Healing Oils

   I had mentioned a while back that Gillian had received two new diagnoses and a new medication, our 9th anti anxiety medication  in a year (/relatabletogether/2018/02/id-like-to-sove-puzzle.html).  Well, that medication was not our golden ticket. It was terrible. It made her worse. I emailed her psychiatrist to let her know and her response was to take her off the meds for three days and then just given her half a pill a day instead of a whole one and then let her know how she was doing in two weeks.  Seriously?!  I didn’t want even a crumb of this medication in my child.  It was making her crazier then before so what, half a pill would just make her a little less crazy?!!  No thank you!  I was mad.  Mad at the doctor for not really helping us, for not giving us any kind of hope that one of the millions of medicines she had was going to help our daughter.  I was mad that she didn’t really seem to be getting just how bad things were for Gillian and how horrible our home life was.  I felt like she didn’t even care. We were just another patient to her, a medical record number and that was it.  

   I stood in the kitchen that night feeling just completely hopeless. My heart was in tachycardia (as it does after a stressful day), my body was exhausted, my emotions were exhausted, my brain was exhausted.   Chris walked in and I looked up at him with tears streaming down my face (again) and said, “If we don’t find something that helps her soon, I am going to die from a heart attack or a stroke.  My body can’t take this anymore.”  I was completely serious.  Years of stress has had a negative affect on my body.  Heart issues, adrenal fatigue, TMJ, back pain, neck pain, anxiety, complete exhaustion.  I was at the end of the rope hanging on by one little thread that was fraying really fast.  He asked me what I thought we should do and I told him that I thought it was time to get her a medical cannabis card and try CBD and THC oils.   He agreed.

    We had talked about trying cannabis oil on and off for the past year but never felt God leading us in that direction.  We had only heard great things about others using them for their special needs kids.  It wasn’t something new to us but it was something new to our home. I don’t know why God didn’t want us to explore this option sooner but when we had talked about it before I never felt a peace about trying it out.  A year ago I had all the appointments lined up to get Gillian a medical cannabis card and an appointment at the dispensary to talk to someone about what we would use.  Literally an hour before the appointments God gave me this totally unsettled feeling so I canceled the appointments and that’s when we started with our psychiatrist and our long journey of anti-anxiety medications.  Now, here we were a year later having exhausted almost every route but this one.  Suddenly I had an overwhelming peace that this was exactly what we were supposed to be doing.  

I kept Gillian home from school the next day and off we went to the doctor to get her cannabis card.  The doctor was a very kind man, who looked over the big pile of medical papers describing all of Gillian’s diagnoses and understood exactly why we were there.  He signed all the paper work and off we went to the dispensary.  In all honesty here, people, this was my first time in a cannabis dispensary and actually my first time even being near any type of marijuana.  I was so nervous when we walked in.  Here we were, a red-headed white lady with her chatty, disabled daughter.  What a pair!  At the entrance was a security guard and a “bouncer-type” guy checking people in.  He was a big guy with tattoos from head to toe and a long beard.   For those of you who know Gillian you know that this is just the type of guy she likes.  She immediately started telling him that she liked his beard and his tattoos.  I was telling her to be quite.  Geesh, child.  There was some logistically issues with our paperwork since I have conservatorship over Gillian and have to be on the paperwork as well so “bouncer dude” had to call the owner, Jason, out.  Honesty again here, I was shaking like a leaf at this point because I was so nervous and had no idea what the heck I was doing.  I was such a rookie.  Jason came out and I told him who I was (we have mutual friends) and why I was here with Gillian.  Oh my word, you guys, he was the nicest guy ever!  He told “bouncer-dude” to handle the paperwork because we were legit and then he took me to the waiting area where we sat and talked about all that had been going on with Gillian for over half an hour.  He got it.  He gets it.  He has a special needs child as well and cannabis has been a life saver for his child. 

Jason explained what THC and CBD do and what the difference is between them.  I was liking what I was hearing and getting excited about trying something new.  He then told me what the side affects are...eating, sleeping and being happy.   What?!  Seriously?!  So basically you’re telling me that this is going to help my daughter eat, which she was rarely doing much of these days, sleep, she has never slept though the night in her 19 years on earth, and be happy , which I would give anything just to see her happy again.  Is this for real?!  I laughed and told him that those are my kind of side affects.  As we were getting ready to leave Jason told me that he knew that this was going to be the start of healing in Gillian and in our family.  He guaranteed it. I was speechless.  No doctor had ever told us that.  No doctor had ever given us any kind of hope for Gillian to be happy and they never even cared about the affect it was all having on our family.  All we ever heard was, “ this medication has some bad side affects but maybe it will help.”   Hope, someone was giving us hope.  It was amazing!

Now normally after an appointment with the psychiatrist I would get in the car and cry because I was so stressed about trying another anti-anxiety medication and nervous abut the side affects we would have to endure.  When I got in the car after leaving the dispensary I cried tears of joy because someone actually cared enough to give us hope.  Someone had been where we are and they had found healing and now they were helping others find healing to and we got to be some of those people.  I immediately called Chris and told him about the entire wonderful experience and the little bottles of hope I now had.  I couldn’t stop smiling.  I was overjoyed that my family, our home, was going to find peace again.  

   It took about 48 hours of Gillian taking the oils and she was a completely different person.  Within a couple of weeks she was sleeping through the night (without us having to give her Unisom) and she was having only about 1-2 tantrums a week.  Peace was being restored in our home.  Laughter was back and everyone was just overall happier.  It was wonderful.  It is wonderful.  It hasn’t been perfect, we occasionally have days where it seems like the oils aren’t helping but she is nowhere near being that horribly anxious person she was before.  

