It seems that no matter how many time I hear the cardiologist say "Asher's heart function looks great", I still take Asher to his Cardiology appointments with a lump in my throat and a pit in my stomach. I don't breath properly until he says at the end of the 3 hour appointment "Asher's heart function looks great!"....it's often a long 3 hours until that part!
Jesse and I took Asher over a week ago to his 6 month check up at the Cardiologist. 6 months is incredible considering there was a time, not so long ago, that we were in that office every 2 weeks if not more frequently! At the end of his appointment the cardiologist decided to do a 24 hr holter to see what his heart rate and rhythm were doing. We had reported noticing frequent runs of irregular beats and rates. The plan had been to let him out grow the current dose of antiarrhythmia med, but the Dr. decided that didn't seem like a good plan if he was having break through runs of A.E.T (Atrial Ectopic Tachecardia).
The Cardiologist called last night (of course at the exact second I was trying to get the kids out of the house to get Joel to his Playmakers dress rehersal!) and said he didn't like what the holter showed. He was having many runs of A.E.T. and he was confused as to why he was. He's on the maximum dose of his med, and it's been over 12 months since we discontinued the 2nd med to help conrol, so why now? I offered a hypothesis that it could be his asthma meds that were introduced right around the same time as these break through runs. He thought that seemed impossible according to all of the "literature" on the meds, but said to monitor closely now that we took him off of the asthma meds, even rate checks in the night.
Well, my hypothesis was wrong. Asher was up in the night with irregular rhythms. He hates to be alone during these runs and especially if it's at night. It was a long night! He woke up this morning still irregular.
I feel disappointed for a few reasons. First, I just said to myself after last week, we have no London appointments now until Spring!!! I celebrated that even! And now, we have to go back every couple of weeks for 24 Holters until they decide on how to manage these runs. Not a big deal, but still I'm disappointed that the "break" I was looking forward to, isn't so much of a break after all.
Second, it's a few days away from December. The month of December still comes with much tenderness in my heart. The pain of having to leave Asher in the hospital for his first Christmas is healing, but the wound is still sore to touch. Making changes in heart meds in December causes some discomfort for me. The thought of introducing a 2nd med or dose changes in December is disappointing. I'd rather have a December that isn't "touched" by things that can risk hospitalization.
Third, I know we've come so far, I was especially reminded of this last week when we celebrated being down to 1 med! Asher came home on 6+ meds! With the daily antibiotics discontinued last week, we were so excited to be down to 1! We now, may need to add the 2nd heart med back to his rate management. And yes, I want it to be under control, and yes it seems "minor" in the grand scheme of things, and yes we've done 6 meds/day, so what's 2 again? But it just adds to the feeling of a step backwards instead of forwards.
It's also really hard to be encouraged when you're exhausted and over tired! I do know that God is faithful, and absolutely I want the absolute best and will do anything he needs to keep him healthy and well and thriving! I just needed to "vent" a little on the disappointments so I can move on in peace knowing that God has a plan, and I can rest in it. This is just all part of the journey.
Tuesday, November 27, 2012
Tuesday, October 16, 2012
A look at Asher's 2 year progress!
As all you parents know, doctor check ups almost always go along with a 2nd birthday!
Last week Asher say his paediatrician for a 2 year check up and she was so amazed by the progress and gains Asher has made!
His Progress has been so exciting to watch - this time last year he was still struggling to maintain neck control and could not sit unassisted! But now he is:
Cruising along furniture and walls
Walking with his toy walker
Crawling upstairs
Signing more than 20 signs consistently and appropriately and saying a few words like mom, dad, all done etc.
Gaining balance while standing
Pull up to standing and sitting up from lying down (both of these took a long time for him to master so the milestone seems HUGE!)
He is down to 2 medicines and hopefully one will be discontinued before Christmas! (He started at 6+ when he was 3 months old and home!)
Drinking Homo milk 3x a day with one bottle of formula or pediasure!
He weighs 22.44 lbs and is 68cm tall! And while that is still below the 5th% - he's ON the CHARTS! The doctor was so pleased, she knows how hard we fight for every ounce that he gains! (If only the same excitement could be shared when I gain an ounce!!) :)
Yesterday he had his speech and language assessment by our home visiting SLP and she said he is in the 18-21 month range and many "emerging skills" that are in the 24+ month range! He has caught up so well with his communication since his hearing aids have been in place! His last assessment in May showed that he was over 9 months "delayed" in communication....the gap is closing! :)
We are looking forward to a recreational therapist helping Asher out this winter! She will be assisting him in the pool! He has been terrified of swimming and pools so we are really hoping he will begin to like the water through this therapy!
