Happy Birthday Grandma Lora!!!
Tuesday, April 29, 2008
Tuesday, April 22, 2008
Grandma's Amazing Weekend in Omaha
I hardly know where to start, in order to describe my amazing weekend in Omaha with Baby Collin and his parents. I suppose, like any good story, starting "at the beginning" makes sense!
Early last week, as I lamented to Grandpa Nastase that I had not seen my only grandson and his parents since AUGUST, he calmly suggested I look up ticket prices. If I could find an inexpensive flight to Omaha on an "off work" Friday for him, he would take the following Monday off and I could go to Omaha. Woo to the hoo!!! I quickly found tickets (flying out that Thursday night), made sure that Erin and Matty didn't have any plans...then bought those suckers! ha ha
I flew in late on Thursday night, after Collin was already in bed. I got to the apt. around 11, so Erin and I just sat up and talked. I did peek in on that gorgeous, sleeping angel and I was so surprised at how long he is! (I haven't seen him since he was in the hospital, recovering from his STEP procedure.) I wasn't surprised how neat and clean and "homey" their place is...Erin ALWAYS creates a loving environment, wherever she is.
Eventually, we settled down for the night. Unfortunately, I was so wired from traveling, and excited to see them, that I could NOT fall asleep! ha ha Around 3:30 A.M., I heard Collin cry out, then fuss quietly. I went in to check on him and he was soaking! I was soon to learn that this is a daily (almost hourly) occurrence. (I can't imagine the sheer number of diapers or wipes-$$- they go through; at least two to three times as much as kids WITHOUT short gut.) I took him out of the crib, being careful to not tug on his lines or get them tangled on the crib rail OR his blankets. Collin was just looking at me, not afraid or annoyed (that I wasn't his parents) like I worried he might be.
I changed his diaper and then went into his closet to look for replacement pajamas. It was dark, and I was working by the light of a cute little nightlight. I gave up looking for p.j.s and found a onesie. Collin watched my search with a bemused expression on his face. As I slid the onesie over his head, I realized it was TOO small. It wouldn't even meet, let alone snap between his legs! He resembled Chris Farley in the movie "Tommy Boy" (line from movie, "Fat man in a little coat!" ha ha). I also couldn't find any clean crib sheets! So I did what any self-respecting grandma would do. I wrapped him up in one of his gorgeous knit blankets, curled up with him on his glider and proceeded to rock/snuggle/sing to him. He watched me intently for awhile, finally smiled his approval, and eventually fell asleep. Life was good!
Suddenly, I was jarred out of my happy, blissful state by a hell-like, high-pitched beeping noise! It was one of Collin's alarms, and I was struck dumb, not knowing what to do. I faltered for moment or two, then decided it was "Mommy time!" As I walked to the door, it flew open, and there stood Erin. Stunned and surprised by "SOMEONE" unexpected, holding her baby in the middle of his room, Erin suffered what was probably a small (and thankfully nonfatal) heart attack! When all breathing and heart rates returned to normal (only Collin remained unfazed during this whole episode), she fixed the pump alarm, and we all returned to bed. Shortly thereafter (less than 30 minutes), Matt's alarm signaled the beginning of the day and he got up for work.
Thus started my first day in Omaha!
The whole weekend is a wonderful blur, but I'll share some highlights.
Friday, Collin, his mommy and I went to lunch with my parents and sister M and my adorable nephews, C & G. Collin fell asleep in the car (after all, we had a busy morning of playing with cars, "crawl chasing" and reading books!) I was happy to follow Collin from room to room as he showed me his favorite "play places". There were the books in his room, his "ducks" on the lip of the bathtub, Mommy's cookbooks & the refrigerator in the kitchen and his large assortment of toys in the living room. (I wish I'd have brought knee pads!)
That night for dinner, Mommy made her gourmet "Tater Tot Casserole"! lol Matt and Collin "helped" Erin load the dishwasher and Matty did Collin's cares (making formula, adding vitamins and meds to the milk bag) while Erin made her delicious dinner. I was thoroughly entertained all day by Collin...he learns so fast, has a fantastic personality and is so easy going & calm. At one point he went from sobbing to smiling (from o to 60) as soon as mommy sang to him. Wonderful and amazing!
