I feel like we are in a bit of an interesting season...
There is a part of this season that feels like death...
An author that had really been influential in my life the past year passed away very unexpectedly on Saturday at the age of 37, leaving a husband and two little kids... my heart breaks for them all. Another reminder that the flu can make your health spiral fast! Even as a "healthy" person.
A sibling of a kiddo we know from rmh passed away in April while Lydia was in the hospital. My heart shattered for this family... this little girl had turned one just a few days before.
This morning I went to kiss Brent goodbye before he went to work and we heard a loud thud... a bird hit the window and just by looking at it, its leg and wing were very broken and it died in our yard after hearing it struggle for a little bit with nothing we could do to help it.
We found out this week that the Pt/speech place we moved to over a year ago has closed forever and if we want to keep our therapists we are now going to need to drive all the way up by the hospital and I am sure that the leadership of the non for profit that runs our therapy place could care less about how hard this all is for families. We need to figure out what we are going to do... none of the options are great and will mean changes for our family.
There have been a lot of hard aspects of the season we are in. There has also just been a lot of circumstantial hard things. Both kids were hospitalized in April... Lydia was in for a week and then Jillian went in three days later. Plus tons of appointments, labs, tests, meetings, therapies... it was a llllooooonnnnngggg month... I never saw our house in the month of April.
We are still really healing from February. They say time heals a lot of things but I want to add to that... time heals a lot of things if you take the time to take the steps that you need to in order to work through things.
I am a conflict avoider... a I am great at running away from pain. Sure I am good at complaining but I do not like to actually sit in the pain and process through it. But this situation isn't something that running from is a choice so I am sitting in the pain and working through things... what is hard is that there are 4 of us all trying to do this at the same time in our own ways.
But I see little ways where we have sat in the pain, processed and grew... like I was really struggling with the clothes that my kids wore to nih... they mainly wore new clothes that they had received for Christmas to nih because my experience has been that doctors take you more seriously if you look put together (I also know this isn't just me, there are other parents who I have talked to about this same thing... I typically wear business casual on appointment days although that backfired at nih because then me not looking like a hot mess was taken by someone as me not caring enough). But once we got home from nih and we washed the kids clothes they went into a pile on the floor to be folded... and I just kept steping over them... at first I didn't know why but once I forced myself to actually look at this pile the emotions hit. For some reason my kids clothes is where I hold a lot of the emotions of their medical stuff. That started when Lydia was hospitalized at 3 weeks old and it bothered me that she was not in her clothes. Thankfully we had a hospitalist that was a mom that stay and she was ok if I put Lydia in sleepers as long as they buttoned so they could still do that they needed to... she was dressed in adorable sleepers that stay. A couple years ago a friend made Jilli a hospital gown and another friend gave Jilli one for her birthday so she had two of her own special gowns for a while. She has now grown out of them (which she was sat about during her last hospital stay) but that was another way we worked through this hard. I intentionally packed several of the outfits that the kids wore at nih when we headed to rmh this time (we went there for a few scheduled appointments and ended up staying a lot longer then planned because of hospital stays) because we needed new memories in these clothes. I took the hard step even with something that seemed so small and trivial (like it drove me nuts that this was hard for me).
We had several conversations with doctors where we had to go over everything from nih and we still have a big meeting coming up later this month to meet with our special needs team about nih and everything since. I am nervous about that meeting... but I see how we have taken hard steps so far and how our team at home has very lovingly walked through this with us. they have had conversations about what they see with us and reminded us that we are not crazy and that they have witnessed these things themselves and that they believe us and our care plans. I even saw this in our dentist who heard when Jilli was there when Lydia was in the hospital about our trip and then when I took Lydia she was so kind to Lydia. Lydia has never struggled with the dentist but right now any medical person is scary for my kids and the dentist just rolled with it and did her best to show Lydia that she was a safe person.