        ___________________________

Now I have to tell you about how awesome all the people at Jayden’s Journey and Kase’s Journey are..........

As Jason, Gillian and I sat on the couch in the waiting area, Gillian kept waving to the security guard and calling him a police officer.  This was cracking every up who worked there and Jason proceeded to tell Gillian that he was just a rent-a-cop.  Oh my word it was hysterical.  They were all totally loving Gillian and commenting on how awesome her fedora was.  She informed them of how much she liked Michael Jackson and the next thing I knew, they had Michael Jackson blaring out the speakers in the dispensary and they were dancing with Gilly.  Remember “Bouncer-dude” the guy who totally intimidated me when we walked in?  Well as we left, Gillian was giving him a big hug and telling him once again how awesome his tattoos and beard were.   When we went back to the dispensary a couple of weeks later “bouncer-guy” saw Gillian and got a huge smile on his face and told her happy he was to see her again.  He’s really just a big teddy bear!  

The first time I visited Kase”s Journey, “rent-a-cop” was there and he remembered Gillian and I and got a big smile on his face and just laughed.  He loved that she called him a police officer and that we all got to joke with him about it.  The people who work at both of these dispensaries are the most amazing people who’s desire is to help people find healing and hope through cannabis.  They know their stuff and are always patient with me as I ask a million questions about the oils and the dosage Gillian is taking.  I now visit one of the dispensaries once or twice a month and they are both such welcoming places.  I laugh now when I think about how nervous I was that first time..  I am so grateful that God has brought us to the place of hope and healing and for the people He has placed in our lives who fight the fights for cannabis.  

Spring Break Nearly Broke Me

    Oh, it was a week.   A week filled with ups and downs, smiles and frowns. A week filled with calm and chaos, peace and frustrations.  A week filled with laughter and tears, hope and hopelessness.  I never knew so much could fit into just one week, but it can.  Let me rewind a couple of months so you are all up to date.....

    We started Gillian on CBD and THC oils a couple of months ago (I will go into all the details on this decision in a later post) and she has become a whole new person.  Seriously, the change has been dramatic and beautiful.  She sleeps through the night now, her anxiety levels have dropped drastically and all of those tantrums she was throwing....gone. She doesn’t throw them anymore!  Peace has been restored within her body and within our home.  It’s been beyond wonderful.   Everyone has been happy and there’s laughter in our family again.   Amazing beyond words.  (I really will get into all the details in another post, I promise. ;) ). I was excited for Spring Break with Nolan and Gillian (Emma’s spring break is this week so she was at school all last week) and to actually be able to do stuff with Gillian now that she was this new, enjoyable person.  

    

    On Monday we went to Target.  Don’t all things fun start with Target?!  Ummmm....YES!   The kids got to pick out snacks, treats and lunches for the week.  This included for Nolan Lunchables, Hamburger Helper stroganoff, Doritos and Mountain Dew and for Gillian Limon chips, root beer and Lunchables.  Good healthy stuff!  We rarely let them buy junk so this was a special treat.   We walked all around Target for over an hour and everyone was happy and having a good time.  This was a miracle in itself because, honestly, I have not taken Gillian out to a public place like this for months.  It had become so disastrous and we’d end up having to leave after 5 minutes so I just stopped taking her.  This was a breath of fresh air.  We sang songs and had a dance party in the car all the way home (Emma was glad she had to be at school.  Lol).  Yep, this was going to be the best Spring Break ever!   On Tuesday we hung out at home all day and played.  Another great day!  Before Gillian went to bed Tuesday night we talked about how we were going for hair cuts in the morning and then going to the movies.  She LOVES Cortney, who has been cutting all of our hairs for a decade, and was so excited she was going to get to see her.   She slept great Wednesday night just like she had been doing for the past two months. 

    Wednesday morning I got the kids up to get ready to go get hair cuts.   I gave Gillian the oils just like I have for the past two months.   She started acting anxious.  She didn’t want to go get her hair cut.  She started shaking just like she used to.  I got her showered and dressed and made her a protein drink to drink on the way.  She didn’t want it and threw it in the sink.   “What the heck is going on?!”, I thought to myself, “This is not our normal anymore.”  By the time we got to Cortney’s she was in full blown tantrum mode.  I spent the next hour trying to calm her down while everyone got hair cuts.  She refused to let Cortney cut her hair and instead spun herself around in the chair while spitting on the floor.  

    I started going over everything in my mind that had happened in the past 24 hours, trying to figure out what had her so off.  When we left the hairdressers Gillian was asking if we could go to the car wash.  “Of course!”, I responded, hoping that this would get her back on track.  Nope, didn’t work.  Now she was mad that we were going to the movies.  I figured that once we got there she would be okay.  We got our popcorn and water and settled into our reclining chairs.  For the next hour and a half she told me about a thousand times that she wanted to go home.  The movie finally ended and home we went.   The rest of the day consisted of tantrums and tears.  She threw the tantrums and I cried the tears.   I was just beginning to exhale after our years of hell with her.  I was just starting to feel like a normal human being again, why was she reverting back?  I went to bed Wednesday night just assuming that she would be back to her new, wonderful self in the morning. We probably just had an off day and that’s okay, I told myself.  Tomorrow would be great again.  

    I could not have been more wrong.  Thursday was worse then Wednesday. In fact Thursday was worse then any of the bad days we had had before.  The tantrums were bigger then any she had ever had.  The yelling was louder, the stomping was more fierce, the spitting was nonstop.  It was horrible.  I couldn’t even get her out of the house.  Nor did I really want to take her out of the house.  I became a hot mess.  All I kept thinking and texting my husband was, “I cannot go back to this life.  I will have to find a home to put her in if she is going to be like this again.  I can’t do this again. My body can’t do this again.  My emotions can’t do this again.  My other kids cannot go through this all again.”  I was falling apart just at the thought of her going back to her old self again.  It was not pretty.

