Monday, May 9, 2011
‘All that I am, or hope to be, I owe to my angel Mother’ - Abe Lincoln
Dear Mom,
I don't think any mother is fully appreciated by her daughter until she becomes one herself. This was true for me. I gained such a deeper understanding about who you are when I became a mother myself.
Webster's lists several definitions for mother, but the first one that is universally accepted is: A woman who has given birth to a child.
That is not a mother. That is a pro-creator in my interpretation. There is a second definition, however, that lists it's use as a noun representing a condition that is the inspiration for an activity or situation, such as: "necessity is the mother of invention". Inspiration.. hmm now that hits the nail on the head for what defines a true mother to me.
You are my inspiration. I can't even find a comparison. That is not to say we do not have our personality differences or that our paths always run parallel to eachother, or that there are not many moments when we drive each other nuts.. cause sometimes we do! But you motivate me in ways that no other have or ever will. You make me a better person just for knowing you. This blog actually came to be because I needed a better place to communicate with you this year, overcoming the hurdle of distance and your hearing challenges. I needed to be able to share the raw emotions I had along the way. You are my best friend and in high and low times... that is when you need your best friend.. to share things. Thank you for sharing my life in high and low times, mom.
During what seemed a perfect and adventurous childhood, through very hard years after losing dad, to the journey of your battle and victory over cancer, you have absolutely amazed me. You carried us with all with your optimistic, hopeful spirit. You still do.
I love you more than I can ever tell you. I love that we are different. I love that you challenge me and sometimes even point out my failures and flaws. I love that you bolster my confidence and you embrace and support my decisions. I love that you put my children and their cousins first .. always. Our friendship has been the suprise of my life. God had a plan for the two of us..oil and water at times, yes, but together through thick and thin. Always.
The greatest way in which you amaze and inspire me is in how dynamic you are in adapting to the peaks and valleys of life. You are hardly the same woman I grew up thinking I knew. God had a part in that. He knew there would come a time for you and me.
What I learned most from you over the years is about rising to the occasion. The footprints you have left in the sand have been like breadcrumbs for my own hike into unchartered territory. Thank you for being you... and for loving me. I love you. You are beautiful inside and out.
Amanda
Thursday, May 5, 2011
Elephant in the Room
Yesterday turned out to be a bit taxing for Samuel so we are taking it easy today. After some slower GI motility this week..not much output and with meds not moving out of his stomach very well and then followed by a night of GI pain, Sam had a rough morning yesterday with a big brady incident and now is having some similar GI issues today and so I am trying to keep things calm.. of course as is becoming a common theme.. the nursing company could not come up with staff today so we have layed low and hung around home. He is having a better afternoon so hopefully we avoid any further issues. Here they are in the backyard playing on the swing set. Sam loves his swing but can only handle short periods as he begins to slump over and grow tired.
The fun of yesterday's issues really began Tuesday when meds went in at 6 am but by 10 am he was in discomfort so I vented his feeding tube, which basically means attaching an open syringe to let out the air. I got alot of residual meds coming back out which after that length of time means he is not moving anything on to the intestines for digestion. We now already put all of his feeds in the intestinal port since his stomach has such delays but usually he processes his hourly pedialyte and the meds in his stomach port.
SO that was our first clue. Most of the day he was napping or playing well with some transitionary periods of discomfort. We slowed down the feeds and switch to total pedialyte for a few hours when things were getting too uncomfortable. From time to time his breathing was louder with more "accessory" effort as the nurse put it with the retracting and nasal flaring and sucking in at the neck. But by Wednesday morning he seemed fine when the night nurse left. Sam had occupational therapy at 8 and we started some toy play when she first arrived. As I was showing his therapist how we had set up a more organized system for his fine and gross motor toys, Samuel decided to take a plunge from his balanced sitting position in front of the nurse, hitting head-first onto his little peek-a-boo toy. It probably scared him more than anything as there was a bang with the contact. I look over to see him sharply frozen in a breath-holding episode in the nurse's arms. This is where he stops breathing out of some level of stress. We think it is the trachea collapsing in his moment of wanting to cry out (sam has a weak cry that he uses very little.. crying requires too much effort for his throat and bulbur muscles) and basically getting his airway stuck in the closed position. It could be neurological behavior or it could just flat out be the way he throws a fit as some healthy kids do this too but it looks rather like he is trying to breathe but is obstructed and there is no sounds at all or movement of air.
He had major color change and the therapist seemed like she might jump out of her skin. The nurse did exactly as I would hope and stayed calm and nuzzled him to her chest trying to ease him to take a breath. I really was not worried as I have seen him do this before and always recover but there have been a few times that he fell over the preverbial cliff per se and required resuscitation efforts in the hospital. I have seen this happen to other kids before where they get so upset they kinda hold their breath but usually they recover alot quicker than Sam does at these moments. These are different than his bradycardic spells which come out of nowhere. Well anyways.. it was no biggie in the end and I thought he seemed fine but what I did not think about was that he was already working on more limited energy from a night or two of tossing over the GI stuff and this upset episode may have been just what he needed to bring it all back on.
Within minutes of the head bump incident, Sammy began having the GI pain again and we had to back off of his feed and end his therapy early. I felt he was calming and heading towards a nap so I left him with the nurse as I had scheduled my first hair appt in maybe over a year. I know that is ridiculus as there certainly should have been five minutes to do this but really the year has flown by me. So.. I had been looking forward to it and I thought it would be a relaxing experience.. a chance to have some "normal" time to myself. Well, turned out that was not in the cards..
