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.

New meaning to February 14...

With Liam 24 hours old and in the NICU, there was a lot to digest and learn.  When we arrived on Tuesday afternoon, the hospitalist and attending nurse were checking out Liam's central lines.  He needed a platelet transfusion, that is what won his helicopter ride down to Phoenix Children's Hospital.  The best way to get blood in and out of his system was to put central lines through his umbilical cord.  So the first image we have of Liam that day was this little belly with white and black paste over the area of a belly button.  He had monitor leads for his respiration, heart beat, temperature, the whole shebang!  Sean and I learned quickly how to hold Liam through the lines but I don't think either of us got used to the constant bing of some monitor coming loose or us moving too quickly.

Something alerted the doctors that there might be something going on with his heart so with in hours of us arriving, a tech was checking his heart.  Thinking back there must have been an O2 read that was low, I did hear only one doctor thought they heard a murmur.  Of course the tech couldn't share what she was learning about our son, but the wait to meet a doctor felt like a life time.  The next morning when the medical team was doing their rounds the lead doctor let us know that a cardiologist would be meeting with us once they were done.
Being in the hospital was one thing, being in a NICU was another, I couldn't seem to catch up to all the information coming at us nor could I gauge how 'bad' things were.  The nurses were all so thoughtful and pleasant but they made sure to stay away from sharing too much about Liam other than his immediate care.  I have to admit, there were only a couple of people in my past who had Down Syndrome, one was a young man in Williams who attended school and another was a young man I taught how to ski at the Special Olympics.  I never knew that 50% of kids diagnosed with Down Syndrome have a heart condition.  Almost 75% have a thyroid issue, some have eye concerns, some have ear concerns, there are so many ways the extra chromosome can play out.


Liam's heart had what the doctors call an AV Canal.  His left and right atriums were open to each other, there was a flap of skin that helped keep the left and right ventricles separate when his heart beat but there was some oxygenated and deoxygenated blood mixing.  He also only had one valve that separated the atriums and the ventricles instead of two valves.  The heart surgery he had in April 'fixed' these anomalies (I put 'fix' in parenthesis because to me Liam's heart didn't need fixed,  it just needed support).  He now has a 4 chamber heart with 2 valves and what we call an upside down heart beat (due to the way his system compensated before surgery).  His cardiologist is pleased and excited with Liam's heart and his healing.  February 14th is congenital heart defect awareness day so today we celebrate more than just love, we celebrate Liam's heart, we celebrate the effort and persistence that Liam had to pump blood, grow, and live for 7 months with a heart that needed just a little bit of support.  The condition Liam has is one of the most common cases that show up for kids with Down Syndrome and seems to be an easier 'fix'.   Today I celebrate the love I share with Sean, and we celebrate the heart and soul our son has to live!

A rough day...

This weekend has been a little rough for Liam and me.  Sean had the opportunity to attend a workshop to further his training so he has been gone since Thursday.  I have always been so grateful for the amazing father he is to Liam and when he is gone our little family feels his absence!  Liam woke up yesterday at 5am and was ready to play, that isn't so bad, but the 10:30pm feed the night before left me a little groggy.  This morning he woke up later which was nice but not having Sean has left us both a little edgy.
We started working with another feeding therapist, this therapist won't take no for an answer.  Well, Liam has changed his eating habits, now he almost seems to be acting out when he is in the highchair.  Before he would take some food in, sometimes spit some out, sometimes swallow, sometimes refuse, but for the most part he seemed to enjoy being in his chair.  This weekend has been a different story, he cried when I put him in his chair, he is spitting more out than swallowing, he is refusing more and I am tired so we are just not having a good mix.

I am so grateful a friend let me know that as a parent I would be critiqued and to make sure not to take the criticism personal, the lesson of the week!  Liam's eating has become a tender spot.  Are we doing enough, are we doing everything right, what are we missing, how can we support him more?  Again, thank goodness for friends who remind us, me, that what we are doing is perfect, he is his own person and will eat when he is ready, we are supporting him in more ways than we even know!
As I wrote in a recent post, our lives have become normalized and so I forget that some of what we are going through is not typical.  We have a child who has a whole other band he is dancing to.  He is developing in a way that has delays in areas and acceleration in others.  He is cruising the furniture, bear crawling, starting to communicate with sign language, knows what we ask of him, interacts with most every person he makes eye contact with.  But he doesn't eat a meal like another 17 month old, he is still crawling when his younger peers are walking, he wears size 12 month instead of 18 month.  Of course all of these are comparisons and I hold in my heart that each of us have a unique way of showing up in the world so what others do is obsolete.  As a parent, sometimes I doubt, and today I am grateful for the permission to just let that come and go.  I imagine most parents have a moment here and there (maybe when they are exhausted) when doubt creeps in and a heaviness tries to settle.