We are so amazed every day with the gains and strides Asher is making - every milestone is such a victory for him!
Last week Asher say his paediatrician for a 2 year check up and she was so amazed by the progress and gains Asher has made!
His Progress has been so exciting to watch - this time last year he was still struggling to maintain neck control and could not sit unassisted! But now he is:
Cruising along furniture and walls
Walking with his toy walker
Crawling upstairs
Signing more than 20 signs consistently and appropriately and saying a few words like mom, dad, all done etc.
Gaining balance while standing
Pull up to standing and sitting up from lying down (both of these took a long time for him to master so the milestone seems HUGE!)
He is down to 2 medicines and hopefully one will be discontinued before Christmas! (He started at 6+ when he was 3 months old and home!)
Drinking Homo milk 3x a day with one bottle of formula or pediasure!
He weighs 22.44 lbs and is 68cm tall! And while that is still below the 5th% - he's ON the CHARTS! The doctor was so pleased, she knows how hard we fight for every ounce that he gains! (If only the same excitement could be shared when I gain an ounce!!) :)
Yesterday he had his speech and language assessment by our home visiting SLP and she said he is in the 18-21 month range and many "emerging skills" that are in the 24+ month range! He has caught up so well with his communication since his hearing aids have been in place! His last assessment in May showed that he was over 9 months "delayed" in communication....the gap is closing! :)
We are looking forward to a recreational therapist helping Asher out this winter! She will be assisting him in the pool! He has been terrified of swimming and pools so we are really hoping he will begin to like the water through this therapy!
We are so amazed every day with the gains and strides Asher is making - every milestone is such a victory for him!
Friday, October 12, 2012
An Anniversary To Remember....
* Please do not be alarmed at the length of this entry, yes it is long, perhaps it's more for me than you, however, it had to come out, I had to share....Blessing can come out of hurt and pain, I have proof! What I have written comes from the deepest parts of my heart and I want to share it with you.*
Yesterday marked the second anniversary of Asher's life being saved. Yes, his life has been saved multiple times, buy various physicians, nurses and surgeons, but this time was different, no one knew he needed to be saved until two people stepped in and took over.
Without recounting every vivid detail of that night, I remember holding Asher in my arms trying to feed him a bottle when a nurse popped her head in the door to let me know that her name was Lori and that she was our nurse coming on shift that night. She looked at Asher from the doorway and asked me if he always breathed that quickly and had trouble drinking (milk was pouring out from the sides of his mouth) and I answered yes. She told me that she was going to call the midwife. A little while later she returned to tell me the midwife had asked her to call the paediatrician on call and she was waiting for her to arrive to investigate further.
I was alone (Jesse was home getting Joel & Calla tucked in for the night) when the paediatrician said they wanted to do a chest x-ray to see if he had a chest infection. Jesse returned and the paediatrician told us she felt his heart was slightly on the large side and was sending the image to the Cardiologist in London. Then, at 1 a.m. he was transferred to London to their critical care unit.
In order to share about my experience yesterday, I need to back up!
Leading up to this moment, there were 36 hours of "red flags" that, in retrospect, anyone should have been able to know that something was wrong. Some of the concerns we had were heard and explained, others we observed with no explanation given.
Asher's feet and hands were blue, they said it was from the ink from his prints. (He had had a bath!) Asher was always sleeping and cried when he was moved. He would not even wake up to eat, they said some newborns are just sleepy. His blood pressures were different on each arm and they told us it was because a student nurse did the pressures and it was not redone right away. He had a heart murmur which can be common in newborns, they said it would go away sometime in the first week. He failed his infant hearing screen, they told us that can happen and he would be retested in a month. We now know, that during those hours with Asher, we were holding a dying baby. Had Lori not called the paediatrician and the "red flags" went unchecked, Asher would have died in his sleep within the next few hours as his fetal functions shut down.
Lori, the nurse caught so much in the 3 minutes she was at our door. She listened to her instincts that said something is wrong and she did not give up until Asher had the care he required.