     Thursday night I messaged with the guy who runs the dispensary where we get the oils from.   He had me up her dosage for Friday and told me to get back to him.  Dosages we’re upped but there was no change.  I was feeling hopeless.  I thought, “this is going to be like every other medication we have done. They work for two months and then they stop working.  What do we have left to try with this kid?  Nothing!  We have nothing!”  Oh the thoughts just kept racing through my mind and then I started yelling at God, “why would you do this God!  Why would you give us a taste of a peaceful child and a peaceful home and then just take it all away?!  You have the power to just make her better so why won’t you just make her better, already!  I’m not asking you to heal all her disabilities, I just want you to take away her anxiety and give her peace in her body. That’s it!  That’s all!  Is that asking to much?!”  I was angry and I wanted to stay angry but the radio was playing worship music and God was trying to talk to me.  I didn’t want to listen. I just wanted to be angry at Him for a little while.  But His voice broke through my hopelessness and I heard Him ask, “Don’t you remember all My truths, child?  Don’t you remember how I work all things together for good?  Don’t you remember that I will never leave you nor forsake you?”  Ugh, yes, I remember all of that, God.  Can I just be mad though?  “Well what would be the purpose in being mad?”  Nothing really.  I just want to be mad...... I always love these conversations with God.  They only happen when I really need a good, swift kick in the butt because I’m being so stubborn and pig headed, but I cherish them and remember them every time they do happen. I was still feeling angry and hopeless but I was also clinging to God’s promises and remembering that He is a good Father and He does love me and He really loves Gillian.  And I may not see the purpose in the chaos right now but He’s working out something amazing that will glorify Him.  

     I texted my community people and told them what was going on and asked them all to pray for Gillian and to pray for me and my attitude.  I could never do this life without the community of amazing people that God has placed in my life.  I messaged back our friend at the dispensary Friday night and he had me up the THC a little more and then mentioned that there was a full moon happening and this could be part of the problem.  Sounds weird right?!  But it’s totally true.  Seriously, ask any special needs mom you know and she will tell you that her kid acts up when there’s a full moon.  Remember when we had the red moon a few months back? Oh my word, these kids were awful that week!   Not really sure what causes the full moon to have that kind of affect on them, but it does.   So I was feeling a little relieved when he reminded me of this.   Friday night I sat on the couch with Chris and just cried.  Poor guy got a lot of tears on his shoulder last week.  My anxiety had kicked backed in (it had been doing so well the past month) and I literally felt like my skin was crawling.  I wanted to just pull my skin off.  This made me sad thinking about Gillian was probably feeling the exact same way except she didn’t know how to communicate that to us.  How scary it must be for her sometimes to be in her body.  I know how she feels but I also know how to talk to others about it and how to talk myself through it, she doesn’t and that breaks this mama’s heart into a million pieces. 

   

    Saturday we started seeing a little improvement in Gillian.  She was calming down and not throwing any more tantrums. She woke up with a stuffy nose so she spent most of the day laying on the couch.  I’m sure her whole body was exhausted from the last few days. Mine was. 

I was selfishly worrying all day that she wasn’t going to be okay for Easter Sunday.  Our plans were to go have breakfast at my sister’s house, followed by going to Church, and then lunch at my in-laws.   I had been looking forward to this day for awhile now and in the back of my head I kept thinking that she was going to ruin it and I was going to end up at home with her all day.  You can send my Mother of the Year award to house.  LOL  I woke up on Easter Sunday at 5:30.  My alarm was set to go off at 6:15 so I laid in bed and just prayed for the next 45 minutes. “God, please bring peace back to Gillian.  Please just let her be okay today so the whole family can be together and enjoy the day.”  I kept sayin that over and over and over again.  I got Gillian up at 7:00 and she was in a pretty decent mood.  Yay!   We talked about how we were going to Auntie’s house and then to our new Church and then to Gramma and Papa’s house.  She was a little apprehensive about it all but we just kept pushing forward.   We got to my sister’s and she was in a great mood the whole time!  When it was time to leave for Church she didn’t give us any trouble.  When we got to Church, she walked right into her Sunday School class with a smile on her face and didn’t even bother to turn around and say goodbye and when we were at my in-laws she sat by me at lunch and put her arm around my neck and her head on my shoulder as if to say “I’m okay mom and I love you”.   It was a beautiful Easter Sunday.  It was an amazing reminder of the horribleness Christ had to suffer to get to that beautiful day of resurrection.  I failed miserably during the few days of “old Gillian” this past week.  I lost my hope, my patience and some of my faith.   But Christ never lost me!  He had His arm around me the entire time guided me forward through the crap and into the light.   Even when I doubted, He just held me tighter.  

    Gillian isn’t quite all the way back to the happy, calm person she was the last couple of moths.  But she’s no where near “old Gillian” and for that I am beyond grateful.  

