Easter, Hope, and Living...

My family celebrated Easter, there were eggs to be dyed and found, baskets to be enjoyed, and being in church or out in nature.  As a family we attended multiple churches, all had their own feel, and community we are still in touch with today.  There was a church in Flagstaff we attended for a few years and to this day we still are in touch with the pastor's wife (20+ years later).  My parents and I would sing at the Episcopal/Lutheran church in Williams because the woman we took lessons with attended the church and this was a way to have a 'recital'.  There were many years that Easter meant a hike, skiing, or adventuring in some way out in nature.  In the last few years there was a pilgrimage to Phoenix to join my grandma and aunt in attending their church.  There was always excitement of hearing the music, hunting eggs (when we were younger) and enjoying friends and family.  I have to admit, my favorite Easter's are not in church.   My favorite Easters have been out in Nature.

I am so grateful for my parents and their deep faith, they would share what Easter meant to them, what having faith 'looked' like to them.  Mom shared with us that to her Easter meant that we could have hope.  There was this horrible chain of events and on Easter morning, hope was born.  I don't know that I felt the magnitude of her story until adulthood.  Only when I was weathering storms could I fully embrace the thought that there may be hope.  Dad shared with us that by being good neighbors, by treating people with dignity even if we didn't think they deserved it, helped us understand what Christ-like meant, we can't be the judge, we don't know what someone is going through or what pain they may be in.  These are the gifts that lead me through life, to have hope, to be kind, and to be curious!  The lesson that both Mom and Dad instilled in us happened when we were in nature.  They gifted us the idea that we are all One, the Earth, the plants, animals, water, sky, Sun, and neighbors, we are ALL ONE.  They taught us how to make moments sacred, to ask for permission to enter spaces, and to witness life happening all around.  I think that is why those nature Easters mean so much to me.  

There was no surprise that the urge to visit the Grand Canyon came up this weekend.  I have been nervous about packing Liam, with his feeding pump, tubes, health, etc., I have let there be excuse after excuse of why the time wasn't right to dip off the edge of the Canyon.  Well, now was the time!  We packed water, food, formula, the feeding pump, diapers, sunscreen, and off we went.  There was a loose goal in mind, Cedar Ridge, on the South Kaibab trail, 1 1/2 miles.  I type that and giggle, 1 1/2 miles, what!?!?  That is a walk in the park, anywhere else!  In the Canyon, that is 1 1/2 miles straight down and 1 1/2 miles straight up.  The seduction of the downhill is almost overpowering, thank goodness for the many years of hiking the trail, I knew not to get sucked in.

The hike out was okay, the temperature was rising, and Liam's weight was tiring.  By the last few switchbacks, I could tell, I was getting done.  Sean was so supportive, I think he knew how important getting to carry Liam in and out was to me, he let me set the pace and checked in.  At the last few switchbacks, he checked in and for some reason, I heard the request differently.  What I heard was more like a declaration, "Here, give Liam to me."  I obeyed, and thank goodness feeling 20+ pounds lighter I could finally breathe, I didn't realize how tired I was!  I always have to laugh, 1/2 hour after touching the rim coming out, I am restored and ready to go, this weekend was no different!  I have hope to make the next Canyon hike down to Indian Gardens. 

Liam is growing so fast and changing everyday!  Thursday he made his first free handed steps to the couch.  He is problem solving and finding ways to maneuver things...and people so he can get where he wants.  To blow off steam he makes a loop in the living room with a pink chair as his guide.  He is learning a new 'face', he got tired of winking, so now he has an exaggerated blink.  On the trail he kept one hand out so he could wave at all the hikers we passed.  I only knew he had fallen asleep because people stopped saying hello.  He is gaining more babble words, when Sean is home the two of them can go on for what seems likes hours!  With me, he is quieter, we think because he has had so many experiences of being with me in groups of people, he has associated me with quiet.  He is still attempting to eat, frozen food, milk, or juice are his favorite.  I can't wait until next year when Liam may be more interested dying eggs, finding them, and more aware of what is happening around him.  

I am caught off guard in the moments I miss my mom so much and her vacancy is felt so acutely.  I have a beautiful hand made vile with ashes of my mom, she came to the Canyon with us this weekend.  In the moments I miss her the most, there she is helping me to remember to turn to Hope. She was there nudging me up the trail with her grandson on my back.  I am sad she won't get to hike Liam in the Canyon, and yet I know, she will be there every time he goes in.   Just like she was there with me as I picked out 'healthy' chocolate for Sean for his Easter basket and will be there next year for Liam's basket.  She will be with us next year as I get ready to teach Liam how to dye eggs and remembering all the ways she decorated eggs, there were so many I will have a hard time choosing what is first!  She is here every time I need encouragement reminding me that Easter, and Christ are all about Hope.  Through the stories we share about her, she lives on, what a gift.

