The pump came out again today. After several months-we think possibly a couple years -the pump was back in action today.

 

G hasn’t been feeling great the last few days. Between summer allergies and lots of activity at camp, he has been worn out and not interested in eating. This morning he exhausted, he didn’t even want to lift his head to sip water.  

I immediately flashed back to the times that a morning like this landed would have landed us in the hospital for a couple nights. Not today….we are now road tested parents. We knew the drill….gotta get him hydrated then go from there. 

After a couple failed attempts to get him to sip some water,Chuck and I went to work finding all the pieces and getting the pump reassembled. It was bizarre how quickly we jumped right back into our routine of prepping things.

It’s several hours later now-G woke up hydrated , joking and scarfing down toast.

As I find myself reflecting on the events of the day, the word PERSPECTIVE keeps coming to mind. Today, I was fairly calm, clear-headed and able to take care of his needs.

There were many times that was not the case-including the hospital stay that led to us getting the G-tube to help with feeding and hydration. That day I was freaked out, scared and had no intention what-so-ever of letting anyone perform a surgery on my child to make it easier to hook up a machine and pump food into his body!

At the time getting the G-tube seemed a giant step backward. We had finally stopped the seizures. Now all of these other health issues were popping up-the cascade of lasting issues and side effects felt relentless. I am thankful for all the amazing medical professionals who walked us through the why’s and how’s and that we ultimately took a leap of faith. Having the G-tube to give medication, nutrition and hydration has been AMAZING in helping keep our boy strong and healthy.

I am so glad my perspective changed. The situation was the same……sick kid unable to drink needs hydrated. I am the one who has changed. Today I was able to see the blessing in this device and our experiences because we were able to handle it with ease. (Not normal….don’t think I’ll ever feel comfortable calling our lives “normal” again….but we’ve got our routines that we can slide in and out of when needed).

Diving back into blogging. It’s been a long time. I’ve missed it so much, but somehow felt paralyzed on the logistics of how to move forward.

When I began this blog it was to record our of story battling Doose Syndrome. Back in 2012 the story felt like it BELONGED to ME! The parent of the patient. It was what my husband and I were doing to survive these horrendous new waters we had been dropped into. Being land animals we had little to experience how to navigate the deep waters were suddenly forces to survive in. Back then I blogged for 3 primary reasons 1. Record what was happening. 2. Have an easy to way to update multiple people at one time. 3. Hope to be light to others who find themselves thrust in life’s chaos-especially other epilepsy parents.

7 Years later I feel comfortable calling myself a seasoned swimmer. Still in the water, missing being a land animal, but nonetheless able to survive and even thrive in this habitat.

Part of this journey has included realizing that while it is MY story, the details of the illness and life belong primarily to our son. Becoming aware that he may not want every detail of life available for consumption in the same way I have chosen for myself.

So I’m back blogging-not sure what exactly what this will look like moving forward-but knowing I want to be a light, to call back to people who find themselves navigating choppy waters.

YOU ARE NOT ALONE! EVEN IF YOU CAN’T SEE IT RIGHT NOW THERE IS ANOTHER SIDE OF THIS BATTLE!

The following excerpt from: L. B. E. Cowman & Jim Reimann. “Streams in the Desert” has been the prayer of my heart for years. I am so thankful for all those before me who called back and I am seeking to do the same.

“If you have gone a little way ahead of me, call back—
It will cheer my heart and help my feet along the stony track;
And if, perhaps, Faith’s light is dim, because the oil is low,
Your call will guide my lagging course as wearily I go.
Call back, and tell me that He went with you into the storm;
Call back, and say He kept you when the forest’s roots were torn;
That, when the heavens thunder and the earthquake shook the hill,
He bore you up and held you where the lofty air was still.
O friend, call back, and tell me for I cannot see your face;
They say it glows with triumph, and your feet sprint in the race;
But there are mists between us and my spirit eyes are dim,
And I cannot see the glory, though I long for word of Him.
But if you’ll say He heard you when your prayer was but a cry,
And if you’ll say He saw you through the night’s sin-darkened sky—
If you have gone a little way ahead, O friend, call back—
It will cheer my heart and help my feet along the way”

Excerpt From: L. B. E. Cowman & Jim Reimann. “Streams in the Desert.”