Grief- The Life You Envisioned For Your Child

I was only 22 when Gillian, our now 19 year old, was diagnosed with extreme developmental delays at the age of 1.  (I will save you all from trying to do the math, I am now 40.  (LOL). We didn’t fully accept the diagnosis until 6 months later.   She was my miracle baby as I was told I would probably never be able to have my own children.  She was the light of my life and in my mind, at least at the forefront of my mind, just needed more time to develop.  We can call those 6 months between diagnosis and getting help my time of walking through the stage of grief known as denial.  I am sure that if you asked those around us at the time, most of them would say that we were in complete denial and that we couldn’t see that there was something wrong with Gillian.  They couldn’t have been further from the truth.  Like I just said a second ago, at the forefront of my mind I thought that Gillian just needed more time to develop, but in the back of my mind, way down deep in there, I knew.   Howie and I both knew.  We just weren’t ready or at all prepared to start walking down that road yet.  We wanted to enjoy our perfect child in her perfectly normal childhood for a little while longer.  We weren’t stupid.  We saw exactly what was going on with our daughter and we heard everyone’s whispering going on around us which was quite hurtful.  Denial just gave us this beautiful, perfect bubble to live in before our lives and our daughter’s life changed forever. We knew that once we started down the special needs road we could never go back to just being a perfect, little family of three.  Once we started all the weekly therapy appointments (we had at least 6 a week they wanted us to start with) we would never go back to the simple life of playing on the floor with our daughter and just enjoying her for her.   Denial was a gift that I so needed so that I could savor those last precious 6 months of normalcy for my daughter and for our family.  

I remember denial fading overnight for me.  It wasn’t a slow fade.  It actually happened quite fast.  I woke up one morning and it was like all that was lurking in the back of my mind had shot to the forefront and I knew it was time to move forward with this diagnosis and all the therapies.   As fast as denial left, anger came in.  I was angry at the people around us who had normal functioning kids and just got to enjoy them.  They got to go on with their merry little lives while I was stuck going to various therapies with my child and then coming home and repeating all that we had learned with her over and over again.  My life, as I knew it, was over and they all got to keep going on with theirs.  I was also angry because I felt constantly judged by those around us because they felt we waited to long to get Gillian help.  -Okay, quick side note here.....I realize now (18 years later) that all of these people meant well and cared deeply for us.  At the time that was not at all what it felt like but none of them had ever been in the situation before so they didn’t get that their words and actions were hurtful.  Heck, I would have had responded the same way if I were them, but now that I have been there and done that it has taught me a lot in how to respond and love on people as they start their journey into this world of special needs and my hope is that it will give you some insight into how to respond to those people as well, because I know that none of us truly wants to hurt someone who is going through a difficult time.  Okay, side not over-  It was hurtful to us that anyone would think we didn’t want what was best for our daughter and that we weren’t dong our best as her parents.  It was hard for me to get over my anger but in time, it faded just as denial did into another stage.  

Remember how I said in my post on the overview of grief that not everyone goes through the stages of grief in order?  Well for me after anger came depression.  I skipped right over bargaining and guilt for the time being.  Oh, don’t you worry, I eventually went through that stage and I’ll get it to it, but first depression.  Depression for me came in the form of retreating.  If I hadn’t already pushed everyone away with my anger then depression was going to do the rest of the job for me.  I stopped returning friends’ calls, stopped going to most functions and stopped talking to people about what was going on in our lives.  Most people couldn’t relate anyways so what was the point in telling them all about everything that we were doing with Gillian.  That was my mindset. Poor me.  No one gets it.  No one understands.  I felt so alone in this new life I was living.  Depression got a good grip on me for probably about a year.  I feel that it lasted so long because I didn’t tell anyone about it or attempt to get help for it.  Instead I just became this person that I am sure everyone thought was a b word and I didn’t even care.  -Time for another side note......This is why it is so important to reach out to someone who has walked through grief before to walk through it with you.  Doing it by yourself DOES NOT WORK!   Trust me, been there, done that, couldn’t afford the t-shirt.  So please, if you are walking through grief by yourself reach out to me or someone else that you know and allow us to walk through it with it.  No one has to do it alone.  There’s no reason to do it alone and it will only make it harder on you and those around you if you try to do it alone.  We were meant to live life in community.  That is how God created us so go find community to walk through grief with you.....Side note over-  Depression was a horrible enemy that I allowed to stay and visit for far to long and it likes to try to come back from time to time still, but now I have an amazing community of sister’s in Christ who will come in and help me kick him out.  

I started down the stage of bargaining and guilt while still in the stage of depression.  It was somewhere towards the end of that long year.  I became queen of the “if only”thoughts.  If only I had eaten better while pregnant (umm....I lived on salads and iced tea my entire pregnancy.), if only we had started therapies earlier, if only I had made her do more tummy time when she was a baby, if only I had breastfed her longer, if only I had made her sleep on her back and not her tummy (when Gillian was a baby, the trend was back sleeping only, I have no idea what the trend is now as they are constantly changing it.) if only, if only, if only, they would just come one right after another all day long.  God, however, finally told me one day that I needed to stop thinking that I was mightier and wiser then He was.  Nothing I did or didn’t do caused Gillian to have special needs.  She was exactly how God had made her.  She was everything that He wanted her to be and nothing He didn’t want her to be.  She was created in His image just like me and therefore she was perfect.  That led me right in to the stage of acceptance.

Gillian was still my perfect child.  She was still my miracle from Heaven.  She was still the baby we prayed for for so long and wanted so badly.  Her life just looked different then the life I had imagined.  She wasn’t going to be potty trained before starting kindergarten.  She wasn’t going to get to be a free spirit that played outside with all the neighborhood kids everyday.  She wasn’t going to be reading chapter books by the stack all through elementary school.  She wasn’t going to ever have all her high school girlfriends over for a slumber party.  She wasn’t ever going to get her driver’s license.  I’m not ever going to get to cry when she leaves for college.  I’m not ever going to get to meet her boyfriend, or plan her wedding or hold her children.  These are all things that one by one I have had to grieve.  Some I am still in the process of grieving through and I know as time moves forward and friends’ kids and my nieces and nephews and my other two children hit major milestones in life and it hits me that that will never be Gillian, I will have to walk the road of grief once again as I learn to accept that Gillian’s life looks different than the life I pictured for her as I held her in my arms the day she was born.  I move forward in acceptance fully knowing that many days I am not okay with this loss but that I will be okay and so will Gillian.

