Trying To Keep Up The Good Fight....

This last week has left me struggling for a hand-hold in life. Reading several friends' blogs tells me we are sharing parallel lives, though I feel I am not handling things nearly as well as they are. Their blogs are filled with humor and thought-provoking statements about their circumstances, and things they post result in reactions from others that flood their inboxes with comments.

I open my heart (and my big mouth) to post here for our family journal, and I am 99.9% sure that the only person who reads (or cares about) my posts is my sweet, patient husband.
Does it matter at all that I post here, will my children care about having this journal of our family journey together? Will it help them understand when they are older, that I did the best that I could with what I had available in the moment? I don't know...all I can do is write now and hope that someday it might matter. So here I post my most current heartaches and worries, and in the process keep trying NOT to compare myself to others out there who I am in awe of, and will never be, because I am just me...

We have come to a point of "battle" mode again, in every area of life.

Medically, Colton & I have more on our plate than it seems we can get through. We are traveling to Corvallis multiple times a week, and sometimes even farther for both of us to receive needed care. We have had to condense our many appts, for both of us, to specific providers to try to alleviate some of the constant travel. We have both added several new specialists in the last couple of months trying to find answers to new and emerging concerns. For me, it has been trying to find answers to old concerns, and receiving results that have been mind-blowing and leaving us wondering what to do next. We are still finding more questions than answers. We try one step at a time to figure out a new remedy, and spend lots of time waiting to see if things work or not. I am in that process now, trying to resolve several things at once, and also doing a lot of waiting....In this process we are waiting for official reports for Colton so we can move forward with securing services, specialists and possibly new medications. Through all of this, we have truly been blessed with the very best care available, and that is something that I am thankful for daily.

Educationally, the kids have all floundered through the curriculum this term, and are still way behind even as the end of the term is now only 2 weeks away. Most of this has been a result of before-mentioned medical stuff. We are also still in battle mode with the school district to get them to accept the medical stuff to apply to Colton's IEP. You would think continuing circumstances would be case-in-point, and a no-brainer for having everything in place. Because they are not providing services, they have thus far dismissed the specialists' reports, wanting their own results. This has left us with 1/2 the school year gone, and Colton still not receiving services and documentation that should have been in place in September...It has also left me having to force their hand and request specific meetings to make sure these things are finally put on his IEP. Most likely, though, the benefits will not be of help until next school year, leaving us to struggle to complete 1st grade curriculum. It also leaves us having to work with ORCA teachers and administrators to ask for exemption and some extreme modifications for Colton to successfully complete the curriculum before the end of the year. It is exhausting being the middle man...

Socially, mostly because of medical and school, things have hit a breaking point, resulting in gallons of tears because others do not even try to understand where we are in life. It doesnt help to have the girls come to me to say that someone commented directly to them what a horrible choice we have made by having them in ORCA, and how they are never going to function in the real world without "proper" educational and social interactions. I wish, just for a moment, that others would consider where they are, and in comparison, where we have been for the last 10 yrs. That they would give a little patience and understanding, instead of intolerance and criticsm. I would be interested to know how they would have done in similar circumstances...I try hard not to be upset, but when things are thrown right at the kids, it is hard not to be. Preston also carries bishopbric, military command staff, and project manager responsibilities that take him away from home often. These are things that are also very different from most others that we know. We often have to divide and conquer our family schedule, which includes enlisting the girls extra help and care for little people when Preston & I need to be gone at the same time. It doesnt leave a lot of room for getting out and about with friends, the girls' or ours. None of these things is going to change, so how do we find more time or more room, and ask more understanding when it just doesnt happen like we would hope? I often worry that we are far outside of the social loop because others are just plain tired of hearing that we are scheduled 6 months or more out, that what social stuff we do have is centered around church activities, that all of our craziness and our season in life just doesnt mesh with any social circles anymore...

Family interactions recently have resulted in friction and fireworks, almost on a non-stop basis, including having my son scream at me that he hates me and other not-so-lovely things. Have we gotten to a point where mom 24-7 is more than any of them can handle? We have gotten to a point where we will be looking into some extra help for the boys' extreme behaviors where they can channel that energy in a positive direction. Hopefully things will be in place soon. The girls are teenagers (and the youngest one has enough attitude to be one too) and our days flux between tears, stormy silence, focused work and hysterical laughter. I never quite know what each day will bring with the kids. Some days we all are off kilter from the get-go, others we are mostly productive. The house is often left untidy, trying to focus on what is most needed in the moment. In the long run, will it matter the house is often in disaster mode? Maybe not, but for now, it seems to matter alot. Having to choose between doing dishes or laundry, or helping someone with an assignment, or being too tired to think about doing either because I have spent hours in the car and at appts, adds to the uncertainty and tension.
The challenge really still is not having the consistency or routine in things because medical appts. and constant, long chunks of travel are part of almost every day. How can the kids not feel it, and then find the best way they know how to express themselves about how things are. Recently, those expressions have not been positive, and I am at a loss as to what to do or change to help any of us.

Spiritually, I feel like we are often on the edge. We try each day to make sure scriptures are being read and studied to prepare for seminary, meetings and temple sessions that are being attended, and Sunday classes taught. We are striving to make sure mini-FHE is being done each night. We are striving to do the things we have been asked to do. Striving has often resulted in tweaking - praying over multiple meals eaten in shifts, offering up what I feel are irreverent prayers because being in the bathroom, shower, or car are often the only times/places I am on my own for even a few minutes. It is taking advantage of a tiny teaching moment while driving a car full of 4 & 5 year olds to preschool because one of them asked about rainbows. It is asking in silent, heartfelt prayer for calm and patience while being screamed at by my almost 8-yr old or discipling my 10 yr old who seems to still have no concept of consequences. It is striving not to beat myself to a pulp for not being able to teach the kids important gospel principles that I dont have a grasp on myself. It is being thankful every moment that Heavenly Father has sent the right primary teachers and YW leaders into my children's lives. It is just trying to get through each day, hoping that we are doing things a little bit better than the day before. Sometimes it is doing all we can, and keeping hope that the little bit we have to offer will be enough.

So, I guess that is us right now, has been us for a long time, will probably still be us for quite awhile.... Not sure it helps to share more with others, in the hope it might bring some understanding. Maybe it just helps with sharing TMI and pushing others further away. Maybe it will give a small glimmer to the kids as they are older and remember these times that we struggled so. Maybe it just helps for me to get it all written down somewhere besides my heart and mind and out where I can think things through a bit more. Whatever it is, for good or bad, this is us. For now, it has to be enough. If it isnt, we will just keep trying to get out of bed every day and wear real clothes, it will be to keep trying to put one foot in front of the other, to keep trying to get through each day with kids fed (whatever that might involve), clothed, safe, and alive, it will be to keep trying to find and show patience, and gratitude for all things big or little (potty prayers are better than no prayers right?), it will be to just keep trying to do the best we can...and hope that someday it will be enough.