Their nightly ritual includes the normal stuff: diaper change, pajamas, quiet play that calms the baby down. Erin prepares Collin's room for bedtime, including turning out the light ahead of time & turning on the nightlight; picking up any errant toys or clothes. Putting the braces on Collin's feet is a trick that Daddy has mastered; shoes first, then quickly slide the "brace bar" on! Collin goes to sleep so well, it is really amazing! However, around 10 each night, as he tries in vain to roll over in his sleep, the braces restrict him, wake him and then "someone" has to calm the tired, frustrated, angry, uncomfortable baby.
During the night, various alarms screech (fluids are done, formula is out, the bag fell over and air is getting in the line, etc.) Erin and/or Matt get up patiently each time to take care of our precious boy. In addition to the alarms, Collin (and all "short gut kids") have extremely bountiful, runny poo. Add to the equation that Collin is getting EXTRA fluids now (to keep him hydrated) AND continuous feeds (which means that he is getting formula almost 24 hours a day), and you have a little man who "pees like a racehorse" and "has more runs than a pair of pantyhose"! (I know you all will be VERY surprised to know I made that last line up, straight off the top of my head! lol)
All of the output creates a strain on the diapers; as I mentioned earlier, Collin wets/poos through his p.j.s nightly (sometimes more than once) and through his bedsheets/blankets, too. (I can't even tell you how many loads of laundry she does each day!) Erin and Matt have developed a team work approach to cleaning him and his bed during these messy episodes. Also, if the fluid (tpn) has run it's course, there is the cleaning of the ports, flushing of the line and clamping it off, which has to be done. Erin has taught herself to do this in the dark! Unless you have done this yourself (I tried, once), or seen it done, you probably won't "get" how amazing this is!!
On Saturday morning (after an eventful night of alarms, poo explosions and such), I got up with Collin. It was awesome spending the morning with him, he has such a happy personality and smiles & laughs so easily. He ate a breakfast of carrots mixed with cereal (he doesn't eat fruit because it would loosen his already watery stools) and enjoyed "feeding himself" & brushing his teeth. Afterwards he DEFINITELY needed a bath, so we had a "sponge bath adventure". Because of the broviac catheter (which goes into his chest and transports the tpn into his veins) and all of the tape that secures it, Collin can't be submerged except for once a week (when it's time to change the protective pads on his g-tube and the tape on his line).
Early afternoon I left our little family for a couple hours to run to the store and to visit with Collin's Uncle Michael in his new apt.
Unbeknown to Erin, Matt and I had been planning an early birthday surprise for her. Early in the week (as soon as I knew that I would be in Omaha), I "bought" a hotel room in the Old Market for Saturday night.
The plan was for Matt to take Erin out for a romantic evening and then stay the night in a place which had a pool/jacuzzi. I thought that if any two people deserved a little "break", it was these two!! After I reserved the hotel room, I left the "romantic" stuff up to Matt! My only other participation would be staying with Collin overnight. So, during Saturday afternoon, Matt left to "go to the driving range", when in reality he was checking into their hotel room, making an upgrade to a room with a jacuzzi tub & preparing his romantic surprises!
Saturday afternoon, Erin agreed to go out to dinner with Matt and got ready for a "night on the town". Matt and I took Collin out for a walk around the complex (which Collin absolutely LOVED!) and killed some time. Collin wore the "Madison Blue Streaks" hoodie his Grandma Mary got him and looked insanely adorable!
When we got back to the apt., Collin could really tell something was up. He sensed the excitement in the air (plus, Mommy was wearing her "going out" make-up! ha ha) and raced back and forth, between the living room and mommy's bathroom.
Since Collin is attached (via the lines) to his back-pack (which holds the milk bag, ice packs and the fluid bags), someone has to be the "holder of the leash". I happily took on that job, basically following Collin wherever he wanted to go, carrying his backpack and ensuring that he didn't get his tubes stuck on something!