   

I’d Like to Sove the Puzzle?

    Wheel of Fortune is one of Gillian’s favorite shows.  Vanna White wears pretty dresses and Gillian loves pretty dresses.  Every night before bed Gillian watches an episode. We sit in anticipation waiting for Vanna to walk out in her pretty dress so we can see what color it is.  In a few episodes she has walked out in a pantsuit and Gillian gets so irritated that we end up deleting that episode and moving on to the next one.  Once we get through talking all about Vanna”s pretty dress we move on to the contestants.  Gillian has to know each one’s name so she can cheer them on when it’s their turn.  She gets so into it!  She even likes to call out letters with them. She’s just helping them fill in the blanks.  If someone lands on “lose a turn” or “bankrupt” she responds with an “oh man, that’s okay Bob (or whatever their name is)” while clapping for them. When the puzzle is finally solved she hoots and hollers for the person who won.  An episode of Wheel of Fortune is quite the exciting ordeal in our house. 

    I feel like life with Gillian and all her diagnoses is like playing a game of Wheel of Fortune that may never end.  This adult child of mine is very complicated and I’m often told by doctors and therapists that she’s like no one they’ve ever worked with before.  Some like the challenge of figuring her out and some just can’t handle it.  (It depends on the day which group I fall into.). Every so once in awhile we get to add more letters to Gillian’s long list of diagnoses and every time we do my hope is that we will be able to solve the puzzle.  Unfortunately, the puzzle usually just becomes more challenging.  We recently got more letters, we even got to “buy a vowel” to throw in there.  It always seems like once you get a vowel or two up on the board the puzzle becomes easier to solve, not this time.                                                      

    We recently saw one of Gillian’s specialist to talk about her severe anxiety disorder and the possibility of trying new medication. (So far we have tried 8 different meds and she has had an adverse reaction to all of them.)  That’s all the appointment was supposed to be about.  I wasn’t looking to add new letters to the puzzle that day.  We’ve got enough to handle already.  Chris and I sat there with the doctor and talked for 30 minutes straight telling her all that had been going on with Gillian lately and her anxiety. We gave her detailed stories and described in depth scenarios where Gillian had become completely out of hand.  She listened, asked some questions and then sat back in her chair and asked, “Does anyone in your family have obsessive compulsive disorder?”.  Chris and I looked at each other trying to figure out the answer and then replied with a “no”.  It took me a few seconds to realize what she was implying here. I finally asked, “Are you telling us that Gillian has OCD?”.  She immediately replied, “yes”.   

    After we finished talking about our newest member of the family, OCD, we talked about a few more scenarios we’ve had recently with Gillian.  The doctor immediately said, “She has separation anxiety”.  Wait, what?!  I didn’t come in here to buy anything and I definitely  wasn’t looking for the two for one special!  But I got it.  Yay! (That’s sarcasm right there for those who couldn’t tell. Lol). 

    Now, the way my mind works is that when it gets a new problem it finds the solution.  I go into head down and move forward mode.  I know that later I’ll be able to process the feelings and emotions but for now we need to get down to business.  We talked with the doctor about new medications we could try and about how this will be a lifelong battle we will have to fight for her.  See, that’s the thing with Gillian, she doesn’t have the kind of brain that can help her cope with and fight mental illness.  She can’t use the tools that most of us can to calm our anxiety or to talk ourselves down from an obsession.  That’s why we have no choice but to find the right medication that can help her brain do what she can’t do.  We, as her parents, are the ones who have to diligently remember to give her all of her meds ever single day.  We are the ones who have to keep a close eye on her to see if she is having any adverse reactions to a new med and then make sure to report it accurately to the doctor.  We are fighting this battle for her that she can’t fight.  At times it can be completely overwhelming.  Especially when you start questioning whether or not you are making the right decision or reporting the right reactions you are seeing to the doctor.  

   

    We walked out of the doctor’s office with way more than we came in with- 2 more diagnoses to add to the list, a new medication to try and a very heavy heart.   Fortunately we had an hour drive home where my brain and my heart could collide and start processing.  It didn’t take long for the feeling of being overwhelmed to wash over me and for the tears to fall.  The questions started pouring out, “Is this just going to keep happening for the rest of her life?  Are we just going to keep getting diagnoses to add to the list?  Will we get one thing under control just in time for something else to come out?  I’m suppose to give people hope but how can I do that when I’m feeling so hopeless?”  Tears and more tears streamed down my face as my heart, once again, aches for this child of mine who can’t help herself and as it feels completely overwhelmed and incapable of trying to do it all for her.  I sat, staring out the window, with my tears and my thoughts for awhile.  Then the music that had been playing this whole time started breaking through into my head.....

   “All the poor and powerless, all the lost and lonely..... will know that You are holy.....and all will sing out hallelujah, and we will sing out hallelujah.  And all the hearts who are content And all who feel unworthy. And all who hurt with nothing left, will know that You are holy.... shout it go on and scream it from the mountains. Go on and tell it to the masses that He is God!”  I couldn’t help but chuckle at first at these perfectly timed words piercing straight into my soul.  God, you always give me exactly what I need exactly when I need it. There was my hope!  There was my reminder of the hope I have for me and the hope I have to give to others!  He is God.  Period.  That’s it.  That’s all I need to remember.  HE IS GOD!  Tears of pain turned to tears of worship and remembrance of who He is.  He is God and God is good.  Even in the midst of diagnoses and medications and heartache, He is still good.  He is still God.   That was something that my heart and mind could easily process. That was something that I could grasp on to.  He is God is what I will shout from the mountaintops for all to hear!

