Worn...and need you now...for redemption
If you follow our blog regularly, I use music as a tool for reflection, and often find answers or strength through the power of the song. Growing up in a musically inclined family (my father is the director of music at our church, and all five children play the piano...even my mom is taking piano lessons again!), I have turned many times to the beauty of the gift of music.
This weekend, we were presented many, many challenges. Behaviors that had been extinguished resurfaced. Clothes were being taken off when a tangible was taken away. Yelling and demanding requests were heard. Hunter's tolerance for transition and change had plummeted (well, except for one event, which will be a separate blog post). I was feeling the burden of it all and became very saddened by the fact that I felt like we were starting over. We had worked so hard over the past few months to get rid of these non-desirable traits, and just like that, they were back again. Supports that we had put in place, and since taken out due to compliance, needed to be reinstated..and it was almost like I forgot what I was supposed to do. My mood totally shifted and this song came on the radio, expressing to me exactly what I was feeling...I felt like giving up.
"Worn" by Tenth Avenue North
All I could think about was the lines from the song...obviously not all fitting to our lives, but especially, "I'm worn, even before the day begins.." Each day, living with Autism, is a battle in itself. Rising and starting each day anew, you need to tell yourself that this is the day you will be a better mother, better friend, better wife, all amidst healing a child that used to be, well, "normal." The patience and strength required can often be overwhelming, and honestly, to get through the hardest days, you need to either cry your eyes out, or pray for redemption (meaning "deliverance or rescue").
Today I had an appointment with another pediatrician who has had great success with PANDAS patients, as well as children on the Autism Spectrum. She takes more of homeopathic approach, utilizing biomedical therapy to heal our children. Honestly, it was a hassle to get an appointment. The staff was not very helpful, I had to have all of his records transferred from our current pediatrician (we are not leaving our regular pediatrician- we LOVE her, just wanted someone experienced with PANDAS for a nutritional aspect), and had to submit a stack of paperwork even before they would schedule an initial appointment. Last week we were scheduled to see her, and of course, the office called me that day to cancel (her PA was out sick). This week I had to reschedule therapy, find a sitter, rush from picking up Paige to printing out Hunter's in-depth medical history, and drive thirty minutes to get there. The office staff was not very friendly when I arrived and I almost turned around and walked out. I had worked all day, dealt with a complete meltdown in a store that afternoon with Hunter, and was not in the mood for a snippy attitude. However, when I turned around, I saw a friend who also sees the same doctor, there for an appointment for her daughter. What are the chances?!? She could see I was frustrated and reassured me that the hassle was worth it...I would love the information I would receive. They called her back, and I sat there watching Hunter play the ipad, trying to push the negative feelings out of my head...and then a song came on the radio, one I have linked on here before. I actually hadn't even realized there was a radio playing until then. The power of music and the timing of God could not have been more perfect. Take a listen.
"Need you Now" by Plumb
Some of the song lyrics..."everyone has a wound to be healed," "I get so tired of holding on," "I want to believe there's meaning here," "standing on a road I didn't plan," "God please take this," "Oh, I need you...God, I need you now."
"Hunter?" It was our turn to go back.
After giving the nurse our simplified case history and reason for visit, the nurse practitioner walked in the room. "Erika? I am J. Your friend told me that you had a little trouble with the office staff. I want you to know you aren't the first to experience this, and I also want you to know that you are in the right place. Dr. B is the best person in the area to assist you in helping your son."
When Dr. B came in, it was late...I was her last appointment of the day, and she did not once rush me. I explained my ten page medical running history I have kept since Hunter's birth. Little did I know how important all of those details would be for appointments like these. And when I finished, she answered my prayers. She, like so many other professionals we have met with, validated my concerns and my hypothesis. And she told me "recovery," the term that so many dismiss, is most definitely possible. In my previous post about recovery, I commented that recovery is simply recouping the skills that were once intact, or healing the body to the best possible degree.
