Wednesday, March 30, 2011

Follow Up Appointments

Maddi had her follow up appointments a couple of weeks ago. I meant to get this post done right after while the impressions were fresh but as I have said, writing for the blog has been difficult. It isn’t that I haven’t been writing, actually I have written a lot but that has been in my personal journal.


Journal writing has always been important to me and as a way to encourage Maddi’s writing improvement that has become a part of our daily routine. We set the timer for 10 minutes and just write what is in our hearts or on our minds. I think that Maddi will find those entries valuable later on as this season fades into the shadows of the present.


Anyway, back to the topic. On March 16-17th Maddi had many follow up appointments with all the doctors that had worked with her during her stay at Primary Children’s Hospital. As we walked in those rotating doors I was flooded with feelings and images of our time spent there. It was much like the feeling of coming home.


We past the cafeteria that was our kitchen for so many weeks and climbed the stairs that were my only exercise. We heard the bustle of so many people doing their jobs in such an expert way. All of that seemed so automatic, familiar and so normal. I remember those things seeming very strange and unfamiliar at first. I don’t remember the exact moment that those places became comfortable. It is odd how easily strange becomes normal


I saw people that told their stories with the worry lines on their faces. Their eyes were sad and I recognized those feelings. You could tell those that were recent arrivals by that look in their eyes. You could also see which were a little further along their journey. My heart ached for the new arrivals and for those that had the more weathered look. I longed to ease their burden whatever it might be.


All of the appointments went well and of course Maddi is exceeding expectations as always. The best part was seeing those people who had become such a support to us during that time. They may have been doing their “job” but for us they made the difference.


Maddi was so excited to go back to the Neuro-Trauma Unit to visit her therapists and nurses. We even ran into Dr. Murphy from South Davis. Everyone was thrilled to see Maddi and excited at the changes they saw in her.


I am with her everyday so the changes that happen over time don’t seem as big. According to the people at Primary’s, the changes are huge. She has such expression in her voice and on her face. When she was there she had what they call a flat affect, meaning she had very little change in her expression or voice. I had noticed but I didn’t see it as dramatic because for me is has been gradual.


It was so fun for me to watch Maddi interact with these special people. While at Primary’s I wanted those people to know the “real” Maddi with her fun personality and lively imagination. It wasn’t really possible for them to get to know her that way. Watching her in the halls laughing, smiling and teasing them fulfilled that wish for me. I know it was a very small moment but they got a glimpse of her outside of the brain injury.


We also were able to see Elliott the Therapy Dog. That was a highlight for Maddi too. Elliott looks just like Josie, our dog and Maddi really responded to him. I am so grateful that Joe takes the time to come and brings Elliott to visit those kids. Maddi lived for Thursdays when he would come.


It was great to see everyone but it was nice to feel like we didn’t belong there too. When we were in the rehab gym there were other patients working there and it brought back those feeling from when Maddi was on the mat trying to figure out how to walk and hold her head.


Relief washed over me as I recognized the possibility that could have been our reality and those monumental battles that have been won during this journey. All of the worry and agony of not knowing how much mobility she would have is gone and it seems so surreal that we were ever in that moment.


As we completed our time there and prepared to leave for me there was that gratitude that we could leave and that Maddi was well enough to be home. I was grateful that this hospital was on dedicated ground and that they had the expertise to treat her.


I was also overcome with gratitude that the will of our Heavenly Father was for Maddi to recover. It should have been so different. I feel overwhelmed with gratitude that my daughter was given such a great miracle because I know that not everyone has this type of outcome.


I have always felt indebted to my Savior but now I feel indentured and I am thrilled at the opportunity. I hope that I will be a profitable servant and honor to him through my actions each day.

Tuesday, March 29, 2011

Broken Mugs and Accepting

 

I am having difficulty writing on the blog right now. There are so many things that are deep and full of grief for me as the mom that I hesitate to write about them because I don’t want to affect Maddi’s perception of her healing. In my writing I follow the same pattern as I do in life. I can only write from my whole heart. It is an all or nothing experience.

When I am struggling, I write about the struggles. When things are great I write about how great things are. I am one hundred percent authentic, I can’t pretend. This leaves me very little room when it comes to letting other people into my heart. Once the heart is opened it is vulnerable. The blog allows so many people in that I feel a bit exposed.

I hope that our journey is helping bring others to a life full of Faith but I don’t profess to “having it all together”. I am not perfect and the rest of the family isn’t either. We are just average people having an extraordinary experience right now. Sometimes we manage well and sometimes we don’t.

Maddi cried for the first time since the accident on Saturday evening. She broke a mug because she didn’t calculate the distance or didn’t pay attention to the details of where it was and it fell to the floor. It was a simple thing that could have happened to anyone. As she stood there in the middle of the ceramic shards and water, her emotional state matched the abstract picture on the floor.

She said, “I feel so stupid.” I assured her that things like this will happen and it is OK, it has nothing to do with intelligence. She said, “But I feel stupid a lot of the time now. I can’t get my brain to respond the way it should.”

I would have died right there for her if it meant that she would be whole! My heart aches for her struggle. Others who are not so emotionally intimate with her would never know how hard this struggle is. Because I am her mom, I get to see inside that part of her. She is amazing in her attitude but this is for life!

I think part of her struggle was due to the fact that Mason got his ACT scores back and he got 33 out of 36. That is amazing and of course we celebrated. All of my kids have done very well on the ACT and Maddi was on track to do exceptionally well too. She said, “I don’t know if I will even be able to take the ACT.”

I think she is beginning to process how this may affect her life and to do that she has to mourn for all the goals she had in the past. She has to mourn for the ease she had in learning and accept the lifelong change this journey includes. As a mom, I know this stuff, but I don’t want her to have to feel it.

