I just finished reading Donna's story. She is a beautiful little girl, just a few months older than my Little Guy who fought a courageous fight with pediatric cancer. In the second to last installment, Choosing Hope, Donna's mom tells of sending a prayer every day to the Rebbe's grave: "May she live until she dies." This morning I realized that a similar line was in the song "The Fighter." I have found that song so inspirational and am working on a slide show of Little Guy's story to go along with the song. I pray that I can teach that to my kids and help them to live a life of hope; to live until they die.
The phrase "treasure in earthen vessels" is coming to mind. We have bodies that can be so frail and succumb to cancer or fibrous dysplasia, but life is such a treasure. Little Guy shows that every day rushing head first into enjoying everything. It is frequently said by anyone that works with Little Guy that he has one speed: Fast! It is so hard at time to see him struggle with something and have to stop. The ironic thing is that other's don't see this side. They don't realize when he has found a way to play sitting down it is because of the fatigue. Like at his last Den meeting, he became the weapons vendor sitting in the garage and the other boys kept coming to him for more. Yesterday we snuck away to McDonald's after his Bible class. He played in the play structure, but it was short lived and soon was ready to go home. Despite what he is feeling, Little Guy is finding a way to live life and have fun and that is what others are seeing in him.
2 Corinthians 4:7-9, 17
7 But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us.
8 We are troubled on every side, yet not distressed; we are perplexed, but not in despair;
9 Persecuted, but not forsaken; cast down, but not destroyed;
17 For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;
Monday, October 1, 2012
Friday, September 21, 2012
You can see more about it at http://www.fibrousdysplasia.org/index.php?page=6
Monday, September 10, 2012
School has started. We had a meeting with 9 adults to make sure everything was set for Sam to go back to school. That they knew what he could and could not, or more accurately was not supposed to do. One thing they asked me to do was make something to show the other first graders what was going on with Sam and how to best play with him. I did this power point presentation for this. There is no sound for this and it goes kind of fast for reading some of the slides, sorry.Use the pause button. One of these days I'll make a full fledge presentation set to music.
Thursday, July 19, 2012
The Fighter
I found the song for Sam that sums up what he does:
If you fall pick yourself up off the floor (get up)
And when your bones can't take no more (c'mon)
Just remember what you're here for
Cuz I know Imma damn sure
Give em hell, turn their heads
Gonna live life til we're dead.
Give me scars, give me pain
Then they'll say of me, say of me, say of me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say of me, say of me, say of me,
This one's a fighter
Sam's a fighter!
If you fall pick yourself up off the floor (get up)
And when your bones can't take no more (c'mon)
Just remember what you're here for
Cuz I know Imma damn sure
Give em hell, turn their heads
Gonna live life til we're dead.
Give me scars, give me pain
Then they'll say of me, say of me, say of me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say of me, say of me, say of me,
This one's a fighter
Sam's a fighter!
Friday, July 13, 2012
One Week Ago.....
Friday July 6. Daddy took us all, except Aric who was at a movie with a friend, to DQ for some lunch. We got back home and daddy went right in and laid down a bit before going to work. I waited on the kids to get out of the car on the hot summer day. Once in the house Sam called dibs on the computer. I went up to the bathroom. It was to hot a day to leave my hair down. Then came the scream. Apparently Sam ran to go to the bathroom quickly before someone else could get the computer, and tripped on the stairs. Richard and I ran downstairs and found him on the bottom two steps, screaming and saying "I think I broke a bone." Richard moved Sam to a chair and looked at his leg and said there was a bulge and thought it was broken. He called off work and we decided to call for an ambulance.
The ambulance took us to Regions. Sam liked me to hold his leg. IV was started in the ambulance and pain meds started and continued in the ER. In the ER we were put in the same room that 2 years ago Sam's oldest brother was put in after a tree fell on him while we were at a family reunion. I had to fight back tears when I realized this. More meds, nurses and doctors came in. One doctor took his history down and was amazed at how long it was. We finally went for x rays. They took me to a waiting area that was two rooms and down a hall from the x ray room. I could hear him screaming as they positioned him for the x rays. When they finally came and got me and we went back to the ER room, the nurse told me that Sam said, "That was horrific!" when it was over. It was broken right where the bone graft was. A lot of waiting and finally I was told we would be admitted to Gillette and a Dr. Ogilvie was going to operate first thing in the morning and put in a plate. That didn't sound right to me.
