Well I was informed last night that we were able to meet our fund raising match with the Bridge to Healing Foundation and a little more. So I will be going to therapy camp with Alex at the end of July. I am so grateful that he will be able to attend and for the generosity of so many to make it possible. This mom just isn't capable of handling much right now and the timing is good because Alex is making that oh so wonderful transition to the teen years. In case you don't know, I've learned from other parents of older special needs kids that the transition for them is hellish compared to typical kids. Yippee (can you feel my excitement?)
Having to go through the loss of a child when you've been out of social circles for some time has been incredibly difficult and lonely place to be. I am also struggling because there were a few close friends in my daily life when Braden was alive who now are too busy in their own lives to reach out to me anymore. That is particularly disappointing and heartbreaking because no matter how difficult things could get, I could always find a big smile and lots of laughs. It was nice to feel good about myself knowing I actually have a sense of humor and can make others laugh. I am thankful for a few people I've been able to connect with the past few weeks to get out of the house with or without the boys (and I especially enjoyed girls night out with my sister in-laws-thank you Minnesota Mule, Lemon Drop and the movies Bridesmaids). I feel like my identity and purpose in life has been altered in a major way and I'm trying to identify the "What's Next" in several areas of my life right now.
I have to be careful because I know that I can tend to have a 'thin' skin at times with others. I am finding it difficult to hear well meaning 'friends' make comments like telling me I need to connect with other moms who have lost children to find support. Being in this place I don't want to be in right now I couldn't DISAGREE more! I want to just be myself around the friends already in my life and possibly be reacquainted with others whom I've lost touch with over the past few years. I'm not looking for others to give me advice, say something meaningful and spiritual, or to make things better. I just want to be in the company of others and just 'be'.
I am finding it more difficult as time goes on to keep up with this blog, mainly because I am trying to use discretion in what I am able to share. Things are difficult. Someone said that the more they listen to me share about events lately that it seems like they are peeling an onion-once you get past one layer there is another layer and there are also things that are interconnected. I was counseled by someone last night to be prayerful about any decisions I am in the process of making. It was a good reminder to be mindful since emotions can run strong and come unexpected at times. I wish at times I could just turn my brain 'off' because I just think too much.
I am hopeful that I will be able to connect with other parents at therapy camp who have shared similar struggles in raising their special kids. I am keeping my eyes open for opportunities personally and professionally. I've even been thinking about going back to school to obtain licensure in a medically related profession. I know that I will be in a position to continue learning more-not just for my children but hopefully for others someday.
Thursday, June 16, 2011
Thursday, June 9, 2011
Almost There!
I am exicted to share that we are just under $1,000 away from our fundraising goal for therapy camp. I can't begin to express the depth of gratitude I have for everyone who has so graciously made this possible for Alexander. No matter what the size of the contribution has been, my heart has been deeply touched. This is so meaningful for me at the moment. Please email me if you are still interested in making a contribution. If you don't need the tax deduction you can feel free to send contributions to me at my home address. My deadline to get all money collected and into the Institute in Florida is June 28th. I am hoping to mail off the final payment the week before to ensure it makes it there on time.
Tomorrow is the last day of school for the boys and they are really looking forward to summer break. They will definitely be busy. Logan has already been active in baseball two evenings a week since mid-May and his team is doing awesome this year! Logan also has made some great plays on the field, pitched a couple innings pretty well, and has already had a couple of nice power hits at his turn to bat. I don't think he's had any strike outs yet. Look out Boston! We're also VERY proud of him as he received the Presidential Award in Outstanding Academic Excellence yesterday. He said only a couple kids in each upper level grade received this award. We're pretty proud of his achievement. We are also grateful for the amazing teachers the boys have had this past school year. Their patience and support is appreciated.
Evan continues to tell me that he is looking forward to being at home with me this summer and that he is especially looking forward to being with me again. He's had lots of hugs for me this week as it's been a week where I've really needed them. He is looking forward to spending a couple days each week at a park here in Bloomington hanging out with other kids and Park & Rec staff. He struggles more with coordination of his motor skills so playing outdoor sports is more of a challenge for him. He is continually looking for more activities to keep himself busy. Every time we drive by the Ice Garden around the corner from our house and sees the sign for skating lessons that start next week he says "that sure sounds like fun!" He loves going to the Bloomington city pool in the summers and is quite the swimmer. I'm sure he will be busy playing with his neighbor friend (who also goes to the same school, same grade) when he is home from day care. Alan doesn't mind the kid coming over as he already was begging Alan to cut our grass-which was great because our kids jumped right into offering help to Alan outside as well! Alan put Evan and the other boys to work cutting brush in our back yard last weekend. Evan was so excited about helping that he kept asking to help on Sunday in the backyard doing more work. He is quite the helper and I appreciate that about him.
