Tuesday, January 31, 2012
Pneumonia. Times three.
Here I sit again.....while my sons lungs try to recover from another infection. This is the third pneumonia admission in three months. I know that it's a chronic problem. It's also a very fearful one. Sitting all day in a hospital room starts to wear on your sanity after awhile. All of these antibiotics and why does this child have to suffer so much. ? Yesterday on my way bringing Daniel to the hospital I saw a bumper sticker....it said "psalm 91". Which made my weird mind think of TUCK number 91 for the NY Giants. I ordered Thomas a jersey and I hope it comes in. But , yes, alas I did review Psalm 91. And it is so appropriate as we sit here fighting infection.
Friends and family make this so much less of a burden. And I am thankful beyond words for the continued support...food, gas cards, money, visits, phone calls, cards, and especially the prayers and love. Daniel has a very long road to travel. A very very serious spinal surgery will straighten the spine to put less compromise on the lungs. But the surgery itself is terrible and getting through recovery will be crazy.
For now, we sit at CCMC in Hartford fighting off the infection and I am missing my normal life. I miss Sarah and Thomas. Daniel was supposed to get a haircut today.. Such a normal thing. We just can't seem to get there. Or anywhere. I am so worried about this boy. Pneumonia is terribly dangerous. This hospital incarcerated Mom is now going to try to nap..... No sleep to be had last night.
Wednesday, January 18, 2012
The Support Beam.
The feelings I contain do not prevail in relevance
I'm in this on my own
Alone and holding up the camp of many others
I place both hands upon the ceiling
And with what strength I have left I keep the building steady
And they come and and they go
And they laugh and they fight...around me
But I am here. They have no fear. Until life is faced without me.
Julie Hasselberger
1/18/12
Dear God,
I pray today that in my weakness which is also my strength you will lighten this load that I hold up. My shoulders are so tired Lord. My hands are aching with the pressure of just holding up the needs of so many. Lord you gave your son so that I could be saved. How could I possibly be worthy of that. Lord I humble my needs and humble myself and ask that you forgive me and hold me up as your daughter. I know Lord...deep inside the depths of my heart that I may be holding up the fortress of these figurative walls...but Lord you are beneath me. My brace. And I thank you. I praise you. I give all I have and all I am to you Lord. Its been a rough ride lately...with illness and financial pressures and struggles that just hurt the heart and test the soul........Lord...you readily have proven, justified your goodness and you have provided and sustained me. Today my therapist told me that my current life...they way I am living emotionally is mentally "unsustainable". And I just pray Lord that you will help me process this. I do not know what to do. I need you Lord. I know you hear prayer and through the magic of my words I present prayer not only in my mind but in my words.
Look after the children this evening, Lord... the children who are suffering...who can't speak, who can't eat, who have trach tubes, who have trouble walking, who can't walk at all, who are disfugured, who are deaf, who are blind who are g tube fed....or who have emotional scars that are tearing their little hearts apart. I pray for the children...and I pray for the caregivers that you will touch hearts and move mountains. Make your miracles known Lord... please. This is my prayer.
In your glorious name.
Amen.
January18, 2012
The feelings I contain do not prevail in relevance
I'm in this on my own
Alone and holding up the camp of many others
I place both hands upon the ceiling
And with what strength I have left I keep the building steady
And they come and and they go
And they laugh and they fight...around me
But I am here. They have no fear. Until life is faced without me.
Julie Hasselberger
1/18/12
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| What will happen if the roots give way??? |
Dear God,
I pray today that in my weakness which is also my strength you will lighten this load that I hold up. My shoulders are so tired Lord. My hands are aching with the pressure of just holding up the needs of so many. Lord you gave your son so that I could be saved. How could I possibly be worthy of that. Lord I humble my needs and humble myself and ask that you forgive me and hold me up as your daughter. I know Lord...deep inside the depths of my heart that I may be holding up the fortress of these figurative walls...but Lord you are beneath me. My brace. And I thank you. I praise you. I give all I have and all I am to you Lord. Its been a rough ride lately...with illness and financial pressures and struggles that just hurt the heart and test the soul........Lord...you readily have proven, justified your goodness and you have provided and sustained me. Today my therapist told me that my current life...they way I am living emotionally is mentally "unsustainable". And I just pray Lord that you will help me process this. I do not know what to do. I need you Lord. I know you hear prayer and through the magic of my words I present prayer not only in my mind but in my words.
Look after the children this evening, Lord... the children who are suffering...who can't speak, who can't eat, who have trach tubes, who have trouble walking, who can't walk at all, who are disfugured, who are deaf, who are blind who are g tube fed....or who have emotional scars that are tearing their little hearts apart. I pray for the children...and I pray for the caregivers that you will touch hearts and move mountains. Make your miracles known Lord... please. This is my prayer.
In your glorious name.
Amen.
January18, 2012
Sunday, January 15, 2012
The Gift of a Voice
Last night we went to see our daughter Sarah perform in a Western Connecticut Regional Choir event that she had to audition for and was selected. I have been listening to Sarah play piano, play viola, and sing in musical theatre for several years now. But hearing this music brought emotions to my heart that took me hours to sort out.