I often find myself reflecting on life in relation to time periods. School has ended for the year and SUMMER is here! Last summer G went to ADHD camp for the first time and I spent many weeks organizing and purging the house.

Last night, I was preparing for camp to start this year (yet again organizing and purging) I was able to take down the G-tube pump stand and store the stand, pump and bags. We don’t have use them regularly! Gabriel is eating enough on his own now without regularly needing supplementation! He knows when he is hungry and asks for food! His diet is still pretty limited, however he understands that his body needs healthy food and will often asks if what is he is eating is healthy!

He knows his body needs healthy food because of units on the human body and nutrition taught at school. This means he is able to be gain, retain and use information being taught at school! Reports cards came home a few days ago, I literally forgot to open it for days….the thank you notes from his teachers, I did not forget to open. One of his teachers wrote how he didn’t seem to like school at the beginning of the year but now he comes in happy and excited. We have seen the same thing! HUGE PROPS to his AMAZING team! The biggest difference is that he enjoys time with classmates! He comes home talking about his friends and things he did with them!

As I reflect on the last year, I am celebrating all of our successes, 3 of them rise to the top!
1. Successful medicine wean! G has only been on off felbamate (his seizure stopping magic bullet) since November but it seems like much longer. NO setbacks or even hiccups yet!

2. Building relationships and friendships! Gabriel has always enjoyed being around other kids but this year he plays with other kids as much as he plays on his own! He can make eye contact during conversation and tries to have conversations about common interests!

3. Eating enough on his own! This one is HUGE!!!! The G-tube has been such a HUGE blessing!(I think he has had 3 years now). It not only made giving him medicine effective and protected him from non stop pneumonia, it gave us a way to make sure he had enough calories each day. Now we just use it for the medicine because he eats! I need to remember this when he gets hungry at 8 p.m. every night (when I am ready to be done being mommy of course).

These success allow for purging as well. Both physical-like purging of medical supplies but emotional as well getting to purge fears.
1. Will the seizures come back when we wean medicine? NOPE! They stayed away…PURGE THAT FEAR!

2. Will he ever be able to connect with others? YES! He is making friendships on his own! —PURGE THAT FEAR!

3. Will eat ever learn hunger pains and eat on his own? YEP!! Chicken nuggets at 8p.m. means hunger pains were felt! —PURGE THAT FEAR!

As I am wrapping up this post I keep thinking of all the bible verses about not fearing. God knows how powerful fear is and uses his WORD to remind us that he knows that fear does not have the ultimate power! Thank you LORD for consistently, continually casting out my fears and for providing these seemingly miraculous moments when I get to completely PURGE and eliminate certain fears from my life!

8:12 P.M. Thursday, November 17, 2016…Date STAMP…the last dose of Felbamate given to Gabriel. A few weeks earlier, 9 milliliters had gone into his body, just like everyday for almost 3 years. On Thursday night 1 mL went in. The last dose of the little pink liquid that saved our boys life. *See Footnote

I am typing this Sunday morning and we have not seen any seizure activity YET. Yet…Rrrrgh…that one little word can hold so much…so much hope, so much fear, so much light or darkness.

During this medicine wean I have kept the image of a mountaineer repelling down a cliff. Picturing ourselves beginning the descent, 1/3 of the way down, 1/2 way down, 2/3 of the way down 3/4 of the way down. Friday evening at 8:00 PM (medicine time)it felt like we had landed. Not only landed, but had firm footing, had unhooked our repelling gear, and were beginning to pack it up for the next leg of our adventure with Doose. The phrase “The Eagle Has Landed”, famously uttered by Neil Armstrong when humans first landed on the moon decades ago, kept running through my mind.