I am also so grateful that here is this little being who came into the world under high stress, 'low-tone', poked, prodded, helicoptered, hooked to machines, burned 3/4 of his intake calories just to stay alive, had a heart surgery, and has people manipulate his mouth, his limbs, and push his comfort zone just to smile at the people who make contact.  He spreads joy wherever he is, I am not aloud to arrive places when he isn't with me, his love is so pure, and he has an eagerness to explore his Grandma Chris would just adore!  I have met parent's who have children who will never speak, walk, or engage  and find so much to be grateful for in their children.  I guess that is the gift of parenthood, meeting our children where they are, making a safe environment for them to thrive, and push them just enough to expand their comfort zones.  The uncomfortable part for me is how my comfort zone continues to be expanded reaching further and further into the unknown.  Some days, like this weekend, I wish I could just rest for a moment and regroup.  Thank goodness I can tap into the eternal strength, rest gently, and receive support from meditation, friends, family, and Mama Nature.  Well, and sleep, that is what I will seek the most tonight.

Family!

There is no way I could forget family!!  Part of having this extraordinary life is that we are blessed from every direction friends AND family!  I feel lucky that I have family members I can call friends, I know that some people aren't able to do that.  Liam has been blessed with 3 cousins, 3 uncles, 2 aunts,  8 great-aunts, 7 great-uncles, 4 grandparents, 3 great-grandparents, plus all the cousins somehow 'removed'.  That is a lot of love for our little guy!

When we were gearing up for Liam's heart surgery, we knew that we might be in over our heads financially, even with insurance.  We reached out to our family and the circle of family grew exponentially, there were family members contacting us who we never met before or if we had, we were too little to remember.  There has been a sense of deepening with our family circle and Liam's surgery was taken care of.
We have been able to rest in family member's homes while they loved on Liam, family has set us up for lengthy visits, fed us, sent Liam gifts and cards, and most of all they have been the rock we can rest on when we are weary.  I imagine some of our family member's not realizing that just by sending texts, notes, or calling have eased our hearts.

Of course the absence of my mom is still so sharply felt I have a hard time thinking of family and not thinking about her.  I think that is why I was didn't share first about family, I needed a warm up.  I needed a moment to recognize all the wonderful blessings we are grateful for.  Now I can share that same gratitude about family.  There are so many people who are still breathing, able to hug, able to call, and I thank each of you for who you are!!!
Today Liam and I got to spend some time with my Dad.  What a wonderful way to celebrate life, we shared a meal, walked, shared stories, and introduced Liam to the world.  We got to listen to music, check out kaleidoscopes, meet new people, and spend time with a very special friend.

I imagine these memories will fade like the sunset, I also believe that these memories are in our cells, and become part of our souls.  Maybe that is another reason I needed to write about friends first, family is in every fiber of my being and so I can't imagine a life without the family we have.  Well, now you know, as the reader, part of my soul make up, family and friends are musts!   

Friends...

There has been a great need for friends the last few weeks.  Something I regret to share... I take for granted sometimes.  I forget that there are people out there who have known me from toddlerhood, teens, twenties, and just in the last few years who share their love.  

Friends are the much needed extra arms to love on Liam.  The minute we arrive, Liam is cuddled into these arms and adored while I take a moment to rest my arms and savor his smile.  We were adorned before Liam was even born with baby showers and gifts that today we are still using.  They showed up at the hospital moments after we became a family and have stayed by our sides, celebrating Liam's achievements, encouraging him to eat, sitting with us while he has had his procedures, and encouraging us as we learn new ways to support Liam or when we need a boost.  Friends got together when Liam was in the NICU and gifted us with financial help.  We didn't know at that time what our medical expenses would be.  They thought about that for us and supported us through that process.  

I had a phone conversation with one friend just last week and in that period of time, a tightness in my heart seemed to ease and the turmoil I was putting myself through calmed.  This friend witnessed, assured, and gave a gentle suggestion, what a gift!  Even today I was able to hike with another friend, we witnessed deer grazing near the trail, we shared vulnerable experiences, we celebrated each others' successes, and laughed at the wonderful silly things we were thinking.  There is something about the sharing of experiences, time, space, and presence that can stop any destructive thought patterns.

Friends have helped to normalize our life.  They have helped by putting teas, herbs, foods, and blankets together for us.  They have taken Liam for a few hours so Sean and I can have a date, they have checked Liam's different wounds when I questioned how his healing was coming along, they encouraged my healing skills to support Liam, they helped research natural healing remedies so Liam could stay out of Doctor offices when the flu was running rampant.  I can't imagine Sean and I raising this amazing being without all the wonderful people who have stepped in to be part of this journey.    As a friend shared today, our life might be normalized but there is nothing normal about our situation.  She is right, we are extraordinarily blessed by friends and family.