I have been a bit emotional ever since the broken mug. I want to just cry for her and I have. I want to pick up the pieces and magically return everything to the way it was. I know it is unrealistic but I can desire it. She looks so good that people don’t realize what she has lost. The gratitude for the miracle is not diminished by our longing for things to be unchanged but it does nothing to help today or the future.

It is like being held hostage by your own brain. Brain injury must be accepted and worked around. She doesn’t have access to her brain like she did before. I don’t want to give up the recovery but happiness comes from embracing the new Maddi 2.0

I know that the Lord can rewire her brain and so far he has done an amazing job. I struggle with the delicate dance between FAITH and REALISM. If I want Maddi to have a good attitude of acceptance, I must model that behavior. If I want Maddi to have great FAITH, I must also model that.

We work and plan with 100% in mind, with the knowledge that we must be grateful for any recovery we have. I hope one day Maddi won’t notice the difference between herself before and after the accident. Hopefully she will just be herself and the frustration of her brain injury will fade into the background as she develops great strategies to compensate and she is able to accomplish her new goals.

We have been blessed by such a great measure and we are so grateful. Maddi has talked of the great gifts she has received in this journey. She feels more confident and lacks the insecurity she felt before. Peer approval doesn’t affect her like it used to. She feels more secure in who she is and her value to her Father in Heaven. She knows her Savior and has felt his arms around her. She has heard his voice. She isn’t full of teenage questioning. She knows who she is and knows that she has a job to do that only she can accomplish. It isn’t about being better than anyone else. This life is about being your best self and lifting and helping others.

I wish that my teen years were full of those gifts too. I would have made different choices in some important places. I hope that those gifts maintain the magnetic hold on her as she grows to adulthood. I hope all of those gifts balance out the struggle of the brain injury. I hope that she will find joy in the new Maddi and that she will see the past as a gift as well.

Friday, March 25, 2011

Milestones

Today is a milestone day. Back in January, we were hoping Maddi would be home from the hospital for her birthday! She has been home for two months! She not only beat the deadline but also defied the odds in every way!

Today holds a special meaning for me because things could have been so different!

  • I am so grateful that I was able to hug her this morning and sing the silly Happy Birthday song.
  • I am so grateful that she could not only listen and hear the song but she could sing it too!
  • I am so grateful that her smile and bright eyes were there to welcome the day.
  • I am so grateful that she was able to jump for excitement when we found an elephant pendant that symbolizes her journey.
  • I am so grateful that she has the strength and wisdom to look beyond the moment and find happiness and gratitude for what she has learned.
  • I am so grateful that her expectations are realistic and she is content with what is.
  • I am so grateful that her deep desire to help other people is strong enough to overcome her fears.
  • I am grateful that she has friends that are supportive and loyal.
  • I am grateful that she is learning and she is patient.
  • I am so grateful for a strong and unified family!

I am so glad she is here! Maddi, we love you! You are beautiful inside and out! Thanks for choosing to stay with us a little while longer.

Here is a shout out to all of you out there: Thanks so much for your support! There is no way for me to write enough thank you notes for all of those who have helped us! Not only have we had food brought in, but money has been there when we have needed it, good friends have stood by us through out.

Prayers have been said in our behalf and we not only need them but we feel those! Family has rallied around and supported us too! I could spend the rest of my life trying to repay the kindness that has been shown to us and still come up short.

We do not like the limelight and this has pushed us out there a little bit but we have learned how many people care about us and we are humbled by the number.

So , here is huge THANK YOU to all of you out there, those we know personally and those that we have never met! Thanks for caring about us and helping us in anyway that you were able. We are so humbled by the outpouring of love!

May God grant all of you that your kindness be returned to you one hundred fold! May all of your heartache, needs and struggles be brief but that you feel well supported and loved by those around you.

Wednesday, March 23, 2011

Funny

Maddi said something at breakfast this morning that had me in giggles. I thought I would share. Now for a little context; we were adding honey to our creamy wheat and out of nowhere she started on this analysis of Pooh Bear from Winnie the Pooh.

First she said, "I don't know why Pooh Bear likes honey so much."

I replied, "Well it is sweet."

I know original, right? I was listening but I didn't take a conversation about Pooh Bear to be overly critical. I was really only thinking of how to get her to keep eating and going through the daily list of things she needed to do so she wouldn't forget something. It takes much more effort to come up with the right questions that don't do the thinking for her. It would be so much easier just to tell her or have the list written out.

She said, " He sure goes to an awful lot of effort for just a smidgen of honey though and I don't understand why he has to eat the whole pot at one time. It would make more sense to save some for later."

I replied, "true, true"

Again, fantasising about her putting one bite in her mouth right after another like an assembly line. I love this girl but my unhealthy relationship with food has been exacerbated with the amount of time we spend doing this task. I figure I could save about 20 hours a week if I didn't do food related tasks like cooking, dishes, food storage, and grocery shopping. UGGGG!

Then like a true philosopher she pulls this one from somewhere.

Maddi said, "Pooh Bear mustn't be a Mormon Bear."

At this comment,I had figurative question marks on my forehead.

She said,"If he was a Mormon Bear he would stock pile his honey for food storage. That way he wouldn't always be looking for it.

Then after a few more spoonfuls of creamy wheat she remarks.

"Rabbit must be the Mormon in this story. He gardens.............. and he stock piles his food."

After I stopped chuckling,I was actually quite impressed at her evaluation and analysis of these characters. I guess all of those reasoning activities are paying off. Her triumphant smile tells me she saw the humor in this conversation too.

So which character are you?