She said that with the case history, there was a triggering event that led to an inflammation, causing a chain reaction, triggering underlying issues, whether related to genetics, antibiotic reaction, etc. She describes her Cycle of Illness as the following reactions:
1) Dysbosis= Imbalanced good and bad bacteria/yeast overgrowth, parasitic infections-->
2) Malabsorption- leaky gut, increased gut permeability-->
3) Food sensitivities, food allergies-->
4) Nutrient depletion, weakened immune system-->
5) Finally, eczema, asthma, ADHD/Autism, Allergies, Otitis/Sinustis-->
And the cycle continues until you treat the identified problems. When she reviewed the Nutraeval that we had completed last year, Hunter's yeast counts were high. Overgrowth with bad yeast causes a magnitude of problems (including causing increased hand flapping for one related to AU). I already was giving Hunter probiotics, just from my own research, but we were giving him 4 billion strains...she typically recommends 25 billion to her patients with underlying autoimmune issues. Once we take out the bad yeast, replace the good, treat the malabsorption and follow the appropriate diet, replace the depleted nutrients...you are able to get rid of that "foggy brain."
So we will rerun the NutraEval next week, as well as a couple other samples, CBC, and titers to see where we stand on the bacterias that could be harboring in his body. She didn't think a long-term antibiotic would be beneficial, because as we know, taking antibiotics wipes out that good bacteria, depleting our immune system.
Yes, I am still worn. My heart is still heavy from the work it takes to keep on going. I've let my hope fail several times. But I do believe that redemption, or a "rescue," is going to win. There is a magnificent way that events occur to lead you to the right answers. If my original appointment had not been cancelled, I may have left that office before giving it a chance, had it not been for my friend in the waiting room. If I hadn't heard "Need you now," my mind may not have been as open to optimism, as pessimism had been winning the fight. If I had been able to be seen last month, I wouldn't have had the knowledge of what an active strep infection does to my little boy.
Tonight, after pulling the blankets up on Hunter, and sitting in his rocker for a minute (his little routine that he needs), I witnessed him petting his little green bear, pulling up his sheet over the bear's body, tucking it around his neck, and kissing his furry forehead good night. "Love you green bear."
"Love you, Mommy."
And just like that, I am redeemed.
This weekend, we were presented many, many challenges. Behaviors that had been extinguished resurfaced. Clothes were being taken off when a tangible was taken away. Yelling and demanding requests were heard. Hunter's tolerance for transition and change had plummeted (well, except for one event, which will be a separate blog post). I was feeling the burden of it all and became very saddened by the fact that I felt like we were starting over. We had worked so hard over the past few months to get rid of these non-desirable traits, and just like that, they were back again. Supports that we had put in place, and since taken out due to compliance, needed to be reinstated..and it was almost like I forgot what I was supposed to do. My mood totally shifted and this song came on the radio, expressing to me exactly what I was feeling...I felt like giving up.
"Worn" by Tenth Avenue North
All I could think about was the lines from the song...obviously not all fitting to our lives, but especially, "I'm worn, even before the day begins.." Each day, living with Autism, is a battle in itself. Rising and starting each day anew, you need to tell yourself that this is the day you will be a better mother, better friend, better wife, all amidst healing a child that used to be, well, "normal." The patience and strength required can often be overwhelming, and honestly, to get through the hardest days, you need to either cry your eyes out, or pray for redemption (meaning "deliverance or rescue").
