My beautiful Heartbreak
I’ve been thinking about this song all week. Its definitely my theme song right now. Here are the lyrics to the song Beautiful Heartbreak by Hilary weeks (a link to the songs music video is at the bottom, its wonderful so if you have a minute, watch it!)
I had it all mapped out in front of me,
Knew just where I wanted to go;
But life decided to change my plans,
And I found a mountain in the middle of my road.
I knew there was no way over it,
So I searched for a way around;
Brokenhearted I started climbin',
And at the top I found...
Every fear, every doubt,
All the pain I went through;
Was the price that I paid to see this view;
And now that I'm here I would never trade...
The grace that I feel,
And the faith that I find;
Through the bitter-sweet tears,
And the sleepless nights;
I used to pray he'd take it all away,
But instead it became a beautiful heartbreak.
I never dreamed my heart would make it,
I thought about turning around;
But heaven has shown me miracles,
I never would have seen from the ground.
Now I take the rain with the sunshine,
Cause there's one thing that I know;
He picks up the pieces,
Along each broken road.
Every fear, every doubt,
All the pain I went through;
Was the price that I paid to see this view;
And now that I'm here I would never trade...
The grace that I feel,
And the faith that I find;
Through the bitter-sweet tears,
And the sleepless nights.
I used to pray he'd take it all away,
But instead it became a beautiful heartbreak.
I would never trade...
The grace that I feel,
And the faith that I find;
Through the bitter-sweet tears,
And the sleepless nights.
I used to pray he'd take it all away,
But instead it became a beautiful heartbreak.
I never really thought I would be were I am now. I never expected “this” to be my mountain to climb. Here I am. A single mother to 3 beautiful sweet boys. The oldest being special needs and has a progressive disease. The other 2 having their own unique needs and health issues as well. Life right now is definitely a rollercoaster. Filled with the chaos that comes with my kids. I’ve been on this journey now for awhile. Realizing this is my beautiful heartbreak. Life will always be hard, stressful and crazy. But, it will be amazing! There will be joy! Learning to dance in the rain. This song is exactly how I feel. I would never trade the feelings I have now. I have truly found the greatest joy being the mother to my sweet boys. I want them to be able to look back and know that they where the most important things and I never gave up. Even when things where hard. Even when I felt alone and felt the weight of the world on my shoulders, I never gave up. I want my children to know that God loves us. He has blessed me with the strength to be their mom. He trusts me. He trusts me to be everything they need me to be. He knows that I can. Now I just have to believe I can. I’m trying to focus on just enjoy the precious time I have with my children. I know that there will be more tears. I know many more sleepless nights spent in hospital rooms I will have. But I know He will be there for me. He will be there to pick up the pieces and lift me up. There will be pain. But I know that will make the joy and the miracles so much sweeter. I know I will have days I will slide down the mountain and not be able to see this. It will feel too much and I won’t remember I have the strength to carry on. I just pray I can remember the joy will come again. I’ll be listening to this song during our lengthy hospital stay next week to keep me going.This is my beautiful heartbreak.
The video of the song.
http://www.youtube.com/watch?v=xyX-I-um5Kk
Tuesday, January 31, 2012
Wednesday, October 19, 2011
Mitochondrial disease awareness week
Mitochondrial disease awareness week was a couple weeks ago. I wanted to have this video of Jackson done before then but it just didn't happen. but its ready now and I wanted to share the video here. Please take a few minutes to watch this video about Jackson.
http://www.onetruemedia.com/shared?p=f6228c4f65364f1df9528c&skin_id=1602&utm_source=otm&utm_medium=text_url
http://www.onetruemedia.com/shared?p=f6228c4f65364f1df9528c&skin_id=1602&utm_source=otm&utm_medium=text_url
Thursday, March 17, 2011
Noah turns 2!
I'm a little behind on things but I really want to get the blog caught back up. Noah turned 2 the end of January. He's such a little cutie wearing this adorable birthday shirt with a football on it. Footballs are by far his most favorite thing in the world to play with. He calls them buh balls. We have one of those rope buckets that has all of the balls in it and its completely full of different balls but several footballs Noah has collected. We took the boys out to eat on his birthday. They loved it! The next weekend we had a little family party for him with cousins and stuff.
More about sweet little Noah. He is a very active little boy. Climbing, running, and jumping everywhere. You can tell he has such a natural athletic ability. He can throw balls with aim, kick a soccer ball everywhere. He loves to wrestle and can pull Jackson down,who's double his weight, and roll him over to pin him. He LOVES balls and has long as he has one he's happy no matter what we're doing. He adores his big brother and wants to be doing everything he does. He anxiously waits by the door every day for Jackson to come home from school and screams with joy when he sees the bus. He loves to snuggle, give hugs and kisses.