The date of the first moon landing is burned into my memory-July 20th. July 20th was my Dad’s birthday. It seemed like every year on his birthday my dad would talk about the moon landing, Neil Armstrong and Buzz Aldrin. It seems fitting that the iconic phrase was ringing through my head as our family completed a BIG step on our own dream mission. I find myself unendingly thankful for the countless people who have supported us, cared for us, prayed with us, fed us, laughed and cried with us over the years! I find myself typing this wishing for the 10 millionth time, as I have so many other events this last year, that Dad was here to see this. He would be so happy for G (and us). One of the last conversations I had with my Dad was about how GOOD G was doing and how glad he was for that. I don’t know how eternity works but I hope somehow Dad is getting to see or be a part of this…I wonder of the ARMSTRONG phase in my mind is God’s way of connecting us.

Anyway for now…our family is on solid ground! There are more mountains to climb. In general Gabriel is about 2 years behind developmentally. In some areas more, in some less. Our job for now is to continue to support, empower and advocate for him as he navigates life.  As we step into the next phase I find comfort, hope and strength in Psalm 121 ,”I lift my eyes until the hills, where does my help come from?  My Help comes from the LORD, maker of heaven and earth”

 

FOOTNOTE *I always waver on whether or not it really SAVED his life….it sounds so dramatic to phrase it that way….but it is true. Heartbreakingly true…there are children with Gabriel’s syndrome (and many others “related” to it), that the lack of seizure freedom and/or SUDEP (sudden unexpected death in epilepsy) ends their lives. There is also the cruel, yet ever present reality that the seizures can return any day. One of the families that has been a guiding light for us in our Doose journey is experiencing a recurrence of seizure after 4 years of seizure freedom. The seizures were most likely brought on by onset of puberty. Please PRAY for ZAKI and his family–they are WARRIORS in this battle!

We are 7 weeks into a 9 week medicine wean. So far….so GOOD! No seizures! Maybe I should qualify that…no seizures observed! It is possible things are happening in his brain that we aren’t seeing, however, everything on the outside is looking really good!

We have had minor emotional hiccups the last few weeks. Gabriel’s sensory issues have been more pronounced. He especially loves taking really long showers, he has more and more issues with food texture and he prefers to run around without clothes on. His emotional expression have been heightened.  Especially in weeks 2-4..Gabriel seems to get really upset about seemingly small things. Such as being truly upset about a fork being placed 2 inches further away than he thought it should be. It reminds me of the funny posts on facebook, where parents share things that make their 3 year olds have total meltdowns. Except, we aren’t 3 we are 7. (and not normal “7 year olds are emotional stuff”..literally like a 3 year old…throwing himself on the ground and wailing for extended periods of time). We have worked with his behavioral doctor and increased the amount of another drug he takes for mood regulation. That has helped tremendously in evening out his moods. This drug was originally prescribed to stop seizures but didn’t work. When we tried to wean it a couple years ago, it became clear that his brain has become reliant on it for mood regulation. I am sure we will work on different solutions or weans for this medication in the near future, but for now it is needed and enabling Gabriel to engage in the world!

I am so thankful for my background in child development, specifically early childhood education. It has helped me to remember that Gabriel has been on medication that has been controlling his brain since he was 3 years old. It has caused me to pause and realize…that there is a chance that Gabriel’s brain just needs to grow through some developmental stages because it never has.

During the last 7 weeks, we have seen Gabriel take some huge developmental steps. He is trying to use a fork and knife to cut his own food when eating! His default mode on things that are challenging has been “I’m not good at that” end of story he refuses to try. We are incredibly intentional to focus on effort not perfection, so this phrase was always so hard for me hear. I haven’t heard it much in the last several weeks 🙂 He will say he doesn’t want to do something still or avoid things that are hard but he is more willing to come back around and try! He is enjoying coloring and drawing as well. His teacher told us, that he could earn drawing time for focusing on his work. I couldn’t believe it. Last year he wouldn’t rarely pick up any writing utensil…crayon, marker,etc.

A couple days ago he told me wanted to carve pumpkins and that he needed a sharpie. His idea of carving pumpkins is drawing faces on them with sharpies! So cute…and much easier for his parents 🙂  Watching him draw the faces was delightful. He exhibited spatial and directional skills needed to place the eyes, nose and mouth appropriately, as well as the fine motor skills to create the shapes he desired.