Today I had an appointment with another pediatrician who has had great success with PANDAS patients, as well as children on the Autism Spectrum. She takes more of homeopathic approach, utilizing biomedical therapy to heal our children. Honestly, it was a hassle to get an appointment. The staff was not very helpful, I had to have all of his records transferred from our current pediatrician (we are not leaving our regular pediatrician- we LOVE her, just wanted someone experienced with PANDAS for a nutritional aspect), and had to submit a stack of paperwork even before they would schedule an initial appointment. Last week we were scheduled to see her, and of course, the office called me that day to cancel (her PA was out sick). This week I had to reschedule therapy, find a sitter, rush from picking up Paige to printing out Hunter's in-depth medical history, and drive thirty minutes to get there. The office staff was not very friendly when I arrived and I almost turned around and walked out. I had worked all day, dealt with a complete meltdown in a store that afternoon with Hunter, and was not in the mood for a snippy attitude. However, when I turned around, I saw a friend who also sees the same doctor, there for an appointment for her daughter. What are the chances?!? She could see I was frustrated and reassured me that the hassle was worth it...I would love the information I would receive. They called her back, and I sat there watching Hunter play the ipad, trying to push the negative feelings out of my head...and then a song came on the radio, one I have linked on here before. I actually hadn't even realized there was a radio playing until then. The power of music and the timing of God could not have been more perfect. Take a listen.
"Need you Now" by Plumb
Some of the song lyrics..."everyone has a wound to be healed," "I get so tired of holding on," "I want to believe there's meaning here," "standing on a road I didn't plan," "God please take this," "Oh, I need you...God, I need you now."
"Hunter?" It was our turn to go back.
After giving the nurse our simplified case history and reason for visit, the nurse practitioner walked in the room. "Erika? I am J. Your friend told me that you had a little trouble with the office staff. I want you to know you aren't the first to experience this, and I also want you to know that you are in the right place. Dr. B is the best person in the area to assist you in helping your son."
When Dr. B came in, it was late...I was her last appointment of the day, and she did not once rush me. I explained my ten page medical running history I have kept since Hunter's birth. Little did I know how important all of those details would be for appointments like these. And when I finished, she answered my prayers. She, like so many other professionals we have met with, validated my concerns and my hypothesis. And she told me "recovery," the term that so many dismiss, is most definitely possible. In my previous post about recovery, I commented that recovery is simply recouping the skills that were once intact, or healing the body to the best possible degree.
She said that with the case history, there was a triggering event that led to an inflammation, causing a chain reaction, triggering underlying issues, whether related to genetics, antibiotic reaction, etc. She describes her Cycle of Illness as the following reactions:
1) Dysbosis= Imbalanced good and bad bacteria/yeast overgrowth, parasitic infections-->
2) Malabsorption- leaky gut, increased gut permeability-->
3) Food sensitivities, food allergies-->
4) Nutrient depletion, weakened immune system-->
5) Finally, eczema, asthma, ADHD/Autism, Allergies, Otitis/Sinustis-->
And the cycle continues until you treat the identified problems. When she reviewed the Nutraeval that we had completed last year, Hunter's yeast counts were high. Overgrowth with bad yeast causes a magnitude of problems (including causing increased hand flapping for one related to AU). I already was giving Hunter probiotics, just from my own research, but we were giving him 4 billion strains...she typically recommends 25 billion to her patients with underlying autoimmune issues. Once we take out the bad yeast, replace the good, treat the malabsorption and follow the appropriate diet, replace the depleted nutrients...you are able to get rid of that "foggy brain."
So we will rerun the NutraEval next week, as well as a couple other samples, CBC, and titers to see where we stand on the bacterias that could be harboring in his body. She didn't think a long-term antibiotic would be beneficial, because as we know, taking antibiotics wipes out that good bacteria, depleting our immune system.
Yes, I am still worn. My heart is still heavy from the work it takes to keep on going. I've let my hope fail several times. But I do believe that redemption, or a "rescue," is going to win. There is a magnificent way that events occur to lead you to the right answers. If my original appointment had not been cancelled, I may have left that office before giving it a chance, had it not been for my friend in the waiting room. If I hadn't heard "Need you now," my mind may not have been as open to optimism, as pessimism had been winning the fight. If I had been able to be seen last month, I wouldn't have had the knowledge of what an active strep infection does to my little boy.
Tonight, after pulling the blankets up on Hunter, and sitting in his rocker for a minute (his little routine that he needs), I witnessed him petting his little green bear, pulling up his sheet over the bear's body, tucking it around his neck, and kissing his furry forehead good night. "Love you green bear."
"Love you, Mommy."
And just like that, I am redeemed.
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