Thursday, April 26, 2012
Home
We are home. All went basically as planned. I will explain later when my hands are not full. Thank you again everyone. Hugs.
Big Day
Today is a big day. Our little man needs to go in for surgery. Nothing related to his Crohn's, just a routine surgery.
Regardless of how often any procedure is done, surgery is still pretty serious. Needless to say, I've been pretty anxious the past few days. While we played outside today I couldn't help but think at this time tomorrow Cole will have yet one more ailment that he can't tell us about. The doctors assured us while he will be very swollen and bruised the pain meds the first few days will keep him comfortable. Here's hoping.
As the day goes on I will update here as well as on Facebook for those of you following.
Thank you again for all the messages tonight as well as the prayers you have sent. Cole's doctors are superb, excellent in their craft, so whatever they encounter tomorrow, they will do their absolute best. Still, until I am able to hold my baby in recovery I will be nervously pecking at my mindless iPod apps to pass the time. For the record, I really still think there should be a workout waiting room - a great way to get rid of nervous energy.
Regardless of how often any procedure is done, surgery is still pretty serious. Needless to say, I've been pretty anxious the past few days. While we played outside today I couldn't help but think at this time tomorrow Cole will have yet one more ailment that he can't tell us about. The doctors assured us while he will be very swollen and bruised the pain meds the first few days will keep him comfortable. Here's hoping.
As the day goes on I will update here as well as on Facebook for those of you following.
Thank you again for all the messages tonight as well as the prayers you have sent. Cole's doctors are superb, excellent in their craft, so whatever they encounter tomorrow, they will do their absolute best. Still, until I am able to hold my baby in recovery I will be nervously pecking at my mindless iPod apps to pass the time. For the record, I really still think there should be a workout waiting room - a great way to get rid of nervous energy.
Wednesday, April 25, 2012
Pride
Parenting is a tough balancing act. Nick and I want to have a strong relationship with the kids, yet also believe
it is more important to be their parents than their friends. There are many times I know I wonder if we are doing a good job or if we are creating monsters by not letting them have everything they want. Unfortunately, you often don't know the impact of the lessons you've taught your kids directly and indirectly until they are older and no longer so impressionable.
Over Easter break, my little Gwyn poured pride into my heart as effortlessly as pouring her morning cereal into a bowl. Considering the morning she had bickering with her sister over just about everything I never expected what was coming that Saturday.
I had planned to take both girls to an Easter egg hunt, however Paige had been very sick in the night so I knew she needed to stay home. While I considered waiting for a hunt the next week, I needed a few things from the store and thought going would give Gwyn and I something special and fun for the two of us to do before moving on to the usual mundane Saturday morning chores.
Despite the dampness, the park was swarming with kids bundled like the little marshmallow men, armed with baskets and bags for their impending hauls. The youngest age group was three to five, but two year olds were also directed to the open field where the eggs' brightness popped in the glistening frost.
Kids lined up behind caution tape, hungrily eyeing up the turf ahead, anxious for the horn to sound signaling it was time to gather their loot. Parents were instructed to "let the kids do it" yet as the tone sounded, I saw parents pick kids up to deliver them to the orbs further in the field. Even with the accidental knock over by another adult, Gwyn did well, gathering a few eggs, one with a message inside that she had won a particular prize. Like any other kid, she was excited.
Then we walked by a very young boy in tears. His mother was holding an infant and reminding him how she told him to run. He had not gathered one egg. Gwyn asked is she could give him one of hers. Of course I said yes. She whispered in my ear that she was going to give him the special one because he was so sad. When she handed the little boy the egg the look on his face was priceless, just as much as the look of relief on the mother's face as she thanked us. Then Gwyn told them to look inside, that the egg was very special.
Hand in hand we walked away, and I am sure I was beaming with pride. In this moment, I realized in some way we are getting this parenting thing right, even if she still bickers with her sister or rolls her eyes at us from time to time, she's reflecting the bigger lessons we have tried to instill within her.