When we got up to our Gillette room, I talked to the nurses and told them what I was told of the plan in the ER and that I was not happy with it. I wanted Dr Healy's input before surgery happened. A couple hours later, the nursing supervisor came in and told me that she talked to Dr Healy and that he was able to take over the case from the other doctor. Dr Healy would come in on his day off and do surgery! I was so relieved.
The night was about keeping Sam comfortable. At one point he wet the bed and that was a rough change of bedding with 5 people helping. The morphine he was being given via IV was starting to make him dizzy. He would grab the sides of the bed and scream for everyone to stop moving the bed.
The next day surgery was delayed twice, first Dr Healy pushed it back from 10:30 to noon and then an emergency came in and pushed it back until about 3. I think it was close to 4 when they finally took him back for surgery. I had been playing a bedtime relaxation album I had on my old phone for him and he took it back to the OR with him. It was the first time I was not able to go back. I was told by a couple of people afterwards that they were impressed with how much it helped him and how relaxed he was going off to sleep.
The surgery went well, though it did take a couple tries and bent nails to get through the sight of the bone graft, but they finally did without opening the sight of the fracture. Drugs were switched to help with the dizzy spells. We finally went back to his room. by bed time he was able to start on oral meds and other then another wet bed had a fairly good night.
Sunday was spent keeping comfortable. Sam feel asleep right as PT came by and took a 3 hour nap so it was put off until the next day. Monday he seemed a little worse off. He took three different naps and hated PT. Two years ago PT was focused on me being able to safely move him. Now he is bigger and my back is worse off so PT was focused on him getting up and walking with the walker short distances to be able to move to bathroom and bed and such. By the end of the evening his temperature was up to 102, but it fortunately was short lived. It did explain why he was so out of it for a good portion of the day though.
Tuesday we did one more PT and finally was able to go home. Once home he spent some time downstairs Tuesday. It took us about a half hour to scoot up the stairs. Wednesday and Thursday he spent the whole upstairs in bed. Friday morning he finally seemed to turn the corner and improve. He asked to come down stairs and did not need pain meds as much.
June 12 we had seen Dr Healy and Sam was cleared from most restrictions. I was finally beginning to let down my guard so to speak and think we were in the clear. I was even thinking about getting him a two wheel bike. Now all that has changed. This post has taken a couple of days to write out. Yesterday, 12 days after the accident, he realized, with tears, that he can't go to a water park now. I assured him it was just for a little bit.
The ambulance took us to Regions. Sam liked me to hold his leg. IV was started in the ambulance and pain meds started and continued in the ER. In the ER we were put in the same room that 2 years ago Sam's oldest brother was put in after a tree fell on him while we were at a family reunion. I had to fight back tears when I realized this. More meds, nurses and doctors came in. One doctor took his history down and was amazed at how long it was. We finally went for x rays. They took me to a waiting area that was two rooms and down a hall from the x ray room. I could hear him screaming as they positioned him for the x rays. When they finally came and got me and we went back to the ER room, the nurse told me that Sam said, "That was horrific!" when it was over. It was broken right where the bone graft was. A lot of waiting and finally I was told we would be admitted to Gillette and a Dr. Ogilvie was going to operate first thing in the morning and put in a plate. That didn't sound right to me.
When we got up to our Gillette room, I talked to the nurses and told them what I was told of the plan in the ER and that I was not happy with it. I wanted Dr Healy's input before surgery happened. A couple hours later, the nursing supervisor came in and told me that she talked to Dr Healy and that he was able to take over the case from the other doctor. Dr Healy would come in on his day off and do surgery! I was so relieved.
The night was about keeping Sam comfortable. At one point he wet the bed and that was a rough change of bedding with 5 people helping. The morphine he was being given via IV was starting to make him dizzy. He would grab the sides of the bed and scream for everyone to stop moving the bed.
The next day surgery was delayed twice, first Dr Healy pushed it back from 10:30 to noon and then an emergency came in and pushed it back until about 3. I think it was close to 4 when they finally took him back for surgery. I had been playing a bedtime relaxation album I had on my old phone for him and he took it back to the OR with him. It was the first time I was not able to go back. I was told by a couple of people afterwards that they were impressed with how much it helped him and how relaxed he was going off to sleep.