Sunday, March 20, 2011

"School At Home"



20 March 2011

Time is always short and there is always more than needs to get done. Now that Maddi is at school for part of the day you would think that I would have time to get some personal things done. However, having her gone reminds me of having a child in Kindergarten. You just drop them off when you have to turn around and pick them up again.

There is curiosity about what we do at home. Before Maddi went back to school her day was divided into two parts, Academic/ Cognitive Activities and Functional Activities. Now that she is at school we have to include her school time and homework. I have to include appropriate breaks to allow her brain to rest.

When we first got home from the hospital we could focus on one thing for about 15 minutes without her getting fatigued. Now she does really well for about 30 minutes. That is great improvement!

Academic and Cognitive Activities

Puzzles

Writing

Math

Story Problems

Strategy Games

Processing Speed Games

This time is specific for development of Maddi’s cognitive development. The area of focus for Maddison is called Executive Function. This includes, reasoning, problem solving, and inference, planning and organizing.

All of the activities I plan are intended to help her develop those pathways in her brain. This is essential for her to be able to make decisions throughout her life. Long after this season has past, Maddi will need those skills.

“Having to relearn everything is hard and kind of frustrating.”

This is an understatement to be sure. Just like Maddi had to learn to access all of her body and motor functions, she is now learning to access the different parts of her brain too. It takes a lot of time and incredible amounts of patience to guide her instead of just doing the thinking for her.

Puzzles are a great problem solving activity. We started with the easy 24 piece puzzles. Now we are working on 500 piece puzzles. I have divided the puzzle into smaller groups. I have done this for my first graders to make these big problems approachable. This has worked really well for Maddi.

Before the accident Maddi wasn’t a big puzzle person but Maddi 2.0 has found an obsession. The hardest thing is to get her to take a brain break when she becomes cognitively fatigued. We do a lot of writing also. Writing requires planning, problem solving and organizing. She also has to choose a topic and decide on the relating details as well as choose appropriate wording for what she is trying to say. This is a great activity; however it is a difficult task for Maddi.

Her thinking is very concrete and she doesn’t seem to generalize ideas right now. She has great ideas but needs a little help getting her to “spin” the words and ideas around. She tires easily during this activity.

I think part of her fatigue has to do with the frustration of remembering how much she enjoyed this activity. Writing was always something she did for fun as a part of expressing her creativity. I am just glad she is a hard worker and doesn’t shy away from difficult things.

The way I help her is all about waiting and asking the right questions. The questions need to allow her to think her way through it. Sometimes I do it well and other times I have to really work at not doing the thinking for her. She is improving so much but it just takes so much time! All of the academic and cognitive tasks take so much time.

Functional Activities

Cooking

Laundry

Cleaning

Organizing; closets, menus, shopping lists

Planning; meals, schedules

We divide our time between the Academic/Cognitive and the Functional ones. Functional activities are all those things that you teach your children as they grow, making the bed, folding laundry, cooking, cleaning. With Maddi it isn’t that she can’t do them but it is more about the organization of doing those tasks.

This is probably the easiest part of the day for me. The most difficult part is the time involved. I can have my house clean in a very short time but the process and time is more important with Maddi. We get to work in the kitchen, clean the bathrooms or do the household things that need to be done. The focus and follow through are areas of concern while working with Maddi. All of the functional activities have multiple steps required for completion, remembering all of those steps and following them in the order can be difficult.

I describe it like this; all of the steps are known and she can do them but they are in a hat without any organization. She has to pull them out and keep it all straight. This doesn’t happen by accident, it takes direct teaching and specific strategies that help her compensate for the injuries in her brain.

It will take time but the outcome will be so much better if we do it now. Honestly, it is too early to determine her deficits but she has many strengths! I know that for most people the accident was so long ago, but for us this part of the journey is still very real and complicated. I can’t push too hard but I have to push hard enough. There is such a line to dance around in this area.

It would be so much easier to just send Maddi back to school and decide that what we have is, all there is, but that wouldn’t be fair to Maddi. Her on going rehabilitation requires one on one teaching. Hard work and frustration are part of the day but at least we have the day and Maddi is here to be frustrated. Maddi is such a trooper!

Maddison rarely complains and is so willing to do whatever I ask of her. I am so grateful for that! Her attitude makes this journey so much better. If she was resistant, ornery and negative, I would feel the need to retreat but, for the most part, she is delightful. I don’t do very well when I am with people who only see the empty glass.

Maddi’s positive attitude helps me on the days that I am discouraged too! I think we help each other. We are so fortunate that Maddi’s recovery is going so well. Life is good and I am enjoying life with her and my other great kids. It is an adjustment but just like the time at the hospital, the Lord is helping us through this season too!

It is amazing to me how many times my prayers are answered during scripture reading. I would be lost without the Spirit to guide me! We are so grateful!

I finished Pres. Monson’s Biography and I miss having him as my personal mentor. I found reading that book helped me in so many ways. It gave me an insight to his approach to hard things. I might just read the book again just for that benefit. If you haven’t read it, I would highly recommend it.

Now you know what our days look like!

Moving Forward!

Friday, March 18, 2011

People say the darndest things!

18 March 2011
People say the darndest things!

I always try to find the best in every situation but every now and then, I am amazed at the indifference some people have to those around them. I am a slow to anger kind of person. I try to give everyone the benefit of the doubt even when they are at their worst. I truly believe that there is good in every person but…………… every now and then I wonder.

Here are some things that I have heard recently:
1.“Well, I guess you will finally know what it is like to have your kids do something hard.”
2. “You will finally know what it feels like to have a disabled child.”
3. “I guess it is your turn. You have always had it easy!”
4. “So much for your perfect world.”

OK, now I don’t usually broadcast my business mainly I believe that what you focus on expands. You will rarely hear me complain about my struggles not because it isn’t hard but because I don’t think it is overly helpful or beneficial in any respect.