    There’s still an unsolved puzzle to deal with though.  Gillian’s list now looks like this..... left hemiparetic cerebral palsy, intellectual disability, epilepsy, sensory processing disorder, polycystic ovarian syndrome, severe anxiety disorder, separation anxiety, and obsessive compulsive disorder.  Fortunately, when I deal with professionals or other special needs parents I can say- CP, ID, epilepsy, SPD, PCOS, SAD, separation anxiety and OCD.  These are the letters I use when I’m trying to solve the Gillian puzzle.  They add up to a whole lot of nothing.  Actually that’s not true.  They add up to a whole lot of me needing Jesus.  A whole lot of time spent on my knees crying at my Saviour’s feet.  A whole lot of learning how to be completely selfless.  A whole lot of love for this adult child of mine.  I’ve realized that’s it’s no longer about trying to solve the puzzle.  I actually don’t even think that there is a puzzle to be solved anymore.  It’s about shouting form the mountains that He is God even in the midst of new diagnoses, new meds and whatever else may come our way.  

___________________
Here’s a link to the song I quoted above.  “All the Poor and Powerless” by All Sons and Daughters. https://m.youtube.com/watch?v=ieOL4X3nk2c

Jesus Wept

        This morning was a rough one with Gillian.  The entire last week has been been a swinging pendulum on the rough not rough scale.  Today it swung towards rough. The morning started out well.  Gillian was in a great mood and excited about the eye doctor appointment we have this afternoon.  She loves going to the doctor’s, thank goodness since she’s had to go to so many in her lifetime.  We got ready for school without any drama until it was time to actually get in to the car to go.  I basically had to drag her to the car.  Fun times.  When we got in the car she asked for some nuts.  ( I always keep bags of nuts in my car for when I get the munchies.  Keeps me from driving through somewhere and eating crap.) and so I gave her one of my bags.  That kid started shoveling them into her mouth as fast as she could.  The whole way to school was filled with shoveling nuts into her mouth followed by spitting.  

       We pulled up to school and I asked for the bag of nuts back.  Well she was not having that at all.  She jumps out of the car and goes full on tantrum (you know, stomping, spitting and screaming at me).  I grab her by the hand and start dragging her towards the drop off area where all the teachers and paras wait for the kids.  She still has the bag of nuts in her hand.  I ask for them again and she tells me no.  I try to grab them from her (one of the paras is quietly waiting for me to hand her off to her) and get them but then she goes running out into the street where the buses are pulling in and out stomping and screaming.  At this point two other paras (one who is the nicest man but will use his brawn if need be and it need be) come running out to get her out of the way of the busses and into the safety of the waiting area.  Now she has three paras all around her trying to calm her down and one looks at me and tells me its okay for me to go, they got it.

      I start walking away and my emotions just washed over me like a giant tidal wave.  “Don’t cry. Don’t cry. Don’t cry”. I kept walking back to the car where Emma and Nolan were waiting for me to take them to school.  As I opened the car door I could feel the first tear start to fall.  “Keep it together.  Don’t cry.”  I get in the car and Nolan says, “I’m sorry you had to do that mommy.”  Oh how the floodgates did open.  Emma leaned over and hugged me and I just sobbed.  She just kept saying, “I’m so sorry you have to deal with this mom.” Once I finally got myself calmed down I told them both that I wasn’t crying for me.  I was crying for her.  My poor, sweet Gillian who is trapped inside this body of emotions that she doesn’t know how to handle.  She doesn’t know how to cope and deal with the everyday pressures of life.  She doesn’t know how to communicate with us how she is feeling, or what she is thinking or how we can help her.  I weep because I my hurt for and with her.  Those tears were cleansing tears.  I do not apologize for the tears I cry (Okay, sometimes I do, but I am quickly reminded that there is no need for apologies), they are tears of compassion, tears of pain and always tears of healing. 

     Jesus wept.  These two words give you and me permission to weep, too.  We are free to let the tears fall.  There is no reason to hold them in.  There is no reason to apologize for them when they do start to fall.  God will weep with us when we weep, whether they be tears of compassion or tears of pain He weeps with us.  Weeping is powerful.  Weeping brings healing.  God gives us so many promises when it comes to our tears-

 Psalm 30:5b, “weeping may stay for the night, but joy comes in the morning.”  

Revelation 21:4, “He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain.  All these things are gone forever.”

John 11:35, “Jesus Wept”. It’s the shortest verse in the Bible and for me, at times, has been  one of the most powerful. Why was Jesus weeping?  He had just spoken with the sisters of his friend who had died.  They were mourning.  Jesus is full of compassion and felt their suffering.  I could go into so much more detail here of why Jesus wept but for now I want to stick with the compassion component.  (If you’d like to read a great article on this short, powerful verse go here 

https://www.desiringgod.org/articles/why-jesus-wept

      Jesus hurts when we hurt.  He weeps when we weep and yet why is it that when we cry we automatically apologize for crying?  Jesus wept without apologizing, so why can’t we?

     After I cried those tears in the car this morning I was able to laugh. I got the hurt out and was able to move forward to the joy.  Emma, Nolan and I were all able to take a deep breathe and move forward making each other laugh all the way to school.  And I know that on this side of Heaven I will shed many more tears and that’s okay, but on the day that God brings me home to be with Him there will be no more tears for eternity.  So for now, I thank God for giving me the permission to weep as Jesus wept and I do so unapologetically just like Jesus did.  