He only cried for a minute when his parents left; I did something goofy to make him laugh and he was fine after that! I fed him his dinner (carrots) and after we cleaned up, went for another walk.
I huffed and puffed going back up the stairs (three flights, plus floors), carrying Collin (almost 30 lbs), his backpack (almost 15 lbs) and my purse (probably 10 lbs)! Collin thought it was hi-lari-ous and belly-laughed at his silly, huffing-puffing grandma all the way to the apt.
Bedtime was so easy, I wish Collin's aunties and uncle had gone to bed as quickly and sweetly! We rocked for a bit after getting p.j.s on, read some stories and sang Collin's favorite song, "Twinkle, Twinkle, Little Star". Collin was asleep so fast that I threw in some laundry, picked up toys and sat back to "relax". I was so honored that Erin and Matt would trust me to stay alone with their precious baby, excited for them to have a rare night out and happy to be giving them the opportunity to do so. I was feeling rather cocky, I have to admit, because before they left, Erin had given me the best instructions on how to do EVERYTHING...including reinserting his g-tube balloon if it came out of his stomach! (I think her instructions included the phrase, "his guts and formula will be squirting out, but don't be scared"!!!!)
At nine, like clock-work, the alarm to turn off his fluids sounded. I took Collin out of his bed and slowly did what Erin so deftly does (cleaned off the port, flushed out the line, clamped off the tube), only I had to turn on the overhead light to do it! My hands shook the entire time, knowing how important this procedure is...Collin has a compromised immune system, so any amount of germs or not flushing the line properly could cause an infection or a clot! During the process, Collin just watched me calmly, surely thinking grandma was very slow at this!! He had soaked through his p.j.s, so I changed him and his bed (which by this time I had learned where everything is...the entire home is extremely organized)and then put him to bed. I grabbed the tpn bag/tubes and the pump and went back into the living room.
I literally had sweat dripping off my head (possibly from the earlier exertion, but being nervous added to it!) as I sat down to relax again. Wrong. The alarm on the pump for the fluids continued to beep!beep!beep! every five minutes. I won't add to this already long story to describe the actual pump; let it suffice to say THERE IS NO "OFF BUTTON" on it. I tried everything I could think of to turn it off, eventually even logging onto my laptop and reading the manual to figure it out. After several (five) hours, I finally just wrapped the pump up in a towel in a blanket and stuck it in the master bathroom. (Even in my sleep, I could hear the far-off beep!beep!beep! all night long!!) *Turns out, you have to take the battery out of it. DUH!*
In the morning, when Matt and Erin came back (bright eyed and bushy tailed, as they say) Collin was SO proud of himself, and soo happy to see his mommy and daddy!
We all got dressed and headed out to meet Gigi and G.Grandpa for lunch. Unbeknown to me, but Erin had been planning a surprise birthday party FOR ME since she found out I was coming to Omaha! Over 40 family members and friends were there; I was completely surprised (and touched!) I STILL am laughing a little, thinking about how funny it must have been to Matt to listen to both Erin & I, planning our "surprises" for each other!!
In the afternoon Erin and I took advantage of Collin's nap time and slept a bit, while Matt did his homework. I love how he takes care of his family; not only doing the day to day stuff that he needs, but always planning forward, doing what he can to insure a safe, secure future for them all. That night Collin and I walked around some more (our little man LOVES his stroller and outside adventures!) while Erin made delicious ribs/mashed potatoes and broccoli for dinner & Matt did research on "large intestine overload".
Due to the increased fluids that Collin is on, he is having an increase in his output and it was a concern that he might be "stooling out". Additionally, when one has a child with the health issues that Collin has, it is just prudent for his parents to do their own research to educate themselves on what's going on, but also for potential problems or other procedures.
