Mad! Mad! Mad!

If you know me well, you know that I don't like to cry. I don't like to cry in front of people and I don't even like to cry by myself. Well, all that went out the window today and I sobbed like I never have never sobbed before in my life. And why not? This is the most pain I have ever experienced in my life, so I guess to sob the way I did is fitting. I really don't like to think about the fact that someone is going to be reading this. (Obviously! If I don't like the whole crying thing, why would I like to advertise that I just spent the last 15 minutes doing it! :) )It is not a pity party. Just part of the journey. And if someone does read it, maybe somehow it will encourage someone, or mean something to them, or maybe they will be able to relate in some small way (or maybe you could just pray for me and our family. :) ).

So if I don't like this whole subject so much why write about it? Writing about this journey has become an outlet, a release, counseling sessions, a place to freely express my thoughts and feelings instead of keeping them inside. I'm not the greatest at expressing my feelings verbally. Heck, sometimes I don't even realize the feelings are there until I sit down to write, or start talking about prayer requests with my dear prayer group friends at Bible study. Then it all just pours out and I didn't even know those thoughts and concerns and feelings were in that brain of mine somewhere. Sometimes even as I speak them I am thinking to myself "Now where did THAT come from?!?"

So, you wanna know what I've been feeling lately? MAD! I'm not mad at God. Really, I'm not. And that surprises me a little. I understand that His ways are higher, and that He took Mom home right when she was supposed to go home. I understand that she is way better off there than she would be here. I'm glad Jesus took her when he did so that she didn't have to suffer any more. Really, I believe God's timing was good in many ways.

I'm not mad at Mom for leaving. Who could be mad at such a precious lady who meant so much to so many?

I'm just mad. Mad that I can't ask her how my new skirt looks and if she likes the necklace I just bought and ask her if she thinks it was OK to spend my money on it. Mad that she's not here to talk through my struggles with my children and give me fresh ideas on how to handle things. Mad that I can't just call her up to say "hi" and "how's your day" and hear her cheery voice on the other end of the line. Mad that I can't bring her a bouquet of lilacs from my lilac bush and thrill her with their beauty. Mad that she's not here to encourage my kids and rejoice in their achievements. Mad that she's not here to take my kids shopping for school clothes and have fun days at the beach with us. Mad that she's not here to build into my children's lives. Mad that I can't check in with her when Reid's out of town and I'm feeling lonely. And there's more, but I'll just stop there. I'm just....plain.....mad. It stinks! Big time!!!

Sorry for the ranting. This is just how it is. The nitty gritty truth whether you like it or not. No fingerprints today. At least not that I can see yet.

And yet.... I believe there will be fingerprints that come from this. I don't know when or how, but I do believe it. God will make something beautiful out of this yuckiness. And I am willing to walk this road for Him (as if I have a choice! :) ). I just wish we could hurry up and get to the good part and leave this place of pain. Oh, I know. It will always be there at some level. I will always miss my mom. More than I know, I'm sure. But I know there is a purpose for everything, and I know God makes beauty from ashes, strength from pain, something or other from mourning, etc. as some song says. And I trust that He is good. And so I open myself up to feel, to live, to experience pain, that He may work in me and use it somehow for His glory. Make beauty from these ashes, Lord. Amen.

And Mom would say... "You count your blessings!" So here's a little list of blessings in honor of you, Ma.

1. We had lots of wonderful years with you.
2. God has given me a precious family.
3. God blessed me with a true man of God for a husband.
4. God brought us back to Oregon in time to have a few years close to you.
5. God has blessed me with great friends and a wonderful church family.
6. It is Spring! :)
7. We are provided for amply even in a struggling economy.
8. Cameron, Katie, Rosalie and Natalie - each their own person, each special and wonderful in their own way.
9. School is over for the day and the children will be home soon.
10. The smell of freshly baked brownies is wafting through the house. :) Hmm... better go "check" on them. :)

Final Installment on Rosalie's story.... I think!