The gift of voice. The voice is an instrument. A tool through which you can make beautiful music, make someone feel special, make a difference in the world, or choose to keep silent. Like the written word, the voice can portray so much about a person and what is inside your heart. Your mind.
Listening to this one song in particular... the song called "Water Night" made tears stream down my cheeks at the blending harmonies and the emotional connectivity that these kids... had to this performance. Remembering that these young men and women are still in highschool... made it even more powerful.
People who can open their voice, and share this kind of talent....are special special people. But its not just vocal talent that I am talking about. Not just singing. Its what you sing. Its what you say and how you say it.
If you swear, and belittle people... what kind of love and beauty does that bring to the world. If you try to make someone else feel special each day, and turn your heart away from your own selfish desires... isn't that what living a life of integrity is all about.
I value and look at this young talent as something that is a rare time in history...because these young people will soon be on their way to a life of maturity where they all will be making choices how to use that tool...that instrument.
And what about the children who have no voice? What about the non verbal child who was born without the part of their brain that will allow a voice to be born? Daniel speaks only in limited vowels. He can not sing or recite a poem or say a speech. But he can talk with his heart. He can talk with his hands. He can talk with his eyes. When he reaches up and looks into my eyes and touches my hair he is telling me sweetly that he loves me.
I have this daughter...she is so beautiful. She makes me so proud I could burst. There is no such thing as perfection, and sometimes her words are not quite the best choice. But who in life is perfect... But a voice is a gift, its your instrument to change the course of each moment that happens. Little moments or big moments....use it wisely.
I've always felt that when a musician can find that place where their voice is coming from a place way deep inside them...when they have stepped over the threshold of realization that music is not just sound but a gift...then they are truly truly musicians... If you have ever heard someone sing, and they give you chills and make you cry... well... I think you know what I am talking about.
Today is January 15, 2012. Its absolutely freezing here in Connecticut...about 7 degrees I think. I think its a great day to make some music, or listen to some at least. :)
Julie Hasselberger
The gift of voice. The voice is an instrument. A tool through which you can make beautiful music, make someone feel special, make a difference in the world, or choose to keep silent. Like the written word, the voice can portray so much about a person and what is inside your heart. Your mind.
Listening to this one song in particular... the song called "Water Night" made tears stream down my cheeks at the blending harmonies and the emotional connectivity that these kids... had to this performance. Remembering that these young men and women are still in highschool... made it even more powerful.
People who can open their voice, and share this kind of talent....are special special people. But its not just vocal talent that I am talking about. Not just singing. Its what you sing. Its what you say and how you say it.
If you swear, and belittle people... what kind of love and beauty does that bring to the world. If you try to make someone else feel special each day, and turn your heart away from your own selfish desires... isn't that what living a life of integrity is all about.
I value and look at this young talent as something that is a rare time in history...because these young people will soon be on their way to a life of maturity where they all will be making choices how to use that tool...that instrument.
And what about the children who have no voice? What about the non verbal child who was born without the part of their brain that will allow a voice to be born? Daniel speaks only in limited vowels. He can not sing or recite a poem or say a speech. But he can talk with his heart. He can talk with his hands. He can talk with his eyes. When he reaches up and looks into my eyes and touches my hair he is telling me sweetly that he loves me.
I have this daughter...she is so beautiful. She makes me so proud I could burst. There is no such thing as perfection, and sometimes her words are not quite the best choice. But who in life is perfect... But a voice is a gift, its your instrument to change the course of each moment that happens. Little moments or big moments....use it wisely.
I've always felt that when a musician can find that place where their voice is coming from a place way deep inside them...when they have stepped over the threshold of realization that music is not just sound but a gift...then they are truly truly musicians... If you have ever heard someone sing, and they give you chills and make you cry... well... I think you know what I am talking about.
Today is January 15, 2012. Its absolutely freezing here in Connecticut...about 7 degrees I think. I think its a great day to make some music, or listen to some at least. :)
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| Sarah is the red head in the center |
Monday, January 9, 2012
Medical Bubble
I feel like life is a medical bubble and we are floating around the world inside it. I am trying my hardest as a Mom and Wife....to find the joyful side of me...and yet every corner presents a new challenge and a new need. Do you go to the pharmacy virtually every day??? I do. There are just so many things to pick up, and/or fight medicaid over for Daniel.
Its a new year. I don't know where its going. But I know its taking me along. It would be so wonderful to take the kids on another vacation this year...somewhere warm....because its been a hell of a high stress winter already. Not because of weather....but its the P word. Once in November and once in December. Whats next ....
I have a very very long list of Thank You's to write...to all of you people out there who help us...and especially those who helped and visited during the Christmas season which was a flop due to ....um... being in the ICU.
I still am reeling from the entire toll of what 3 weeks of a very sick Daniel has done to my confidence and pocketbook. I just do what I have to do, you know? The kids have to come first and Daniel is 100% reliant on me for everything...in every way. This makes it EXTREMELY hard for me to get out there and work and have an independent life...
