Letting Go

I haven’t posted for a while. Things are going well with Maddi. Sometimes it is hard to remember that she has severe traumatic brain injury. Other times it is entirely obvious.

Summer is derailing my intentions for educational rehab for Maddi. I don’t want her to miss out on activities with her friends and I also believe in JOY and HAPPINESS as well as hard work and persistence.

I am finding it difficult to push the latter. I have also been heavily involved in some other necessary things that have fully engrossed my life like trying to come up with a financial plan for our future.

I have alluded to the fact that our life has taken a serious detour but I haven’t given any details. That is partly due to the fact that sometimes people do not need that much information and partly because things have been completely up in the air.

Those of you who know me personally know that I LOVE teaching first graders. That is my passion outside of motherhood. I have spent much of my time and energy being extremely successful as well. And did I say,I love it!

One of my characteristics (for good and bad) is that I give 110% and more if I can, even if it isn’t required. According to my husband, I have two speeds; On and Off. I would have to completely agree with him. I envy those people who can pace themselves.

This full blast tendency of mine makes me highly effective in most things but it leaves me exhausted in the balance and I had to be very specific in what I chose to do.

For me it was family, my faith and school. That was it. Nothing more, otherwise I would have crumbled like the little house of cards. It was a constant battle and required diligence to establish balance and to make sure my priorities were correctly aligned.

However, there is an opposition to ALL things and this is not exempt. It takes a lot of physical, mental and emotional energy to fill the needs of all those sweet ones in my class.

With the new elements in my life and Maddi’s recovery still an ongoing issue I cannot go back to teaching right now. It has been a loss that required the grieving processes. I know it is unusual but I LOVE spending my day helping children learn but I love my family more! They have always been first.

At school, I have to connect with each child and fill their needs completely or I cannot rest. I know how precious these little ones are, not only, to their families but to our future as a whole.

I also recognize how influential I am in building the foundation for education, character and self-perception. I have to be top of my game or instead of influencing for good I could do the opposite. I am deeply committed and I fully understand my impact on children.

The journey I am on with Maddi’s recovery leaves very little energy in the balance. Working would mean that someone or something would have to fall through the cracks. That is unacceptable. Neither group should suffer; my family or my class they both deserve my best.

In the past I have been able to balance both roles but in my new world that is impossible, at least right now. I hope that it will become possible, as we get further into Maddi’s recovery and the journey moves to acceptance of new abilities.

Right now we are just trying to regain her skills and there is no manual for that and time is the most important! The earlier she rewires the more successful she will be.

I know my limitations, I cannot maintain the intensity it takes to be the kind of teacher I am and have any patience left to help Maddi navigate through four and five hours of homework. The time frame alone would put her at a disadvantage.

She is doing fabulous but the organization part that helps her prioritize the order and the things needing to be done has been affected by her brain injury.

I hope that over time we can help her establish some procedures that will allow her some independence in that area but that doesn’t happen by accident.

Just like with my first graders, learning is not an accident. The ones that have involved parents to help reinforce and further establish the pathways created in their brains at school create a permanency that those children will use forever.

That is what I am doing for Maddi, the only difference is that we have to go about it differently and at an age that it is expected that she already has those pathways built.

The schools cannot fill this need for her. It isn’t that they won’t. The structure of the school system is for broad education not an individual one. Being an educator, I know the limitation of the structure and this is definitely outside its realm.

Anyway, that being said, not working is taking a toll on our financial well-being. It has been six months since I have received any pay and it wasn’t like I had any preparation for that loss or the new expenses of the situation. I didn’t have time to shuffle my financial deck before it became a 200 card pick up in the middle of the floor.

When I began working 10 years ago we were really good at putting that pay into the extra pile but as the paycheck became steady and reliable it didn’t stay there. Besides children become more expensive as they age instead of less so. I think formula and diapers were an easy expense to calculate compared to the varied needs of teens. So my paycheck became relied upon. So this has put a bend in our road but it is just that……. a bend.

