When we admitted Mary to the RTF a couple of weeks ago, I made the difficult decision to resign my position as director of children's ministries at our local church. I knew that with the added time on the road to visit her and for all the extra therapies involved, as well as the time involved in helping her truly heal and recover once she is discharged, that I would not have the time that this job (and the church) deserved. Sunday mornings seem to be a prime time to visit her and I haven't yet learned how to be two places at one time. With all that has been going on, we haven't been to church as a family in months and I personally haven't been in several weeks. In all honesty, if left to myself, it is during these hard times that I am tempted to pull into myself...to lock the doors and draw the drapes and try to hide. I hate drawing attention to us, to the difficulties that we face, to the hard time that we are going through. After all, who wants to constantly be "that family" who is in crisis?!? We don't ever want to be a burden to others. We don't want to "need" anyone else. This burden is ours to bear and we don't share that burden willingly.
But God, in His sovereignty, has put us in a body of believers who won't let us get away that easily. From the moment that we admitted her to the RTF we have been surrounded by people who have sent texts, fb messages, and emails to encourage us. We have been the recipient of numerous meals and generous donations to help with medical costs and travel expenses, and many of those have been given by those who don't have extra to give. We are humbled by the love that God has shown us through His church body.
Today, I am thankful for the Body of Christ!
Monday, October 29, 2012
Monday, October 22, 2012
Don't Just Pray For Me...
..."Pray for the other kids who are in here with me!" That was Mary's answer last week when asked by a friend who was visiting her with us "What the biggest thing that she wanted people to be praying about?". She has such a heart for those around her who are hurting. Her biggest prayer concern right now is not for her own safety, her own comfort, or her own adjustment. It is for the other kids in her unit who are hurting and don't know Jesus. Oh that I could have such a heart for the hurting and lost!
Wednesday, October 17, 2012
Start Selling Those Cattle....
Today was a long day for us. Most of it was very good and positive. After a very rough start there, Mary is now settling in well at the Residential Treatment Facility (RTF). She is starting to trust the staff and make friends with the other patients. She has been there almost a week. At times it seems like it has only been a day or two and at other times, it feels like an eternity. We have had a lot of opportunity to watch the staff at work with the kids and are impressed with their ability to handle the toughest cases with grace and kindness. My heart is still heavy for her and the long road she has ahead of her, but I feel like I can breathe without the excruciating pain that was present last week.
One of the main things on our agenda today was the master planning meeting. The best thing I can compare it to was an IEP meeting but with all the medical and behavioral terminology thrown into it. It was great to set some measurable goals for Mary to achieve which will be an outward sign of the inward healing that is taking place. It is good to know what medications we will be taking away and what medications we will be trying next. It is good to meet all the team players and know that we are all on the same page. One of the things that was mentioned to us today and kind of took my by surprise was the idea that Mary could possibly be high functioning asperger's in addition to all the other diagnoses that she has. I know that asperger's and autism are commonly part of the mix with bipolar kids, I just had never thought that Mary fit into that category. It is something we will have to explore further but would explain part of why she has been so difficult to medicate.
The next step of the day was our first family therapy session. It went really well and I think that we will all like working with the counselor who has been assigned to our case.
Everything was going along so well... until we got a call from the admissions department regarding our insurance coverage. UGH!!! We knew going into this that our insurance would most likely not pay for everything. We were not prepared for just how little they were going to pay. Don't get me wrong... I am extremely thankful that we have insurance and for every penny that they will pay. Everyone has been very helpful in trying to cover as much as possible so that our out-of-pocket expenses would be manageable. However, the cost at this point looks insurmountable. And yet, what choice do we have??? This is the ONLY viable option for her health and recovery right now. Can we put a value on her life???? Can we say, as her parents, that our pocketbook will only cover this much, so you have to go without the care that you need??? The thing that frustrates me the most is this... if Mary had cancer or diabetes and had to be hospitalized for months at a time to receive medical treatment and recover, it would be covered by insurance. But because this is a mental health issue (which is still just as biologically real as cancer or diabetes) the insurance puts limits on what they will pay for. They can put a value on her life just because her health issues are not as visible as other health issues, even though they are just as deadly.
As we were driving home, God whispered to my heart and reminded me that He owns the cattle on a thousand hills. This comes as no surprise to Him. He's got a plan. He is a God who makes the impossible, possible. I need to trust Him in this. In my human nature, I have asked Him to start selling off some of those cows because one of His children desperately needs the cash. I'm sure He got a chuckle out of that...