We have had a few tests from nih that we have either repeated or they were tests that were their sugestion that we did in the past month. We did the bubble echo and it looked fine. We did some of the labs and somehow magically my kids vitamin d levels fixed themselves with no intervention... and Jilli's sodium is still just fine. We also did a 6 minute walk test... or well we did the best we could... Jilli was very very nervous about having to do this test again... but the staff at our hospital was amazing about it and helped us all through... Jillian "failed" the test 3 minutes in when her pulse ox dipped too low and she ended up laying down on the floor to catch her breath and could not go any farther. No one on her team here is surprised by this at all... we know this is what happens.
We have had a couple conversations with our team here were they have said that looking back that they could have done some additional testing right before we went of tests that they had done before but our hospital doesn't just keep testing things over and over if the person is still experiencing the same symptoms. That is a waste of money and time and hospital resources and my children's life experiences... so that is not how our hospital does medicine... but that seems like its how nih wants medicine practiced which might have lead to some of our friction. Maybe this is a learning experience that our hospital can use the next time they send families there.
There are parts of me that feels like we should just be able to move past all of this... but instead of running through this... we are taking the time to try to process and really heal our hearts so that we can move forward in a healthy way.
Since February though I have really struggled with where we belong in the world. I wrestle with self identity often... it can be so easy to find my identity in things other then God... the issue is that I can be unhealthy at both ends of the spectrum... I can find my identity in everything but God or I can feel like I belong no where and that I do not fit it. Getting this balance right is something I have been messing up for almost 30 years and I am starting to feel like I might never get it right this side of heaven but hopefully someday the swings of it are not so intense. Since Febuary I have been in the swing of feeling like we don't belong... like we don't belong in the medical community... nih at one point said that maybe one day everything could just be different (by doing nothing) because some things just resolve on their own with no known reason... and while sure, that could be true in our case, we need to live by what is going on today... if we go with that oneday everything will just change by doing nothing then we don't go to appointments, go to the hospital when needed, do weekly therapy and that would be the worst thing we could do for our kids. It would put them at such a disadvantage for growth... and honestly it would be neglectful. I don't think they were saying to do those things (although their communication on a lot of things was strange) but I don't think they also understood with that comment that if felt like we should not be involved in the medical world at all... like we had no place there because in this maybe made up world that has no current science back it up, we might not eventually need these services. These are one of the things that make the undiagnosed world so hard. Jillian's first few years were like this and looking back I can see places were we were rightfully cautious because we made choices thinking some things were temporary and self resolving that in the long term were not and the reality is that it delayed treatment in some cases and it ways that could have helped my kids. We walk a very fine line of trying to balance what interventions we need to do and when we need to do them... we do not want to over intervene and we don't want to under... this is a really hard balance and sometimes we mess it up in either direction... sometimes we need to course correct but we work very hard with out teams too make those choices. I research things a lot. Brent and I have a lot of conversations about choices. We try to be very intentional people.
But this has caused me to really questioning my belonging places. I have felt for a few months like I don't belong anywhere. It has been hard because I knew in my heart it was not true... but my head has been really good at trying to buy that lie (its not a new lie I have wrestled with... there is some deep stuff that goes along with it). On top of it last month I had an experience where someone I don't know called my character into question and while that situation worked itself out without me doing anything because I was already known by the people involved for my integrity, it still fed into the lie I had been wrestling with. I also had a situation where some people were mad that I was not joining in drama and I was just being kind to everyone but the people causing the drama wanted me on their "side" and I had no interest in sides, I just wanted to be kind to everyone and that upset some people, and thats aright, it just didn't feel great.
The past couple of days have been really healing for me though. Some key people reminded me that I belonged places. We spent the last two days with friends at rmh (Lydia had an appointment that we missed in January when we had that stomach virus and she missed it again in April when she was in the hospital but they were able to fit us in yesterday) and just the sense of belonging that comes was amazing. And it wasn't just for me... it was for my kids too! The last two days just feel like they were a gift! A gift I wanted but didn't know how much healing it would do. Thank you to my friends! And thank you to everything just falling together for that to happen... it wasn't something planned... it just happened and was authentic. RMH is full of love and has provided us a place for my kids to heal from different things over the years... but today I am thankful for the place that it creates that I can connect with people til I feel like I might loose my voice... but in a good way... from laughing and connecting and being in community.