Kids lined up behind caution tape, hungrily eyeing up the turf ahead, anxious for the horn to sound signaling it was time to gather their loot. Parents were instructed to "let the kids do it" yet as the tone sounded, I saw parents pick kids up to deliver them to the orbs further in the field. Even with the accidental knock over by another adult, Gwyn did well, gathering a few eggs, one with a message inside that she had won a particular prize. Like any other kid, she was excited.
Then we walked by a very young boy in tears. His mother was holding an infant and reminding him how she told him to run. He had not gathered one egg. Gwyn asked is she could give him one of hers. Of course I said yes. She whispered in my ear that she was going to give him the special one because he was so sad. When she handed the little boy the egg the look on his face was priceless, just as much as the look of relief on the mother's face as she thanked us. Then Gwyn told them to look inside, that the egg was very special.
Hand in hand we walked away, and I am sure I was beaming with pride. In this moment, I realized in some way we are getting this parenting thing right, even if she still bickers with her sister or rolls her eyes at us from time to time, she's reflecting the bigger lessons we have tried to instill within her.
Blessings
Signs are everywhere. Sometimes you just have to trust them.
Lying there, wide awake watching my precious princess peacefully dreaming, Holiday Inn popped in my head. I heard Jim telling Linda how when he can't sleep he "counts his blessings instead of sheep" and falls asleep counting his blessings. Immediately, I looked back at Paige, then began adding up all I have to be thankful for.
First and foremost, I thought about my beautiful family, Nick and the kids. Their love is a soft landing to come home to, repelling the sharpness from the harshest of days. I will always love them to the moon and back more times than I can count.
In the fifteen years we have been together, Nick and I have never had to endure the kinds of challenges we have over the past year and a half. However, in facing our detours together, our connection has grown deeper, which I know I didn't think was possible. As much as I knew in my heart and in our vows that we would be there for each other "for better or worse" actually living through what seems to be the "worse" and still managing to smile with one another at the end of the day makes me realize how lucky we are to be each other's rock.
Life is about finding happiness in the little moments of the day, which incidentally, is the first thing we ask the kids at the dinner table. By having to slow down, I have stopped more frequently to see the beauty around me, the poetry of my life, and in doing so, am teaching the girls to do the same. Even when our days are spent in ways we don't exactly choose, there is always something wonderful about each of them that I take time to stop and acknowledge. For these oases, I am grateful.
Watching my kids discover the world and unlock their dreams is amazing. As they forge ahead, I will be lucky to witness and guide them as they breathe life into their passions, giving shape to their visions. These days, this means I will have a princess veterinarian and a singer/music teacher, so I can get all of my pet care, royal pampering, and concert fun in when I visit my girls. I won't be surprised if by next week Gwyn changes her mind, deciding to be a dinosaur tamer - that would be about her speed. To be privy to the innocent imagination of childhood; princesses, fairies, pirates, and Peter Pan makes me smile every day. Each stage of childhood is so special, I don't want to miss any piece of the puzzle. This job of a parent is much more tiring and trying at times than I ever imagined, yet at the same time, the most rewarding role I've ever had in my life.
I also frequently think of all the family, friends, and even strangers for their love and kindness they have extended to our family. We are so blessed to have so many people that care about us. For those of you that know me, it's tough for me to ask for help, let alone accept it, even if it is really just helping with the big kids while we are at the hospital. I have been overwhelmed with the amount of you who have offered their time if we ever needed as well as the emails, messages, and calls with support. While I've said it before, at the end of a difficult or discouraging day I often go back to your words which reassure me Nick and I are not alone in this, that even though we cannot do all we want or even see you, you understand and are still there for us. In this we are truly blessed.
And of course, I feel extremely blessed by the prayers for Cole.
Every night I think about how fortunate we are. We may not have everything we may want, but we have almost everything we need.
Today I passed a sign outside a church that said, "Having trouble sleeping? Try counting your blessings." Funny, I thought the same thing last night - which compelled me to share with you today. Sometimes you just have to trust and follow the signs.