Noah's oral motor skills are improving. He no longer needs his liquids thickened and he's finally not coughing when he drinks something. He's eating and chewing a lot more. He's even had 2 new foods this week and loved them! We have an appointment next week for his 2 year check up and to check his weight. We'll find out how he's doing weight wise. I don't think he's continuing to loose weight but he's not gaining much either. His talking is also improving and he has lots of words now. Most of them are pretty cute to hear him say them and some of them I'm the only one who can understand. He's even had a few phrases so overall he's doing really good. He's still getting OT and speech every week and he's doing better when they come over.
His "cheese" face
Blowing out the candle on his cake!
I wanted to make him his birthday cake and improve on last years cake but my health just wasn't up to it. But I did bake this chocolate cake from scratch.
The boys after the party. Noah loved his brother Jackson's lightning mcqueen blanket so he got one of his for his birthday.
He also got some farm animals and a new ball.
Here are some cute pictures of the 2 year old who loves to dress himself.
Here are some cute pictures of the 2 year old who loves to dress himself.
More about sweet little Noah. He is a very active little boy. Climbing, running, and jumping everywhere. You can tell he has such a natural athletic ability. He can throw balls with aim, kick a soccer ball everywhere. He loves to wrestle and can pull Jackson down,who's double his weight, and roll him over to pin him. He LOVES balls and has long as he has one he's happy no matter what we're doing. He adores his big brother and wants to be doing everything he does. He anxiously waits by the door every day for Jackson to come home from school and screams with joy when he sees the bus. He loves to snuggle, give hugs and kisses.Noah's oral motor skills are improving. He no longer needs his liquids thickened and he's finally not coughing when he drinks something. He's eating and chewing a lot more. He's even had 2 new foods this week and loved them! We have an appointment next week for his 2 year check up and to check his weight. We'll find out how he's doing weight wise. I don't think he's continuing to loose weight but he's not gaining much either. His talking is also improving and he has lots of words now. Most of them are pretty cute to hear him say them and some of them I'm the only one who can understand. He's even had a few phrases so overall he's doing really good. He's still getting OT and speech every week and he's doing better when they come over.
Tuesday, March 15, 2011
Snow on spring break
Jackson is on spring break this week from school. The first day we got about 4 inches of snow. What a way to start off his break. Hoping for nicer weather the rest of the week. But I thought I would share some pictures of the boys playing in the snow this past month. We had some great snowfalls and the boys loved playing outside. We didn't get out as much as they would of liked because of my health and Jackson's temp issues. But we had a lot of fun!
Making snow angels
Jackson had his own little shovel and helped us shovel the driveway!
Thursday, March 10, 2011
Jackson's new chair
Yesterday we went and picked up Jackson's convaid cruiser. Which is a adaptive stroller/wheelchair. Jackson immediately got in and said he loved it!! It looks so comfy and I know its going to be such a big help. It's been a big process in getting it so its a huge relief to have it now. A little over a year ago we started looking into getting one of these for Jackson. We knew there was a process and would take some time to get. At the time Jackson was 3.5 years old and was having a lot problems walking and fatigue. With the way he was growing we need we didn't have much longer in any regular strollers. We talked to his doctors and they all agreed he would need one. We first got the referral to see the right physical therapist. She wanted to have several visits with him to see what his needs,strengths and weaknesses where. After a few months of seeing her she sent her recommendation to the seating clinic and we got an appointment there. That was a couple months wait. During that appointment we went over everything and the different options there where. Jackson got to pick out the color of his chair and out of the 5 colors he picked blue. Jackson has 2 different insurance companies so we submitted to the primary first and they completely denied it(this is very typical, I've even heard of children that can't walk at all being denied wheelchairs, its sad). After waiting for them to say it was denied we then submitted to secondary. We heard back from them and they approved it but we had to a good amount of out of pocket expense. After the insurance came through and we paid our portion they where able to order the parts and have it made. After a year of requesting his chair they called on monday to say it was in and we could pick it up this week. I was thrilled!