Again, Erin and I stayed up talking, about the fears she has for Collin and for her hopes and dreams for him. I know she doesn't indulge in self-pity or "what-ifs" very often, but occasionally she allows herself to acknowledge the really scary potential outcome to Collin's short gut. We cried a little and I did my best to reassure her. I had to leave early in the morning, and even though we eventually said "goodnight", sleep again did not come for me for hours. (During the night, the bedsheets had to be changed again, his milk had to be refilled, he fought with the braces, etc.)
I take my hat off to all short gut parents (and the parents of all ill children). The immense amount of stress, worry & tension one has while advocating for their child, going to appointments, answering alarms, solving problems (and the list goes on), all while living with a lack of sleep (or at least the lack of a good night's sleep)is more than I can imagine dealing with on a daily basis! I think that, like being in the eye of a storm, when you are in the middle of the chaos, you don't even realize how tired/stressed out/anxious you are. Erin and Matt do all that AND deal with normal parent stresses (bill$, cleaning, teething) and do the normal, loving things that mommies and daddies do (reading stories, sing songs, wrestle).
They have also developed, naturally, a system whereby each works to his or her strengths. Where Erin is fastidious and organized, Matt is a great researcher and wonderful student. (I need to interject that Matt, while working his full time military job, has also been taking online courses to finish his degree. He recently took the SAT-in order to apply for nursing and Physician's Assistant programs-and tonight found out he scored a 1650!! The minimum to get into the PA program is 1425!!) While Matt searches out answers to their questions about Collin's condition online, Erin is Collin's greatest advocate in person; sometimes "taking on" Collin's surgeons (and small armies of medical students) in her quest for a healthy life for him.
I am so thankful to my husband for allowing me the opportunity to visit Erin and Matt and Collin, whom I missed so much! Prior to this weekend, I was sick with worry (and feeling a little guilty that I hadn't been able to "help" since I came when he had his surgery) about Collin and his parents. My amazing weekend allowed me to spend quality time with my beautiful and brilliant grandson (who is growing so fast!), it allowed me to "walk in the shoes" of his parents and I was blessed to see my family and friends. I left Omaha with sadness, missing Collin and his parents before my plane left the ground.
Collin is an amazing little guy and it's all because he has the most awesome parents! I have always been so proud of and inspired by Erin and Matt; after my amazing weekend in Omaha, my pride, awe and inspiration is limitless.
Early last week, as I lamented to Grandpa Nastase that I had not seen my only grandson and his parents since AUGUST, he calmly suggested I look up ticket prices. If I could find an inexpensive flight to Omaha on an "off work" Friday for him, he would take the following Monday off and I could go to Omaha. Woo to the hoo!!! I quickly found tickets (flying out that Thursday night), made sure that Erin and Matty didn't have any plans...then bought those suckers! ha ha
I flew in late on Thursday night, after Collin was already in bed. I got to the apt. around 11, so Erin and I just sat up and talked. I did peek in on that gorgeous, sleeping angel and I was so surprised at how long he is! (I haven't seen him since he was in the hospital, recovering from his STEP procedure.) I wasn't surprised how neat and clean and "homey" their place is...Erin ALWAYS creates a loving environment, wherever she is.
Eventually, we settled down for the night. Unfortunately, I was so wired from traveling, and excited to see them, that I could NOT fall asleep! ha ha Around 3:30 A.M., I heard Collin cry out, then fuss quietly. I went in to check on him and he was soaking! I was soon to learn that this is a daily (almost hourly) occurrence. (I can't imagine the sheer number of diapers or wipes-$$- they go through; at least two to three times as much as kids WITHOUT short gut.) I took him out of the crib, being careful to not tug on his lines or get them tangled on the crib rail OR his blankets. Collin was just looking at me, not afraid or annoyed (that I wasn't his parents) like I worried he might be.
I changed his diaper and then went into his closet to look for replacement pajamas. It was dark, and I was working by the light of a cute little nightlight. I gave up looking for p.j.s and found a onesie. Collin watched my search with a bemused expression on his face. As I slid the onesie over his head, I realized it was TOO small. It wouldn't even meet, let alone snap between his legs! He resembled Chris Farley in the movie "Tommy Boy" (line from movie, "Fat man in a little coat!" ha ha). I also couldn't find any clean crib sheets! So I did what any self-respecting grandma would do. I wrapped him up in one of his gorgeous knit blankets, curled up with him on his glider and proceeded to rock/snuggle/sing to him. He watched me intently for awhile, finally smiled his approval, and eventually fell asleep. Life was good!