For the first year of Asher's life, I was not angry at the fact that all of those symptoms went unchecked. I didn't have time to be angry, I was just thankful they saved his life! However, slowly, over the second year of his life, anger began to creep into my heart. I would say out loud when recounting the story, "I'm not angry, they saved his life, that's all that matters" but in my heart, the overwhelming sadness and anger would be raging.
Last month, the month before his second birthday, I retold the story to a friend who hadn't hear the details of those early days. For the following week, I cried every day. I was angry, sad, afraid and just outright mad. I shuddered at the thought "Asher could have died right under their noses!" I was consumed all week by these feelings of anger. I said to Jesse, "I am glad God performed miracles through those two people to save Asher, but I'm ANGRY that He had to step in and that others didn't do their job!" I was horrified at the thought of other families experiencing similar situations at Stratford Hospital. I was so consumed by my feelings that I emailed our Social Worker to ask her to meet with me to talk about how to work through everything in my head. She agreed to meet with me the following Thursday.
The Wednesday before I was to meet with her, Asher was in Stratford hospital, in that same ward. As I walked the halls to get to his room, I struggled to maintain my composure. A familiar nurse came to his room to check on us, I told her I was upset and wanted to talk to the manager or whomever could listen. I was physically shaking and inside I was fighting it, I did NOT want to go through the story let alone with someone who may not care. The nurse was so caring and took me to see the Floor Manager (who is new since 2011 - the ward was without one for 10 years!).
I sat and shared my story for over an hour, with tears, laughter and pain, this manager cared. She cried with me, took notes and expressed her concern that something like that could happen to us. She took down recommendations and we talked about things that could have been done differently. She was sincere and loving...she thanked me over and over for telling her and for helping other families by doing so. I mentioned the nurse, Lori, and she was thrilled, because in her "books" Lori was one of the best!
That meeting was full of healing for me. It took the anger away and replaced it with thanksgiving and joy. I can now truly say, I am thankful that they saved Asher and that God intervened. I am no longer in pain over what "wasn't" done. Only thankful for what "was" done!
Getting back to yesterday's anniversary! Asher had an appointment scheduled for the day before he turned 2 this week with his paediatrician. His paediatrician happens to be the one who saved his life (that is another miracle story for another post!). They called and had to reschedule it for the day after his birthday and I agreed.
Yesterday morning I woke up and realized it was the anniversary of her saving him! I called the floor manager at the hospital and said I was coming to town and would like to meet Lori again to say thank you and for her to see Asher. She said, "oh no, she was on yesterday and is on nights later this week, let me check her schedule". She came back and said "Lisa, you won't believe it, she is here today! Come in later this afternoon".
I picked up two beautiful bouquets of fall flowers and went to Stratford. When the doctor came to the waiting room to get us, I told her it was the anniversary of her saving Asher and that we wanted to thank her and I gave her the flowers. She cried and we hugged. The connection we have is beautiful because of that night that she saved him.
After the appointment, I nervously went to the hospital. I knew I had to do this, but I wanted it to be how God wanted it to be, a chapter closing. I had to thank Lori so that I could move on from that night. I wanted to be clear and to share honestly from my heart.
The floor manager went and found her and brought her to us. She said "this is Lisa and Asher" and I said "I don't know if you remember us but..." Lori said "Yes, yes, I do....I remember very well!" As I explained why I was there I gave her the flowers, with more tears, more hugs, and I felt such a release of emotions that had been stored up for 2 years! I said, "Lori, thank you for trusting your gut and intervening!". She told me that Asher taught her to do that! She said before then she would not want to speak up especially if no one else saw the problem....but since Asher she now listens and speaks up! She thanked us for coming and asked lots about how Asher is now and the details that followed that night....she was grateful to be part of his story. I left saying to the manager, "now I'm done....I've done what I needed to do". She thanked me and said the world needs more people like me who will give back and let go of the hurt.
It's not through my own strength that all of this has been able to happen. Yesterday was God ordained in so many ways, just like Oct. 11 was 2 years ago! Honestly, for 2 years it's as though my heart has been used for a game of hot potato with toddlers....being squeezed, thrown, dropped, pressed, scratched and bruised. But through that whole "game" God protected it. None of those things caused long term damage, in fact, he made my heart better than it was before. I had no idea so much blessing and joy could come from so much hurt and pain. But God truly restores. Actually, restores isn't sufficient....he restores and makes things even better! It may not feel like it during the thick of those emotions, but He truly does and for that I am so thankful.
Yesterday was an anniversary to remember, a privilege to be used by God while He healed my heart. Thank you God!