Also, I whole heartedly believe that every person on this planet has hard stuff in their lives! NO ONE has claim to the ultimate difficulty in life except maybe Christ. He is the picture of doing all the right things and getting the most disastrous results in mortality. He saw the big picture and I try to do the same thing.

After hearing these judgments of the ease of my life I actually found myself wanting to “educate” this person physically, if you know what I mean, maybe with my hands around their neck. Contribute those feelings to a long deeply emotional journey, lack of sleep and me being in a difficult, very unsettled time, it doesn’t really matter. Needless to say I was speechless.

I hate being misunderstood and I truly expect other people to be genuine in their compassion and kindness for every person going through this temporary human condition. I wanted to scream and throw a tantrum right there and then. Not because they said something “wrong” but because they were so blind and pressumptious. Also, because everyone has days where the struggle feels bigger than life and I happen to be in one of those seasons right now.

First, for those of you who don’t know me personally, I have three other children besides Maddison. All of which are fabulous kids but not one of them is perfect! All of them have their struggles and because I am the mom I hurt when they do, I am so proud of their accomplishments. I want to protect, defend and ease their burdens just like everyone else. I want to brag about how great they are too. I, for the most part, keep my head about me but that doesn’t mean I don’t feel it. I just look at what is going to be best in the long term for my kids. Parenting is the most intense, emotionally difficult job in the universe!

One thing that obviously these people did know is that my children don’t struggle academically. In fact they don’t even have to work at getting good grades. They can fall out of bed and ace a test without even looking at the material. That “gift” breeds lack of initiative and avoidance of hard things. What they obviously don’t know or don’t truly understand is that two of my kids have High Functioning Autism that distorts their social and communication abilities.

A temporary school day with a three month reprieve seems like a bargain compared to the LIFE LONG struggle to make and maintain relationships, read social cues, interact appropriately and understand the temporary “high school” stupidity that seems to drag on long into adulthood for some people.

They have difficulty recognizing good friends versus bad ones. They struggle to find loyal friends that have enough strength of character to not be bothered by the quirky nature of Autism/Asperger’s. All of which is INVISIBLE to the outsiders looking in.

This affects them forever, people! They don’t grow out of it! They have to work at it every single day of their life! They get to work hard and learn things that have no grounding inside them at all for the whole of their life! It isn’t about good parenting either!!!

It affects their marriage, family, friends and job opportunities. It puts all of those things that bring joy in life just outside their reach without a great deal of work on their part. Reading, Spelling, Math and Writing seem pretty minuscule in comparison.

I don’t want to down play the struggles for those with learning difficulties or disabilities. I teach emerging readers, I know how hard it can be. It is difficult no matter what the struggle is. I just wanted to put it out there that school is temporary. You don’t spend your whole life, all 80 to 90 years in that setting.

Those comments directed towards me seem almost comical now. I wanted to laugh and scream at the same time. I think we all do it though, we look at someone else’s life and say, “I wish.” That is jealousy talking and most times the details of their life are very different than the fantasy created in your own mind.

I am sure those comments just didn’t come out right and maybe I was having a more difficult day keeping my own spirits up. I don’t hold any grudges or harbor any ill will towards these people because maybe, just maybe, they were struggling too! I don’t remember what I said but I do know that I controlled my "urges" and smiled and hopefully they walked away uplifted instead of throttled.

So here are the lessons for the day and I need them too:

•We know and understand so little of the details of a person’s life that it lacks compassion, mercy and intelligence to make any sort of judgment regarding any of the particulars in their life! Looking in through the window hardly makes you an expert on what life is like for them.

•Everyone has difficulty that is part of the journey called life! Anytime you find yourself in a slump, give yourself time to be mad, sad, angry, devastated or whatever the emotion is and then move on knowing that everyone has those days. The statement, “It came to pass” has significance here.

•Since we all have to deal with crappy stuff, let’s go out of our way to make sure that every interaction we have with people helps them see and feel the best about themselves instead of the opposite. Let’s look for ways to lift and inspire those around us. Instead of judging that struggling mom or that awkward teen, maybe be a friend and a help instead. Focus on the good and it will expand in your life!

Thursday, March 17, 2011

Tender Mercies

17 March 2011
Tender Mercies


As I have been compiling information for different entities that are working with Maddi, I have found that I have forgotten or didn’t quite truly understand some little things that happened at the hospital. All of these forgotten or misunderstood things I am putting in the tender mercies category.

Being reminded has given me an even deeper appreciation of the miracle that has blessed our family. So I thought I would share them with you. First, because this is a huge miracle and second because it might make you laugh at my expense and everyone needs a good laugh!

The biggest reminder was found while reading her discharge papers. The list of diagnosis was pretty extensive. The thing that hit me the hardest was when I saw Maddi’s Glasgow Coma Scale score, think Apgar score for babies. This score tells you how profound the coma is and is a good indicator of the likely hood of recovery. This score goes from 3 to 15. To quote the definitions; 3 is deep coma or death, 15 is fully awake. Maddi was a 4-5 on that scale.

I don’t know if they didn’t tell me or if I just shut it out or if they told John when he arrived at the hospital without me, but I don’t remember being told anything lower than a 6. I saw that number on her paperwork and was a little taken back. I am so glad that I didn’t have that understanding then. Six holds so much more hope than a three. I believe that God knew what I needed in those moments.

The other conversation that was replayed in my mind was when they gave us the worst case talk. I have mentioned that conversation before but left out the details. This tender mercy is actually laughable. When it finally hit me and I realized my vocabulary misappropriation, I actually laughed out loud. I couldn’t believe that I didn’t get it. I count it as one of the best of God’s tender mercies given to me during this time.