Within moments of the stylist washing and getting set to cut my hair and just as we got to chatting about our daughters..the cell phone chimes. It was the nurse. It is never good when the first thing they say in a shakey and somewhat panic-sounding tone is "Now I don't want to upset you.. don't panic.. but we had some problems." She went on to explain that Sammy decided to have a big episode with his heart rate dropping from 130s to 30 in about no time flat. She thought he would recover from this right away as he sometimes drops heart rates and goes right back up but this time his sats dropped behind it and stayed down in low 70s so she intervened with oxygen and he eventually came back up to safe levels. I know this happens and some of the episodes are far more concerning that others but of course then it was hard for me to relax and let the stylist cut my hair because I felt so jumpy and nervous and, basically, a worried mess.
I checked back in later and he was fine but I never feel completely relaxed that I won't leave for an hour and never see my precious boy again. I lost my dad in that most horribly shocking way and with Sam it is actually somewhat expected that he will do life threatening behavior on occasion, although almost always self corrected, and more rarely requiring medical intervention. This is the hardest part of life as we know it now.
I can handle the tubes and countless medications and how to handle it when random people ask me "What is.. wrong with him?" and how to answer it without saying something like.."his brain is dysfunctioning and he has multi system issues". I could just say mitochondrial disease except that #1 noone knows what that means and #2 we think that is probably secondary dyfunction to neuro deficits or a hypoxic chain reaction that took place in pregnancy/ at birth due to the nature of certain events and the fact that no genetic connection has been identified. I have learned to now say something like.."He is medically complex" or "he has neuro muscular and nervous system challenges".
I have even learned to accept the concept that God did not make his life this way but he has made it so his journey, although different and far more difficult.. is special, meaningful and unique for all that he is doing to shape our lives and those around us. The girls seemed to have adapted to this as well.
I have learned that I can't always take the pain away and I am no longer asking God why Sam has to endure it.. because in some ways I know the answer is that the why rests in all that Sam has done to witness to others and change our own lives, values and beliefs. The biggest area where I am still struggling is in what yesterday and everyday further instills within me..pure and basic fear. I tell myself all the time that this is our new normal, there is no room for fear, and that his "misbehaving moments" as we have tried to call them in a light manner around the girls have become somewhat expected even though they comes on unexpectedly. I try to convince away my worst fears. I pray about them and try to find some peace. Those reading are probably done already with reading about my search for peace. Some days I think I have found it.. other days, not so much.
People who pray for Sam search me out for reassurance that he will be o.k... that he will (as they put it so often) "grow out of this". They need me to convince them of that when I can hardly convince myself. I love my family and friends. They want to believe like we do that this is just one small phase of his life and that I am strong enough to deal with it. They seem to believe in me far beyond what I can believe of myself. I am not going the other way and giving up in anyway.. but I have this layer of fear. I think I could live with working through these physical disabilities or challenges but will we have endurance to go years and years of constantly being on extreme alert about cardiac arrest? I type those very real concerns as that blessed baby in the room across from me is making the sweetest babbling sounds as he wakes from his tender afternoon nap. Yet..the first thought that entered my mind was.. so thankful, he woke up. He is safe and here with us. Always a corner of my mind can't help but go there.
How do I not look at him and think he might be gone if I blink? How do I walk out the door without him and not intensely feel dark thoughts that he could go through horrible events while I am gone when I know it has happened. Of course you say.. any of us could be gone at any time... but let's not weigh out the chances of that or I fear I will grow more neurotic about it.
It may come as a suprise, but my fears actually don't rest on who is caring for Sam. I feel most every person we have entrusted to care for him would never disappoint me in how they would handle his challenging health needs as honestly my expectations are just that they would do what all humans should do for eachother.. their absolute best and with a caring heart. We had NO preperation or special skill when God placed this child in our life but we have given him everything we have as all parents should with any of their children. Wouldn't most people have the same instinct.
I do expect people caring for him to be humane and professional but most of all.. to give him their best efforts and concern. None of us are God and may not be able to handle everything that arises.. some are more equipped than others but I expect that they do their best above all else and my faith in the human spirit is that most would. Unfortunately there were a few particular parties at the start of Sam's journey who we know did not do that or even care to try. I try not to focus on why. But I think that kind of negligence and disregard is rare as most everyone who has come into his path has given him their extensive kindness, humane concern, their utmost efforts to do their best and even when he mystified and escaped their understanding..they were as diligent as loving parents in helping him. The rest is up to God. That is where I need to let go of the fear and place my trust.
It is hard to believe that this beautiful child of God (exceptionally so..in my biased motherly opinon) is so very vulnerable. I sometimes think it would help me if the evidence of my fears were not the invisible elephant in the room. I love that song lyric "I'm pushing an elephant up the stairs.." Clearly it makes everything more difficult, breaks our hearts over and over and sometimes just sleeps in the corner but is always there and almost a tease in that just when you have started to forget.. it disrupts everything.
I see so many others going through this same type of journey and far worse situations. I think we are all in the same realm in one aspect.. we are just parents with boundless love and concern for our innocent children. Some seem to have found more peace and less fear over time. I see God in those people.
So I pray that I get better at facing each day with less fear, anger or disbelief. If I could change things I would do anything. I know my fears are selfish and won't help the problem but it is not so easy to learn how to let go of those honest thoughts. There is alot of God's light shed in our baby boy's life too and hopefully with time I can set aside my fears completely.