He also seems more aware and engaged in the world around him. We went to the zoo this weekend and for the first time in years, he looked at the animals! He commented on what they were doing and asked questions! He has always enjoyed the zoo but it was more of an amusement park for him…we would go ride the train, the tram, the carousel and then go home.

I am daily reminded to celebrate what he is able to do and how far he has come.  It can be overwhelming to see how far he still has to come and frustrating when getting through “simple” tasks such as getting dressed continues to be a daily struggle.

So we have 2 more weeks until he is completely off Felbamate, then we will continue to watch diligently for any signs for months to come (honestly…I don’t think we will ever stop watching). I imagine there will be more EEG (brain wave tests). I am sure there will be many more doctors visits, many more specialists, more setbacks but most importantly many more successes and strides. For now it seems we have won the battle against the seizures but the fight for Gabriel’s quality of life continues. For years our hope was to stop the seizures, that life would go back to normal. The seizure stopped but “normal” didn’t come. Now we are getting off a brain altering chemical and hoping for more chances at “normal”. We are in a weird, but wonderful situation, one where there is no clear outcome but there is HOPE!

As always, thanks for following us, keeping up with us and especially for your continued prayers!

 

 

I can barely believe that I am typing these words…but I am…DEEP BREATH….We are weaning Gabriel’s Felbamate. Felbamate ,the magic bullet drug, that saved our baby from the year long onslaught of seizures. The drug that we fought for….the drug the doctor finally prescribed (after 9 months of us asking)… just to placate us…saying it had less than a 0.1% chance of working….the drug that STOPPED the seizures! Gabriel started taking the drug one day and seizures did not come back! YEP…that drug….our answered prayer….we are attempting to wean Gabriel off of it.

I have been struggling for months to come up with an analogy to explain what we are doing. I finally came to me the other night. It is like we are beginning the descent down a rock cliff. The dangers of staying on top of the cliff outweigh the risks of repelling down. We have all our gear, we’ve done the training, we have as much understanding of this experience as possible, but it is time to officially begin the descent.

Gabriel’s type of epilepsy, DOOSE, is one in which, certain channels in the brain don’t open and close correctly. This inability to open and close caused various types of seizure of our boy. Since starting Felbamate in April 2013, he has been seizure free. It is possible that the channels in his brain that did not open and close correctly have developed the ability to work correctly over the last few years. The terrible joke in all of this…the only way to find out for sure is to slowly wean the medication off and see if the seizures stay away or not 🙁 UGH! Yep, typing this makes me want to throw up because it is so scary!

We did a 24 hour EEG last October (or maybe November). The point of which was to see if it looked like his brain had healed. If the EEG showed no abnormality- it would be an indicator the brain had healed and we would wean felbamate. We left the hospital after the 24 hour EEG having talked briefly with the neurologist on duty. He said there was not seizure activity, but there was background something or other (I can’t remember the term) that indicated the possible beginning of seizures that were maybe being shut down by medication. We left the hospital knowing we would meet with Gabriel’s neurologist for a follow up appointment in a few months. Our basic thought process was…there is NO WAY ON EARTH WE WILL WEAN THIS MEDICINE!!!!

We finally had the follow up appointment in April. I can’t put into word exactly how or why but something had shifted in both Chuck and I, that made us open to listen to Gabriel’s doctor. At that appointment the doctor basically said that whatever was on the 24 hour eeg were sparks, they could be sparks that would ignite into seizures, or they could be sparks that wouldn’t ignite. Gabriel’s doctor explained that Felbamate is hard on the liver (which we knew) and that it was a lot to put his body through if it wasn’t needed.

Somehow, living through the hell of watching my dad die from pancreatic cancer months earlier, made me listen to the doctor talking about my son’s internal organs in a new way. I was no longer obsessively focused on Gabriel’s brain. I had an understanding and hope of Gabriel maybe being a father and grandpa someday. My fear of doing something to hinder his long term future outweighed my fear of taking a calculated risk to give his body the best chance at long and healthy life.