The Aftermath

    This past week with Gillian without her “stuff” has been mostly great. We’ve had a few breakdowns and tantrums over “stuff” but she has recovered quickly.   She actually seems happier and less stressed now that she doesn’t have a bunch of junk to worry about.  Before this whole ordeal of taking everything away, she wasn’t that great. She hadn’t been eating that well, her anxiety levels were through the roof and our home felt like we had no peace in it. We were all at the end of our ropes and barely hanging on.  Since Monday she has been eating like a normal person should eat.  Which I think helps with being happy. Her anxiety levels are slowly diminishing and we are all feeling a sense of peace in our home. On Friday Gillian sat in the kitchen with me while I was food prepping for the week and we listened to music, had a dance party and laughed.  I haven’t enjoyed being around this child in so long.  My heart was so very happy.  On Friday nights we always go out for family dinner just the five of us and lately Gillian either didn’t want to go or she’d go and have a meltdown and we’d all be miserable. This past Friday night she was excited to go with us, ate all her dinner and was a joy to be around. It was a perfect family dinner out. Can’t remember the last time we had one of those. 

   Bottom line here is is that the “stuff” was weighing her down. The “stuff” had her so occupied that she couldn’t think about anything other than her “stuff”. Not even eating. She couldn’t enjoy life because all that “stuff” kept getting in the way.  Now that the “stuff” is gone she is free to enjoy her life and food and her family! Without her “stuff” she can now experience peace. 

   Can we just take a moment here and replace all the above “stuff” words and replace it with “sin”?  

-  Bottom line here is is that our “sin” is weighing us down. Our “sin” has us so occupied that we can’t think about anything other than our “sin”. Not even eating. We can’t enjoy life because all our “sin” keeps getting in the way.  Once our “sin” is gone we are free to enjoy our lives and food and our families. Without our “sin “ we can experience peace.-

   That “sin” space can be filled with a number of different things- An addiction (food, drugs, shopping, porn, gaming, sex, Netflix binging, etc...), laziness, gossiping, sinful anger (there is righteous anger but that’s now what I’m talking about here), judgment, and more. The bottom line is that sin keeps us from God and from enjoying Him.  Just like Gillian’s “stuff” kept her from enjoying her life. We become so preoccupied with our sin, whether it’s doing the sinful act or trying to hide the sin so others don’t know about it. It keeps us focused on it rather then being focused on Christ, the One who already paid the horrific debt for that sin. The One who’s waiting for you to let the sin go so you can enjoy the freedom he ransomed Himself for!  

   So let me ask you this, what can you put in that “stuff” blank?  What sin is weighing you down and keeping you from enjoying life?  What sin has you so preoccupied that you can’t see anything past it?  

Matthew 11:28-30 says “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

    Lay down your “stuff” at the cross and take up the yoke of Christ.  He wants to give you rest from the burdens of the sin you’ve been carrying around. 

————————————

The Real Vacation- Finale

      As soon as Gillian realized the “stuff” was gone she came after me. She always come after me first. I’m the one she spends the most time with so I’m her safety person.  She was all up in my face asking where her stuff was.  My heart was racing and my breathing was short.  “I don’t know how I am going to deal with this”.  Howie came into the room and pulled her out and War World 5 started.  The kids and I stayed in the bedroom and shut the door while Howie worked on defusing the bomb, I mean Gillian, in the other room.  It was a tense stand-off that lasted almost 20 minutes.  Once we could safely leave the room we gathered up our bags and headed to the car and took off for the beach. The whole way there all we heard from Gillian was “where’s my blanket. Where’s my pillow. Where’s my Santa picture. Where’s my lipstick. Where’s my purse. Where’s my umbrella. Where’s my phone.” Over and over and over and over and over again.  She was a broken record.  There was also spitting and stomping going on in the back seat.  We made sure the doors were locked and the window locks were in place because you never know with her.

     We got to the beach and got all of our chairs and the blanket set out. Gillian sat in the chair next me, Emma sat on the blanket and the boys went for a walk down the beach. I exhaled. This was nice and I just knew Gillian was going to be happy because she loves the beach.   We could finally all relax and enjoy our time together as a family.  “Gillian don’t throw the sand”. “Gillian stop spitting”. Dang it, I exhaled to soon!   Next thing I know she has taken the two largest handfuls of sand known to man and thrown them all over Emma.  Then she gets up and throws her chair across the beach.   Fortunately, the boys were close enough for me to call them back to help out. We got Gillian calmed down again and then helped Emma get the sand out of her hair, off her back, shoulders and neck and out of her purse.  We decided to have a bit of a laugh over this one because my motto is “you either laugh or cry” and at this point in our trip we had done way too much crying. So we laughed. 

    I felt so bad for Emma and  I decided that she and I needed to take a stroll down the beach by ourselves.  Off we went. This was nice. This was calm. This was quiet. I love spending one on one time with this child of mine. I think we walked about 30 feet before I heard Gillian screaming at me from behind. “Wait!  Wait!  Come back!  Stop right now!”  Then I hear Howie, “You have a stalker. You’d better run!”  I looked at Emma, we both smiled and I said “run!”. So Emma and I took off running down the beach cracking up laughing with Gillian running behind trying to catch up.  We didn’t get very far because it’s really hard to run fast when you are laughing hysterically. Gillian got so mad that she walked into the water and got all wet and almost lost her shoes.  “Reality discipline” is what my friend called it!  We had a good laugh over Gillian’s tantrum this time. I think that’s what we all needed.  