Here is the setting for the conversation, (I want you to have the same laugh out loud moment). We are in the PICU (Pediatric Intensive Care Unit) and the doctors are going through all of Maddi’s scans and her many injuries. This is serious stuff folks. I hope none of those reading this ever have this experience. The doctor is so kindly preparing us for Maddi to never wake, speak, walk or move again ever. He told us that her injuries were at the CELLULAR level.

My reaction though not spoken aloud was,
“Cellular means small, that isn’t so bad. Healing a cell has to be better than the rest of it.”

I told you I am that annoying optimist! I must have had my own version of a Traumatic Brain Injury because what the doctor was trying to say was the opposite of what I understood. I am a relatively intelligent person but I didn’t grasp the magnitude of that type of injury.

I understood global, nerve damage, motor control, speech center, cognitive function, shearing, hematoma, cranial pressure and many other terms they used to describe her injuries but I missed the meaning of a basic biology term. So much for passing the basic life sciences competency test. I can tell you how cells grow, what they need for life and how they are the building blocks of our bodies but in regards to Maddi’s injury it seemed the opposite of severe.

Her injuries were at the most basic part of her brain. You can’t get much more basic than where everything begins. In terms of understanding, here is how it works in the brain; you have the cells, then you have the pathways that send messages to the nerves that allow the brain to control everything you do. Her injuries were at those cells where everything starts.

How grateful I am that I didn’t get that picture in 3D at the time. I know that the brain is a mysterious thing and we know and can predict very little but in this area there wasn’t much guessing going on. The doctors were good about letting us know that they couldn’t make any promises but they told us what they did know and what they have typically seen in her situation. The prognosis wasn't very promising at that point.

I want to say I don’t know where I got my outlook and my hope but I do! My Father in Heaven took notice of me in my hour of need and provided for me! It didn’t come in a feeling, a burning or a still small voice. It came in my inability to grasp the simple concept of CELLULAR. For that I am so grateful. I can’t say how that would have affected the outcome but I didn’t spend much time worrying about it.

One thing I kept telling Maddi was, “God created and wired your brain the first time, he can rewire or rebuild it again.” Of that I had no doubt! I knew that he could do it, I just wasn’t sure if he would do it. I wanted to be sure I aligned myself with HIS will not mine and I wanted to endure it WELL not just get through it. I wanted to be able to find joy in this journey as difficult as it was and still is.

Maddi is still recovering. There is so much work to do, most of which has to do with patience and acceptance instead of brute force or deep concentration. Learning to adjust to new learning styles and difficulties is hard work. Probably the biggest thing we are working on is Executive Functioning. Executive Functioning is problem solving, reasoning, decisions, predicting and inferences. For those of you who knew Maddi 1.0 recognize that she was highly developed and had deep interest in these areas before. The difficulty is not only completing these tasks but REMEMBERING how it was before and understanding the difference inside her head.

Maddi can develop these skills and she will but she needs guidance in recovering those abilities. Those skills won’t just miraculously emerge. It takes hours and hours to help her find those pathways just like helping her find her legs, arms and voice. It requires waiting long enough, correct questioning and allowing her to slowly take it one step at a time and make those decisions. However,if you look at long term and lifelong happiness these are probably the most critical skills to develop. I am not really concerned about curriculum, facts and dates as much as I am about these skills.

Together we work hard, take lots of cognitive breaks and then start again. My perspective is that people learn throughout their lives so regardless of age or how long it takes and this is no different. So,we will continue to work towards effective Executive Functioning without worring about time or percieved opportunites passing her by.

She is doing absolutely amazing! I can’t complain in the least. Life is busy but good! One day at a time, one skill at a time. It is about accepting what is but also working towards the best outcome. I am thrilled with her progress and I understand that it is all about time now. We can’t rush it or push it.

The parallels to our everyday lives are very apparent to me.
1. Take it one step at a time.
2. Be Grateful for every moment, skill, memory and bond that you build.

When the Lord says, “line upon, line, precept upon precept” I know what He means. “Through small and simple things, great things are brought to pass.” I believe this too!

I have seen it with my own eyes, five minutes at a time can be the difference between mobility and disability. I believe that those same five minutes spread out throughout the day can be used to develop those Executive Function pathways as well. Time will tell, but I work for no regrets regardless of the outcome, with the inspiration of the Lord as my guide.

Tuesday, March 8, 2011

Walking

Walking
Maddi also will post on her perception of learning to walk again. I have actually had questions about how the walking process went. Maddi doesn’t have many clear memories of the details of that process but I certainly do. Those of you who know us personally know that John and I love parenting together and wanted more children than we were blessed with. We have filled out all of the paperwork for adoption but life has dealt us a different hand than we expected. It is ironic that Maddi’s experience has required us to go through every developmental stage again. We love to be part of the growth and learning of each of our children but this was one journey we never desired.

When Maddi was still in her coma there were two things we were longing for; her to speak and for her to regain mobility. We were encouraged to accept what was and work towards little tiny improvements. If you know me I am a do-er. I believe that hard work can improve any situation! We had so many days in the PICU (Pediatric Intensive Care Unit) where the only movement she made was when we physically changed her position. I had plenty of time to formulate a plan. One thing that creates balance for me is a plan. I was trying to learn as much as I could from the experts so that I could see what my parameters would be.

During this early time, I was praying to know what my role needed to be and how to best help Maddi in whatever state of recovery she achieved. I was learning how to care for an extremely disabled child from the amazing staff but I was being taught through the Spirit the skills that would be needed for Maddi’s ultimate physical and cognitive recovery.