Thursday, April 19, 2012
Cole's Crohnies
As a mom, it is difficult to know there are times I just can't fix what is happening with my child. Honestly, I figured this day would come when one of the girls went through their first break up, not with my toddler, and certainly not about any medical concerns at this point in life.
There are times I truly feel helpless in terms of what to do when Cole is not feeling well. What makes it even more challenging is that at this point, he still says very little and on tough days, says less. Bouncing babble is replaced by agonizing screeches and writhing until he settles into a comfortable position. On these days, we often spend hours snuggling and pacing as they are the only activities that are able to soothe him.
As optimistic as I try to be, there are times I am frustrated. I just want to take this suffering away from Cole. While I don't have super human powers to eliminate his pain immediately, I can do something that has the power to change his life over time. I can help raise money for research against this terrible disease and start a team for the upcoming Crohn's and Colitis walk.
I have registered our team in Cole's honor to walk in the Take Steps for Crohn's & Colitis Walk this June. Take Steps is CCFA's national evening walk and celebration and the nation's largest event dedicated to finding cures for digestive diseases. It is a casual 2-3 mile stroll to raise money for crucial research, bringing us closer to a future free from Crohn's disease and ulcerative colitis.
Please consider joining our team, Cole's Crohnies, and help us take a few steps towards making life better for not only Cole, but others like him. Like the man throwing starfish back into the sea, while he couldn't save them all, he made a difference for them one at a time, and that is my goal, for us to work together to make a little bit of a difference every year so researchers can keep moving forward, striving towards a cure for these digestive diseases.
Thank you all for your constant prayers and support, they are our sea.
http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-WesternNewYork?px=2600658&pg=personal&fr_id=3199
There are times I truly feel helpless in terms of what to do when Cole is not feeling well. What makes it even more challenging is that at this point, he still says very little and on tough days, says less. Bouncing babble is replaced by agonizing screeches and writhing until he settles into a comfortable position. On these days, we often spend hours snuggling and pacing as they are the only activities that are able to soothe him.
As optimistic as I try to be, there are times I am frustrated. I just want to take this suffering away from Cole. While I don't have super human powers to eliminate his pain immediately, I can do something that has the power to change his life over time. I can help raise money for research against this terrible disease and start a team for the upcoming Crohn's and Colitis walk.
I have registered our team in Cole's honor to walk in the Take Steps for Crohn's & Colitis Walk this June. Take Steps is CCFA's national evening walk and celebration and the nation's largest event dedicated to finding cures for digestive diseases. It is a casual 2-3 mile stroll to raise money for crucial research, bringing us closer to a future free from Crohn's disease and ulcerative colitis.
Please consider joining our team, Cole's Crohnies, and help us take a few steps towards making life better for not only Cole, but others like him. Like the man throwing starfish back into the sea, while he couldn't save them all, he made a difference for them one at a time, and that is my goal, for us to work together to make a little bit of a difference every year so researchers can keep moving forward, striving towards a cure for these digestive diseases.
Thank you all for your constant prayers and support, they are our sea.
http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-WesternNewYork?px=2600658&pg=personal&fr_id=3199
Saturday, April 14, 2012
M.I.A.
Spring break here has been filled with excitement! We've gone from birthday celebrations to egg hunts to Easter to a mini girl's road trip to living room camping and even had visits from the Tooth Pirate and the Tooth Fairy! Needless to say, I think this sums up why I've been m.i.a. for a while.
Right before all of this fun, we did spend one very long night at the ER with Cole. After a weekend of terrible flaring, refusal to eat much, culminating with one seemingly endless afternoon and evening of inconsolablility, our pediatrician sent us to the hospital. Of course our gremlin transformed back into an angel after the tranquil thruway trek and the triage nurse looked at me as if I had three heads when I explained why we were there. Lucky for me, the second Cole woke back up, his distress was more than evident, so I no longer fielded the "look at the crazy mom" glares.
Throughout the night, the staff performed numerous tests and x-rays as ordered by Cole's g.i. doctors. While he had a fever and a great deal of inflammation in his abdomen, the general consensus was that there was something amiss, yet other than the iv fluids the doctors felt there wasn't much else they could do right at that moment. They explained the need for all the tests results to come in and be analyzed, which would take about 48 hours. So after a few hours of hydration, we were sent on our way.