We have also had some really big other life news....
Brent accepted a new job on Wednesday! He was not looking for something new, this opportunity came to him and we are hoping that it is the right move and trusting the foot steps that seem to be presenting itself... it feels overwhelming but yet not... it feels like the right next step... and as the person who normally stresses over things like this I am unusually calm about it! He starts in a little over a week.
For the next really amazing thing happening in our lives right now I am going to copy my Facebook posts from Saturday and Monday to explain:
Saturday's post:
"Over the past few years I have started to ask more questions about the
world then I once use to... for some reason at some point I lost my
sense of wonder and felt like it was no longer a safe thing to have...
Yesterday morning I woke up with the question of "why me"... not a
question I normally ponder and probably not in the way that you would
think... but instead I was pondering it about blessings... why have I
been so blessed in my life? I have a situation that we have been praying
about for a while and I know some others have too and it looks like God
is answering this prayer in a way I never imagined and I am still
feeling overwhelmed at the possibility of this... not because I didn't
think God can do things like this, but why me? Brent and I have a habit
of anytime someone does something kind in our direction of saying "I am
sure someone else needs your kindness more." Maybe its our upbringing or
culture... honestly I haven't unpacked why we both feel that way and
why we both struggle with generosity in our direction. We both love to
do things for other people... the only blog post I wrote in April during
a really hard season was about rallying our community behind places
that love families like ours and it brought me great joy to write a post
like that. But I suck at being on the other end... one of my friends
very lovingly reminded me this week that we have been praying about this
situation and maybe the Lord is trying to provide for us... maybe I
need to stop my theological whirlwind... but my head keeps going back to
others...
Because I see all the ways that God provides in my
life... and all the ways I don't deserve it. All the ways that I mess
up. And I look at hurting, hungry, desperate people around me and wonder
why not them... why doesn't everyone have food and shelter... why are
kids dying from preventable things... why was I randomly born into a
country that can provide the medical care for my kids...
See the
last many years has been a growing journey for me... because I use to be
really good at thinking I deserved things because of how good I was...
how I did all the right social things and therefor things should just be
easy for me because society said that if you make all the right choices
then you don't need things like Medicaid or charities... it was easy to
buy into the political turned church philosophy that if you make the
right choices in life that capitalism will work for you and you will
rise... but my story doesn't look that way... we could have a tax rate
of 0 and still never be able to pay all of the medical bills without
Medicaid. There are no works I can do to effect this a whole lot.
So over the last few years my views started to shift as I watched some
of those social turned "biblical" things not work out in the long run of
my life and I started to get angry with the American Church and
particularly the prosperity gospel. And once again God brought me the
people I needed... in the form of a few podcasts, books and Twitter of
all places. People who like me didn't see the story play out in real
life but who loved God enough to go digging.
I sat on my couch
yesterday afternoon crying the loss of someone I never met in person... a
momma with kids younger then mine... but someone who also asked a lot
of questions... someone who could be a bit of a bullhead but yet kind
and loving... and she was gone too soon... And I watched the Church on
Twitter morn in a way I have not seen the church morn before... it
wasn't flowery pleasantries... there was some cursing... but there was
also hurting broken people loving each other.
There are parts of
her story that I really resonate with because if I had been more public
and on stages the last few years, I likely would have taken a lot of the
same pushback she has received from some of the gatekeepers of the
American church... she personally took the heat for some of the things
many people of my generation seem to be wrestling with... but I can also
see at different parts of my life how I likely would have been on the
"side" of the gatekeepers in this situation... the people who are using
her death to try to silence people... the gatekeepers on twitter trying
to use her tragic death as a reason to tell people to fall in line...
the people who see questions as a threat.
Yesterday felt like an
emotional whirlwind... but really that is how life has felt since the
new year... and today I still sit in a lot of questions but I am
thankful for the community that reminded me that it is ok to sit in
these questions and that we don't all have to perfectly line up on every
view but that love is so important."