The fun of yesterday's issues really began Tuesday when meds went in at 6 am but by 10 am he was in discomfort so I vented his feeding tube, which basically means attaching an open syringe to let out the air. I got alot of residual meds coming back out which after that length of time means he is not moving anything on to the intestines for digestion. We now already put all of his feeds in the intestinal port since his stomach has such delays but usually he processes his hourly pedialyte and the meds in his stomach port.
SO that was our first clue. Most of the day he was napping or playing well with some transitionary periods of discomfort. We slowed down the feeds and switch to total pedialyte for a few hours when things were getting too uncomfortable. From time to time his breathing was louder with more "accessory" effort as the nurse put it with the retracting and nasal flaring and sucking in at the neck. But by Wednesday morning he seemed fine when the night nurse left. Sam had occupational therapy at 8 and we started some toy play when she first arrived. As I was showing his therapist how we had set up a more organized system for his fine and gross motor toys, Samuel decided to take a plunge from his balanced sitting position in front of the nurse, hitting head-first onto his little peek-a-boo toy. It probably scared him more than anything as there was a bang with the contact. I look over to see him sharply frozen in a breath-holding episode in the nurse's arms. This is where he stops breathing out of some level of stress. We think it is the trachea collapsing in his moment of wanting to cry out (sam has a weak cry that he uses very little.. crying requires too much effort for his throat and bulbur muscles) and basically getting his airway stuck in the closed position. It could be neurological behavior or it could just flat out be the way he throws a fit as some healthy kids do this too but it looks rather like he is trying to breathe but is obstructed and there is no sounds at all or movement of air.
He had major color change and the therapist seemed like she might jump out of her skin. The nurse did exactly as I would hope and stayed calm and nuzzled him to her chest trying to ease him to take a breath. I really was not worried as I have seen him do this before and always recover but there have been a few times that he fell over the preverbial cliff per se and required resuscitation efforts in the hospital. I have seen this happen to other kids before where they get so upset they kinda hold their breath but usually they recover alot quicker than Sam does at these moments. These are different than his bradycardic spells which come out of nowhere. Well anyways.. it was no biggie in the end and I thought he seemed fine but what I did not think about was that he was already working on more limited energy from a night or two of tossing over the GI stuff and this upset episode may have been just what he needed to bring it all back on.
Within minutes of the head bump incident, Sammy began having the GI pain again and we had to back off of his feed and end his therapy early. I felt he was calming and heading towards a nap so I left him with the nurse as I had scheduled my first hair appt in maybe over a year. I know that is ridiculus as there certainly should have been five minutes to do this but really the year has flown by me. So.. I had been looking forward to it and I thought it would be a relaxing experience.. a chance to have some "normal" time to myself. Well, turned out that was not in the cards..
Within moments of the stylist washing and getting set to cut my hair and just as we got to chatting about our daughters..the cell phone chimes. It was the nurse. It is never good when the first thing they say in a shakey and somewhat panic-sounding tone is "Now I don't want to upset you.. don't panic.. but we had some problems." She went on to explain that Sammy decided to have a big episode with his heart rate dropping from 130s to 30 in about no time flat. She thought he would recover from this right away as he sometimes drops heart rates and goes right back up but this time his sats dropped behind it and stayed down in low 70s so she intervened with oxygen and he eventually came back up to safe levels. I know this happens and some of the episodes are far more concerning that others but of course then it was hard for me to relax and let the stylist cut my hair because I felt so jumpy and nervous and, basically, a worried mess.
I checked back in later and he was fine but I never feel completely relaxed that I won't leave for an hour and never see my precious boy again. I lost my dad in that most horribly shocking way and with Sam it is actually somewhat expected that he will do life threatening behavior on occasion, although almost always self corrected, and more rarely requiring medical intervention. This is the hardest part of life as we know it now.
I can handle the tubes and countless medications and how to handle it when random people ask me "What is.. wrong with him?" and how to answer it without saying something like.."his brain is dysfunctioning and he has multi system issues". I could just say mitochondrial disease except that #1 noone knows what that means and #2 we think that is probably secondary dyfunction to neuro deficits or a hypoxic chain reaction that took place in pregnancy/ at birth due to the nature of certain events and the fact that no genetic connection has been identified. I have learned to now say something like.."He is medically complex" or "he has neuro muscular and nervous system challenges".
I have even learned to accept the concept that God did not make his life this way but he has made it so his journey, although different and far more difficult.. is special, meaningful and unique for all that he is doing to shape our lives and those around us. The girls seemed to have adapted to this as well.
I have learned that I can't always take the pain away and I am no longer asking God why Sam has to endure it.. because in some ways I know the answer is that the why rests in all that Sam has done to witness to others and change our own lives, values and beliefs. The biggest area where I am still struggling is in what yesterday and everyday further instills within me..pure and basic fear. I tell myself all the time that this is our new normal, there is no room for fear, and that his "misbehaving moments" as we have tried to call them in a light manner around the girls have become somewhat expected even though they comes on unexpectedly. I try to convince away my worst fears. I pray about them and try to find some peace. Those reading are probably done already with reading about my search for peace. Some days I think I have found it.. other days, not so much.
People who pray for Sam search me out for reassurance that he will be o.k... that he will (as they put it so often) "grow out of this". They need me to convince them of that when I can hardly convince myself. I love my family and friends. They want to believe like we do that this is just one small phase of his life and that I am strong enough to deal with it. They seem to believe in me far beyond what I can believe of myself. I am not going the other way and giving up in anyway.. but I have this layer of fear. I think I could live with working through these physical disabilities or challenges but will we have endurance to go years and years of constantly being on extreme alert about cardiac arrest? I type those very real concerns as that blessed baby in the room across from me is making the sweetest babbling sounds as he wakes from his tender afternoon nap. Yet..the first thought that entered my mind was.. so thankful, he woke up. He is safe and here with us. Always a corner of my mind can't help but go there.