Chores, memories, and more

Today was a day spent in rare form, pajamas, tea, fire in stove, and tackling chores.  Today consisted of going through files to get tax information collected, filling out insurance information on the computer, and filling out paperwork to get Liam into the system for continued support.
Going through 2016's receipts, appointments, and bills brought a flood of memories and sadness.  Going through my schedule for appointments with clients and finding eraser marks through what seemed to be random dates until I remembered.  I remembered January 5th getting the call that Mom wasn't doing so well, canceling appointments with clients so I could be with her and Dad at the hospital as they discussed hospice care options.  Mom dying on the 12th, January 16th Mom's memorial, and then trying to come back to the office and clients January 20th.  I can't fathom what was going through my head, if anything.


I think I was trying to fool myself into thinking that life was moving on in February, that I could handle the adventure of being Liam's mom, be a massage therapist, and a wife.  I also know that I made the decision to give my 60 day notice at the office, thank goodness for intuition, after entering all the yearly data, the office rent was more than I made the first 3 months of the year.  Then March 11th, a note about meeting with the Heart Surgeon for Liam's surgery.  March 19, the office was cleaned and ready to be turned over to a new tenant.  My career as a massage therapist radically changed.

And the year continued, bills were still being paid from Liam's birth in 2015.  Though, I did not have a choice how Liam was to enter the world, the hospital and insurance company did not deem Liam's birth an emergency so we got a full medical bill.  Thank goodness for our families, most of all the medical bills were taken care of so we didn't have to carry the full burden of Liam's birth, heart surgery, and other procedures.  Some clients here and there willing to be flexible with my time, willing to have me come to their homes to do the massages.  Doctor's appointments here in Prescott and down in Phoenix running every 3-4 months.
Sometime in October, I lost the part of me that ran the checks and balances of running a practice.  I had to hunt to find when deposits were made and for what amounts.  In the 14 years of having a business, I always had records of what I spent, where, when, etc at my fingertips.  This year, I had to hunt a little deeper, spend a little more time on the computer in bank statements, seeming to add salt to the wound of 2016.  Thank goodness for Sean, he took Liam duty so my attention could be spent on this tedious task!
When Liam was born we were told to check into Social Security Supplemental Insurance for Liam.  Since he received the diagnosis of Trisomy 21, there were programs to help with his needs.  He had already been signed up for a NICU program to see a nurse in our home, an Early Intervention Program, but this seemed to be something that could help in other ways.  So with our 2 week old son, we went down to SSA, sat in the waiting area for what felt like an eternity, finally got to meet with someone, and were denied because we made too much money.  We walked out with a weird sense of defeat that we couldn't get Liam what we thought he might need and yet relief that we were doing okay financially as a family, we didn't need the assistance.  We let SSA and SSI go to the side and figured with our insurance we could take care of Liam's needs.  Recently there has been a new influx of inquire of why we didn't have more governmental support for Liam, so I thought I would check in about getting him more.
We spent once more what seemed to be an eternity at DES to find out we were denied because of what our family makes, and again, we walked out with the mix of defeat and relief.  This time there is a little more defeat for me, Liam needs more support than what is given by the EIP and our insurance as a family is in flux.  The Department of Developmental Disabilities has a program that Liam may qualify for so I have just sent that paperwork in today.  Filling out the paperwork brought a wave of grief.  The grief is in knowing that at 17 months, Liam 'should' be walking, feeding himself, talking more, and he isn't.  He isn't able to take care of himself like a 17 month old 'should'.  I do know he is perfectly Liam, standing at the couch with a grin from ear to ear, crawling and singing as we chase him, climbing the stairs with a sense of purpose, babbling sweet nothings to us then squeezing his cheeks up, and teasing us with those precious moments he puts food in his mouth and that morsel travels down to his stomach instead of being immediately spit out.  I savor knowing that I get to cuddle my 'baby' and take him to work with me because he isn't running around and into everything, though he is getting into a lot more!

I have been taught that grief is layered and at each layer there is a new space that requires a visit.  I am learning to lean into the grief rather than run from it.  I have learned that grief is part of loving, and that the more one allows one self to grieve, the greater they can love.  The feeling of grief still feels overwhelming and yet, as I write this in my pajamas, I have hope that love will continue to unfold and reach deeper realms.