The kids don't have school today. It's nice to relax a little. Usually that would mean no time for blogging, but I find myself alone-ish. :) Katie has friends over, Natalie is at a friend's house, Rosalie is at a friend's house, and Cameron is sleepily reading the afternoon away after spending the night at a friend's house last night. So we'll see how this goes. :)

So there I was with Dr. Andy, watching his excitement as he explained that there was a family with a son who reminded him a bit of Rosalie. They had found this organization called REACH Family Institute (http://reachinstitute.org/) and taken their son to see them. They had been to see Dr. Andy just the week before (remember the timing of my appointment?) and Dr. Andy had seen huge improvement in this boy, as had the family. So much so that they left the information about REACH with Dr. Andy and told him to share it with others and even call them for more information. I walked out of his office with hope and a lighter step.

I called the mom of Dr. Andy's patient, and she was very informative and helpful. I called REACH. As I spoke with Charlie, I wondered if it would be any different. I wondered if he, too, would brush us off as if Rosalie would make it OK in life and not to worry too much. I asked him at one point if her behavior or the things I saw in her sounded like something to be concerned about and guess what? He got it! He got Rosalie. He got what we had been through to try to find help for her. He got my feelings of helplessness!! He just plain got it! I was overjoyed and relieved and blessed. We made an appointment for Rosalie. Little did I know that we were about to embark on a life changing journey. A challenging, but oh so rewarding journey!

We went to the REACH headquarters in Medford in August of 2008, right before school started. The first day of the evaluation we gave Rosalie's history. They asked all kinds of questions about my pregnancy, the birth, Rosalie's first years and all that we had done with her. It was fun, and taxing as well. The second day was an all day lecture for just Reid and I. (With the other couple who were there with their sweet daughter born with Hydra encephaly, a condition in which part of the brain is actually missing.) We learned incredible things about brain development, how the brain works, REACH's research and history, and their method of addressing brain injured children's difficulties. I love that they see the potential in every child, that they begin by working with what your child CAN do and build on it, not with a list of the obvious things your child cannot do. They love children, love your family, love your child and are wonderful people just to be with. Their names are Charlie and Conceicao Solis, a husband and wife team. They believe that parents are a child's best teachers, and that the family is the best place for a child with developmental or special needs to grow and learn. (I could go on and on, but will stop here and try to finish my story!) The third day, Charlie and Conceicao sat down with us and gave us a program uniquely designed to address Rosalie's needs that included work with speech, occupational therapy type activities, and much more. Activities that would go back and retrain Rosalie's brain where she had missed crucial development somehow. Once the basics were retrained, we could build from there and work on higher and higher brain level learning. There is so much more here, but 1. I don't feel qualified to speak for the Solis's beyond my own experience, and 2. It would fry my brain to try and explain it all, and then I would find myself in need of the program! :)

Over the last year and a half, Rosalie has made huge leaps and bounds of growth! She is less shy, is more confident and happy, able to keep up with her siblings and peers physically, interacts with other adults besides just Reid and I, looks people in the eye (even if she IS too shy to speak to them sometimes), has improved her vision, her voice is strong and sure instead of just above a whisper, she is more adventurous, is less picky with her foods, doesn't melt down anymore, has learned to read and is reading chapter books (I didn't know if she would ever be able to read!) and much much more.

We just returned from a re-evaluation and re-arrangement of Rosalie's program with REACH. We go every 4 months. Rosalie has steadily improved since day one... no plateaus, just consistent, steady growth. It is amazing and awesome, and she is an inspiration to me with all her hard work and her "can do" attitude. She's a fighter, determined in her own quiet way. I'm not even sure she realizes the magnitude of all she's accomplished in the last year and a half. But I am so proud of her.

Yep, I'm teary. I didn't think that would happen with this story, but oh well. They are tears of joy and pride in my little girl. And the rest of the family too, who have all been a big part of Rosalie's success, cheering her on when she was reluctant to continue, joining her in her hour + per day "therapy" program to make it more fun for her, encouraging her to join them in their adventures, helping her along the way, and loving her through all this.

I skipped so much of this story. I didn't mention all the work involved in helping Rosalie, or what life was like for us before we found REACH, but I would be more than happy to go into more detail with anyone who is interested. REACH helps kids who have been labeled ADD, ADHD, dyslexic, sensory integration dysfunction, aspbergers (sp?), developmentally delayed, and more severe problems like down syndrome, autistic.... the whole sha-bang. Pretty much, if your child receives any kind of therapy, or receives special help at school, REACH could help your kiddo, and change your life. They have helped families all over the world, and yet they live right here in Oregon.