How do I not look at him and think he might be gone if I blink? How do I walk out the door without him and not intensely feel dark thoughts that he could go through horrible events while I am gone when I know it has happened. Of course you say.. any of us could be gone at any time... but let's not weigh out the chances of that or I fear I will grow more neurotic about it.
It may come as a suprise, but my fears actually don't rest on who is caring for Sam. I feel most every person we have entrusted to care for him would never disappoint me in how they would handle his challenging health needs as honestly my expectations are just that they would do what all humans should do for eachother.. their absolute best and with a caring heart. We had NO preperation or special skill when God placed this child in our life but we have given him everything we have as all parents should with any of their children. Wouldn't most people have the same instinct.
I do expect people caring for him to be humane and professional but most of all.. to give him their best efforts and concern. None of us are God and may not be able to handle everything that arises.. some are more equipped than others but I expect that they do their best above all else and my faith in the human spirit is that most would. Unfortunately there were a few particular parties at the start of Sam's journey who we know did not do that or even care to try. I try not to focus on why. But I think that kind of negligence and disregard is rare as most everyone who has come into his path has given him their extensive kindness, humane concern, their utmost efforts to do their best and even when he mystified and escaped their understanding..they were as diligent as loving parents in helping him. The rest is up to God. That is where I need to let go of the fear and place my trust.
It is hard to believe that this beautiful child of God (exceptionally so..in my biased motherly opinon) is so very vulnerable. I sometimes think it would help me if the evidence of my fears were not the invisible elephant in the room. I love that song lyric "I'm pushing an elephant up the stairs.." Clearly it makes everything more difficult, breaks our hearts over and over and sometimes just sleeps in the corner but is always there and almost a tease in that just when you have started to forget.. it disrupts everything.
I see so many others going through this same type of journey and far worse situations. I think we are all in the same realm in one aspect.. we are just parents with boundless love and concern for our innocent children. Some seem to have found more peace and less fear over time. I see God in those people.
So I pray that I get better at facing each day with less fear, anger or disbelief. If I could change things I would do anything. I know my fears are selfish and won't help the problem but it is not so easy to learn how to let go of those honest thoughts. There is alot of God's light shed in our baby boy's life too and hopefully with time I can set aside my fears completely.
Tuesday, May 3, 2011
Cross It Off
There is something magical about crossing something off the never-ending to-do list. I absolutely love it! I have even been known to add an item to a to-do list or create a whole new list just to mark off the things I already accomplished for the day. Yes, I am neurotic that way. Today, I organized my pantry and kitchen cabinets, leaving me with a feeling of accomplishment. We did not have the nurse today so Sam hung out in the same room and slept off some tummy trouble and my mom had come over to visit with Sofie and although I should have been working on stuff for Jason.. I just needed to cross this off my list. It felt good. His stuff is on the list too and maybe with a more organized house, I will be better able to focus once I get to those tasks tomorrow.
As I worked on clearing out I thought about the families who were hit with the tornado storms this past week. We were blessed that all the family I have up there made it through in Tuscaloosa and north Alabama but my grandmother's good friend was killed and many homes were lost on the very street where my mother grew up. I thought about how blessed I am that my to-do for the day was to clear out the clutter of my pantry.. and not to clear through the rubble of a lost home. I pray for those families. It is sad that it takes a tragic event for us to look at our annoying list of to-dos as actually a sign of the things we are blessed with.. a home to clean, a job to do, a family that needs us, and the ability to accomplish what we need to in any given day.
I flashed back to memories of past hurricanes that hit our area over the years and how hard it was going through the homes of family and friends, their lives reduced to broken, soggy furniture and photos floating in the slush of muddy water. Ever since the first storm I experienced as a teen, I have appreciated that the objects of our lives hold little value and are easily taken away. I remember hearing my dad ask us to pack what would fit in one suitcase right before we tried to flee our home during hurricane Opal, only to find the roads crammed with traffic, and we had to resolve ourselves that we would be able to ride it out under the dining room table. I remember walking into my best friend's bedroom to a huge bouie that had floated in from the bay and although the house was virtually wiped of all furniture and prized possesions, her clothes still hung in the closets, half deep in mud. The images of this most recent set of storms just north of us has clearly left the same destructive path in it's wake. I pray they find new hope for rebuilding their lives. I have pulled some things from our pantry and am hoping the girls will appreciate an opportunity to donate them to one of the groups reaching out to those areas. I feel bad that this is such a small thing and that there is not more I can be doing right now. I feel bad that it felt so good to get things organized under my roof when so many are just hoping to have a roof over their heads this week.
Life is so unpredicatable and it is hard to see that at any moment any of us could be hanging on for dear life to whatever it is we hold precious. I think right now the weight holding me anchored in the storm is my little to-do list of unimportant projects that with time can be crossed off. It is reassuring that in times of uncertainty I can exert some control over that list... if I don't get bogged down in defeatism emotions from seeing the sheer volume of things that have been on there for what seems like forever.
I hope that Sam will reach all the long term goals I have for his life, as well as, finalizing some of the endless answer-seeking missions but in the meantime, he continues to tap away at a wide variety of more attainable "projects", each of which will build upon eachother and dramatically shape his future and overall growth. I will do my part to cross them off one at a time, always adding new ones in their place. That is the beauty of the endless to-do list.. there will always be something new to push us forward.