It is amazing how my internal thought process had shifted so much. We spent so long feeling like we were fighting for his life, then once we had seizure control, fighting for every developmental step, always hoping for the best, but just not knowing. To have Gabriel in a spot, where he is doing so well, that I could picture an independent future that includes meaningful relationships was pivotal.

The actual wean of the medication will take a couple months. We will reduce his daily amount 1 mil a week until he is totally off the drug. If the seizures start up again, we just put the drug back on. We are one week in right now. This week wasn’t scary because the amount he was on this week, was the same amount his on for a couple years with great success. The next weeks will be a bit more scary, but here we go.

Along with watching carefully for seizures, we are expecting and watching for other things…such as mood swings, developmental changes(possible jumps forward as his brain is relieved from the suppression the medication is causing, or possible steps backwards as his brain adjusts to new patterns), etc. that come along with medication changes. Some things we will just have to wait out, others we may be able to tweak other medications.

So many months later…here we are. We are on the precipice…it’s time try the descent down the cliff…hoping and praying for strength, grace and peace on the journey…..the end goal is for G to have firm footing on solid ground…so he can sprint into life free from seizures!

 

Summer has been fully of acronyms at our house. Gabriel has been attending STP (Summer Treatment Program) for ADHD (Attention deficit hyperactivity disorder) through our local children’s hospital. We heard first about the ADHD camp about a year and 1/2 ago. Then last summer, while a friends child was going through the program she allowed me to pick her brain and listen to her experiences. She had nothing but great things to say about the program. Her son was quite a bit older than G…entering 5th grade. So, as I listened I thought we would start saving up and maybe send Gabriel to camp when he was heading into 3rd or 4th grade. My thought was….He is doing alright in school. We’ll wait til he has a tough school year than try the camp.  And with a price tag in the thousands we would need to start saving now to make it a reality in a few years.

Luckily, Chuck had a different opinion, he said the sooner the better. I went back to my friend and asked her thoughts. She agreed….go for it now. I am so glad we did! We starting planning last summer and saving to be able to afford it. Anyone who purchased Norwex from me this last year…Thank you! Not only do you have a fast, effective way to clean..we used the $ I made with my business to give Gabriel this opportunity.

We began the process for enrollment in Feb (I think). We gathered necessary paperwork from doctors, his teachers and set up a meeting with program directors to see if Gabriel would be a good fit. During the meeting the directors laid out the how’s and why’s behavioral therapies are provided. We left very impressed and excited!

The Summer Treatment Program is  an amazing research based treatment program that has been around since the 80’s. It has been in our area for I believe 5 years. Gabriel goes to camp 5 days a week from 8-5 and Chuck and I attend a parents class 1 night a week. It has been wonderful. I’m not sure how to put it into words. Gabriel is having a lot of fun. He is getting academic support during 2 hours a day of classroom time. He is getting sport skill opportunities–soccer, dodgeball, baseball and basketball. He is learning how to regulate his behaviors and stay on task. He is making more eye contact and gaining in conversational skills!  2 weeks into camp we had seen such significant strides that I started planning and budgeting to make camp a possibility next summer as well!

In the midst of planning for summer camp we met with Gabriel’s epilepsy specialist to go over the results of the 24 hour EEG Gabriel did in November. Based on the results the doctor recommended an1 hour EEG (test that reads brain wave patterns) then depending on the results possibly weaning Felbamate. EEEEKKK!!!

Felbmate is the drug that stopped Gabriel’s seizures. We are 3 years seizure free thanks to this drug! Weaning the drug would mean that we slowly give him less and less to see if the seizures come back or not. The 24 hour EEG showed sparks, that may or may not ignite into seizures. The only way to know if they will is pull the medication and see what happens. TERRIFYING!   While it is has been over 1000 days since having to sit with G while a seizure subsided I remember it like it was yesterday.