Yesterday marked the second anniversary of Asher's life being saved. Yes, his life has been saved multiple times, buy various physicians, nurses and surgeons, but this time was different, no one knew he needed to be saved until two people stepped in and took over.
Without recounting every vivid detail of that night, I remember holding Asher in my arms trying to feed him a bottle when a nurse popped her head in the door to let me know that her name was Lori and that she was our nurse coming on shift that night. She looked at Asher from the doorway and asked me if he always breathed that quickly and had trouble drinking (milk was pouring out from the sides of his mouth) and I answered yes. She told me that she was going to call the midwife. A little while later she returned to tell me the midwife had asked her to call the paediatrician on call and she was waiting for her to arrive to investigate further.
I was alone (Jesse was home getting Joel & Calla tucked in for the night) when the paediatrician said they wanted to do a chest x-ray to see if he had a chest infection. Jesse returned and the paediatrician told us she felt his heart was slightly on the large side and was sending the image to the Cardiologist in London. Then, at 1 a.m. he was transferred to London to their critical care unit.
In order to share about my experience yesterday, I need to back up!
Leading up to this moment, there were 36 hours of "red flags" that, in retrospect, anyone should have been able to know that something was wrong. Some of the concerns we had were heard and explained, others we observed with no explanation given.
Asher's feet and hands were blue, they said it was from the ink from his prints. (He had had a bath!) Asher was always sleeping and cried when he was moved. He would not even wake up to eat, they said some newborns are just sleepy. His blood pressures were different on each arm and they told us it was because a student nurse did the pressures and it was not redone right away. He had a heart murmur which can be common in newborns, they said it would go away sometime in the first week. He failed his infant hearing screen, they told us that can happen and he would be retested in a month. We now know, that during those hours with Asher, we were holding a dying baby. Had Lori not called the paediatrician and the "red flags" went unchecked, Asher would have died in his sleep within the next few hours as his fetal functions shut down.
Lori, the nurse caught so much in the 3 minutes she was at our door. She listened to her instincts that said something is wrong and she did not give up until Asher had the care he required.
For the first year of Asher's life, I was not angry at the fact that all of those symptoms went unchecked. I didn't have time to be angry, I was just thankful they saved his life! However, slowly, over the second year of his life, anger began to creep into my heart. I would say out loud when recounting the story, "I'm not angry, they saved his life, that's all that matters" but in my heart, the overwhelming sadness and anger would be raging.
Last month, the month before his second birthday, I retold the story to a friend who hadn't hear the details of those early days. For the following week, I cried every day. I was angry, sad, afraid and just outright mad. I shuddered at the thought "Asher could have died right under their noses!" I was consumed all week by these feelings of anger. I said to Jesse, "I am glad God performed miracles through those two people to save Asher, but I'm ANGRY that He had to step in and that others didn't do their job!" I was horrified at the thought of other families experiencing similar situations at Stratford Hospital. I was so consumed by my feelings that I emailed our Social Worker to ask her to meet with me to talk about how to work through everything in my head. She agreed to meet with me the following Thursday.
The Wednesday before I was to meet with her, Asher was in Stratford hospital, in that same ward. As I walked the halls to get to his room, I struggled to maintain my composure. A familiar nurse came to his room to check on us, I told her I was upset and wanted to talk to the manager or whomever could listen. I was physically shaking and inside I was fighting it, I did NOT want to go through the story let alone with someone who may not care. The nurse was so caring and took me to see the Floor Manager (who is new since 2011 - the ward was without one for 10 years!).
I sat and shared my story for over an hour, with tears, laughter and pain, this manager cared. She cried with me, took notes and expressed her concern that something like that could happen to us. She took down recommendations and we talked about things that could have been done differently. She was sincere and loving...she thanked me over and over for telling her and for helping other families by doing so. I mentioned the nurse, Lori, and she was thrilled, because in her "books" Lori was one of the best!
That meeting was full of healing for me. It took the anger away and replaced it with thanksgiving and joy. I can now truly say, I am thankful that they saved Asher and that God intervened. I am no longer in pain over what "wasn't" done. Only thankful for what "was" done!
Getting back to yesterday's anniversary! Asher had an appointment scheduled for the day before he turned 2 this week with his paediatrician. His paediatrician happens to be the one who saved his life (that is another miracle story for another post!). They called and had to reschedule it for the day after his birthday and I agreed.