I was already doing the range of motion exercises every hour to help Maddi’s muscles from getting stuck in the spastic position that a coma places the limbs. When the brain gets severely injured the arms and legs go into a spastic position with the arms bent upward with the hands in a tight fist and the legs go out straight at the knees and ankles. Without the range of motion exercises the mobility in those areas would be lost. I was religious about doing those exersise. It was at least something I could do for her. Mobility could only happen when her joints and muscles relaxed. I considered that as step one on the mobility journey.

Once Maddi was taken off all the tubes and machines the hard work began. I participated in every therapy session so I could learn! I instinctively knew that the experts could only work with Maddi so much. I knew from working with my Autistic children that overcoming sensory issues are a pretty big deal and that it was and every day, ALL day job. The Spirit prepared me for that journey. I knew what was required and I was willing to give every ounce of effort left in my person to fulfill that capacity!

Learning to walk began on the side of the bed and in the chair. Gaining head and neck control was a huge effort. At Christmas time I asked my closest friends and family to pray specifically for Maddi to find her neck muscles. The specialists told me that the neck was a very tricky skill to relearn and it usually comes last. I had the strong and distinct impression that I needed to help her find neck muscles and for me not to delay that work. So I began to stimulate her neck with essential oils and to massage her neck and shoulders. I also made sure that anytime she was in the wheel chair she was expected to hold up her own head.

At first she could only hold her head for less than 5 seconds. It was discouraging work. So I did an alternating time plan. I pushed Maddi’s head back and told her to hold it there and then I would count. When she couldn’t hold it any longer, I gave her minute break. Then we would begin again. I can’t even begin to calculate the number of times I said,” Maddi, in the chair your only job is to hold your head, you can do it. I know it is hard. Keep trying.” I would remind her of the prize of walking at the end of this one journey. That was just the neck development; the other part was for Maddi to find her legs.

At that time, Maddi was moving her left arm and leg in a reflexive manner but nothing intentional but the Spirit spurred me on. She was trying to figure it out and I could tell by the look of panic in her eyes that she was so confused by her inability to control her body.

Every hour when I did the range of movement exercises I would sit her up on the side of the bed. I would kneel behind her to provide trunk support. I would position her hands on the side of the bed and lock her elbows, hoping activate the muscle memory of sitting on her own. Then we would start on the head again.

We didn’t stay at this for too long because the look of terror in her eyes would quickly tell me to stop. It was an intuitive feeling to see how far to push her, but as time went on the expectations and time increased. The theory behind the “plan” was that if Maddi can only do teeny tiny increments at a time then we will just provide those smallest of increments multiple times a day.

After doing the sitting, we would move into the “dancing”. Maddi would start sitting on the side of the bed and then I provided her support and made her stand, think of a strong hug! We did this face to face for many, many days, and we would dance, shifting her weight from foot to foot and leg to leg. It was so hard at first, but little by little her strength improved.

Eventually, I stood behind her and she began helping us during transport from bed to chair. Finally one day she picked up her foot and took a step! I was screaming with joy inside but I had Maddi to stabilize so the happy dance was out of reach.

After that she was extremely determined to walk. It took a dedicated, consistent month, every day, all day long to build her strength. I would have been physically and emotionally easier to let her just lay in bed until the “experts” came into work with her but the Spirit carried me and gave me the strength to continue when all I wanted to do is go fetal in the corner. The night would come and my broken ribs and muscles would be screaming at me all night long just to begin again in the morning but it was completely worth it!

The Physical Therapist at South Davis came in one day during our “hourly” therapy session. He was amazed that I knew what to do. He, in jest, asked where my PT badge was. I said, “I don’t have one.” He said, “Well you need one!” He then asked me what other things I was doing with her and so I showed him all she could do. I can’t speak for him, but he seemed pretty impressed at Maddi’s skills. He caught the vision that day with her and became such a motivating factor in her success. Prior to Matt catching the vision, I had a little, tiny bit of guilt because I really wasn’t “supposed” to be doing all of that with Maddi but I couldn’t help myself.

I knew that every day that past was a day we couldn’t regain. I also knew that a rapid recovery meant a better overall outcome. I had to follow the plan that the Spirit showed me and then regardless of the outcome I could be at peace with the results. I figured if God can show Nephi how to build a boat, and divide the Red Sea for the Israelites, he could teach me to rehabilitate my own daughter. I just needed to roll up my sleeve and get to work with Faith as my guide.

To work we went, Maddi and I. I truly believe that the most dedicated athlete doesn’t stand a chance at beating Maddi in her efforts. For some people Maddi got hurt, went to the hospital, stayed a while and now she is all better. I wish it has been that easy but honestly she has proved her ability to work hard and push her body beyond its threshold so much more than I have ever done. She may not be able to run a 4 minute mile or beat someone to the ball in a team sport but she has kept her eye on the goal and pursued it with a vengeance.


video



Learning To Walk (by Maddi)

Learning to walk again was hard but I did it. I don’t remember much, but I remember that I was telling my legs to move and they just wouldn’t. It was very frustrating because walking was one of the many things that came automatic. I really had to think and focus to walk, but before it just happened and I didn’t have to think.

My mom started by sitting me up on the side of the bed and “dancing” with me. She made me put weight on each foot and when we would move from the bed to the chair she would tap my heels to remind me to move my feet. That’s what got me walking. Thank you mom!

She told and showed Matt what she was doing and he said, “I think she can walk.” and she said, “Let’s try it.” My PT (physical therapist) Matt was the one who pushed me to get walking. At first my parents had to help me and then they gave me a walker, I was mad at first because I didn’t want to need the walker. I didn’t want to be like that forever. I got so mad that I flung the walker against the wall, but it helped me gain independence, confidence, and my balance.

Thank you Matt and mom for helping me walk. Walking is becoming automatic again.