Saturday, April 30, 2011
The Narrow Gate
I attended my MOPS (mothers of preschoolers) group meeting this week, which has been somewhat rare for me this year. It was a hectic morning with getting both girls fed, dressed and out the door, training a new nurse, tracking down a tardy physical therapist, securing food for the potluck meeting, ordering meds to refill, and then getting broadsided by a phone call from Jason to say that my child is the only munchkin in the her class whole school in full uniform on a spirit shirt casual day... ugg..all by 8 am.. so after packing up change of clothes for her, stopping by at the meeting to secure someone to help with my check-in duty at the meeting and then getting across town to my daughter's school with the new clothes.. I finally made it into my seat at MOPS, over an hour late to the meeting. I hated the breakneck feel of that morning.
I marvel that for 2 years before everything got intense with Sam's arrival last spring, I somehow lived and breathed the details of co-coordinating this group of women along side a girlfriend. It was possible to accomplish because it was something that fed our spirit. We would wrestle numerous plates of food, bags of projects, wrangle up volunteers, decorate and plan themes and speakers, organize outings and service projects etc....and after the meeting we would feel a rush of joy that we reached other moms. The rest of my life was crammed with everything we all do as moms each day. I worked from home and attended social stuff on weekends, hosted or attended book clubs, worked out at the gym and helped with church activities as well as singing in my church choir. At times I was stretched to the max but as the pursuits seemed worthy I just charged forward. I am not that girl anymore. I can't handle a juggling act anymore. Strike that... Not that type of juggling act anymore. I have had to make choices. I now juggle Sam's medicines, 12 specialists and all the various dr appts, hospitalizations, daily therapies, insurance, alarms, interventions, nurses, feeding pumps, worries that the sky is falling, meals and bills and normal junk, little girls (enough said), and one very understanding husband. But.. those things are in a far more narrow field of focus.
My energy is not as divided to external forces. I do yearn to be more involved in my daughter's school and rejoin my choir and maybe one day hold another leadership position, but overall I am keeping my eyes on what best serves God and our family.
It is hard now-a-days to miss the recent trend of many modern moms juggling insane schedules of family and personal commitments, feeling obligated to the "hurried" lifestyle. They feel compelled to say yes to everything or to all the wrong things, often at the detriment of their children and marriages. I can't believe how many moms put going out in the evening throughout the week at the top of the priority list or spend hours at the gym and 10 minutes on homework. Learning to say no is a very important skill that every mother should learn, especially that of saying no to our own selfish wishes for certain freedoms of our past pursuits. We have to put the brakes on life in the fast lane. We should focus on the most important commitment handed down to us..our roles as wives and mothers. If we fragment that time with too many alternate pursuits, even the healthier variety.. we will be just that.. fragmented and spread too thin. Here is a line of scripture that spoke to me of this important choice. It really requires purposeful discipline of which I am still at work myself.
Enter through the narrow gate; for wide is the gate and spacious and broad is the way that leads away to destruction, and many are those who are entering through it. But the gate is narrow (contracted by pressure) and the way is straitened and compressed that leads away to life, and few are those who find it. Matthew 7:13-14
Tonight I pray for 2 moms that come to my mind battling the need to make good choices about where their attention should fall from hour to hour. I pray they see the good they can acheive in just creating a calmer life. I pray we all acheive a calmer life by choosing a more narrow path.
News on Sam today: He gained even more weight on the new regime of adding hourly supplemented pedialyte and fatty oil to his already beefed up caloric continuous feeds.. He is now 17 lbs 5 oz and his Dr seemed encouraged at this rate we may actually get back on some kind of growth curve!!! Also he has used the hand sign for daddy several times in the last 24 hours which is quite interesting as we just introduced the sign language over the last couple weeks. I think this may be a way he can better communicate with us until he is better able to access oromotor skills. Sam does not make many sounds beyond dadda but his therapists thinks much of this could be due to the neuromuscular and airway challenges he faces..we expect them to grow with time.
I marvel that for 2 years before everything got intense with Sam's arrival last spring, I somehow lived and breathed the details of co-coordinating this group of women along side a girlfriend. It was possible to accomplish because it was something that fed our spirit. We would wrestle numerous plates of food, bags of projects, wrangle up volunteers, decorate and plan themes and speakers, organize outings and service projects etc....and after the meeting we would feel a rush of joy that we reached other moms. The rest of my life was crammed with everything we all do as moms each day. I worked from home and attended social stuff on weekends, hosted or attended book clubs, worked out at the gym and helped with church activities as well as singing in my church choir. At times I was stretched to the max but as the pursuits seemed worthy I just charged forward. I am not that girl anymore. I can't handle a juggling act anymore. Strike that... Not that type of juggling act anymore. I have had to make choices. I now juggle Sam's medicines, 12 specialists and all the various dr appts, hospitalizations, daily therapies, insurance, alarms, interventions, nurses, feeding pumps, worries that the sky is falling, meals and bills and normal junk, little girls (enough said), and one very understanding husband. But.. those things are in a far more narrow field of focus.
My energy is not as divided to external forces. I do yearn to be more involved in my daughter's school and rejoin my choir and maybe one day hold another leadership position, but overall I am keeping my eyes on what best serves God and our family.