The surgery went well, though it did take a couple tries and bent nails to get through the sight of the bone graft, but they finally did without opening the sight of the fracture. Drugs were switched to help with the dizzy spells. We finally went back to his room. by bed time he was able to start on oral meds and other then another wet bed had a fairly good night.
Sunday was spent keeping comfortable. Sam feel asleep right as PT came by and took a 3 hour nap so it was put off until the next day. Monday he seemed a little worse off. He took three different naps and hated PT. Two years ago PT was focused on me being able to safely move him. Now he is bigger and my back is worse off so PT was focused on him getting up and walking with the walker short distances to be able to move to bathroom and bed and such. By the end of the evening his temperature was up to 102, but it fortunately was short lived. It did explain why he was so out of it for a good portion of the day though.
Tuesday we did one more PT and finally was able to go home. Once home he spent some time downstairs Tuesday. It took us about a half hour to scoot up the stairs. Wednesday and Thursday he spent the whole upstairs in bed. Friday morning he finally seemed to turn the corner and improve. He asked to come down stairs and did not need pain meds as much.
June 12 we had seen Dr Healy and Sam was cleared from most restrictions. I was finally beginning to let down my guard so to speak and think we were in the clear. I was even thinking about getting him a two wheel bike. Now all that has changed. This post has taken a couple of days to write out. Yesterday, 12 days after the accident, he realized, with tears, that he can't go to a water park now. I assured him it was just for a little bit.
Process
Life has been busy, a good busy with activities and all that goes with four kids in a family. I think I probably said this in a previous post. Things are changing a bit though. March marks time for the 6 month follow ups with endcornology and orthopedics. Also Sam has had a few headaches of late so I made an appointment with nuerosurgery too for the follow up.
In his last conference two weeks ago, I met with Sam's classroom teacher, and three other teachers who work Sam through out a week. There is also a para, who does not attend conferences. General concensus is that sam is busy and innattentive and it is causing problems acedemically and socially. The week before I had been in the classroom and was shocked to see the level of his distractablility. I emailed his teacher after this and in her reply she said, "Sam is in constant motion and at this time exhibits little attention to task. He is not yet working independently." So we are adding another doctor to all we have seen at Gillette, nuerodevelopmental ped.
In process.
.........
This was originally written the end of February. In process refers to a women's discipleship program I participate in at my church. February's theme was In Process. Kristi Kerr spoke about how we are in process, growing as a christian. It really spoke to me as this has been a long process we are on.
In his last conference two weeks ago, I met with Sam's classroom teacher, and three other teachers who work Sam through out a week. There is also a para, who does not attend conferences. General concensus is that sam is busy and innattentive and it is causing problems acedemically and socially. The week before I had been in the classroom and was shocked to see the level of his distractablility. I emailed his teacher after this and in her reply she said, "Sam is in constant motion and at this time exhibits little attention to task. He is not yet working independently." So we are adding another doctor to all we have seen at Gillette, nuerodevelopmental ped.
In process.
.........
This was originally written the end of February. In process refers to a women's discipleship program I participate in at my church. February's theme was In Process. Kristi Kerr spoke about how we are in process, growing as a christian. It really spoke to me as this has been a long process we are on.
Today's mail brought four envelopes from Gillette. Sam's vitamin D level dropped almost 20 units over the winter. Some other labs were off too. He is to take prescription vitamin D and more labs in three months. It was hard reading the transcript from the developmental pediatrician. Definite problems. I'm also second guessing the surgery. Hearing is fine. It is late at night and my mind is going.
.................
Trying to catch up here. this was written March 24 and not published as I had more I wanted to write. Now I'm not sure what it was. This past spring we had check ups for orthopaedics, endocrinology and neurosurgery. The above paragraph is about the endocrinology results. We have now finished the prescription vit D and retested with good results his levels are now up to 53. We have to do a 24 hr urine catch still to complete that testing.
Neurosurgery ended up postponed until late spring due to a problem Sam's brother was having. When we finally got in things looked fairly good as far as the chiari goes. He is still having a few headaches a month, but that is livable. What surprised me there was being told for the first time that he has a lesion near his right optic nerve we need to watch over time. We went to a opthomalogist and he is a little nearsighted, not enough for glasses yet, but otherwise OK. So he will have yearly MRIs, neurosurgery and opthomalogy appointments.