Alex is gearing up to go to five days of overnight camp on Trout Lake at Camp Hand in Hand (which is offered by the Autism Society of Minnesota). Last year was his first time up there and we were pleasantly surprised how much fun he had and the quality of staff they have working at the camp. We were especially thrilled that his personal staff at camp was the daughter of a woman who used to work with him in Sunday School when we were still at Wooddale Church. I received a call from his program staff tonight who has been at the camp for several years and it sounds like MANY of the camp staff have been committed to returning to this camp every year. Additionally, Alex's music therapist from the U of M works at this camp providing music and music time at camp which is another big bonus for Alex. He has worked with Alex for a few years now and knows him very well. It was so nice to hear from his camp staff tonight that his music therapist has already shared so many great things about Alex and how fond he is of him. This staffer proceeded to tell me that everyone who works at camp knows and adores Alex. I think that's pretty true of most people who meet him-he's great at showing his best side to others outside his immediate family.
I am hoping to commit a couple nights a week this summer doing things just for me. So if you live by me and want to hang out or go do something together, let me know! My personal life has been on hold for a while with four boys. Most moms are in the habit of putting everyone else's needs ahead of their own. This has been especially true for me. My new friend from church in Stephen's Ministry told me last night that it's going to be her new goal with me to help me make time for myself. She said I need to spend more time right now just focusing on myself. I know this is especially timely as the kids are home from school for the summer and two of them have evening baseball three nights a week. I feel so out of the loop socially since I've had to give up a lot of personal time to my kids, including two children with special needs. I have been out of the workplace for just over twelve years now and I'm already thinking ahead on that as well. The clinic where I've been a patient for over four years and have been volunteering my time for a few months is now hiring. I'm going to apply for one of the positions they are seeking to fill. For me it's not so much about the money as it is the people and being able to give something of my self in a new and slightly different way. We'll see what if anything happens. For now, I need to spend the next few weeks 'recharging' my batteries for Alex's therapy camp at the end of July. Grief is incredibly draining and exhausting emotionally, psychologically, and physically. I am looking forward to continuing my learning in the MNRI technique, adding to the courses I've already been able to take. I am hoping that my foundation of training will not only directly benefit my own children but others as well someday when the timing is right. As I have taken a few classes and become confident in using the techniques with my own children, I have developed a greater passion for the work and want to use it to help bring healing to others.
Tomorrow is the last day of school for the boys and they are really looking forward to summer break. They will definitely be busy. Logan has already been active in baseball two evenings a week since mid-May and his team is doing awesome this year! Logan also has made some great plays on the field, pitched a couple innings pretty well, and has already had a couple of nice power hits at his turn to bat. I don't think he's had any strike outs yet. Look out Boston! We're also VERY proud of him as he received the Presidential Award in Outstanding Academic Excellence yesterday. He said only a couple kids in each upper level grade received this award. We're pretty proud of his achievement. We are also grateful for the amazing teachers the boys have had this past school year. Their patience and support is appreciated.
Evan continues to tell me that he is looking forward to being at home with me this summer and that he is especially looking forward to being with me again. He's had lots of hugs for me this week as it's been a week where I've really needed them. He is looking forward to spending a couple days each week at a park here in Bloomington hanging out with other kids and Park & Rec staff. He struggles more with coordination of his motor skills so playing outdoor sports is more of a challenge for him. He is continually looking for more activities to keep himself busy. Every time we drive by the Ice Garden around the corner from our house and sees the sign for skating lessons that start next week he says "that sure sounds like fun!" He loves going to the Bloomington city pool in the summers and is quite the swimmer. I'm sure he will be busy playing with his neighbor friend (who also goes to the same school, same grade) when he is home from day care. Alan doesn't mind the kid coming over as he already was begging Alan to cut our grass-which was great because our kids jumped right into offering help to Alan outside as well! Alan put Evan and the other boys to work cutting brush in our back yard last weekend. Evan was so excited about helping that he kept asking to help on Sunday in the backyard doing more work. He is quite the helper and I appreciate that about him.