Once we were home, we sleepily started our routine of trying to get Cole to eat and drink. As long as he continued to drink, the doctors said not to worry too much about his lack of interest in food for a couple days. Hopefully once he started to feel better, he would perk up, which is exactly what he did.
A few days later, the call came with the test results. While the doctors were not shocked at the positive tests for blood and inflammation, they were surprised at how well everything else looked. In fact, the nurse said she had to triple check that she was looking at the results for the right kid because Cole's numbers in portions of his tests had never looked so positive, even from two weeks earlier. Some values still were low, but they were far beyond what they were expecting to see.
Knowing that things are moving in the right direction makes me breathe a little easier. I am certain someone above is really looking out for him right now and feel all the prayers are helping. Cole has a long few weeks ahead, filled with immunizations and a surgery at the end of the month. With such a stupendous start to April I am hoping for smooth sailing as we forge ahead further into our odyssey, hoping we are done with Charybdis, and nothing else remains to blow us off course.
Thank you again for all of your continued encouragement and support. I continued to be overwhelmed at the kindness and love from all of you, especially those of you who don't even know us. We are truly blessed and my gratitude is beyond words.
Right before all of this fun, we did spend one very long night at the ER with Cole. After a weekend of terrible flaring, refusal to eat much, culminating with one seemingly endless afternoon and evening of inconsolablility, our pediatrician sent us to the hospital. Of course our gremlin transformed back into an angel after the tranquil thruway trek and the triage nurse looked at me as if I had three heads when I explained why we were there. Lucky for me, the second Cole woke back up, his distress was more than evident, so I no longer fielded the "look at the crazy mom" glares.
Throughout the night, the staff performed numerous tests and x-rays as ordered by Cole's g.i. doctors. While he had a fever and a great deal of inflammation in his abdomen, the general consensus was that there was something amiss, yet other than the iv fluids the doctors felt there wasn't much else they could do right at that moment. They explained the need for all the tests results to come in and be analyzed, which would take about 48 hours. So after a few hours of hydration, we were sent on our way.
Once we were home, we sleepily started our routine of trying to get Cole to eat and drink. As long as he continued to drink, the doctors said not to worry too much about his lack of interest in food for a couple days. Hopefully once he started to feel better, he would perk up, which is exactly what he did.
A few days later, the call came with the test results. While the doctors were not shocked at the positive tests for blood and inflammation, they were surprised at how well everything else looked. In fact, the nurse said she had to triple check that she was looking at the results for the right kid because Cole's numbers in portions of his tests had never looked so positive, even from two weeks earlier. Some values still were low, but they were far beyond what they were expecting to see.
Knowing that things are moving in the right direction makes me breathe a little easier. I am certain someone above is really looking out for him right now and feel all the prayers are helping. Cole has a long few weeks ahead, filled with immunizations and a surgery at the end of the month. With such a stupendous start to April I am hoping for smooth sailing as we forge ahead further into our odyssey, hoping we are done with Charybdis, and nothing else remains to blow us off course.
Thank you again for all of your continued encouragement and support. I continued to be overwhelmed at the kindness and love from all of you, especially those of you who don't even know us. We are truly blessed and my gratitude is beyond words.
Tuesday, April 3, 2012
Memoir
Recently I stumbled upon a six word memoir challenge. For weeks I have been toying with what mine would be. I have a few that I cannot choose between, so here they are:
Life's hurdles continuously challenging, always strengthening.
Never forgetting miracles happen every day.
Words flow daily, filling blank pages.
Everyday, the slate is wiped meticulously.
Sprinkle precious family with generous love.
What's your six word memoir? I'd love to see what you come up with. :)
Life's hurdles continuously challenging, always strengthening.
Never forgetting miracles happen every day.
Words flow daily, filling blank pages.
Everyday, the slate is wiped meticulously.
Sprinkle precious family with generous love.