It is hard now-a-days to miss the recent trend of many modern moms juggling insane schedules of family and personal commitments, feeling obligated to the "hurried" lifestyle. They feel compelled to say yes to everything or to all the wrong things, often at the detriment of their children and marriages. I can't believe how many moms put going out in the evening throughout the week at the top of the priority list or spend hours at the gym and 10 minutes on homework. Learning to say no is a very important skill that every mother should learn, especially that of saying no to our own selfish wishes for certain freedoms of our past pursuits. We have to put the brakes on life in the fast lane. We should focus on the most important commitment handed down to us..our roles as wives and mothers. If we fragment that time with too many alternate pursuits, even the healthier variety.. we will be just that.. fragmented and spread too thin. Here is a line of scripture that spoke to me of this important choice. It really requires purposeful discipline of which I am still at work myself.
Enter through the narrow gate; for wide is the gate and spacious and broad is the way that leads away to destruction, and many are those who are entering through it. But the gate is narrow (contracted by pressure) and the way is straitened and compressed that leads away to life, and few are those who find it. Matthew 7:13-14
Tonight I pray for 2 moms that come to my mind battling the need to make good choices about where their attention should fall from hour to hour. I pray they see the good they can acheive in just creating a calmer life. I pray we all acheive a calmer life by choosing a more narrow path.
News on Sam today: He gained even more weight on the new regime of adding hourly supplemented pedialyte and fatty oil to his already beefed up caloric continuous feeds.. He is now 17 lbs 5 oz and his Dr seemed encouraged at this rate we may actually get back on some kind of growth curve!!! Also he has used the hand sign for daddy several times in the last 24 hours which is quite interesting as we just introduced the sign language over the last couple weeks. I think this may be a way he can better communicate with us until he is better able to access oromotor skills. Sam does not make many sounds beyond dadda but his therapists thinks much of this could be due to the neuromuscular and airway challenges he faces..we expect them to grow with time.
Friday, April 29, 2011
Easter
Here are quick pictures from the weekend of Easter activities. We did not really do any formal Easter family pictures because it was already a jamm- packed weekend but I did catch a couple cute candid shots of the kids enjoying the beautiful weather. They had a great time and I think they still seemed to soak up the meaning of this very special Christian celebration.
On Saturday, our church held a Resurrection Celebration for children. Our girls sang with the wee one's choir and enjoyed an Easter egg hunt as well as many fun activities.
Easter morning at home with the baskets before going to church..
Egg Hunting at the grandparent's house with a cousin along with relaxing on the back porch...can't ask for a more easy going afternoon.
It was such a lovely day..
Overall, a very memorable and meaningful Easter.
Thursday, April 28, 2011
Good Friday
"Good" and "Bad" are words we use excessively in raising our children.. often without realizing the way that can form their opinions about things being strictly one way or the complete opposite. The fact that although things may on the surface seem quite painful or sad, they may actually be "good" for us is something we learn with years of experience.
As a child I found it odd that the Friday before Easter was referred to as "Good Friday" when I did not understand how anything as sad and painful as Jesus being nailed to the cross could ever be considered "good". On this day, we reflect so deeply about all the horrible pain and persecution Jesus bore for all of us, sacrificing his life on the cross and forever changing our lives. We sometimes forget to explain, however, to our children the important message that good outcomes sometimes require facing challenges, pain and sacrifice. God would never have intentionally allowed his only son to experience such a horrible plight had it not been for how much "good" to all mankind would come with Christianity and living a life that glorifys Him.
I talked to Bella and Sofia about this because they didn't really understand it. I explained how it was important for people to witness Jesus' good and miraculous acts like healing the blind and feeding the poor, they also needed to hear the less welcome messages he was bringing to them from God about what was wrong with their actions... the cold, hard truth, if you will. Future generations needed to absorb the actions of the politically motivated leaders and the mob on that horribly painful day and realize what it means to be a Christian now.
The symbolism of that day (over 2000 years ago) unveiled the good and bad in all of us and most of all, he rose from the dead and lived..and forgave us giving us all the hope of everlasting life. So when I think of all that we celebrate during Easter week, I am quite humbled by the "good" of this horribly wrong time in the life of Jesus.
On a personal level, this weekend brings much emotion to our home as we think back to last year and Sam having spent his first Easter with us, only to be ambulanced to Sacred Heart two days later after his respiratory and heart rate symptoms became quite serious at home. I actually started putting together a video of the pictures of those days and had to take a break as it was just too raw. It was not the kind of first Easter I would have wished for as what was supposed to be a time of homecoming from a week in the NICU. The kids were hunting eggs and happy to be new big sisters, meanwhile, I was sick with worry over the fragile little man in my arms. Here were some pics from Easter 2010.
This year will be different as he turned the corner Tuesday night and seems to be almost back to baseline right now. Since Saturday, he had 2 antibiotic shots and 4 Dr. appts and lots and lots of fluid and rest. He has been on about 1 oz of pedialyte per hour on top of his 19 hour continuous feeds of 24 cal formula. We just lowered to half the fluids after they saw him start to improve and gain some weight again. He had lost nearly all of the weight that we had been so proud of gaining after starting the MCT oil 2 weeks ago. But fortunately we gained it back with the addition of all that fluid. He is a walking water balloon now. Kidneys are doing good turning out lots of wet diapers and we are even keeping a somewhat more normal schedule on the #2s. Oh the glory in counting those!
Here are pictures of Sam feeling good and playful. He is doing well now at holding things up above his body, against the weight of gravity. Making much progress. We are awaiting a bath chair and activity chair to help with better positioning.
Tomorrow should be busy with a resurrection celebration at our church and the girls singing in the wee ones choir. I am also looking forward to a visit with some friends in town visiting. We had the great pleasure of a quick visit with another family of friends on wednesday afternoon when Sam seemed ready for some fresh air. Here are a few pics I grabbed off her blog..the boys had a great time interacting.