So many times in the early moments, my husband and I would say, “We would give anything to have Maddi wake up.” So in the shadow of those thoughts all of this financial woe is relative.

When I was fighting to get the therapy Maddi so desperately needed and I told the team of doctors and support staff, that I would write out a check and pay for it myself and I didn’t care if I lost my house or everything I owned. I was completely serious.

Considering what we were willing to give up, we are getting off easy. We won’t lose our home and even if we did, everything(material wise) is replaceable.  Happiness doesn’t come from things. It might be a difficult bend in our road to walk but it is so much easier knowing our family is intact and Maddi has a bright outlook and future.

So the innate teacher inside gets to work on a very personal project for a time, things could be worse! I get to use all my skills to make a difference for my family and for Maddi. That makes letting go so much easier but…………………..

I WILL MISS…

• the bright smiles on the first day and the joy the kids feel when they “really” read a chapter book.
• the beautifully written first grade stories that make me laugh.
• taking a concept from beginning to end to create a desired outcome.
• the hugs that I know “technically” I shouldn’t give but how do you say no to outstretched hands.
• the elation they find when they figure out a math concept or make a new friend.
• watching the internal strength gained from facing a “meany” and standing up for themselves.
• the creative way children see the world, unaffected by life’s seasoning.
• the embellished stories children tell of things at home that are only peppered with truth.
• the pure innocence of their trust that I love them and the time spent proving that trust was placed in the right hands.
• the energy I wish I could bottle and sell it to tired exhausted adults and drink myself at 2pm.
• the day to day relationships with colleagues, families and parents.
• the exhilaration I feel when my “kids” succeed.

Most of all I will miss making a difference, whether they remember me or not.

So it is a bend in the road but I am still walking. I still get to make a difference it is just in an alternate venue for a time.

Type “A” Myths

I am a notorious type A personality. I like order, plans and checklists. Productivity has been most valuable to me. If I am engaged in a worthwhile pursuit I can find meaning and satisfaction in whatever is needed to accomplish the task. I don’t do as well in an open ended, no resolution type of situation. Being home with few distractions and few options has allowed me to unravel many of the type A myths.

1. Getting up at the crack of dawn to exercise doesn’t increase your calories burned or the desired outcome.

2. Time is relative, being busy doesn’t necessarily mean productive or successful. Faster/more doesn’t equal better. The dust will always be there.

3. Mortality dictates a larger percentage of our quirks than the spirit does. Much of what we struggle with has more to do with the physicality of mortality than it does with any internal flaw.

4. Being a morning person doesn’t give you higher “moral” ground. We all have the same 24 hours. Does it really matter which ones you are awake for? Who cares when you get your stuff done, as long as it gets done!

5. Spirituality and righteousness include questioning, pondering and sometimes complete disagreement.  It also includes humility, patience, perseverance and acceptance.

6. It is in the quiet and the still that the work of refinement is done.

7. Sometimes you can check everything off your to do list and still neglect the most important things.

8. The things that make you “look” the best most often are the LEAST important.

9. Spirituality has no direct relationship to the hours spent warming the pews or the number meetings attended.  It is about the relationship between you and the Lord and your willingness to follow his plan, even if you don’t understand or like the “why’s” of the request. 

10. Type “A” personalities are not always preferred. Flexibility and an Open Mind make for happier, more accepting and content people.

11.  Type “A” personalities are highly productive and are efficient at getting the job done.  That doesn’t mean that their way is the only way to get it done.

12. Type “A” people agonize because of the expectation of controlling things that were never meant to be controlled.  Let it go!

13. I think life is more about ACCEPTING and UNDERSTANDING our limitations than trying to pretend we don’t have them.

Obviously, I am not a completely reformed type “A'” personality but I have a much better perspective on what really matters.  This isn’t a judgment on which personality is better either.  I love people of all varieties.  I am just doing some myth busting!

