled with sighs and "oh man's." My sister, who had been cuddling Dominic in the living room, peeked around the corner and saw our mess. Lucky for her, she had only enough time to snap a few pictures before having to leave to get her girls from school. I just stood, staring at the mess- really unsure where to begin cleaning this massive disaster.
After all the goo covered glass shards were scooped up and the floors mopped, a slippery film remained. We could have mopped a second or third time, but we preferred the danger of repeating the same accident and getting it all done to having to waste any more time cleaning. After all, this is the woman from whom I learned it is better to break you leg and carry 27 grocery bags (and a baby on your hip) in at once than to take a second trip. I am just like her in this way- ferociously, hopelessly stubborn. Luckily though, we finished the rest of the breakfast and dinner foods without further incident, taking special care to walk flat footed across the slimy parts of the floor as to prevent any further spillage. The floor remained nasty for 2 more days (lest you think me super-mom or something) until finally last night I scrubbed the remainder of dried breakfast blend from most every surface in my kitchen. Our main objective after all, upon completion of this labor intensive work that is Dom's food prep, is to collapse on the couch for a few blissful moments of uninterrupted sighing and coffee drinking. A perfect reward for a job well done.
Here's to you Dominic- I hope you enjoy the rest of your breakfast food that actually made it into the jars and in the freezer. You may be a mess, but you're worth it!
In and For Them,
Chasity
Wednesday, January 8, 2014
Duct Tape and G-Buttons
Wouldn't that be a great name to a TV show? Hmmm, maybe sometime in the future. But for now, let me tell you a story. It involves a sweet little man, his g-button, and the night it almost fell out. Mike was feeding Dominic his dinner of yummy, thick, green puree when he gasped- which by the way is a big no-no in our house. In our house a gasp can mean only three things: #1 your or someone else's trach has come out, #2 you or someone else are blue, or #3 some other unimaginable medical emergency is ensuing, usually involving choking or broken bones. So, naturally, a gasp results in all the adults hearts dropping, adrenaline raising, and one or both of us running ready to resuscitate someone, which may or may not be accompanied by pushing little people in the path out of harms way. A false gasp then earns you a stern "if you're not dying, don't make that sound!" scold. Perhaps we need a little R&R to back us away from the edge of the cliff. But I regress.
As I was saying, Mike gasped, to which sound I immediately attended to what was happening. He was holding his g-button in and told me it was coming out. I didn't quite get it (I was still scanning for purple lips and decannulated trach from that gasp). Again, he told me his button was falling out. So of course I pulled on it to check, because you know, how could I possibly trust this man I've been married to for 11 years who takes care of all of us :/. Sure enough, the balloon that holds it in had busted. Luckily, I had a spare. But then, uh-oh, I remembered I had opened it to use the special tip syringe to re-inflate a g-button a few months ago. And since then, it has gone MIA. This brand new shiny g-button had been made useless by the absence of this magical little special tip syringe that was needed to blow up the balloon that holds it in the tummy. Dang.
So, like any good red-blooded Texans would, we pulled out the Duct tape. Ok, it wasn't actually Duct tape, but it does make for a more fantastical story. It was plain ol' medical tape. But the fact remains we taped the button to his belly. The poor baby had tape all over his little fat, roll-y self. The last thing we needed was for that button to pop out and 200 mls of 'yummy' green goodness to spout out. The next morning, after a few stressful, careful feedings, I picked up the new g-button and
replaced the broken one. I sure wish I would have taken a picture of this, but alas, I did not find the humor in it while it was happening. It's only now I can laugh at the ridiculousness of this crazy life we're in.
Here's to keepin' your buttons in and your face pink ;)
In Them, Chasity
As I was saying, Mike gasped, to which sound I immediately attended to what was happening. He was holding his g-button in and told me it was coming out. I didn't quite get it (I was still scanning for purple lips and decannulated trach from that gasp). Again, he told me his button was falling out. So of course I pulled on it to check, because you know, how could I possibly trust this man I've been married to for 11 years who takes care of all of us :/. Sure enough, the balloon that holds it in had busted. Luckily, I had a spare. But then, uh-oh, I remembered I had opened it to use the special tip syringe to re-inflate a g-button a few months ago. And since then, it has gone MIA. This brand new shiny g-button had been made useless by the absence of this magical little special tip syringe that was needed to blow up the balloon that holds it in the tummy. Dang.
So, like any good red-blooded Texans would, we pulled out the Duct tape. Ok, it wasn't actually Duct tape, but it does make for a more fantastical story. It was plain ol' medical tape. But the fact remains we taped the button to his belly. The poor baby had tape all over his little fat, roll-y self. The last thing we needed was for that button to pop out and 200 mls of 'yummy' green goodness to spout out. The next morning, after a few stressful, careful feedings, I picked up the new g-button and
replaced the broken one. I sure wish I would have taken a picture of this, but alas, I did not find the humor in it while it was happening. It's only now I can laugh at the ridiculousness of this crazy life we're in.
Here's to keepin' your buttons in and your face pink ;)
In Them, Chasity
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