The love I have for this boy Daniel...as we watch him grow now into a young teenager...is so amazing .... we were once told he probably wouldnt make it this far. Proved them wrong....
So for today, On January 9th..2012.... I think about trying to find my focus and productivity chip for the normal things that normal people do....but yet I am still bouncing around in the medical bubble... which is where I belong... until things are settled with the scoliosis and pneumonia susceptibility for young Mr. Daniel...
A shout out of thanks again...and if you've helped me, and I have not thanked you... please know that I'm always so tired but I'm working on it.
I do worry each night about the future...which is my prelude to a prayer about asking Jesus to help me not worry and not to fear that somehow resources will be found and sleep will happen again....
Beyonce Knowles named her baby "Blue Ivy" ...all I can think about is veins. Blue IV.... its the medical bubble thing. Tunnel vision. Pray for me..
Signing off for a nap since I have midnight IV antibiotic duty tonight. Julie :)
Tuesday, January 3, 2012
January Thoughts of Blue and Scoliosis....
When I dreamed of my children and what their lives would be like...never in a million years did I envision the life that I have been led to. Never in a million years.. as the saying goes...did I know that such a love and such a pain could exist interwoven into one tear. Tear upon tear upon tear drop. Dropping down the cheeks of a woman who simply can not bear the worst and who is grateful for the best.
Today is January 3, 2012 and I'm writing in blue because it makes me think of cool ocean waves... and it also makes me think of cold. Contrasts. Its very cold outside....but warm by the fire. On my lap I have a 19 year old cat (Tinker) and a 5 month old Kitten (Theo).
Daniel is recovering from a horrible pneumonia...and on Thursday he goes for a visit to the Orthopedic Doctor... Dr. DeLuca.. one of our favorites...for an evaluation of the scoliosis...and in all liklihood Daniel will be facing spinal fusion surgery... and once again...the sweet wonderful boy with the face of gentle sunshine has to face unrelenting pain and discomfort for however long it takes to straighten his thin frail 14 year old body.
Scoliosis... probably attributing to the two illnesses in two months he has faced... I have been reading things like...
"Lung and heart damage. In severe scoliosis, the rib cage may press against the lungs and heart, making it more difficult to breathe and harder for the heart to pump. In very severe scoliosis, damage to the lungs and the heart can occur. Anytime breathing is compromised, the risk of lung infections and pneumonia increases."
So now I sit...just contemplating. Just remembering my feeling of emptiness on Christmas when I woke up to see Daniel's bedroom empty...and I know that we have to do everything we can to make his life comfortable... I just wish their were an easier way. Contrasts. Why does the sweet gentle kind little soul have to suffer. Why did Christ have to suffer.
I don't know. All I do know is that I am writing in blue tonight because it makes me think of the way I feel when I am by the ocean and I can smell the sea air... and I close my eyes and I am walking there with my feet in warm sand. And all of my children are walking with me.
Blue. Cold and warm. Warm and cold. Blue in my heart.... but not in my soul.
Julie Hasselberger January 2012
Today is January 3, 2012 and I'm writing in blue because it makes me think of cool ocean waves... and it also makes me think of cold. Contrasts. Its very cold outside....but warm by the fire. On my lap I have a 19 year old cat (Tinker) and a 5 month old Kitten (Theo).
Daniel is recovering from a horrible pneumonia...and on Thursday he goes for a visit to the Orthopedic Doctor... Dr. DeLuca.. one of our favorites...for an evaluation of the scoliosis...and in all liklihood Daniel will be facing spinal fusion surgery... and once again...the sweet wonderful boy with the face of gentle sunshine has to face unrelenting pain and discomfort for however long it takes to straighten his thin frail 14 year old body.
Scoliosis... probably attributing to the two illnesses in two months he has faced... I have been reading things like...
"Lung and heart damage. In severe scoliosis, the rib cage may press against the lungs and heart, making it more difficult to breathe and harder for the heart to pump. In very severe scoliosis, damage to the lungs and the heart can occur. Anytime breathing is compromised, the risk of lung infections and pneumonia increases."
So now I sit...just contemplating. Just remembering my feeling of emptiness on Christmas when I woke up to see Daniel's bedroom empty...and I know that we have to do everything we can to make his life comfortable... I just wish their were an easier way. Contrasts. Why does the sweet gentle kind little soul have to suffer. Why did Christ have to suffer.
I don't know. All I do know is that I am writing in blue tonight because it makes me think of the way I feel when I am by the ocean and I can smell the sea air... and I close my eyes and I am walking there with my feet in warm sand. And all of my children are walking with me.
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| Hampton Beach, NH one of our favorite places ever..... |
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| Ice against Blue Winter 2011 |
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| Snow everywhere winter 2011 |
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| Ice.... |
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| Cold but dripping from the warmth of the sun... |
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| Naples, FL water temperature was 88 degrees |
Blue. Cold and warm. Warm and cold. Blue in my heart.... but not in my soul.
Julie Hasselberger January 2012
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