We are really thinking and praying about trying a wean. We are seriously considering it for a few reasons. 1. The drug is known to be hard on the liver…so why put his liver through something he doesn’t need. 2. The couple times we have been late with midday medication we have noticed he is more interactive and processes things more quickly. (Midday medication is the only one we ever miss, because the time of day is not consistently scheduled like wake up and bedtime). 3. Our doctor told us that Felbamate is a drug that can be added back in during a wean and successfully control seizures again (that is not the case in all seizure meds). Chuck and I will research this one more on our own…because that is what we do! 🙂

We decided not to schedule the EEG until after ADHD camp is over. We had planned and saved for so long we wanted him to get the most out of the opportunity without putting his body through anything extra. Also, with the possibility of breakthrough seizures, having him at school with a nurse or home with us seemed like a much better decision.

I finally scheduled the EEG this week. It will be August 8th. Praying readers…please pray with us for clear results and that God will guide us as we make the next decisions. It is scary and exciting to be 3 years seizure free and know that our next big decision could take our boy forward or backward.

So there is our Alphabet Soup update! 🙂

 

Our family survived another super bowl. Our perception of the super bowl is very different than most. Super bowl Sunday, 5 years ago, is when as Gabriels first neurologist put it “the spaghetti hit the fan”.

It is kind of insane to ponder how extraordinary our last 5 years have been. In the blog today I want to give an update on Gabriel and share my own ponderings and thoughts on living a “new normal”.

First, Gabriel is doing very, very, very well. He is a kind and caring boy. He is interested and able to interact with other children, he is learning new things in school. We have every reason to hope that he will be able to be an fully or mostly independent adult someday. That hope comes with A LOT of work, effort, and intentionality on our part.

I wrestle with what to share on this blog, as far as, his abilities. I want to share honestly and openly as a hope for other parents, but I don’t want to post something he might read later in life that would cause him pain. As far as school goes, he is on grade level for somethings and drastically behind on others. He is moving forward and developing in all areas, that is all that really matters to us. A small challenge in the last couple months is that he has noticed he is not strong in certain areas and is expressing things like “i’m not good at that” in a way that lets me know he is worried about it and comparing himself to others. This cracks my heart open because I don’t know how to explain to him that no matter what messages the world sends him, it does not matter 1 freaking bit to me if he is an academic success or not. Crazy words to read from a person who is passionate about education, I know, but I want him to learn news things, develop new skills and grow. I do not care if he ever gets an A on a spelling test (thank God we don’t have spelling words yet….that is going to be an extreme challenge. Keeping 3 letters in his head for spelling is an extreme challenge for him right now).

The phrase “A new normal” as been bouncing around in my head for years now. It has become extremely relavent after the recent and sudden loss of my dad. In dealing with the grief and sadness after loosing my dad this phrase has begun to ring true. It never has with what we are living through with Gabriel. I think it is because there is nothing normal about living with a child with a unpredictable, possibly life threatening disease is normal. Grief over death, however, is “normal” because it is a common human experience. We will all experience death and the pain associated with having to move forward without our loved ones with us on this earthly plain. I am in no way minimizing grief or the pain of loss after death…. For me it is has been the worst and biggest kick in the ass over the last 5 years. However, in grief I am coming to understand the phrase a “new normal”. There are things whether I like it or not that are permanently changed.

My experience, is that when you have a child with special needs the term “new normal” doesn’t fit. There are new routines but these routines feel anything but normal. The majority of the general population, while dealing with difficulties and struggles, are not having to revolve every second of their day around things like:whether an insulin pump is working correctly, or if the newest treatment will really help your child, or how to survive Target when a specific color or scent will truly send your child into a place from which getting them back is literally almost impossible.

Over the past 5 years we have learned, integrated, and researched more therapies, medications, treatments than I care to count. There is no normal in that.

Even when things are good…every single day has scary elements tied to Gabriel’s battle. There is no normal to that.

We have been connecting with amazing people we would have never encountered expect that we are in the same shitty “I have a sick kid”club. One of those many clubs, that no one wants to join and THANK GOD we have each other. But there is no normal in that.