Alex is gearing up to go to five days of overnight camp on Trout Lake at Camp Hand in Hand (which is offered by the Autism Society of Minnesota). Last year was his first time up there and we were pleasantly surprised how much fun he had and the quality of staff they have working at the camp. We were especially thrilled that his personal staff at camp was the daughter of a woman who used to work with him in Sunday School when we were still at Wooddale Church. I received a call from his program staff tonight who has been at the camp for several years and it sounds like MANY of the camp staff have been committed to returning to this camp every year. Additionally, Alex's music therapist from the U of M works at this camp providing music and music time at camp which is another big bonus for Alex. He has worked with Alex for a few years now and knows him very well. It was so nice to hear from his camp staff tonight that his music therapist has already shared so many great things about Alex and how fond he is of him. This staffer proceeded to tell me that everyone who works at camp knows and adores Alex. I think that's pretty true of most people who meet him-he's great at showing his best side to others outside his immediate family.
I am hoping to commit a couple nights a week this summer doing things just for me. So if you live by me and want to hang out or go do something together, let me know! My personal life has been on hold for a while with four boys. Most moms are in the habit of putting everyone else's needs ahead of their own. This has been especially true for me. My new friend from church in Stephen's Ministry told me last night that it's going to be her new goal with me to help me make time for myself. She said I need to spend more time right now just focusing on myself. I know this is especially timely as the kids are home from school for the summer and two of them have evening baseball three nights a week. I feel so out of the loop socially since I've had to give up a lot of personal time to my kids, including two children with special needs. I have been out of the workplace for just over twelve years now and I'm already thinking ahead on that as well. The clinic where I've been a patient for over four years and have been volunteering my time for a few months is now hiring. I'm going to apply for one of the positions they are seeking to fill. For me it's not so much about the money as it is the people and being able to give something of my self in a new and slightly different way. We'll see what if anything happens. For now, I need to spend the next few weeks 'recharging' my batteries for Alex's therapy camp at the end of July. Grief is incredibly draining and exhausting emotionally, psychologically, and physically. I am looking forward to continuing my learning in the MNRI technique, adding to the courses I've already been able to take. I am hoping that my foundation of training will not only directly benefit my own children but others as well someday when the timing is right. As I have taken a few classes and become confident in using the techniques with my own children, I have developed a greater passion for the work and want to use it to help bring healing to others.
Monday, June 6, 2011
Doing My Best
Well I felt a little disappointed that we weren't able to find the time this past weekend to go see Braden's grave site. The cemetary had called us last Friday morning with the news that Braden's grave marker had been installed. It seems like it's taken forever for it to be delivered and put in. I didn't feel like it was worth my time to visit his grave site without the marker there. Alan has started meeting with a Stephen's Minister from our church and he suggested we might want to visit the first time without the boys. I guess for me that wouldn't feel right. I told the boys that his marker was in and that we would try to go visit this past weekend. They were a little disappointed last night that we didn't get to go but that was mainly due to the fact we had promised after visiting the cemetary we'd go to the big park (Chutes & Ladders) practically across the road. I told Alan it would be nice for us to go visit in a few days when our 90 degree hot spell is over.
Logan is signed up for two nights a week of Bloomington boys baseball (which keeps us busy through July during the weeknights) and in a few weeks Alex will start adaptive softball another night of the week. It's hard to believe that this is the last week of school-I know the boys are anxious to be done for a while. Alex has increased anxiety over being home with siblings for a few weeks because he loses the opportunity that school provides to give him a break from his home life and they can provide him with a consistent schedule. It's hard to know how losing a brother has affected them because they don't openly discuss their feelings and especially so around Braden's death. I continue ot keep my eyes open and have it on my 'to do' list to look into children's grief groups. We were told at the hospital that kids don't have difficulty until (on average) six months from the initial event. That is a blessing in my mind-I know that I am not doing the best lately.