Monday's Post:
"
Last
Monday night I got a text from a friend of mine saying that several
weeks prior she had nominated us to be the family of the year for an
organization I had not heard of before... so I went searching to find
out more about this organization and soon found out that the
organization wanted to talk to us...
but let me back this story up many years...
When I was pregnant with Jillian we bought a house... kinda in the
middle of no where on some land... a large split level house that had
been forclosed so we got a steal of a deal... but with the huge price
cut came a lot of work because the house had been trashed... every wall
needed to be painted because a kid took markers to everything, the
flooring needed to be replaced in most of the house, 2 of the 3
bathrooms needed a lot of work. We bought the house in August and
Jillian wasn't due until December so we figured we had time to work on
things... but as house projects go, most things are not a simple as your
first think. And then Jillian tried to come early (like several months
early) so projects took a bit of a back seat.
We figured that
once we had Jillian we could start back up on more projects... and we
did, however at a much much slower rate then planned because Jillian
spent most of her first year in and our of the hospital leaving very
little time or money for the house...
Some of the selling
features of the house no longer are to us because of life twists and
turns, we bought in this location because it was half way between
Brent
and my jobs at the time however that is no longer the case, the land is
too hard for us to keep up with, and the house is full of stairs being a
split level making it really hard for the kids on bad muscle days.
There are just day to day things like there not being a bathroom that
their oxygen concentrators reach. As much as this house was a great
first home for us that we have put a lot of love into... it is not
practical long term.
So we need to finish a few big projects
(finishing the master bath that has been in progress for almost a year
and decluttering and yard work) and move to a house that better meets
the needs of our kids... that is not such a long drive to a hospital or
PT, that is all one level, and that has less land so that is not as much
work.
This is where you can see God's fingerprints... my mom's
small group has been praying for our house situation for a while...
while Brent and I still just felt overwhemed by the thought of trying to
move... several weeks ago on the way home from church I was praying and
asked God if He could show us if this was the year that we needed to
take active steps in moving... that was right around the same time that
this friend (mind you I had told no one about that prayer) nominated us
to be the family of the year for Kade's Klassic... An answer we never
ever expected...
Last week we found out that we were the family
that they were wanting to select to be the family of the year and they
asked us to accept the nomination... we were overwhelmed to say the
least. Kade's Klassic puts on a 5k and golf outing in June and as being
the family of the year we will be gifted money to help us get this house
to a place that we get sell it and then we will be on the hunt for a
new house.
I want to give a huge thank you to the people who
came along side us these past few days while we figured out if we were
going to accept the nomination. We needed wise council in our lives in
this situation and we thank those of you who provided that for us (if
you read my long post yesterday you can piece together some of my
philosophical debates of the week)
If you are interested in
golfing or running in Kade's Klassic I please send me a message with
your address so I can give it to them."
So there are a lof of big life things going on at our house right now... it all feels like a bit of a whirlwind with a lot of ups and downs right now... that is part of why I have been a little quiet on here the past few weeks because it has felt like a ton is going on and we are in the middle of a lot of things... there has also been a bit of us just needing to walk through the medical of last months and we just needed some space to do that... I have a lot of feelings about last month and some of them I am just going to keep to me right now because I am still sitting in them... and sometimes I write to process and sometimes I need to hold things a bit before I let them out... once again... another balance that I don't always get right. Sometimes I feel like I need to post some of these big things online because we do tell our story rather publicly (and there is a mix of reasons behind that) but I was reminded recently that sometimes that means people think they know all of the things that are going on in our lives when that is never the case because we always selectively choose what to share and what not to for a mix of reasons so we try our best to make the right choices with that. These were just the things that felt like today was the right time to let them out.
Also, we are doing the Briggs and Al's run/walk for children's again this year. There is currently a discount for signing up if you want to join us! Our goal is 30 people on our team and to raise $3,000 for our hospital!
Here are a ton of pictures!!!!
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| Child life brought her an American Girl doll after a hard procedure |