Yesterday morning I woke up and realized it was the anniversary of her saving him! I called the floor manager at the hospital and said I was coming to town and would like to meet Lori again to say thank you and for her to see Asher. She said, "oh no, she was on yesterday and is on nights later this week, let me check her schedule". She came back and said "Lisa, you won't believe it, she is here today! Come in later this afternoon".
I picked up two beautiful bouquets of fall flowers and went to Stratford. When the doctor came to the waiting room to get us, I told her it was the anniversary of her saving Asher and that we wanted to thank her and I gave her the flowers. She cried and we hugged. The connection we have is beautiful because of that night that she saved him.
After the appointment, I nervously went to the hospital. I knew I had to do this, but I wanted it to be how God wanted it to be, a chapter closing. I had to thank Lori so that I could move on from that night. I wanted to be clear and to share honestly from my heart.
The floor manager went and found her and brought her to us. She said "this is Lisa and Asher" and I said "I don't know if you remember us but..." Lori said "Yes, yes, I do....I remember very well!" As I explained why I was there I gave her the flowers, with more tears, more hugs, and I felt such a release of emotions that had been stored up for 2 years! I said, "Lori, thank you for trusting your gut and intervening!". She told me that Asher taught her to do that! She said before then she would not want to speak up especially if no one else saw the problem....but since Asher she now listens and speaks up! She thanked us for coming and asked lots about how Asher is now and the details that followed that night....she was grateful to be part of his story. I left saying to the manager, "now I'm done....I've done what I needed to do". She thanked me and said the world needs more people like me who will give back and let go of the hurt.
It's not through my own strength that all of this has been able to happen. Yesterday was God ordained in so many ways, just like Oct. 11 was 2 years ago! Honestly, for 2 years it's as though my heart has been used for a game of hot potato with toddlers....being squeezed, thrown, dropped, pressed, scratched and bruised. But through that whole "game" God protected it. None of those things caused long term damage, in fact, he made my heart better than it was before. I had no idea so much blessing and joy could come from so much hurt and pain. But God truly restores. Actually, restores isn't sufficient....he restores and makes things even better! It may not feel like it during the thick of those emotions, but He truly does and for that I am so thankful.
Yesterday was an anniversary to remember, a privilege to be used by God while He healed my heart. Thank you God!
Wednesday, October 10, 2012
You Are Two!
As I woke up this morning, the memories of Asher's birth came flooding back. When I opened my eyes and saw the clock, it was around that time when I was waiting to go into the O.R. to have an emergency C-Section to get Asher out. I was in the most physical pain I had ever experienced and the waiting seemed endless. Thinking back on those emotions, the feelings, the fear, I do also clearly remember a peace that kept me calm and focused. A peace that I had never experienced before.
Two years later, I can sit here and share, that God's peace has taken our whole family through a journey of pain and joy, fear and excitement, leaving us a stronger, healthier, closer and more grateful, loving family. God knew what we needed, and he gave us Asher as that gift.
This year, it is a joy to reflect back on the past year and see how far God has brought Asher!
We are blessed by the progress and milestones are spectacular in light of his history!
I really do not have much more to say this morning, with a heart of gratitude I will celebrate my little man's life! In 13 minutes he will officially be 2! My heart does not have room for much more joy, how thankful I am for this gift of life!
Happy Birthday Asher! YOU ARE TWO!!
Two years later, I can sit here and share, that God's peace has taken our whole family through a journey of pain and joy, fear and excitement, leaving us a stronger, healthier, closer and more grateful, loving family. God knew what we needed, and he gave us Asher as that gift.
This year, it is a joy to reflect back on the past year and see how far God has brought Asher!
We are blessed by the progress and milestones are spectacular in light of his history!
I really do not have much more to say this morning, with a heart of gratitude I will celebrate my little man's life! In 13 minutes he will officially be 2! My heart does not have room for much more joy, how thankful I am for this gift of life!
Happy Birthday Asher! YOU ARE TWO!!
Tuesday, September 18, 2012
White or Whole Wheat....
I don't often refer to Asher as a "special needs" child despite his diagnosis and medical history. To me, his mama, he is my little buggaboo....my precious miracle who lives every day with laughter and smiles, kisses and lots of hugs!