Suddenly, I was jarred out of my happy, blissful state by a hell-like, high-pitched beeping noise! It was one of Collin's alarms, and I was struck dumb, not knowing what to do. I faltered for moment or two, then decided it was "Mommy time!" As I walked to the door, it flew open, and there stood Erin. Stunned and surprised by "SOMEONE" unexpected, holding her baby in the middle of his room, Erin suffered what was probably a small (and thankfully nonfatal) heart attack! When all breathing and heart rates returned to normal (only Collin remained unfazed during this whole episode), she fixed the pump alarm, and we all returned to bed. Shortly thereafter (less than 30 minutes), Matt's alarm signaled the beginning of the day and he got up for work.
Thus started my first day in Omaha!
The whole weekend is a wonderful blur, but I'll share some highlights.
Friday, Collin, his mommy and I went to lunch with my parents and sister M and my adorable nephews, C & G. Collin fell asleep in the car (after all, we had a busy morning of playing with cars, "crawl chasing" and reading books!) I was happy to follow Collin from room to room as he showed me his favorite "play places". There were the books in his room, his "ducks" on the lip of the bathtub, Mommy's cookbooks & the refrigerator in the kitchen and his large assortment of toys in the living room. (I wish I'd have brought knee pads!)
That night for dinner, Mommy made her gourmet "Tater Tot Casserole"! lol Matt and Collin "helped" Erin load the dishwasher and Matty did Collin's cares (making formula, adding vitamins and meds to the milk bag) while Erin made her delicious dinner. I was thoroughly entertained all day by Collin...he learns so fast, has a fantastic personality and is so easy going & calm. At one point he went from sobbing to smiling (from o to 60) as soon as mommy sang to him. Wonderful and amazing!
Their nightly ritual includes the normal stuff: diaper change, pajamas, quiet play that calms the baby down. Erin prepares Collin's room for bedtime, including turning out the light ahead of time & turning on the nightlight; picking up any errant toys or clothes. Putting the braces on Collin's feet is a trick that Daddy has mastered; shoes first, then quickly slide the "brace bar" on! Collin goes to sleep so well, it is really amazing! However, around 10 each night, as he tries in vain to roll over in his sleep, the braces restrict him, wake him and then "someone" has to calm the tired, frustrated, angry, uncomfortable baby.
During the night, various alarms screech (fluids are done, formula is out, the bag fell over and air is getting in the line, etc.) Erin and/or Matt get up patiently each time to take care of our precious boy. In addition to the alarms, Collin (and all "short gut kids") have extremely bountiful, runny poo. Add to the equation that Collin is getting EXTRA fluids now (to keep him hydrated) AND continuous feeds (which means that he is getting formula almost 24 hours a day), and you have a little man who "pees like a racehorse" and "has more runs than a pair of pantyhose"! (I know you all will be VERY surprised to know I made that last line up, straight off the top of my head! lol)
All of the output creates a strain on the diapers; as I mentioned earlier, Collin wets/poos through his p.j.s nightly (sometimes more than once) and through his bedsheets/blankets, too. (I can't even tell you how many loads of laundry she does each day!) Erin and Matt have developed a team work approach to cleaning him and his bed during these messy episodes. Also, if the fluid (tpn) has run it's course, there is the cleaning of the ports, flushing of the line and clamping it off, which has to be done. Erin has taught herself to do this in the dark! Unless you have done this yourself (I tried, once), or seen it done, you probably won't "get" how amazing this is!!