God made each personality for a reason and he needs every single one to do their part. Each unique perspective is valuable and needed.    This is a celebration that different does NOT mean superior or inferior.  We are what we are, as long as we are moving forward and improving each day, there is no ranking.  There is a place for each one of us in God’s arms regardless of the mold he used in our creation.

Writing in my Head

Every night as I start to fade into the mattress my mind goes wild with ideas to write about. I have decided it is a kick back to the hospital days when I wrote almost every night.

It has been said that it takes 30 days to create a habit, well I had 65 days and the habit is hard to break. I have to say that I am glad that snuggling, snogging and can-noodling with my husband is a much bigger motivator than writing.

After those terrible 65 days of limbo and not having my man next to me each night, I would much rather let his internal heater lull me to sleep than the words on the page.

That being said, I can’t stop my brain from actually writing. It does it in my head. So, I lay there with all the words floating around and spinning like a finely tuned bicycle.

Some of it is amazing, but more of it is reflective and mediocre. Sometimes it is more of a rant full of every swear word that I know and other times it is full of gratitude complete with beautiful, calming, reassuring sentiments.

It would be easier if I just sat down and wrote it out then I wouldn’t spend my dream sequences trying to remember the best of what was mentally written.

Tonight, I am bi-polar in my feelings. I am full of gratitude that today was one of the first days, I actually had any amount of energy that wasn’t motivated by heavy doses of caffeine.

I really think there should be a waiver for emergency coffee rations that doesn’t void the WOW (Word of Wisdom, for those who don’t know).

I have been known to seek out and linger over the smell down that wonderful isle at the market dreaming of an alert, exhaustion free morning. My secret is out, yes, I do inhale, I just don’t drink. 

I am also feeling somewhat overwhelmed by the reconstruction of our life. Actually, I would consider what we are going through more of a remodeling of life. We can’t rebuild what was, we have the distinct pleasure of starting from where we are and fashioning a new life out of the pieces that are left.

Most days follow a similar path as before; laundry, cleaning, cooking, talking, reading and working, so it feels almost normal. It is when things seem out of phase that I look around and feel like I am in an alternative reality that just doesn’t work for me.

Anyone who has had a “trajectory changing” event happen in their lives will attest that going back will never happen.  Moving forward is all we can hope for.

The moving forward is needed for everyone not just Maddi, this is a family event. Living with semi-rigid, OCD prone people makes altering the “trajectory” difficult but it is attainable.

If I only write about the good things, I give a dishonest picture of what this journey looks like.  Writing only about the happy things requires the pretense that things are perfect and just the way they should be.

I can’t do that because then I would have to pretend to buy into the idea that perfection is attainable which it is NOT and that is a debilitating, destructive lie!  Thanks Satan, We know you are a busy weasel of a should have been man.

People who pretend loose all credibility with me and looking to them as an example for strength, courage or perseverance would be like looking for a mirage.  It just isn’t believable, helpful or truthful.

We are struggling in many ways but we are advancing and getting better everyday. I believe that admitting that things are hard doesn’t mean that we have overlooked the blessings. I believe that even Jesus was able to admit that things were hard and he didn’t want to do it……….think Gethsemane, “let this cup pass….”.

Everyone has crappy days and hard things to deal with. Change is hard! It is comforting to know that the landfill of life has many occupants and our presence there is temporary. And that you have not been singled out in your afflictions. I think it shows strength when we can be honest.  How can we “mourn with those who mourn” when we don’t know what is going on?  That commandment is impossible if we are all pretending.

Sometimes things just happen and there doesn’t have to be a reason. Sometimes an accident is just that, an accident. Sometimes the best laid plans have to be discarded for a new more pertinent one.

Sometimes, we are just victims of unfortunate events and it has nothing to do with God or our choices. Looking back you can always see ways to improve the “now”, but if we were to go back without the knowledge from the journey we would probably make the exact same choices.

Here are just a few of the difficult spots for us right now:

1. Losing 1/3 of our income has put a damper on all of our short and long term financial plans and just paying the bills.