If I can figure this out, I'll post a picture of Rosalie taken right at the beginning of kindergarten, a year before we found REACH, and a picture of her now. Of course there is age difference, but if you look closely, you'll see it. The transformation of a child. A beautiful child, I might add. :) Wow. Thank you Jesus. One big huge fingerprint of God on our lives.

Rosalie's Story Continued

I left off yesterday with Rosalie getting help through Early Childhood Intervention. Early Childhood Intervention ends when children turn 3. At that point, if they qualify, they can go to a public preschool where they do things with occupational therapists, speech therapists and other needed therapy. Well, guess what. Rosalie barely passed her testing and therefore did not qualify for the preschool. Good news, right? Well yes, but no. Without that preschool, we would need to go to private therapy to get any more help for her. And she still needed lots of help. We found a wonderful group of therapists who worked together under one roof. And so began a very expensive year of private speech and occupational therapy. I drove half an hour round trip to therapy twice a week where Rosie received the needed attention for an hour each time. It was time consuming and costly, but we did see improvement in Rosalie's ability to communicate, learn and move appropriately.

In May of 2005 we moved to Oregon. Hurray!! Rosalie's therapists did a final evaluation. Her speech therapist said she was close to age level, and if we were staying in Dallas, she would only see her for about 6 more months. She also warned us that it may be difficult to get her connected with someone in Oregon because she was not urgently needing speech therapy. Her occupational therapist released her, but encouraged us to keep her involved in some kind of activity that would encourage muscle strength and endurance.

Upon moving to Oregon, we decided to have Rosalie evaluated at a prestigious medical facility in Portland which will remain unnamed. :) We were quite disappointed with the outcome. She went through speech, occupational, fine motor, gross motor, vision and learning testing. At the end of it all we were basically told that she was close enough to age level that there wasn't much they could do and that we would have to wait until she got into school to do anything further for her. WHAT!?!

By now maybe you are beginning to see a pattern with Rosalie. She was pretty much always functioning just barely above that invisible line. A line that meant if she was below it, she could get help, but being just above it meant that we were on our own. Having been in the field of education and having two older children who were thriving, I (and Reid) could tell that we needed some serious help in order for Rosalie to reach her potential, but we were at a loss at this point. We decided to enroll her in 3 yr. old preschool at the age of 4. I have never regretted that decision. She has always been a year older than her class peers, but really seems to be right in the middle of the mix... not above... and many times a bit below where her class is.

As kindergarten approached, I was concerned that she still was unable to identify all her letters, and did not know all the sounds. Now some of you may think this is no big deal, but given the two years she spent in preschool (the 4 yr. old preschool one in which most of the students were reading by the end of the year), the time we spent working with her at home, and the track record of her siblings, she should have been ahead of the game, not behind. At the very least, she should have been able to recognize her letters.

I spoke with the principal about my concerns. She told me not to worry too much about it. Children learn at different rates and the school system doesn't really do any testing until 3rd grade. 3rd GRADE!!! But Rosalie was behind NOW! By the time she reached 3rd grade, there would be a huge gap between where she currently would stand and where she should be! Once again we felt very left to our own to struggle through this with Rosalie. Without help I feared she would fall through the cracks, barely getting by, but not severely enough "disabled" to receive any special helps through the school system. Outside therapy was not really an option either, based on her evaluation from that afore-mentioned place.

By now, 1st grade now loomed in the ever nearing future. Still unable to recognize all the sounds to the letters, Rosalie struggled on, and you can imagine my distress. Reid and I continued to pray for direction, wondering what in the world we were going to do.

Enter Dr. Andy. Ah... Dr. Andy, my hero. :) Dr. Andy was a great doctor. He was good with the kids, and had a real heart for Rosalie and her situation, though he wasn't sure how to help us. In May of 2008 (end of Kindergarten year) I was in Dr. Andy's office for some reason and he asked how Rosalie was fairing. I expressed my concerns about her ability to learn and interact with people. All of a sudden a light bulb went on in his head.

{ I firmly believe this Dr.'s appointment timing was from the Lord. I had tried to get in two weeks earlier, but there was no appointment available until the date that I "happened" to get in. Had I gone in when I intended, Dr. Andy would not have had the information he was about to give me. }

Alas, it is time to get off the computer! Cameron is due to arrive home any second, and then there are all the afternoon duties to attend to. I'll just have to leave you hanging. Sorry! (Kind of. :) )