Later that night we had a fundraisers party for the ronald mcdonald house and it was a nice outing. I was worried about it taxing him after such a hard week but he seemed to love the breeze and the people watching. He is so quiet and good in his little stroller seat, all the while his sisters were running around like hooligans with all their buddies.
He did get to meet Ronald McDonald himself but I think the character was a bit nervous about holding him carefully. Sam wasn't scared in the least, cooing at the clownish man. I think the character scared me a little though (flashbacks to the movie IT.. yikes!). I was really glad we could support a cause that meant so much to us. I hope to do even more for them over time. It was such an easy fundraiser and each shirt meant a night in the RMH for a family of a child in the hospital.
I recently met with several new nurses who may become our permanent week day coverage and they seem very capable. We have had some other interesting encounters in this process. I won't get started on the smoking fiascos and learning some nurses have siblings serving hard time. We are learning to be clear about what we need for his health and also feeling comfortable trusting someone in their care. We had a day of new frustration when we found out the nursing company (who had suspended service way back in January because they said insurance would only cover 60 hours a year) had just discovered that we had actually 60 - 8 hr visits per year..so basically we could have been covered through much of the hard winter months of illness in January through March. I was frustrated but it is water under the bridge now.
It has been slow getting things rolling and we only had the nursing a few days this week due to staffing issues but hopefully we work out all the kinks soon. I look forward to getting into a more organized routine and can help support Jason's office with administrative and marketing tasks. Having some aid here has already been a huge blessing. Thank you, Lord, for a few extra loving hands.
Speaking of hands.. Sofie and I enjoyed some girl time and she experienced her first manicure. I have always been a little strict about the no polish on little girls rule handed down quite literally from my Dad's rules for me and my sisters. Well, it was fun.. a little touch of pink never hurt any girl!
As a child I found it odd that the Friday before Easter was referred to as "Good Friday" when I did not understand how anything as sad and painful as Jesus being nailed to the cross could ever be considered "good". On this day, we reflect so deeply about all the horrible pain and persecution Jesus bore for all of us, sacrificing his life on the cross and forever changing our lives. We sometimes forget to explain, however, to our children the important message that good outcomes sometimes require facing challenges, pain and sacrifice. God would never have intentionally allowed his only son to experience such a horrible plight had it not been for how much "good" to all mankind would come with Christianity and living a life that glorifys Him.
I talked to Bella and Sofia about this because they didn't really understand it. I explained how it was important for people to witness Jesus' good and miraculous acts like healing the blind and feeding the poor, they also needed to hear the less welcome messages he was bringing to them from God about what was wrong with their actions... the cold, hard truth, if you will. Future generations needed to absorb the actions of the politically motivated leaders and the mob on that horribly painful day and realize what it means to be a Christian now.
The symbolism of that day (over 2000 years ago) unveiled the good and bad in all of us and most of all, he rose from the dead and lived..and forgave us giving us all the hope of everlasting life. So when I think of all that we celebrate during Easter week, I am quite humbled by the "good" of this horribly wrong time in the life of Jesus.
On a personal level, this weekend brings much emotion to our home as we think back to last year and Sam having spent his first Easter with us, only to be ambulanced to Sacred Heart two days later after his respiratory and heart rate symptoms became quite serious at home. I actually started putting together a video of the pictures of those days and had to take a break as it was just too raw. It was not the kind of first Easter I would have wished for as what was supposed to be a time of homecoming from a week in the NICU. The kids were hunting eggs and happy to be new big sisters, meanwhile, I was sick with worry over the fragile little man in my arms. Here were some pics from Easter 2010.
This year will be different as he turned the corner Tuesday night and seems to be almost back to baseline right now. Since Saturday, he had 2 antibiotic shots and 4 Dr. appts and lots and lots of fluid and rest. He has been on about 1 oz of pedialyte per hour on top of his 19 hour continuous feeds of 24 cal formula. We just lowered to half the fluids after they saw him start to improve and gain some weight again. He had lost nearly all of the weight that we had been so proud of gaining after starting the MCT oil 2 weeks ago. But fortunately we gained it back with the addition of all that fluid. He is a walking water balloon now. Kidneys are doing good turning out lots of wet diapers and we are even keeping a somewhat more normal schedule on the #2s. Oh the glory in counting those!
Here are pictures of Sam feeling good and playful. He is doing well now at holding things up above his body, against the weight of gravity. Making much progress. We are awaiting a bath chair and activity chair to help with better positioning.
Tomorrow should be busy with a resurrection celebration at our church and the girls singing in the wee ones choir. I am also looking forward to a visit with some friends in town visiting. We had the great pleasure of a quick visit with another family of friends on wednesday afternoon when Sam seemed ready for some fresh air. Here are a few pics I grabbed off her blog..the boys had a great time interacting.
Later that night we had a fundraisers party for the ronald mcdonald house and it was a nice outing. I was worried about it taxing him after such a hard week but he seemed to love the breeze and the people watching. He is so quiet and good in his little stroller seat, all the while his sisters were running around like hooligans with all their buddies.
He did get to meet Ronald McDonald himself but I think the character was a bit nervous about holding him carefully. Sam wasn't scared in the least, cooing at the clownish man. I think the character scared me a little though (flashbacks to the movie IT.. yikes!). I was really glad we could support a cause that meant so much to us. I hope to do even more for them over time. It was such an easy fundraiser and each shirt meant a night in the RMH for a family of a child in the hospital.