With that said, our world is different than it was before Asher was born. A world filled with a whole other language (that we had to learn on the fly), specialists for parts of the body that I did not even know existed, and decisions that are on a whole other scale...those decisions weigh far more than I ever thought possible! I don't exaggerate by saying, the decisions we are often required to make can lead to life or death situations for Asher. The symptoms that seem unimportant in a medically stable child, can change Asher's life forever given his medical conditions. His heart and his breathing has the most to do with those decisions, as it turns out, bother are rather important to living!
I have found it challenging lately to explain how this affects a person long term to those who have never been in this situation. It's not the same as having a child with an ear infection and after 10 days of antibiotics life goes on as per normal. It's a life long commitment of daily choices that affect Asher's well being.
Our life is no longer filled with what now seem like easy questions "should we feed our children white or whole wheat bread?" "What is an appropriate bed time for a 6 yr old?". It is filled with things like, will this medicine I am giving Asher so he can breath easier raise his heart rate to a dangerous rate? How do we treat bronchitis when nothing is working and he isn't able to breath well? If I go to sleep, will Asher wake up in the night with his heart racing and irregular and I'll have to have the presence of mind to call the Cardiologist on call, pack a bag and drive to London at any given hour? How will Joel and Calla feel to find their mom and brother gone with the time of their return unknown? How do we maintain "normal" when everything isn't very normal? How do we socialize with people without fear of picking up germs and causing Asher to become sick? How do we keep all of us healthy during the fall/winter and still continue to go to church and worship with our church family? How do we explain to our extended family, yet again, that we can't have a family function at the family farm where we live because someone is sick and we don't want Asher to catch it from them? How do I treat Asher like a typical boy when all I want to do is put him into a bubble!? How do I answer the question "how old is he" when people in public ask....because when I answer with the truth, they give me a blank stare, and even sometimes ask then why is he so small!?
This list of questions is not exhaustive! It's a glimpse into the things that we think about almost daily. And the last thing I want is for people to feel bad for us. We have an incredibly blessed life, full of love and hope (and adventure!). I do, however, wish I could find a better way to help people understand that it is a heavy weight at times and it's not always easy.
On most days, Asher looks so healthy and well that I think it's difficult for people (physicians included) to remember that he has a host of extra needs and complications. Our lives don't continue on "as per usual" when we leave the doctors office with a cold.
Tonight, as Asher is in the hospital to be seen by the pediatrician on call...I am thankful for the care he receives. It's hard though to be home with Joel and Calla while Jesse waits with Asher....
With that said, our world is different than it was before Asher was born. A world filled with a whole other language (that we had to learn on the fly), specialists for parts of the body that I did not even know existed, and decisions that are on a whole other scale...those decisions weigh far more than I ever thought possible! I don't exaggerate by saying, the decisions we are often required to make can lead to life or death situations for Asher. The symptoms that seem unimportant in a medically stable child, can change Asher's life forever given his medical conditions. His heart and his breathing has the most to do with those decisions, as it turns out, bother are rather important to living!
I have found it challenging lately to explain how this affects a person long term to those who have never been in this situation. It's not the same as having a child with an ear infection and after 10 days of antibiotics life goes on as per normal. It's a life long commitment of daily choices that affect Asher's well being.
Our life is no longer filled with what now seem like easy questions "should we feed our children white or whole wheat bread?" "What is an appropriate bed time for a 6 yr old?". It is filled with things like, will this medicine I am giving Asher so he can breath easier raise his heart rate to a dangerous rate? How do we treat bronchitis when nothing is working and he isn't able to breath well? If I go to sleep, will Asher wake up in the night with his heart racing and irregular and I'll have to have the presence of mind to call the Cardiologist on call, pack a bag and drive to London at any given hour? How will Joel and Calla feel to find their mom and brother gone with the time of their return unknown? How do we maintain "normal" when everything isn't very normal? How do we socialize with people without fear of picking up germs and causing Asher to become sick? How do we keep all of us healthy during the fall/winter and still continue to go to church and worship with our church family? How do we explain to our extended family, yet again, that we can't have a family function at the family farm where we live because someone is sick and we don't want Asher to catch it from them? How do I treat Asher like a typical boy when all I want to do is put him into a bubble!? How do I answer the question "how old is he" when people in public ask....because when I answer with the truth, they give me a blank stare, and even sometimes ask then why is he so small!?
This list of questions is not exhaustive! It's a glimpse into the things that we think about almost daily. And the last thing I want is for people to feel bad for us. We have an incredibly blessed life, full of love and hope (and adventure!). I do, however, wish I could find a better way to help people understand that it is a heavy weight at times and it's not always easy.