Orthopaedics threw me for a loop. It was a six month check up and I assumed all was OK. Well the lesion mid-shaft on his right femur had expanded and Dr Healy was now recommending a bone graft to force his body to heal it. This is kids of controversial as FD bone usually gets "angry" at a bone graft and comes back worse than before. Dr Healy knows this and has told me so. The reason he wanted to do this for Sam was that he had healed the two previous femur fractures so well with very little trace of FD in only one femur. I contacted a doctor in Des Moines, Iowa about it and finally decided to go ahead with it. I think I have told about this surgery else where in this blog.
.................
Trying to catch up here. this was written March 24 and not published as I had more I wanted to write. Now I'm not sure what it was. This past spring we had check ups for orthopaedics, endocrinology and neurosurgery. The above paragraph is about the endocrinology results. We have now finished the prescription vit D and retested with good results his levels are now up to 53. We have to do a 24 hr urine catch still to complete that testing.
Neurosurgery ended up postponed until late spring due to a problem Sam's brother was having. When we finally got in things looked fairly good as far as the chiari goes. He is still having a few headaches a month, but that is livable. What surprised me there was being told for the first time that he has a lesion near his right optic nerve we need to watch over time. We went to a opthomalogist and he is a little nearsighted, not enough for glasses yet, but otherwise OK. So he will have yearly MRIs, neurosurgery and opthomalogy appointments.
Orthopaedics threw me for a loop. It was a six month check up and I assumed all was OK. Well the lesion mid-shaft on his right femur had expanded and Dr Healy was now recommending a bone graft to force his body to heal it. This is kids of controversial as FD bone usually gets "angry" at a bone graft and comes back worse than before. Dr Healy knows this and has told me so. The reason he wanted to do this for Sam was that he had healed the two previous femur fractures so well with very little trace of FD in only one femur. I contacted a doctor in Des Moines, Iowa about it and finally decided to go ahead with it. I think I have told about this surgery else where in this blog.
Monday, July 9, 2012
So Behind...
I am woefully behind in updating my blog on things going on, things like recent appointments, good news, Miracle League, bad news and another fracture. We are currently in the hospital because Sam fractured his femur through the bone graft sight on Friday July 6.
God is amazing and brings things to me at such needed times. After yet another interruption, I had finally given up sleeping this morning at the hospital. It was around 6 am. Hospitals begin to wake up at this time. Night shift nurses make final checks, take vitals and change positions on bed ridden patients like my little guy. Residents come in to check patents before starting their day in clinic appointments or surgeries. The sun was also shining in the room making sleeping difficult for me, so I grabbed my phone and began doing some reading. I checked in with Caring Bridge and read up on some families I am following there. One shared an amazing essay about life with a special needs child. It can be found at http://www.whatiwouldtellyou.com/
God is amazing and brings things to me at such needed times. After yet another interruption, I had finally given up sleeping this morning at the hospital. It was around 6 am. Hospitals begin to wake up at this time. Night shift nurses make final checks, take vitals and change positions on bed ridden patients like my little guy. Residents come in to check patents before starting their day in clinic appointments or surgeries. The sun was also shining in the room making sleeping difficult for me, so I grabbed my phone and began doing some reading. I checked in with Caring Bridge and read up on some families I am following there. One shared an amazing essay about life with a special needs child. It can be found at http://www.whatiwouldtellyou.com/
What I Would Tell You
I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.
I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.
I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.
I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.
If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.
I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.
I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.
I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.
I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.
I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.
I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.
I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.
I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.
I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.
I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.
I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.
I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.
I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.
I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.
But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.
I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.
Julie Keon
June 29th 2011
Not all of it applies to my life with Little Guy but the paragraph about witnessing procedures and surgeries and suffering had me in tears as I remembered Friday evening sitting in a waiting room that was 2 rooms and down a hallway from where Sam was being x-rayed and listening to his screams as they positioned him. He told the nurse afterwards "That was horrific!"
Within minutes of reading this and digesting it. I received a text from a dear friend. It was today's devotional from Jesus Calling by Sarah Young.
July 9
Stop worrying long enough to hear my voice. I speak softly to you, in the depths of your being. Your mind shuttles back and forth, hither and yon, weaving webs of anxious confusion. as My thoughts rise up within you, they become entangled in those sticky webs of worry. Thus my voice is muffled, and you hear only "white noise."