One of the main things on our agenda today was the master planning meeting. The best thing I can compare it to was an IEP meeting but with all the medical and behavioral terminology thrown into it. It was great to set some measurable goals for Mary to achieve which will be an outward sign of the inward healing that is taking place. It is good to know what medications we will be taking away and what medications we will be trying next. It is good to meet all the team players and know that we are all on the same page. One of the things that was mentioned to us today and kind of took my by surprise was the idea that Mary could possibly be high functioning asperger's in addition to all the other diagnoses that she has. I know that asperger's and autism are commonly part of the mix with bipolar kids, I just had never thought that Mary fit into that category. It is something we will have to explore further but would explain part of why she has been so difficult to medicate.
The next step of the day was our first family therapy session. It went really well and I think that we will all like working with the counselor who has been assigned to our case.
Everything was going along so well... until we got a call from the admissions department regarding our insurance coverage. UGH!!! We knew going into this that our insurance would most likely not pay for everything. We were not prepared for just how little they were going to pay. Don't get me wrong... I am extremely thankful that we have insurance and for every penny that they will pay. Everyone has been very helpful in trying to cover as much as possible so that our out-of-pocket expenses would be manageable. However, the cost at this point looks insurmountable. And yet, what choice do we have??? This is the ONLY viable option for her health and recovery right now. Can we put a value on her life???? Can we say, as her parents, that our pocketbook will only cover this much, so you have to go without the care that you need??? The thing that frustrates me the most is this... if Mary had cancer or diabetes and had to be hospitalized for months at a time to receive medical treatment and recover, it would be covered by insurance. But because this is a mental health issue (which is still just as biologically real as cancer or diabetes) the insurance puts limits on what they will pay for. They can put a value on her life just because her health issues are not as visible as other health issues, even though they are just as deadly.
As we were driving home, God whispered to my heart and reminded me that He owns the cattle on a thousand hills. This comes as no surprise to Him. He's got a plan. He is a God who makes the impossible, possible. I need to trust Him in this. In my human nature, I have asked Him to start selling off some of those cows because one of His children desperately needs the cash. I'm sure He got a chuckle out of that...
Friday, October 12, 2012
The Hardest Thing that I have EVER done...
...is to walk away from my daughter when we dropped her off at a residential treatment center (RTC) yesterday! The second hardest thing was to hear her voice on the phone later in the night begging us to come and pick her up. At this point she is feeling alone and hopeless, distrustful of everyone around her, and generally miserable. And I am a weepy mess!!! My heart keeps crying out with every breath, "I am NOT okay with this!" But I am still breathing and for today, that is enough.
So, what led us to this point??? It has been a slippery slide downhill for the past year. What started as the usual October cycling escalated when Mary's grandmother passed away in November. From there it was a series of medications losing their efficacy, growth spurts, changes in routine, cycling more and more, etc. We had come to the point of knowing that we probably needed to do a medication wash (take her off of all medicines and start fresh - all with the doctor's approval and direction, of course). However, we were not comfortable with any of the local inpatient units to serve this purpose. We tried to join a study group at NIH, but at the time, Mary was the only participant and they could not justify taking her off of all her medications for the knowledge that would be gained... and they were no longer doing any medication trials for bipolar kids. We decided to start the medication wash at home and see what happens all the while trying to find a good placement for her to complete it.
Our reasons behind not wanting to use the local phosp for this were numerous... she would no longer be on the children's unit, but the adolescent unit... which means she would be one of the youngest on the unit. She is fairly sheltered as far as what we expose her to and she is also young and naive for her age group. Her idea of trying to commit suicide was a butter knife to her thumb (which showed lack of know-how, not lack of intent). We really did not want to put her into a unit where the older teens could "educate" her on better ways to do this. We also know in our hearts that this is a MEDICAL condition and as such needs medical treatment. When her medications are right and her moods are stable, her behaviors fall in line. Not to say that she is a perfect kid. She is still quite the little sinner (just like me!) and needs correction and discipline, etc. The difference is that when she is not medically stable, all the "good parenting" in the world doesn't make a difference. She is physically not capable of controlling the behaviors. Our last stay at the local phosp resulted in no medication change at all and her coming away with the message that if she doesn't say she wants to kill herself then she won't have to go back to the hospital. That willpower can only carry her so far. So, all in all, we felt like we were better able and better equipped to "crisis manage" at home then they would be in the local hospital, and we can do that indefinitely.
What finally led us to the decision to put her in a RTC was not our need for a break. In fact, it will be much harder for us to have her away because we are not the type of parents to drop her off and ask them to call us when she is "fixed". We are very involved in her care and will probably be known by the staff as the "pain in the butt" parents who monitor everything! We will try to do it all with love and grace and in the most kind fashion, but at the end of the day, she is still our daughter and we don't trust anyone else entirely with her care! So, what really brought us to this point was the fact that she needs to heal. She needs round the clock medical monitoring while we complete the medication changes. She needs a different approach to therapy then she has been getting every week for the past 5 years since her diagnosis. She needs to fully recover from this long period of instability. We are hoping and praying that this stay at the RTC will give her just that!!!