Friday, March 4, 2011

School!

Just a quick update to commemorate a huge step for Maddi! I know with Facebook some of you have already heard that she was in Art class. It has been a hectic few days getting all of that ready and set up with the school. She went back to school part-time starting on Thursday of this week. She was so excited. Wednesday night was almost like Christmas Eve with a 6 year old.

She is taking two classes; Art and US History. We have been using the same US History book here at home for homeschooling so combined with the fabulous teacher, I feel pretty secure about it.

The idea of going back to school creates a lot of anxiety. Not only is attention, learning and stamina a difficulty but the social thing is a big worry. Maddi is doing great but there are definitely some differences in her personality.

It is hard enough for Maddi to figure out and adjust to Maddi 2.0 without the social expectations that everything will pick up where they left off and be the same. Of course Maddi doesn't feel that different but it is very apparent to those of us close to her.

The other element that I worry about is that our work load at home hasn't decreased we have just taken 3 hours out of our work time. Everything takes so much time to complete. The time required to include enough breaks to prevent cognitive fatigue really stretches out our day and I really try to have everything done before the other kids get home from school.

The logical thing to do is to ease up on what we are doing at home but the cognitive learning is what is happening at home. We are doing the school thing to see IF she can learn in that environment. The learning at home and school are different but both are important. Time will tell how well she does and what is the best way for her to learn.

FIRST DAY

Her first day was filled with smiles and excitement. We had forgotten to get a locker so she was a little bit late to Art and Maddi despises being late. Her personality is a little more intense so she was a little distressed about that. Of course there were lots of people happy to see her and her friends were so glad that her empty seat at the lunch table was finally filled again.

I am so grateful for Maddi's wonderful friends. Her best friends have been supportive,loyal and understanding! I think that speaks to their character and what amazing girls they are! During a time that kids only want to fit in and conform they are more concerned with being loyal and kind to each other. What a tribute to the families and parents these girls have. Thank you for raising such rare, remarkable, strong girls!

Of course, you always have the mean kids no matter what is going on. I just feel sorry for them. They must be the most miserable people around looking for ways to hurt others. Maddi handles them like a wise old sage, she just said, "that is typical old _________. That is totally not my problem!"

I am so glad she has that perspective and that wisdom wasn't lost in the maze. I was worried about her being able to process those types of situations. That put "this mom" more at ease.

Maddi said that it felt so good to feel normal. She didn't eat much of her lunch which is also one of my worries. Eating still hasn't gotten much easier. It takes a lot of time and focus for her. It will eventually work itself out, I am sure, but she doesn't have any extra to lose in the meantime.

We can tell that going to school taxes her. She comes home very fatigued and struggles cognitively and physically afterwards but I think that will improve with time as well. As long as we can keep moving forward then we are happy.

One step at a time!

Thursday, March 3, 2011

Learning to Walk by Maddi

Learning To Walk Learning to walk again was hard but I did it. I don’t remember much, but I remember that I was telling my legs to move and they just wouldn’t. It was very frustrating because walking was one of the many things that came automatic. I really had to think and focus to walk, but before it just happened and I didn’t have to think. My mom started by sitting me up on the side of the bed and “dancing” with me. She made me put weight on each foot and when we would move from the bed to the chair she would tap my heels to remind me to move my feet. That’s what got me walking. Thank you mom! She told and showed Matt what she was doing and he said, “I think she can walk.” and she said, “Let’s try it.” My PT (physical therapist) Matt was the one who pushed me to get walking. At first my parents had to help me and then they gave me a walker, I was mad at first because I didn’t want to need the walker. I didn’t want to be like that forever. I got so mad that I flung the walker against the wall, but it helped me gain independence, confidence, and my balance. Thank you Matt and mom for helping me walk. Walking is becoming automatic again.

Wednesday, March 2, 2011

Behind the Scene Heroes!

This post is a copy of one posted on our family blog; SandersFjord. For those that don't understand the reference to a Fjord, we chose that as a physical symbol of what our family is all about; Refuge, Safety, Acceptance, Love.

The Sanders' ancestry is from Norway. Many fjords or "safe natural harbors" are found along the coast, with steep protective cliffs. The idea is that OUR FAMILY is a safe harbor from the storms of life and that who and what you are (naturally) is welcomed, loved and cherished.


I have focused mainly on Maddi and her recovery but there are other members of our family that have become HEROES to me. This experience has allowed them to show their greatness and capacity to manage difficult things.

Maddi's injury and recovery has affect everyone of us at the Fjord. Life is good and Maddi is making amazing progress. Maddi and I will continue to post on Maddisized as a way for her to get her thought and feelings down and for me to specifically target the recovery phase of this journey, however, the SandersFjord is still operational and we are still doing lots together and learning and growing, knitting our hearts together.

Brooke and Mason have been amazing in their own realm during this difficult time. I wanted to pay tribute to them! Having older children made being away so much easier but at the same time that much more difficult. I missed them so much!

The two of them took care of each other so well. While I wasn't there to actually witness the "deeds" they need some commendation for how well they held things together. I am sure they had their bad days just like we did, but they ate, did laundry, did dishes, went to school, kept their grades up and carried on like amazingly responsible people.

I really think I have been blessed with the greatest kids! I am not the perfect mom and I am sure I left my own weirdness on them but I am so pleased with the people they are. I am thoroughly convinced that it has very little to do with John and I.

Kids come the way they come and there is very little you can do to change personality. Guidance, acceptance, correction and love are the crucial element of parenting.

We are a quirky bunch but I love it! I wouldn't trade places with anyone though................ I would love to go on a cruise or travel like some families do. I just want to do all of that with my own amazing people!