Ask My Spirit to quiet your mind so that you can think My thoughts. This ability is an awesome benefit of being My child, patterned after My own image. Do not be deafened by the noise of the world or that of your own thinking. Instead, be transformed by the renewing of your mind. sit quietly in My presence, letting My thoughts reprogram your thinking.
Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is -His good, pleasing and perfect will.
-Romans 12;2
The two things coming to my attention within minutes of each other amazed me and had me blubbering away. I barely had contained myself before the resident came in. Now to shower and make myself more presentable for the day and myriad of people coming through the room before we will hopefully be able to go home today.
I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.
I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.
I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.
If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.
I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.
I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.
I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.
I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.
I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.
I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.
I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.
I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.
I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.
I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.
I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.
I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.
I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.
I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.
But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.
I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.
Julie Keon
June 29th 2011
Not all of it applies to my life with Little Guy but the paragraph about witnessing procedures and surgeries and suffering had me in tears as I remembered Friday evening sitting in a waiting room that was 2 rooms and down a hallway from where Sam was being x-rayed and listening to his screams as they positioned him. He told the nurse afterwards "That was horrific!"
Within minutes of reading this and digesting it. I received a text from a dear friend. It was today's devotional from Jesus Calling by Sarah Young.
July 9
Stop worrying long enough to hear my voice. I speak softly to you, in the depths of your being. Your mind shuttles back and forth, hither and yon, weaving webs of anxious confusion. as My thoughts rise up within you, they become entangled in those sticky webs of worry. Thus my voice is muffled, and you hear only "white noise."
Ask My Spirit to quiet your mind so that you can think My thoughts. This ability is an awesome benefit of being My child, patterned after My own image. Do not be deafened by the noise of the world or that of your own thinking. Instead, be transformed by the renewing of your mind. sit quietly in My presence, letting My thoughts reprogram your thinking.
Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is -His good, pleasing and perfect will.
-Romans 12;2
The two things coming to my attention within minutes of each other amazed me and had me blubbering away. I barely had contained myself before the resident came in. Now to shower and make myself more presentable for the day and myriad of people coming through the room before we will hopefully be able to go home today.
Thursday, May 31, 2012
Rotten Day
I have a lot to update my blog on. Maybe next week will slow down enough to do so, but I need to say this some where. FD is terrible. It so hurts to see your child hurting. It has been terrible watching him in pain through injuries and surgeries, but today was a whole new level. It was Field Day for Sam's school. Think track and field events turned into fun games for elementary kids. He is still in the wheel chair healing from the bone graft. There was not a whole lot he could do. One of the stations was inflateables. Sam was in tears and so upset he could not participate. He stuck it out longer and got to be the starter for some other events. When we got to the obstacle course in the gym he finally had enough and wanted to go home so I took him out of school early. I'm so broke right now I couldn't offer him much. Next year, I will make sure I have funds available to go to a museum that day or something instead of Field Day at school.
Tuesday, April 17, 2012
I have a quiet house this morning. Sam went back to school today. It is amazing how quick a child can bounce back. After Friday, my last post, he just got better and better. He is now down to just acetaminophen for pain meds and doing great.
Yesterday we went to the library and got Sam his own library card and a bunch of books. Then in the evening he went to his Cub Scout Pack meeting. He won the boot for best showing what a being a Cub Scout is all about!
Friday, April 13, 2012
What a couple of weeks. I am so tired but got some sleep last night.
Sam had his surgery on Wednesday. the day started with jello for breakfast and 15 minutes before the clear liquid cut off, Sam found a Girl Scout Cookie and took a bite. That delayed surgery from 11 am to 1:45. Fortunately Dr Healy worked with us and was able to do it later in the day so we did not have to go through the whole process of getting ready for surgery again. Sam and I passed our time with some movies and playing games. Child life was able to bring us Candy Land (which Sam won twice), Connect Four (we both won at that one), and we were almost done with Chutes and Ladders when they came to take Sam to surgery.
Before surgery we had a good conversation with Dr. Healy about the emails I had been sending back and forth with Dr Lindaman in IA and what exactly does Sam have. Dr Healy was already planning on sending specimens to U of MN again. I mentioned Dr. Collins at NIH who has done lots of research on FD and Dr. Healy took his name down. Before surgery started Dr Healy was able to find contact information and called Dr Collins and left him a message. During surgery Dr Healy also prepared a set of specimens to send to Dr Collins also. Last I heard, Dr Healy still had not heard back from Dr Collins but is going to follow up and it. Got to love a doctor you can talk with and who will take information you bring to the table and act on it!!!