On Saturday morning (after an eventful night of alarms, poo explosions and such), I got up with Collin. It was awesome spending the morning with him, he has such a happy personality and smiles & laughs so easily. He ate a breakfast of carrots mixed with cereal (he doesn't eat fruit because it would loosen his already watery stools) and enjoyed "feeding himself" & brushing his teeth. Afterwards he DEFINITELY needed a bath, so we had a "sponge bath adventure". Because of the broviac catheter (which goes into his chest and transports the tpn into his veins) and all of the tape that secures it, Collin can't be submerged except for once a week (when it's time to change the protective pads on his g-tube and the tape on his line).
Early afternoon I left our little family for a couple hours to run to the store and to visit with Collin's Uncle Michael in his new apt.
Unbeknown to Erin, Matt and I had been planning an early birthday surprise for her. Early in the week (as soon as I knew that I would be in Omaha), I "bought" a hotel room in the Old Market for Saturday night.
The plan was for Matt to take Erin out for a romantic evening and then stay the night in a place which had a pool/jacuzzi. I thought that if any two people deserved a little "break", it was these two!! After I reserved the hotel room, I left the "romantic" stuff up to Matt! My only other participation would be staying with Collin overnight. So, during Saturday afternoon, Matt left to "go to the driving range", when in reality he was checking into their hotel room, making an upgrade to a room with a jacuzzi tub & preparing his romantic surprises!
Saturday afternoon, Erin agreed to go out to dinner with Matt and got ready for a "night on the town". Matt and I took Collin out for a walk around the complex (which Collin absolutely LOVED!) and killed some time. Collin wore the "Madison Blue Streaks" hoodie his Grandma Mary got him and looked insanely adorable!
When we got back to the apt., Collin could really tell something was up. He sensed the excitement in the air (plus, Mommy was wearing her "going out" make-up! ha ha) and raced back and forth, between the living room and mommy's bathroom.
Since Collin is attached (via the lines) to his back-pack (which holds the milk bag, ice packs and the fluid bags), someone has to be the "holder of the leash". I happily took on that job, basically following Collin wherever he wanted to go, carrying his backpack and ensuring that he didn't get his tubes stuck on something!
He only cried for a minute when his parents left; I did something goofy to make him laugh and he was fine after that! I fed him his dinner (carrots) and after we cleaned up, went for another walk.
I huffed and puffed going back up the stairs (three flights, plus floors), carrying Collin (almost 30 lbs), his backpack (almost 15 lbs) and my purse (probably 10 lbs)! Collin thought it was hi-lari-ous and belly-laughed at his silly, huffing-puffing grandma all the way to the apt.Bedtime was so easy, I wish Collin's aunties and uncle had gone to bed as quickly and sweetly! We rocked for a bit after getting p.j.s on, read some stories and sang Collin's favorite song, "Twinkle, Twinkle, Little Star". Collin was asleep so fast that I threw in some laundry, picked up toys and sat back to "relax". I was so honored that Erin and Matt would trust me to stay alone with their precious baby, excited for them to have a rare night out and happy to be giving them the opportunity to do so. I was feeling rather cocky, I have to admit, because before they left, Erin had given me the best instructions on how to do EVERYTHING...including reinserting his g-tube balloon if it came out of his stomach! (I think her instructions included the phrase, "his guts and formula will be squirting out, but don't be scared"!!!!)
At nine, like clock-work, the alarm to turn off his fluids sounded. I took Collin out of his bed and slowly did what Erin so deftly does (cleaned off the port, flushed out the line, clamped off the tube), only I had to turn on the overhead light to do it! My hands shook the entire time, knowing how important this procedure is...Collin has a compromised immune system, so any amount of germs or not flushing the line properly could cause an infection or a clot! During the process, Collin just watched me calmly, surely thinking grandma was very slow at this!! He had soaked through his p.j.s, so I changed him and his bed (which by this time I had learned where everything is...the entire home is extremely organized)and then put him to bed. I grabbed the tpn bag/tubes and the pump and went back into the living room.