Will it be easy??? Not on your life! It is going to be an uphill climb the entire time. But most things in life worth having are not easy to obtain.
Ways you can pray:
Pray for protection (spiritual, physical, emotional) for Mary while she is out of our care. There are many abused and neglected children in this facility and they are hurting. We want Mary protected from the influence of those hurts.
Pray that we can be a light in the midst of terrible darkness. Pray that the darkness would not consume any of us.
Pray that Mary would settle in and accept that this is a good thing for her. Right now she is only focused on wanting to go home.
Pray that insurance funding would be approved.
Pray for peace for our entire family in the midst of the chaos.
Pray that real healing can take place and that Mary will return to our family quickly.
Pray that medications can be regulated and that they will find something that will work for many years to come to stabilize her moods.
Pray that even in the midst of all of this, that God would be glorified.
Pray that we would have wisdom in making decisions regarding her care.
Thank you to all of you who pray faithfully for us and who support us during these trying times.
So, what led us to this point??? It has been a slippery slide downhill for the past year. What started as the usual October cycling escalated when Mary's grandmother passed away in November. From there it was a series of medications losing their efficacy, growth spurts, changes in routine, cycling more and more, etc. We had come to the point of knowing that we probably needed to do a medication wash (take her off of all medicines and start fresh - all with the doctor's approval and direction, of course). However, we were not comfortable with any of the local inpatient units to serve this purpose. We tried to join a study group at NIH, but at the time, Mary was the only participant and they could not justify taking her off of all her medications for the knowledge that would be gained... and they were no longer doing any medication trials for bipolar kids. We decided to start the medication wash at home and see what happens all the while trying to find a good placement for her to complete it.
Our reasons behind not wanting to use the local phosp for this were numerous... she would no longer be on the children's unit, but the adolescent unit... which means she would be one of the youngest on the unit. She is fairly sheltered as far as what we expose her to and she is also young and naive for her age group. Her idea of trying to commit suicide was a butter knife to her thumb (which showed lack of know-how, not lack of intent). We really did not want to put her into a unit where the older teens could "educate" her on better ways to do this. We also know in our hearts that this is a MEDICAL condition and as such needs medical treatment. When her medications are right and her moods are stable, her behaviors fall in line. Not to say that she is a perfect kid. She is still quite the little sinner (just like me!) and needs correction and discipline, etc. The difference is that when she is not medically stable, all the "good parenting" in the world doesn't make a difference. She is physically not capable of controlling the behaviors. Our last stay at the local phosp resulted in no medication change at all and her coming away with the message that if she doesn't say she wants to kill herself then she won't have to go back to the hospital. That willpower can only carry her so far. So, all in all, we felt like we were better able and better equipped to "crisis manage" at home then they would be in the local hospital, and we can do that indefinitely.
What finally led us to the decision to put her in a RTC was not our need for a break. In fact, it will be much harder for us to have her away because we are not the type of parents to drop her off and ask them to call us when she is "fixed". We are very involved in her care and will probably be known by the staff as the "pain in the butt" parents who monitor everything! We will try to do it all with love and grace and in the most kind fashion, but at the end of the day, she is still our daughter and we don't trust anyone else entirely with her care! So, what really brought us to this point was the fact that she needs to heal. She needs round the clock medical monitoring while we complete the medication changes. She needs a different approach to therapy then she has been getting every week for the past 5 years since her diagnosis. She needs to fully recover from this long period of instability. We are hoping and praying that this stay at the RTC will give her just that!!!
Will it be easy??? Not on your life! It is going to be an uphill climb the entire time. But most things in life worth having are not easy to obtain.
Ways you can pray:
Pray for protection (spiritual, physical, emotional) for Mary while she is out of our care. There are many abused and neglected children in this facility and they are hurting. We want Mary protected from the influence of those hurts.
Pray that we can be a light in the midst of terrible darkness. Pray that the darkness would not consume any of us.
Pray that Mary would settle in and accept that this is a good thing for her. Right now she is only focused on wanting to go home.
Pray that insurance funding would be approved.
Pray for peace for our entire family in the midst of the chaos.
Pray that real healing can take place and that Mary will return to our family quickly.
Pray that medications can be regulated and that they will find something that will work for many years to come to stabilize her moods.
Pray that even in the midst of all of this, that God would be glorified.
Pray that we would have wisdom in making decisions regarding her care.
Thank you to all of you who pray faithfully for us and who support us during these trying times.
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