For those wondering why Jackson needs a wheelchair I'll explain a little. Jackson has low muscle tone and its much harder for him to do things requiring his muscles. He also has a lot of fatigue and very quickly wears out. He can walk and some days more then others. On days he's weaker he can't walk farther 20 yards before falling and needing to be carried. He also has other issues like a lot of pain and other various medical problems that having the chair can help. Now at almost 5 there is no way he can fit in a regular stroller at all and wouldn't support him very well in areas where is muscle tone is affected more. Since he has a mitochondrial disease,which is a progressive disease, he will continue to have problems with increasing fatigue and muscle weakness. As he gets older he maybe able to walk more but his tone and fatigue will not improve and most likely get worse. This chair has a lot of growth room in it and hoping it will last him about 5 years. That will be about when he's 8 or 9 that we would have to start looking where he's at then and seeing if he will need a bigger one or not.
This chair will be such a great help to us and him. Since he can't walk very far he gets carried a lot. He's a solid built boy weighing in at 48 lbs. Thats a lot to be carrying around every where. Also when we go anywhere like stores and such he has to be in the cart. Its difficult for him because its very uncomfortable for him and does not support him at all. He's really big to riding in the grocery cart. Plus its hard for me to lift him in and out of it. Then with 2 kids in the cart there's no room for groceries and such. Jackson will be able to do a lot more, go a lot more places, and will be a lot better with less fatigue and pain. He'll also be able to take this to school and hopefully he'll do better and last longer at school. He'll feel a lot better being in something that is supportive of him properly.
I only have one concern now that we have this. Any time we go out Jackson will need to be in his chair. I'll have to other children as well. The new baby I'll most likely carry in a wrap, sling or baby carrier. Then I'll have Noah who's 2, very active, and likes to run around. I'm not sure what to do with him. I fear if he's walking next to us that he'll run off and I'll have a hard time catching him running with a baby and pushing a wheelchair. As he gets older this won't be as much of an issue because he'll understand more. But at 2 I can't expect him to never walk off. Hopefully we'll figure out something.
Jackson's chair from the side with his tray on.
Jackson in his chair with the shade on it
For those wondering why Jackson needs a wheelchair I'll explain a little. Jackson has low muscle tone and its much harder for him to do things requiring his muscles. He also has a lot of fatigue and very quickly wears out. He can walk and some days more then others. On days he's weaker he can't walk farther 20 yards before falling and needing to be carried. He also has other issues like a lot of pain and other various medical problems that having the chair can help. Now at almost 5 there is no way he can fit in a regular stroller at all and wouldn't support him very well in areas where is muscle tone is affected more. Since he has a mitochondrial disease,which is a progressive disease, he will continue to have problems with increasing fatigue and muscle weakness. As he gets older he maybe able to walk more but his tone and fatigue will not improve and most likely get worse. This chair has a lot of growth room in it and hoping it will last him about 5 years. That will be about when he's 8 or 9 that we would have to start looking where he's at then and seeing if he will need a bigger one or not.
This chair will be such a great help to us and him. Since he can't walk very far he gets carried a lot. He's a solid built boy weighing in at 48 lbs. Thats a lot to be carrying around every where. Also when we go anywhere like stores and such he has to be in the cart. Its difficult for him because its very uncomfortable for him and does not support him at all. He's really big to riding in the grocery cart. Plus its hard for me to lift him in and out of it. Then with 2 kids in the cart there's no room for groceries and such. Jackson will be able to do a lot more, go a lot more places, and will be a lot better with less fatigue and pain. He'll also be able to take this to school and hopefully he'll do better and last longer at school. He'll feel a lot better being in something that is supportive of him properly.
I only have one concern now that we have this. Any time we go out Jackson will need to be in his chair. I'll have to other children as well. The new baby I'll most likely carry in a wrap, sling or baby carrier. Then I'll have Noah who's 2, very active, and likes to run around. I'm not sure what to do with him. I fear if he's walking next to us that he'll run off and I'll have a hard time catching him running with a baby and pushing a wheelchair. As he gets older this won't be as much of an issue because he'll understand more. But at 2 I can't expect him to never walk off. Hopefully we'll figure out something.
Jackson's chair from the side with his tray on.
Jackson in his chair with the shade on it
Monday, January 24, 2011
24 weeks baby
I'm now 24 weeks pregnant. That means the baby is now viable and has a chance of survival(about 50%) if he where to come now. It feels really good to get to this point. After loosing 2 pregnancies before and the scare we had last week I feel better this week. Now we just need to come up with a name for this little guy. Michael and I can't agree on anything. He has a couple of names that he likes that I don't. I have a huge list of names that I like,none that I love, and he hates all of them.