I am thankful that they each have a few things this summer to keep them busy. Every circumstance that comes along these days seems to have a much greater impact on me emotionally than it typically would otherwise. I'm an incredibly patient and long-suffering person. However, the added stresses make it feel a thousand times harder to handle and cope. Added stresses for us includes parenting three boys who struggle to get along with one another. Most days lately I feel like running away and not coming back for a while. However, the reality is that I can't. I was able to take both Evan and Logan out for dinner last Friday night while Alan took Alex to a church social outing. It felt like it took everything in me to have the energy to come home and spend time playing a game with them. The pain of losing my 'baby' has set in like a thick cloud. I have been thankful to have a few days each week to have been out of the house for a few hours helping my friends at Valeo Health & Wellness. Being surrounded by such warm and wonderful people has helped lift me up. I'm trying to figure out how I can continue that over the summer months with summer break.
I continue to have people tell me in conversation that they are 'amazed' at how I'm keeping things together and that they 'don't know how (I) do it.' I can honestly say that without my personal faith in Christ I wouldn't be able 'to do it.' I am continually relying on prayer and the prayer support of others. I am trusting in a provision of grace, strength and an awareness of His love in my life. I continue to seek the fellowship and support of friends. I also have plans to meet with a Stephen's Minister from our church for the first time this week. I am hoping that we connect well. I had asked to meet with someone who has walked in at least one of the 'shoes' that I've had to walk in in life. I realize that I can't do it alone. It's been easy for us to isolate ourselves over the years with our unique family situation but it's come at a cost. Most of it was not by choice-what do you do when your church says they aren't able to help your child attend Sunday School? When you feel you've maximized your resources and your child is still struggling? You manage to do your best despite the circumstances.
Logan is signed up for two nights a week of Bloomington boys baseball (which keeps us busy through July during the weeknights) and in a few weeks Alex will start adaptive softball another night of the week. It's hard to believe that this is the last week of school-I know the boys are anxious to be done for a while. Alex has increased anxiety over being home with siblings for a few weeks because he loses the opportunity that school provides to give him a break from his home life and they can provide him with a consistent schedule. It's hard to know how losing a brother has affected them because they don't openly discuss their feelings and especially so around Braden's death. I continue ot keep my eyes open and have it on my 'to do' list to look into children's grief groups. We were told at the hospital that kids don't have difficulty until (on average) six months from the initial event. That is a blessing in my mind-I know that I am not doing the best lately.
I am thankful that they each have a few things this summer to keep them busy. Every circumstance that comes along these days seems to have a much greater impact on me emotionally than it typically would otherwise. I'm an incredibly patient and long-suffering person. However, the added stresses make it feel a thousand times harder to handle and cope. Added stresses for us includes parenting three boys who struggle to get along with one another. Most days lately I feel like running away and not coming back for a while. However, the reality is that I can't. I was able to take both Evan and Logan out for dinner last Friday night while Alan took Alex to a church social outing. It felt like it took everything in me to have the energy to come home and spend time playing a game with them. The pain of losing my 'baby' has set in like a thick cloud. I have been thankful to have a few days each week to have been out of the house for a few hours helping my friends at Valeo Health & Wellness. Being surrounded by such warm and wonderful people has helped lift me up. I'm trying to figure out how I can continue that over the summer months with summer break.
I continue to have people tell me in conversation that they are 'amazed' at how I'm keeping things together and that they 'don't know how (I) do it.' I can honestly say that without my personal faith in Christ I wouldn't be able 'to do it.' I am continually relying on prayer and the prayer support of others. I am trusting in a provision of grace, strength and an awareness of His love in my life. I continue to seek the fellowship and support of friends. I also have plans to meet with a Stephen's Minister from our church for the first time this week. I am hoping that we connect well. I had asked to meet with someone who has walked in at least one of the 'shoes' that I've had to walk in in life. I realize that I can't do it alone. It's been easy for us to isolate ourselves over the years with our unique family situation but it's come at a cost. Most of it was not by choice-what do you do when your church says they aren't able to help your child attend Sunday School? When you feel you've maximized your resources and your child is still struggling? You manage to do your best despite the circumstances.
Thursday, June 2, 2011
Update on Fundraising
I want to thank everyone from the bottom of my heart who has so graciously donated money for Alex's Therapy Camp. This is a dream come true for us and we are excited to see the great things that will happen for Alex as a result of going in July. I am also excited as I will be going with him and getting on the spot training myself. I have been able to take some of the training already and it will also benefit Evan as well. Evan's therapy clinic also uses Dr. Masgutova's MNRI work and we are seeing nice gains for Evan with it also. This work will be timely for Alex as we have maximized many other avenues for him already and he still continues to struggle.