On most days, Asher looks so healthy and well that I think it's difficult for people (physicians included) to remember that he has a host of extra needs and complications. Our lives don't continue on "as per usual" when we leave the doctors office with a cold.
Tonight, as Asher is in the hospital to be seen by the pediatrician on call...I am thankful for the care he receives. It's hard though to be home with Joel and Calla while Jesse waits with Asher....
Sunday, September 16, 2012
Asher's Cardiac Story for Cardiac Kids Foundation
http://www.gabriellesride.com/meet-asher.htm
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Wednesday, September 12, 2012
"Don't Cry Over Spilt Milk"
The last few months have been really good in so many ways. There have been challenging days, but for the most part we have been able to grow as a family and enjoy some quality time together without a lot of hospital stays or appointments.
This fall, I have taken on the role of homeschool mom. Not because it is something I ever thought of wanting to do, mostly because it's been something God has been asking me to do for several years and I have kept saying no. This past spring, Jesse and I decided it was time to make the decision one way or another....either take on the challenge, or put it to rest and support our kids through their public education! After much prayer, counsel and thought, I realized that since Asher was born I have had to overcome a lot of fears, vows and selfishness and really, when it comes down to it, we have had to teach him a lot of what he knows now - gross motor, fine motor, and otherwise. I decided that if I could walk through the challenges of raising a special needs son, then God would surely have to give me the grace and strength to walk through the days of homeschooling two healthy intelligent children.
We are blessed to have Joel and Calla who want to learn - are desperate to learn and at every opportunity are digging deeper for facts, truth and general knowledge about just about anything that come their way.
That is all just some background to the story. This blog isn't about homeschooling... it is more about about me tonight. Right now, where I am at and who I am.
Lately I feel like I have been posting status updates and pictures on facebook that paint rosy little snapshots of our lives. And I have not embellished or lied about any of it. I don't post something unless I truly feel it, did it or see it etc. But those moments, those small glimpses into our lives don't tell the complete story do they. For any of us really, not just for me and my family.
So, at the risk of putting myself out there for all to see, I feel full disclosure is required. Not so you know every gritty detail of my life. Not so you feel bad and think wow her life is hard. Not so you think why is she telling us this - does she really think her life is that much harder than ours? No, the reason is to reveal an underlying truth. God saves me every day. In the flesh I am just like everyone else - I make mistakes and there are really hard days. But every day I wake up to new mercies and for that I am forever grateful.
Here, in point form are some random facts (the good, the bad, and the ugly) about my life as it is right now:
I get overwhelmed easily.
I cry when I listen to the song "Healer" in the van taking Asher to appts. because I believe it and it reminds me of when we would play it for him on the ipod in Critical Care.
I don't however cry when I sing "Healer" to Calla (along with Kari Jobe) every night when she plays it on her CD player as she falls asleep.
I don't always think it's "fair" that God asks so much of me. Some days the requirements make me want to kick and scream and through a toddler fit.
I never thought about having children when I was growing up, I had far more "selfish" ambitions then to think about having kids.
I now don't regret for a moment that I never pursued those ambitions and that I am home with three kids.
My kids - mostly my oldest, drive me CRAZY! I love them, but honestly, we do not always get along.
It is not unheard of for me to tell my husband that "I quit" whatever the task may be before me.
My husband graciously encourages me even when I say "I quit" over and over!
I feel like I can no longer relate to many people since having Asher.
I have a whole new set of people I can relate to since having Asher and have a whole new set of ministry opportunities since having Asher.
My back hurts at the end of most days (if not sooner than the end of the day!)
I have to ask my kids for forgiveness when I get upset too easily or when lose my temper.
Today....Calla spilt milk, it made Asher cry, then in turn (as it was a really challenging day) made me cry.
I found it difficult to teach my kids not to cry over spilt milk today, when I, their strong mother, was crying like an infant over the very same spilt milk.
And that's as honest as it gets tonight....
This fall, I have taken on the role of homeschool mom. Not because it is something I ever thought of wanting to do, mostly because it's been something God has been asking me to do for several years and I have kept saying no. This past spring, Jesse and I decided it was time to make the decision one way or another....either take on the challenge, or put it to rest and support our kids through their public education! After much prayer, counsel and thought, I realized that since Asher was born I have had to overcome a lot of fears, vows and selfishness and really, when it comes down to it, we have had to teach him a lot of what he knows now - gross motor, fine motor, and otherwise. I decided that if I could walk through the challenges of raising a special needs son, then God would surely have to give me the grace and strength to walk through the days of homeschooling two healthy intelligent children.