I've had a pretty rough time this pregnancy. I've developed an autonomic dysfunction causing me to have pretty severe tachycardia(really fast heartrate). Since my heart is racing all of the time it puts stress on my body. I saw a cardioligist just before Christmas and he said the way your body feels is like being in congestive heart failure.(I'm not in heart failure its just the way my body feels). We've been having a hard time finding a treatment for this and one that we can do while I'm pregnant. Not much luck so far. We've just been having to deal with me feeling horrible most of the time. Thats why I haven't blogged at all lately.
Last week we had a little bit of scare. I was getting Noah up from his nap and I was standing at the top of the stairs. I don't remember what happened next but the next thing I know is I'm almost all the way down an entire flight of stairs. I grabbed the railing but we where at the bottom already. Noah was fine and held my neck the entire time. I think he was mostly scare and cried for a few minutes but then got up and started playing. Thankfully he was fine. I was unable to move at first then got up and realized how much pain I was in. I called my midwife and she sent me to labor/delivery. They put me on the monitor and I was having some contractions. They weren't constant but I was having quite a few. After they checked out the baby for awhile and made sure the baby was doing ok they sent me down to the ER to get checked out. My tailbone was broken but not much they could do for that. There was some questions if had broken my neck and so I had to have some xrays of my neck and shoulder. Nothing else was broken just bruised,cut and sprained all over. They where able to do some incredible blood tests to make sure the baby was doing ok. All of the test came back really good. The baby was doing fine. But I was still having contractions so they sent me back upstairs to labor/delivery to be monitored. I had to go 6 hours without having contractions before I could go home. Thankfully during the night around 2 they stopped and I was able to go the next morning. I'm feeling better now just have the broken tail bone which makes things difficult when trying to play or take care of the kids. The next day I went back to meet with my midwife and to recheck the baby to make sure everything was still fine. I'm really glad I went with the midwife I did. I'm still getting care from and midwife who's trying to help me have a natural pregnancy/delivery but she is also in a group that is at the hospital that has and OB over them that was giving the medical orders while I was in the hospital. I knew the OB that was treating me and she knew my history and wants for my pregnancy. Hopefully things will get better from here. No more going up and down the stairs for me especially while carrying Noah. Its been a week and he's starting to get used scooting down the stairs with me instead of me picking him up.
I've had a pretty rough time this pregnancy. I've developed an autonomic dysfunction causing me to have pretty severe tachycardia(really fast heartrate). Since my heart is racing all of the time it puts stress on my body. I saw a cardioligist just before Christmas and he said the way your body feels is like being in congestive heart failure.(I'm not in heart failure its just the way my body feels). We've been having a hard time finding a treatment for this and one that we can do while I'm pregnant. Not much luck so far. We've just been having to deal with me feeling horrible most of the time. Thats why I haven't blogged at all lately.
Last week we had a little bit of scare. I was getting Noah up from his nap and I was standing at the top of the stairs. I don't remember what happened next but the next thing I know is I'm almost all the way down an entire flight of stairs. I grabbed the railing but we where at the bottom already. Noah was fine and held my neck the entire time. I think he was mostly scare and cried for a few minutes but then got up and started playing. Thankfully he was fine. I was unable to move at first then got up and realized how much pain I was in. I called my midwife and she sent me to labor/delivery. They put me on the monitor and I was having some contractions. They weren't constant but I was having quite a few. After they checked out the baby for awhile and made sure the baby was doing ok they sent me down to the ER to get checked out. My tailbone was broken but not much they could do for that. There was some questions if had broken my neck and so I had to have some xrays of my neck and shoulder. Nothing else was broken just bruised,cut and sprained all over. They where able to do some incredible blood tests to make sure the baby was doing ok. All of the test came back really good. The baby was doing fine. But I was still having contractions so they sent me back upstairs to labor/delivery to be monitored. I had to go 6 hours without having contractions before I could go home. Thankfully during the night around 2 they stopped and I was able to go the next morning. I'm feeling better now just have the broken tail bone which makes things difficult when trying to play or take care of the kids. The next day I went back to meet with my midwife and to recheck the baby to make sure everything was still fine. I'm really glad I went with the midwife I did. I'm still getting care from and midwife who's trying to help me have a natural pregnancy/delivery but she is also in a group that is at the hospital that has and OB over them that was giving the medical orders while I was in the hospital. I knew the OB that was treating me and she knew my history and wants for my pregnancy. Hopefully things will get better from here. No more going up and down the stairs for me especially while carrying Noah. Its been a week and he's starting to get used scooting down the stairs with me instead of me picking him up.
Monday, November 22, 2010
Mito
Jackson's been having a lot of health issues lately and we've been seeing some new doctors as well. I wanted to update family and friends on how he's doing but it's difficult when most don't understand whats going on. Also some people have been asking questions about what exactly is going on with Jackson and why things are the way they are, so I wanted to explain a little bit about what it is Jackson is dealing with.