2. Not being able to plan for our future because of lack of information and not knowing what Maddi will need. I am a planner.

3. The debilitating emotional and physical FATIGUE and STRESS of remodeling our life.  Praying about it or having more faith doesn’t alter that fatigue.  God may strengthen us so we can more comfortably carry our burden,but it doesn’t go away.

4. Balancing how we did things before and how we need to do things now and having the follow through and energy to do it.

5. Altering the expectations for ourselves and for Maddi.

6. Accepting the need to change our dreams to accommodate a new future but fearing to dream at all.

7. The unknown. So much of Maddi’s recovery now is trial and error. We won’t know her deficits until they show. Trying to discern those things that are truly gone and not worth spending our energy on and those things that just need rehabilitation to regain. A road map or a manual would be helpful.

8. Navigating normal everyday sibling and teen issues with TBI (traumatic brain injury) in the mix. Parenting is a glorious, beautiful, challenge in the best of circumstances. I have great kids but they are normal (if there is such a thing), not perfect.

Each of my kids are; fabulous, unique, talented, intelligent, hardworking and intense. If you don’t know them well, you are missing out.  They are rare individuals that walk to their own rhythm.  My music often times just doesn’t match.

I enjoy every minute with them unless they are fighting or being snarky to each other, then I just go “postal” with a mixture of turrets and swearing. I have no patience for mistreatment of other people!  I always regret the swearing once the rage passes. 

This is not something you get over. It is something you get through and learn to live with. Just because you don’t see the struggle doesn’t mean it isn’t there. Pretending doesn’t make it go away. This journey completely altered our life, perspective, our priorities, our dreams and our future and that is OK.

That doesn’t mean that our new future is negative, just different. I am sure we will find happiness, satisfaction, fulfillment and joy in our new world too. The transition is just a little overwhelming and it takes time to alter the dreams of 20 some odd years.

9. Feeling like no matter what choice you make, it will never make things right. When the only choices you have are not preferred or even positive, you hesitate to make any choices at all.

10. Feeling guilty for often hating this journey and wishing for the past. At the same time being so grateful for the miracles and gifts given.

If you want to get me raging just tell me this was in God’s plan. If that is true, apostasy is my next step. A loving Father doesn’t write out a prescription of this magnitude for us to learn a lesson.

Agency and choice cannot be taken away. Sometimes they have catastrophic consequences. That doesn’t mean God meant for it to happen. We can make the best of a bad situation but I cannot accept that God planned it.

I believe that God intervened on Maddi’s behalf for an unknown reason. When I think of others who are still in the bed unable to move I wonder why and feel unworthy.

This miracle had nothing to do with our personal righteousness or that our prayers were heard more than others. It is impossible for me to understand God’s reasons. I can only be grateful and humbled that we are even a blip on his radar.

Looking at that list you would think that life is horrible for us. Not really. Things are going well and mostly we are happy, we laugh, smile and feel content; we are just walking a challenging road. We have to make financial decisions we hate. We have to prioritize in a way we haven’t needed to for many years.

We have to give up things that bring us balance and peace and look for new ways to achieve those critical elements. We have to purposefully look for the positive or else the negative could swallow us whole. I am not complaining, just telling the truth.

The aftermath of that split second decision is still rippling through our life like a tsunami. Eventually the pond will settle and calm will return. We just have to give it time.

Through this journey, we also get an eternal perspective and a reality check on what is most important. Our faith will ultimately be strengthened, though on our bad days it feels a little shattered. We get to see miracles daily and see our very personal importance to God.

Our family will unite and become stronger. We will become more resilient and flexible which will enable us to walk this journey without every rock cutting into our feet.

We will have compassion and withhold judgment because we have walked a road less traveled, knowing that everyone, regardless of circumstance, is doing their very best and that IS and WILL BE ENOUGH!