We are blessed to have Joel and Calla who want to learn - are desperate to learn and at every opportunity are digging deeper for facts, truth and general knowledge about just about anything that come their way.
That is all just some background to the story. This blog isn't about homeschooling... it is more about about me tonight. Right now, where I am at and who I am.
Lately I feel like I have been posting status updates and pictures on facebook that paint rosy little snapshots of our lives. And I have not embellished or lied about any of it. I don't post something unless I truly feel it, did it or see it etc. But those moments, those small glimpses into our lives don't tell the complete story do they. For any of us really, not just for me and my family.
So, at the risk of putting myself out there for all to see, I feel full disclosure is required. Not so you know every gritty detail of my life. Not so you feel bad and think wow her life is hard. Not so you think why is she telling us this - does she really think her life is that much harder than ours? No, the reason is to reveal an underlying truth. God saves me every day. In the flesh I am just like everyone else - I make mistakes and there are really hard days. But every day I wake up to new mercies and for that I am forever grateful.
Here, in point form are some random facts (the good, the bad, and the ugly) about my life as it is right now:
I get overwhelmed easily.
I cry when I listen to the song "Healer" in the van taking Asher to appts. because I believe it and it reminds me of when we would play it for him on the ipod in Critical Care.
I don't however cry when I sing "Healer" to Calla (along with Kari Jobe) every night when she plays it on her CD player as she falls asleep.
I don't always think it's "fair" that God asks so much of me. Some days the requirements make me want to kick and scream and through a toddler fit.
I never thought about having children when I was growing up, I had far more "selfish" ambitions then to think about having kids.
I now don't regret for a moment that I never pursued those ambitions and that I am home with three kids.
My kids - mostly my oldest, drive me CRAZY! I love them, but honestly, we do not always get along.
It is not unheard of for me to tell my husband that "I quit" whatever the task may be before me.
My husband graciously encourages me even when I say "I quit" over and over!
I feel like I can no longer relate to many people since having Asher.
I have a whole new set of people I can relate to since having Asher and have a whole new set of ministry opportunities since having Asher.
My back hurts at the end of most days (if not sooner than the end of the day!)
I have to ask my kids for forgiveness when I get upset too easily or when lose my temper.
Today....Calla spilt milk, it made Asher cry, then in turn (as it was a really challenging day) made me cry.
I found it difficult to teach my kids not to cry over spilt milk today, when I, their strong mother, was crying like an infant over the very same spilt milk.
And that's as honest as it gets tonight....
Tuesday, July 10, 2012
My Strength Comes From You
Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am.
Philipians 4:13 - The Message
Monday, July 9, 2012
New Look!
After blogging about Asher's story for over a year and a half, I have been left feeling disheveled and disconnected from any type of order. I was randomly writing and sharing what was new or what God was speaking to me. There was nothing "wrong" with my method, but I wanted something different!
I wanted to be able to organize Asher's progress, stories and info in an easier layout! So, after looking at different blog options. I think I have settled into this as the best way to organize it all. I will be adding different pages with more details on Asher's story, about CHARGE Syndrome, and the journey we are on.
I am really looking forward to getting organized and letting the reader have a glimpse into our lives. As we walk this road, writing has been a great outlet for me and while I do it, I hope that it can be a source of encouragement to those who happen to read it. Perhaps after we get set up, maybe Jesse will consider joining me with some blog entries from his perspective as a Dad with three kids, one with Special Needs.
Have a beautiful sunny Monday!
Lisa
I wanted to be able to organize Asher's progress, stories and info in an easier layout! So, after looking at different blog options. I think I have settled into this as the best way to organize it all. I will be adding different pages with more details on Asher's story, about CHARGE Syndrome, and the journey we are on.
I am really looking forward to getting organized and letting the reader have a glimpse into our lives. As we walk this road, writing has been a great outlet for me and while I do it, I hope that it can be a source of encouragement to those who happen to read it. Perhaps after we get set up, maybe Jesse will consider joining me with some blog entries from his perspective as a Dad with three kids, one with Special Needs.
Have a beautiful sunny Monday!
Lisa
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