During surgery Dr Healy found the lesion to be very fragile, like and egg shell he said. It took almost nothing to break it and clean it out. he feels Sam would fractured that very soon had nothing been done. Dr Healy also cleaned up the scar on his right thigh that had keloided. It went very well, Sam was sleepy afterwards and it was 5:30 before we went up to his room. He turned into ravenous boy and consumed 5 Popsicles, chicken noodle soup, a sandwich before finally falling asleep again for the night.
It was a fitful night with meds and pain every couple of hours and trouble finding a comfortable way to pee. By morning we were on top of pain and he was doing better. We saw PT at 10 and were on our way to pick up his wheel chair by 1:30. His wheelchair. that seems like it deserves a post of its own but I will likely not get that far. It is so surreal to get a wheel chair for your child. This one his special ordered and built for Sam. It is not a rental.the process began in January. The $6000 ticket will go to insurance.
We got some more sleep last night. The difficult first bowel movement began giving tummy aches last night and making him generally grumpy. That continued into this morning. He finally moved this afternoon and promptly fell asleep again all snuggled into the bean bag with his newest blanket from the hospital.
Thursday, March 22, 2012
8th Surgery
We got in to the nuerodevelopmental ped early due to a cancellation. There is definite concern in both home and school. But Sam is complicated with a lot of history at Gillette. He has already had some of the testing the doctor usually asks for, but there is some still to do. So we have opthamology and psychology to add to our list of doctors.
The fun bit there was the trip home. His big sister had her big wax museum project at school that day so I sent Daddy to see it while we were at the doctors. Then he had to get other kids after school so Sam and I took the bus home from St Paul. He was so excited but fell asleep on the way home!
Today we saw Dr Healy. you can see Sam's x ray above. The right femur has a lesion that looks about ready to break. Dr Healy wants to put a bone graft in and stimulate Sam's natural healing process to help heal the bone. That is surgery number 8.
It doesn't get any easier to hear your child needs surgery.
Wednesday, January 18, 2012
5 months headache free
I never did get back with pictures from Sam's birthday, sorry about that. Life is busy with 4 kids going all sorts of ways! Good busy!
I am here today because Sam had quite a headache last night. We were at the Dakota County Communications Center with his Cub Scout pack. He is loving Cub Scouts by the way! We were leaving the training room to a long hall way with windows where we could watch the call center in operation. Sam was at the front of the group with several boys who ran ahead to the lobby. Another parent went to bring them back. About 5 minutes later he told me his head hurt. I took him to the lobby and he laid in a chair for a few minutes. Then the rest of the group came out and one of the parents told me he had slipped with another kid on the highly polished floors. At bed time his head was hurting agin and upon questioning he told me it started when he fell. I asked him to sit up so I could get a better look at his eyes and he said no it hurt to much. At this point he was almost crying, so i just let him go to sleep. he seemed better this morning.
I had to look up when his last headache was and this was the first since the first week of August. I think there have been mabey two mild complaints of a passing headach but they did not slow him down. He does seem to have a bit more of the fatigue than he did during the summer.
Today we are going to HandiMedical for a fitting for a wheel chair.
I am here today because Sam had quite a headache last night. We were at the Dakota County Communications Center with his Cub Scout pack. He is loving Cub Scouts by the way! We were leaving the training room to a long hall way with windows where we could watch the call center in operation. Sam was at the front of the group with several boys who ran ahead to the lobby. Another parent went to bring them back. About 5 minutes later he told me his head hurt. I took him to the lobby and he laid in a chair for a few minutes. Then the rest of the group came out and one of the parents told me he had slipped with another kid on the highly polished floors. At bed time his head was hurting agin and upon questioning he told me it started when he fell. I asked him to sit up so I could get a better look at his eyes and he said no it hurt to much. At this point he was almost crying, so i just let him go to sleep. he seemed better this morning.
I had to look up when his last headache was and this was the first since the first week of August. I think there have been mabey two mild complaints of a passing headach but they did not slow him down. He does seem to have a bit more of the fatigue than he did during the summer.
Today we are going to HandiMedical for a fitting for a wheel chair.
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