I would love to have been a fly on the wall to see them in action. I guess I will have to let my imagination fill in the blanks. One of the hardest things for me, personally, during the hospital time was when I went home, the kids were on needles thinking I was judging their work. If I got up to do dishes, the kids would think I was complaining about what they hadn't done.

I think that is pretty normal being the first time on their own, handling all of the household stuff. It is similar to the experience of a newlywed, the first time mom or mother-in law comes to visit. They want to prove they have it all together even though the visitor just wants to see them.

Really inside I was just so glad I could be home with them and do dishes or anything for THEM. I just wanted to breathe their air and soak in the feelings of home, to place those memories in a sacred place for retrieval during those difficult and lonely times at the hospital.

It is an interesting ride on all accounts when tragedy strikes. Everyone is hurting, worrying, grieving and doing their best. Misunderstandings are bound to take place. It was so hard not being able to be there for Mason and Brooke. They did just fine but this mom wanted to be there.

I am keenly interested in their experience and perceptions. They both are people of few words and rarely give anyone an inside view. They were so busy trying to help us out that there was no room for us to help them. I am so grateful for those two remarkable people! They are heroes too!

Love you both, Eternally, After All and Forever!

Here's to you both; Mason and Brooke------You Rock!!!!

Tuesday, March 1, 2011

Reality

I personally and individually haven't done a post lately because I have wanted Maddi to feel ownership of her story. I didn't want my perceptions of this experience to influence her own. We, as a family are having a common experience but all of us are having our own, individual journey. Each of those journeys are deeply personal and emotional.

When you face a life shattered and dreams stolen whether they be your own or someone that you love deeply it alters your focus and expectations. This journey is felt through all the emotions, happy and sad, angry and content. Some days are so full of gratitude that you feel like you will never complain again. Other days are so full of loss that you wonder if you will ever be able regain those feeling of peace. Some days you want to wake up from the bad dream and others you feel so close to the Spirit that you are grateful for the hardships.

I am the annoyingly optimistic friend that always finds the silver lining. I find blessings in every situation. I believe that you have to learn to roll with life and find happiness along the way, not at any given destination. That being said I also am a realist as well. I can't live in blind denial to the truths and facts facing us either. The Optimist and Realist often find themselves at odds. I house them both deep inside my personality. I like to think that they are complementary but sometimes the realist really puts a damper on my optimism.

Maddi is learning so well and is physically doing great. Often times I can completely forget that anything has happened to her. Then reality rears and the discrepancies show up. The recognition of her unmet dreams and the need to change those dreams to fit a new set of circumstances upsets my balance. I am one that believes that no one should have to settle for less. All of this is part of what will become our "new normal" but letting go of the "past normal" is part of this journey but in that there is a death.

I also know that in time this will all be a memory and life will move on. As she is determined to learn and grow there is also the knowledge that time is one of the most precious commodities we can access. In the time it takes for her to relearn there will be many doors close and I have to trust that many doors will also open.

I have been so focused on the "birth" of blessings and the miraculous recovery that I haven't had much time to contemplate the "death" of her lost dreams and opportunities. While in the death place I feel like the most ungrateful person on the planet. I should just be grateful that Maddi is here and doing well........ I am, but as parents we don't want to watch our child struggle through this maze inside her head, needing to relearn everything she ever knew.

I know that many children struggle to learn and I don't have any trouble with that. It is the remembering how it was, that is hard. I know that we are not alone in this. Many people have losses, unmet dreams and difficulties in this life. Being in a crowded room doesn't make the reality any more comfortable.

Learning to understand and know the New Maddi while at the same time longing for the old Maddi brings up all kinds of feelings for me.

I long for her spontaneity and her spunk. I long to see her humor and emotions shine through. I want to hear her stories again, see her imagination and creativity return in full blossom.

At the same time I am in love with her attitude, resilience and groundedness. I admire her humble acceptance and trust in God's plan for her. I marvel at her patience and compassion with herself and other as she learns again.

She isn't perfect now nor was she then. I don't want to assert that everything is smooth and beautiful. It wasn't before and it isn't now. Life continues and the law of opposition is part of everything! To the degree the days are wonderful, there will be those days with the same intensity on the down side. However, I can assert and testify that in experiencing the one, the opposite becomes more clearly defined.

Maddi's attitude in all of this is remarkable! She has mentioned several times that she wished that this was all a dream and that she could wake and find herself back where she was. I actually find comfort in her verbalizing these feelings. It shows that she is truly aware of the situation and is adjusting and dealing with what is.

One of the things we haven't seen a lot of is emotion. It is a little worrisome. She just calmly accepts what is. Not to complain, she could be screaming,suicidal or destructive but emotion is a beautiful thing! Emotion is what makes us human and real. It is a huge part of our personalities. It also is an important part of this journey we are on.

In our family with the Autism factor, we have always used the term, "Radical Acceptance" for things that are not what we want, expected or planned for and things that we cannot change. Maddi has used this term so many times in the last few weeks. We always say,"It is, what it is!" It has become a bit of a mantra. Even in those moments there is acceptance.

The journey for acceptance really doesn't affect our gratitude! We are truly grateful and we recognize and never want to forget the miracle and mercy granted to us. Many times I have felt the Spirit carry me on those less than sunshiny days. I have been inspired as to what learning needs to happen and how much rest is needed for Maddi and myself. I have felt the warm confirmation of a decision that was made and the feelings of all is well. I know that the our Savior lives and that we have a Loving Father in Heaven.

Even when I am wondering about our situation I find that no matter how difficult things are and how battered our prior life is, there is purpose, peace and knowledge that God knows us by name, and is aware of our needs.

Acceptance is needed for moving forward.

FAITH is required to move forward with peace and happiness. Or as Maddi so eloquently said;
"It takes FAITH to live!"