What's your six word memoir? I'd love to see what you come up with. :)
Monday, April 2, 2012
Excitement
We certainly don't need next week's sugar laden Sunday around here, we've been filled with enough excitement without any confections! Paigey is obsessed with wiggling her first loose tooth, certain every day that today will be the day she loses it. I am certain that one day, hopefully sooner than later, she will be right. Gwyneth has what seems to be an every other hour countdown to her fifth birthday. I have assured her there is no way we could forget. Just in case, she had Paige write me a note as a reminder. Then, there's Cole. As our little mountaineer summits the couch every time I turn away, he raises his arms and shouts something resembling "Score!" Of course he has yet to master the art of descending, thus the need for constant rescue, which is a captivating game for my crusader, especially since he has my full attention when I should be making dinner. And, for me, I could no longer contain myself and finally saw The Hunger Games with a friend, instead of waiting indefinitely for date night. As for Nick, he's pretty energized with his own plans for the trout making their way upstream this week. Needless to say, there has much ado about something here at all times lately.
After our last appointment with g.i. where we were given Cole's diagnosis of Crohn's Disease, he was unable to get his next set of immunizations due to a low grade fever. After a few sleepless nights with little we could do to comfort Cole or help his cough and fever, we were given prophylactic antibiotics to ward off whatever might be brewing. While this sounds simple, Cole has had a rather adverse reaction to the medicine, pretty much flinging him right back into a full blown flare. Needless to say, we have discontinued the medication and need to go in for some lab work in the morning to be sure he has not developed a c-diff infection from the lack of good bacteria left in his intestines. At this point I am hoping we stopped the medicine before there was too much damage so we are able to get him back on track and ready for his surgery at the end of the month.
Even with this little setback, we've been working hard on getting ready to celebrate around here. Placek and kuchen are ready to be made, the mold for butter lamb is ready to be filled, and birthday requests have been heard. I am hoping I am able to find the Woody doll Gwyn wants at the store since it is too late to order online. At least she finally gave me a tangible idea, although I can't blame her for asking for a trip to Disney, after all she is my daughter, she dreams pretty big! After presents are bought, all I have to do is find a new way to actually give them to Gwyn. Last year I gave her a riddled message and a map to find her treasures. My pirate loving daughter was thrilled and has reminded me how cool it was. I am thinking I will need to figure out how to top that. Here's hoping inspiration strikes fast! No matter what I do, the next few days will be bubbling with uncensored childhood commotion and I will be taking the time to breathe in the playfulness, allowing myself to be carefree with my three before these magical moments disappear.
After our last appointment with g.i. where we were given Cole's diagnosis of Crohn's Disease, he was unable to get his next set of immunizations due to a low grade fever. After a few sleepless nights with little we could do to comfort Cole or help his cough and fever, we were given prophylactic antibiotics to ward off whatever might be brewing. While this sounds simple, Cole has had a rather adverse reaction to the medicine, pretty much flinging him right back into a full blown flare. Needless to say, we have discontinued the medication and need to go in for some lab work in the morning to be sure he has not developed a c-diff infection from the lack of good bacteria left in his intestines. At this point I am hoping we stopped the medicine before there was too much damage so we are able to get him back on track and ready for his surgery at the end of the month.
Even with this little setback, we've been working hard on getting ready to celebrate around here. Placek and kuchen are ready to be made, the mold for butter lamb is ready to be filled, and birthday requests have been heard. I am hoping I am able to find the Woody doll Gwyn wants at the store since it is too late to order online. At least she finally gave me a tangible idea, although I can't blame her for asking for a trip to Disney, after all she is my daughter, she dreams pretty big! After presents are bought, all I have to do is find a new way to actually give them to Gwyn. Last year I gave her a riddled message and a map to find her treasures. My pirate loving daughter was thrilled and has reminded me how cool it was. I am thinking I will need to figure out how to top that. Here's hoping inspiration strikes fast! No matter what I do, the next few days will be bubbling with uncensored childhood commotion and I will be taking the time to breathe in the playfulness, allowing myself to be carefree with my three before these magical moments disappear.
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