Elliott the Therapy Dog

Saturday, Maddi did her live interview for the KSL Telethon and we were so fortunate to see some familiar faces.  Melanie, one of Maddi’s speech therapist and Joe and his dog Elliott were there at the same time.

It was like meeting up with family that you haven’t seen for a while.  There were hugs all around and of course Melanie was pleased with Maddi’s progress!  Melanie is such a gifted therapist and we owe her such a great debt of gratitude for her contribution to Maddi’s miracle.  All of the therapists at Primary Children’s Hospital are amazing!  They are angels in the flesh and they are masters at their craft.

I can imagine the confused looks on the faces of the reader because of the title. I don’t even know if I have mentioned the Therapy dogs before in this blog.  Joe is the owner and Elliott is the dog.  Joe volunteers his time and when Maddi was at the hospital he came every Thursday.

The reason I chose to write about Elliott is because after visiting with Joe, I was reminded how many of Maddi’s “firsts” included Elliott.  One of the very first times Maddi went to therapy Elliott met us in the gym.  Before Maddi had any real use of her limbs she was determined to hold onto a treat for Elliott.

One of Maddi’s first discernable interests was with Elliott.  She turned her head with purpose and actually looked right at Elliott.  I think it reminded her of home.  Elliott looks so much like Josie minus the white spot on her chest.

Just holding a small treat in her hands was a difficult task.  At first she was so tight with spasticity that she couldn’t even open her hand. We would wedge the treat between her thumb and first finger just like you would do with a rattle for an infant. 

We would stimulate her muscles hoping that she would extend her arm to reach out and give Elliott the treat.  It took a lot of time before she could do it independently.

With Brain Injury often times during the early stages of recovery, the more they try to use a muscle the more it does the opposite.  That was the case with Maddi.  She would try to take the treat but instead of her hand opening, it would clench tighter.

Joe and Elliott were there to play ball with Maddi as she slowly learned to use her limbs.  They were there when she was learning to hold her head and learning to crawl.  He even participated in a crawling race with Maddi when she got faster and Elliott doesn’t like to crawl.

It was a great day when Maddi opened her hand so that she could feel and pet Elliott’s soft hair. Elliott is a labra doodle, poodles have hair like humans.  During that time her facial expression was non-existent but in her eyes you could see how excited she was. 

For me, seeing recognition in her eyes with anything was so comforting.  Knowing that she remembered was such a beautiful thing.  For those teachers out there, you know when you see the light bulb of understanding or remembrance go on.  That is what happened with Elliott.  I think it provided her a critical connection to a home she had no access to for all of that time.

I remember Maddi working so hard to use the sign for dog but finding it a little difficult to form because of the lack of control she had in her hands.  I also remember her determination to correctly make the sign for dog and the day she finally could do it. 

I remember after a visit with Elliott, Maddi felt sad because it has been so long since she had seen Josie and been home.  It was interesting because instead of feeling sorry for herself she expressed gratitude that Elliott and Joe were there.

Maddi’s favorite was when Joe would have Elliott pray for her.  Elliot would sit next to the gym table and put both paws on the table and bow his head.  When Joe said “amen”, Elliott would concur with his manly little bark.  Maddi loved this trick.  I would love to train Josie to do that.  I just haven’t gotten around to it yet.

It was incredible how many memories of Joe and Elliott came rushing back as we sat and visited while waiting for our turn on camera.  I wish that I had a picture of Maddi with Elliott.  I just didn’t think about it.

I wish I could describe the slide show going on in my head better but the connection between Maddi and Elliott really needs to be felt and  can’t be described.  Elliott gave her another reason to remember home and our crazy pets, even though they are not nearly as well trained as Elliott.

It is amazing the huge impact such a small gift of service has.  Thanks Joe for dedicating your time and sharing Elliott with the patience at Primary Children’s Medical Center.

I hope to get my dogs trained well enough to follow in your footsteps Joe.  One day it will happen and I will grow up to be like you!  That is the kind of retirement I would love!