I literally had sweat dripping off my head (possibly from the earlier exertion, but being nervous added to it!) as I sat down to relax again. Wrong. The alarm on the pump for the fluids continued to beep!beep!beep! every five minutes. I won't add to this already long story to describe the actual pump; let it suffice to say THERE IS NO "OFF BUTTON" on it. I tried everything I could think of to turn it off, eventually even logging onto my laptop and reading the manual to figure it out. After several (five) hours, I finally just wrapped the pump up in a towel in a blanket and stuck it in the master bathroom. (Even in my sleep, I could hear the far-off beep!beep!beep! all night long!!) *Turns out, you have to take the battery out of it. DUH!*
In the morning, when Matt and Erin came back (bright eyed and bushy tailed, as they say) Collin was SO proud of himself, and soo happy to see his mommy and daddy!
We all got dressed and headed out to meet Gigi and G.Grandpa for lunch. Unbeknown to me, but Erin had been planning a surprise birthday party FOR ME since she found out I was coming to Omaha! Over 40 family members and friends were there; I was completely surprised (and touched!) I STILL am laughing a little, thinking about how funny it must have been to Matt to listen to both Erin & I, planning our "surprises" for each other!!
In the afternoon Erin and I took advantage of Collin's nap time and slept a bit, while Matt did his homework. I love how he takes care of his family; not only doing the day to day stuff that he needs, but always planning forward, doing what he can to insure a safe, secure future for them all. That night Collin and I walked around some more (our little man LOVES his stroller and outside adventures!) while Erin made delicious ribs/mashed potatoes and broccoli for dinner & Matt did research on "large intestine overload".
Due to the increased fluids that Collin is on, he is having an increase in his output and it was a concern that he might be "stooling out". Additionally, when one has a child with the health issues that Collin has, it is just prudent for his parents to do their own research to educate themselves on what's going on, but also for potential problems or other procedures.
Again, Erin and I stayed up talking, about the fears she has for Collin and for her hopes and dreams for him. I know she doesn't indulge in self-pity or "what-ifs" very often, but occasionally she allows herself to acknowledge the really scary potential outcome to Collin's short gut. We cried a little and I did my best to reassure her. I had to leave early in the morning, and even though we eventually said "goodnight", sleep again did not come for me for hours. (During the night, the bedsheets had to be changed again, his milk had to be refilled, he fought with the braces, etc.)
I take my hat off to all short gut parents (and the parents of all ill children). The immense amount of stress, worry & tension one has while advocating for their child, going to appointments, answering alarms, solving problems (and the list goes on), all while living with a lack of sleep (or at least the lack of a good night's sleep)is more than I can imagine dealing with on a daily basis! I think that, like being in the eye of a storm, when you are in the middle of the chaos, you don't even realize how tired/stressed out/anxious you are. Erin and Matt do all that AND deal with normal parent stresses (bill$, cleaning, teething) and do the normal, loving things that mommies and daddies do (reading stories, sing songs, wrestle).
They have also developed, naturally, a system whereby each works to his or her strengths. Where Erin is fastidious and organized, Matt is a great researcher and wonderful student. (I need to interject that Matt, while working his full time military job, has also been taking online courses to finish his degree. He recently took the SAT-in order to apply for nursing and Physician's Assistant programs-and tonight found out he scored a 1650!! The minimum to get into the PA program is 1425!!) While Matt searches out answers to their questions about Collin's condition online, Erin is Collin's greatest advocate in person; sometimes "taking on" Collin's surgeons (and small armies of medical students) in her quest for a healthy life for him.
I am so thankful to my husband for allowing me the opportunity to visit Erin and Matt and Collin, whom I missed so much! Prior to this weekend, I was sick with worry (and feeling a little guilty that I hadn't been able to "help" since I came when he had his surgery) about Collin and his parents. My amazing weekend allowed me to spend quality time with my beautiful and brilliant grandson (who is growing so fast!), it allowed me to "walk in the shoes" of his parents and I was blessed to see my family and friends. I left Omaha with sadness, missing Collin and his parents before my plane left the ground.
Collin is an amazing little guy and it's all because he has the most awesome parents! I have always been so proud of and inspired by Erin and Matt; after my amazing weekend in Omaha, my pride, awe and inspiration is limitless.
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