The good news as of today, we are only $1,300.00 away from reaching our total goal of $8,000!!! So if any of you were planning to donate money toward his camp we need to have that money sent into Bridge to Healing or directly to us at our home address by next Friday June 10th. Bridge to Healing will be able to provide a tax deductible receipt for you if you so choose. Thank you for being a blessing to us at this point in time.
For those of you out there who are wanting to support us in prayer here are the following needs we have:
1. The final amount will come in, including money for our hotel stay.
2. The therapists with the experience Alex needs for his unique needs would be assigned to working with him and that they would be able to easily identify where his deficits are and know what reflex(es) are needed to repattern those deficits.
3. Alex would be able to physically and emotionally tolerate the extensive period of work each day-he will need to be able to work with therapists for 6 hours each day-that is no easy task for a 12 year old who'd rather be doing other things than laying on a massage table.
4. The reflex repatterning being done would permanently anchor in his nervous system and body.
5. Both Alex and myself would make new social connections with others in attendance at the camp.
6. Both Alex and myself would physically be ready for therapy camp.
7. For the remainder of our family (Logan at camp; Alan and Evan at home) for their safety and things would go well.
I have started to work through my grief with the help of a dear friend and one of Alex's private therapists. However, I have had a recent increase in migraine headaches. I am in need of support to address that problem because the only way I can feel better is to sleep. That isn't easy for me since our family calendar is full of appointments for the boys and summer activities coming. I wish I were able to have regular cranial sacral work on myself! I have been able to do some cranial work on myself but as a practitioner you can only do so much on yourself. I'm hoping to find someone I can trade CST with. I have been starting to use CST on my boys and I find it very fulfilling.
Well off to bed for a while to get rid of this headache!!
Oh and I plan to update our blog more regularly when we're at therapy camp-hoping to get Alan's help to learn how I can incorporate photos and other things to keep everyone updated on his progress. I know that we won't be allowed to take photos during therapy at the camp per signed agreement with MNR Institute. However, I'll make sure to take photos of him during our 'down' time.
The good news as of today, we are only $1,300.00 away from reaching our total goal of $8,000!!! So if any of you were planning to donate money toward his camp we need to have that money sent into Bridge to Healing or directly to us at our home address by next Friday June 10th. Bridge to Healing will be able to provide a tax deductible receipt for you if you so choose. Thank you for being a blessing to us at this point in time.
For those of you out there who are wanting to support us in prayer here are the following needs we have:
1. The final amount will come in, including money for our hotel stay.
2. The therapists with the experience Alex needs for his unique needs would be assigned to working with him and that they would be able to easily identify where his deficits are and know what reflex(es) are needed to repattern those deficits.
3. Alex would be able to physically and emotionally tolerate the extensive period of work each day-he will need to be able to work with therapists for 6 hours each day-that is no easy task for a 12 year old who'd rather be doing other things than laying on a massage table.
4. The reflex repatterning being done would permanently anchor in his nervous system and body.
5. Both Alex and myself would make new social connections with others in attendance at the camp.
6. Both Alex and myself would physically be ready for therapy camp.
7. For the remainder of our family (Logan at camp; Alan and Evan at home) for their safety and things would go well.
I have started to work through my grief with the help of a dear friend and one of Alex's private therapists. However, I have had a recent increase in migraine headaches. I am in need of support to address that problem because the only way I can feel better is to sleep. That isn't easy for me since our family calendar is full of appointments for the boys and summer activities coming. I wish I were able to have regular cranial sacral work on myself! I have been able to do some cranial work on myself but as a practitioner you can only do so much on yourself. I'm hoping to find someone I can trade CST with. I have been starting to use CST on my boys and I find it very fulfilling.
Well off to bed for a while to get rid of this headache!!
Oh and I plan to update our blog more regularly when we're at therapy camp-hoping to get Alan's help to learn how I can incorporate photos and other things to keep everyone updated on his progress. I know that we won't be allowed to take photos during therapy at the camp per signed agreement with MNR Institute. However, I'll make sure to take photos of him during our 'down' time.
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