We are planning our entire summer around hoping to get Gabriel into an expensive (all out of pocket), but wonderful camp for children with ADD through our local children’s hospital. It means 8 weeks of intense therapy and school for Gabriel 9 hours a day. There is a requirement to make a commitment to be there everyday, as well as, specific classes for Chuck and I. We are hopeful this will be a great experience for all of us but it is not normal. I would much rather be researching camps, setting up playdates and looking for a great swim teacher.

In the midst of the “not normal” things are O.K. There are many, many wonderful, beautiful, silly, hopefully, peaceful moments that often eclipse the struggles. The spaghetti hit the fan 5 years ago and we are continuing to figure out this marinara soaked life 🙂

Gabriel has been having some issues with his G-tube. Medically it is VERY minor. Over the Christmas break we noticed some redness and he was reporting some pain. We did the things we knew to troubleshoot the redness at home (neosporin, cleaning the area really well, removing and reinserting the mic-key). He is a super tough dude so we took it seriously when he said it was hurting. We ended up at URGENT care on January 1 (Happy New Year!) thinking it was an infection and we just needed an anti-biotic.

We were wrong. It seems he just needed the mic-key button resized. The one he had didn’t fit correctly anymore, stomach fluids were leaking out and causing irritation. We waited out the weekend and met with the surgery clinic on Monday. He received the new size and everything should have been good to go.

Unfortunately, He is still reporting pain and is very sensitive to letting us touch it at all. It looks less red every day but the poor kid has been walking around like a post surgery patient trying to protect his abdomen. It has been taxing on us emotionally because he is reacting in fear and frustration everytime we give meds. It is so hard because he absolutely refuses to take medicine by mouth, one the main reasons he has the G-tube is from the pneumonia caused by aspirating on medicine when we were syringing it down his throat.

I am praying that it stops hurting and he becomes more willing to allow us to give him medicine very soon. The G-tube has been a God send to us. Not having to wrestle him daily just to make sure he gets the medicine he needs has been wonderful. I had forgotten how emotionally taxing it was to negotiate medicine 3 times a day but find myself back there. It is better because at least I’m not worried about causing pneumonia or his choking or gagging his meds back up but it is hard on this mama’s heart.

Tomorrow is New Year’s Eve and I find myself wanting to hang onto 2015 with all my strength. I’ve never been a big New Year’s Eve party girl. However, I have always enjoyed reflecting on the year that has passed, as well as, thinking about, praying for and envisioning the year to come.

This year I picture myself sliding down the edge of a cliff hanging on with just my finger tips, white knuckled and shaking…fingernails digging in…..I am not ready to leave 2015. I am not ready to live in a calendar year my dad never got to see. Experiencing such a big loss in the month of December feels like such a double blow to me, I am dealing with the first month and year without him at the same time.

When Dad first died I would describe how was I was as “Devastated but functioning”. Coining the phrase for myself really helped. I was determined not to say “OK” (which I still did more times than I want to count), but to answer as honestly as possible and this phrase gave me a go to.

A few short weeks later I find myself saying things like “I’m just a big hot mess”. I’m ok with being a big hot mess, it is all I know how to be right now. It is more of a walking around in a fog of shock and disbelief. It is really possible that PawPaw won’t be taking Gabriel on hikes in the spring? Is it really possible that the book he recorded for me is one of the very few ways I can access his voice? Is he really gone?

As a preschool teacher I am off for a few weeks every Dec/Jan, usually the lack of schedule gets to me pretty quickly. Not this year. I have been so thankful for the lack of responsibility. I am completely unmotivated. At times I find making simple decisions incredibly taxing. Then,I have other moments where I can easily and succinctly tackle a project that has boggled me for months. Not ideal,but this is what grief looks like right now for me.

I am so thankful for outlets…blogging, time with family, conversations with friends both scheduled and unscheduled. (I had a case of verbal diarrhea in the Target aisle a few days ago with an incredibly nice woman in my mom’s group). I am thankful for all the love, support, care and kindness being poured in as well.

I probably won’t stay awake to see the ball drop (even in the eastern time zone), but I will treasure each moment for rest of 2015. Then as 2016 arrives I will continue this process of grief and by the grace of God, live into the legacy Dad left behind.