Ever since Jackson was born he's had a variety of symptoms, seen countless doctors, had lots of tests and procedures. His current main diagnosis is mitochondrial disease. Mito is a difficult thing to diagnose and, for many people, requires many tests over long period of time to find out for certain if they have it. A lot of doctors say that it's "as clear as mud" in trying to figure things out. For Jackson we are still in the process of finding the exact cause, so he has a "clinical" mito diagnosis. We haven't found the exact genetic mutation, but the doctors feel Jackson meets the clinical picture, and many tests point to mito being what he has. Because of the nature of this disease we are treating him as if we know for sure he has it.
I wanted to explain a little bit about what mitochondrial disease is.
What is Mitochondrial Disease
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection
Prognosis
As more research dollars are raised to find more effective treatments and ultimately a cure, some of the affected children and adults are living fairly normal lives with mitochondrial disease. At the opposite end of the spectrum, many are severely affected, and some children do not live past their teenage years.
When are they at greatest risk?
The child or adult is at risk for neurological or organ damage during and for the two weeks following an illness. Therefore even a simple flu or cold virus can have devastating effects on the patient, even death. Any illness must be treated immediately with medical interventions, like IV fluids and IV antibiotics.
You can find out more about mito on the website umdf.org
There is no cure for mitochondrial disease. The only treatments are treating symptoms that can be managed and taking the "mito cocktail". The cocktail is group of supplements that help the body improve function and may slow the progression of the disease. Jackson has recently started taking some of the supplements and we've some great improvements.
Some of the symptoms that Jackson deals with that are common in mito:
Developmental delays, autistic features, dysautonomia(temperature,blood pressure and blood sugars mostly), seizures, Weakness, cramping, dysmotility, hypotonia, muscle pain, diarrhea/constipation, fatigue, cyclic vomiting syndrome and other various symptoms.
Jackson is getting a stroller/wheelchair very soon. This is very common for children that have mito. It's mostly because of how quickly he fatigues and gets weak. Its also for his pain. Jackson's fatigue varies day to day. Some days he's able to walk and play then there's days that he needs help walking more then 10 yards. The stroller will allow him to do more on the days he's to weak to walk and also on the days that aren't too bad preserve his energy for more important things.
Ever since Jackson was born he's had a variety of symptoms, seen countless doctors, had lots of tests and procedures. His current main diagnosis is mitochondrial disease. Mito is a difficult thing to diagnose and, for many people, requires many tests over long period of time to find out for certain if they have it. A lot of doctors say that it's "as clear as mud" in trying to figure things out. For Jackson we are still in the process of finding the exact cause, so he has a "clinical" mito diagnosis. We haven't found the exact genetic mutation, but the doctors feel Jackson meets the clinical picture, and many tests point to mito being what he has. Because of the nature of this disease we are treating him as if we know for sure he has it.
I wanted to explain a little bit about what mitochondrial disease is.
What is Mitochondrial Disease
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection
Prognosis
As more research dollars are raised to find more effective treatments and ultimately a cure, some of the affected children and adults are living fairly normal lives with mitochondrial disease. At the opposite end of the spectrum, many are severely affected, and some children do not live past their teenage years.
When are they at greatest risk?
The child or adult is at risk for neurological or organ damage during and for the two weeks following an illness. Therefore even a simple flu or cold virus can have devastating effects on the patient, even death. Any illness must be treated immediately with medical interventions, like IV fluids and IV antibiotics.
You can find out more about mito on the website umdf.org
There is no cure for mitochondrial disease. The only treatments are treating symptoms that can be managed and taking the "mito cocktail". The cocktail is group of supplements that help the body improve function and may slow the progression of the disease. Jackson has recently started taking some of the supplements and we've some great improvements.
Some of the symptoms that Jackson deals with that are common in mito:
Developmental delays, autistic features, dysautonomia(temperature,blood pressure and blood sugars mostly), seizures, Weakness, cramping, dysmotility, hypotonia, muscle pain, diarrhea/constipation, fatigue, cyclic vomiting syndrome and other various symptoms.
Jackson is getting a stroller/wheelchair very soon. This is very common for children that have mito. It's mostly because of how quickly he fatigues and gets weak. Its also for his pain. Jackson's fatigue varies day to day. Some days he's able to walk and play then there's days that he needs help walking more then 10 yards. The stroller will allow him to do more on the days he's to weak to walk and also on the days that aren't too bad preserve his energy for more important things.
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