I recently met with several new nurses who may become our permanent week day coverage and they seem very capable. We have had some other interesting encounters in this process. I won't get started on the smoking fiascos and learning some nurses have siblings serving hard time. We are learning to be clear about what we need for his health and also feeling comfortable trusting someone in their care. We had a day of new frustration when we found out the nursing company (who had suspended service way back in January because they said insurance would only cover 60 hours a year) had just discovered that we had actually 60 - 8 hr visits per year..so basically we could have been covered through much of the hard winter months of illness in January through March. I was frustrated but it is water under the bridge now.
It has been slow getting things rolling and we only had the nursing a few days this week due to staffing issues but hopefully we work out all the kinks soon. I look forward to getting into a more organized routine and can help support Jason's office with administrative and marketing tasks. Having some aid here has already been a huge blessing. Thank you, Lord, for a few extra loving hands.
Speaking of hands.. Sofie and I enjoyed some girl time and she experienced her first manicure. I have always been a little strict about the no polish on little girls rule handed down quite literally from my Dad's rules for me and my sisters. Well, it was fun.. a little touch of pink never hurt any girl!
Wednesday, April 20, 2011
Message in the Sand
The local section of our daily newspaper ran a story today entitled:
Message in the Sand. The piece described incredibly artistic sand sculptures under development this week on our local beaches. Below are pictures from the Daily News by Nick Tomecek from a piece on fighting back against oil companies with peaceful protest and Mark Kulaw's picture of them working on the sculpture.
Showing the immeasurable beauty and diverse pursuits available to visitors of our fine fishing village turned fashionable vacation destination, the main focus of the project was on making the statement about how we have clearly come so far since the devastating BP oil spill that brought our local economy to it's knees this same time last year, leaving so many out of work and crumbling long time profitable businesses. A shock to our economy and an even bigger shock to us that what drew us all to settle here and value the area might be so easily jeopardized...and not by the hurricanes we usually work so hard to prepare for. The hurricanes were hard enough to deal with but we never prepared for this. The clean-up and restoration efforts made to return our snow white beaches and emerald waters to their immaculate and ephemeral state are quite obvious to the locals, renewing in us a more appreciative and protective attitude towards the incredibly beautiful place we call home. In this story, I could not help but find parallels to my own family's journey this year.
I remember hearing the news of the oil spill and although it was all over the television and noone could speak of anything else, I had too much "else" to think of at the time. I was sitting in a chair in the ICU by my 1 month old son's bedside, after what had been the hardest month of my life. That morning they had approached us about placing a G tube in our baby to feed him. They also planned to wrap his stomach around his esophagus to prevent reflux, of which he had never experienced. They told us they felt his diagnosis and the source of his symptoms was encephalopathy, a very vague term that basically meant brain dysfunction of some unknown origin, hypoxic event or disease or deficit. I was a crumbling mess.
This broken mess we were surrounded with was not unlike what had happened to our region after the BP explosion spontaneously caused massive damage with 100s of thousands of gallons of oil gushing into our prized Gulf waters and stealing the life blood of so many.
At that same time, Sam was my life blood.. my little angel hanging on in a storm of horrible events. I could not find it in me to even begin to grasp how much our lives changed in those moments after his birth. But God knew that as his children, we would eventually experience dramatic change of some form or another and, yes, pain but also hope and ultimately.. renewed life. And nothing could be truer. I am not the same mother I was in that cold hospital room, dealing with utter disbelief and weakness. I was the "why me" that I never wanted to be. But you have to be broken to be built anew and like the beautiful coastline and the wildlife that is struggling to return stronger this summer, we will overcome these unexpected and disastrous changes. We will be stronger for it and we will have stronger faith about what really matters in our lives.
In our community there were many people who have lived 2 miles from the beach for years but never really walked across the street to admire the beauty of crashing waves or to hike along the bayou and see gators basking in the sun.. it was just part of the background..taken for granted. Well, now they are sinking their toes in the sand. I hear it everyday. They are reclaiming the warm feelings of what brought them here or (as is the case with many military retirees) what made them stay.
I am not yet fully able to appreciate the whole meaning of Sam's journey but I do know it has changed my family and we are so much more appreciative of the gifts God grants us each day. The next step is finding a way to process some of the underlying unanswered questions and anger. It is buried so deep and yet, ever present in my mind. The "whys" and "what-ifs" could drive a person insane. So I park them in a closet and in my prayers I try not to ask God questions that won't heal Samuel or my family.
Our gulfcoast community is also still dealing with this raw emotion of anger as evidenced by the near daily articles about the wildlife damage left unchecked and although there are no tar balls or visible evidence of the muck and oil on our beaches or in the water..the muck is still hitting our pocketbooks and causing anguish as people try to feed their families. The anger is visible in the words of those navigating the complicated, slow BP claims process and then there are the frustrations over who is responsible for our lost wildlife or who will make sure it never happens again. Some of this will just have to work out in time. And that is the message in the sand for me today. We must give God some time to bring the shores up and rinse everything clean.
Create in me a clean heart, O God; and renew a right spirit within me.
Psalm 51:10
Status on Samuel: He is still having problems relating to the latest illness but in some ways seems to be turning a corner for the better. He had 2 shots of antibiotics and his ears seem to be clearing but the GI issues persist and he is very dehydrated despite the large volumes of fluids and continuous feeds he is receiving. Praying for relief from the abdominal pain and less periods of respiratory distress. Hoping tomorrow he might be ready to get some fresh air after this rough week spent mainly in his crib.
Subscribe to:
Posts (Atom)

