      We ended up walking the beach together as a family and enjoying ourselves.  We were able to go have lunch without any craziness and decided it would be best to skip the park and head home early after all the Wars we had fought.  The ride home was peaceful and full of great music and singing. We came exhausted but we came home as a family that continues to walk the journey together relying on Christ to get us through each crazy moment of every crazy day. 

      This, my friends, was the Real Vacation. The behind the scenes of all those happy vacation pictures.  The moments between the smiles for the camera. Isn’t it funny how we all do that?  (It actually isn’t funny at all. It’s sad) It’s like wmhen you are yelling at your kids and then the phones rings and you answer it sounding like mother Theresa.  “Hello.  Oh hi!  How are you?  I’m doing great. Life is wonderful. Thanks for asking”. You hang up the phone and the exorcist comes back out at your kids.  The next time you look at someone’s happy social media photos just remember that you only have to smile for a split second to get that photo.  

-My sweet daughter Emma and I with a photobomb by Nolan-

The Real Vacation- Part 3

(Who knew that a 24 hour trip to Monterey could turn into a 4 part mini series?!)

    Everyone woke up in a decent mood on Sunday. (I say decent because we do have a teenager and we all know how they can be in the mornings. Especially when their little brother wakes them up by jumping on the bed that they are sharing.). Our plan for the day was to hit up the breakfast buffet at the hotel, then head to the beach in Carmel, have lunch at Cannery Row Brewing Company, followed by a couple hours of play time at Dennis the Menace Park and then we would head home.  Everyone was showered and dressed and Howie and Nolan had walked across the street and got Starbucks for Emma and I while we were getting ready so we were all in great moods now. It was now time to walk downstairs for breakfast.  

    World War 4- the battle between the quilt and pillow and Gillian had begun.  We sent the other two kids downstairs to the safety of the breakfast buffet while Howie and I began hostage negotiations. 5 minutes later we were walking out the door without the quilt and pillow! We won! Woohoo! We kick butt at this parenting stuff! That’s right, who’s your mama who’s your daddy!!  We are awesome!!! Ya!!! 

    Umm...not so fast.   I sat her down at the table the other two kids had saved for us and walked over to grab a plate to get her food.  Next thing I knew Gillian was running after me stomping, spitting and yelling.  Just picture how a 2 year old throws a tantrum in public.  We all see that and chuckle because we’ve “been there done that”.  Well when a 19 year old does it in public no one chuckles.  It’s quite awkward. Quite humiliating. I’m often surprised (and thankful) that people don’t call security on her or me.  I walked over and grabbed her arm and kept her as close to me as possible while walking through the buffet line to get her food. I got her back to the table and got her situated and tried to get back up to go get my food but she wasn’t  having any of that. So my wonderful husband brought  me bacon. All is now almost right in the world.        

      We manage to get through the rest of breakfast without any more drama and I was eventually able to go get my own plate of food by myself. I really just needed more of that bacon!  As we were finishing up the last of our food Howie declares that he will be taking away all of Gillian’s “stuff” when we get back to the room.  He’s done with it. It causes too much drama and she’s like an addict and it needs to be ripped away from her. Emma, Nolan and I freaked out even though I knew he was totally right. None of us wanted to deal with the backlash that would come from this.  It took a lot of convincing, but in the end we all agreed that ripping everything from the clutches of her hands was best. Howie ran up ahead of us to the room to hide the quilt and pillow in his bag.  She had been taking about it nonstop all through breakfast and couldn’t wait to get back up to the room to have it. Oh boy, was she in store for a big surprise!.......to be continued. 

The Real Vacation- Part 2

     After dealing with a Gillian battle I usually have a headache and am completely exhausted. But we are on vacation and we are going to have fun even if I have to force it, gosh darn it!  I often forget that I’m not the only one experiencing the Gillian’s anxiety attacks in the family.  I don’t realize that the aftermath of the tornado that just went through affects all 4 of us (Howie, Emma and Nolan).  So here we are at one of our favorite restaurants in Monterey and I’m trying to make everyone have a good time and smile for pictures at dinner and they are all grumpy.  That made me grumpier and I lost it.  I gave them all a piece of my mind that I didn’t have to spare. I wanted them to feel bad for not being happy. I wanted them to know that they were ruining the family trip that I had planned to make them all happy. I wanted them to know that I was not happy. I finished saying what was on my mind and we finished our pizza in silence and went back to the hotel and I went into our room and shut the door and cried.  I was done.  

    Thank God I have an extremely patient and loving husband who didn’t get mad at me or judge me, but instead came into the room and let me cry and unleash all that I was feeling.   “I’m done. I’m spent. I can’t parent this child any longer. I don’t want to be her parent any longer.  I just want to run away.”  He let me go on and on for a long time. No judgment. No anger. No telling me I was wrong for how I was feeling. None of that. He just listened and understood. He got it.  He gets it.He lives this life of a special needs parent too.  Saying what I was feeling out loud made me feel better. So much better.  I went out to the living room area and apologized to my kids (Emma and Nolan) for my behavior and made sure they both knew that none of this was their fault. Emma apologized for being grumpy at dinner and I apologized to her, for about the millionth time this year, that she had to live this life with her sister. She always responds with, “Its okay mom.  I’m so sorry that you have to deal with so much with her.”  To which my reply is always, “I don’t ever want you to feel like I don’t have anything left for you. I always do and I always will.”  These are the moments that I know I would never have with Emma if we didn’t have a special needs child. She and I would not have the close knit relationship that we have if it wasn’t for Gillian.  For that I am oh so very grateful.  

    We ended the evening with four of us sitting on the very small hotel room couch together while watching Spider-Man. Gillian laid on her bed next to the couch and fell fast asleep. She was exhausted. This poor adult child  of mine has no control over her anxiety or her body or her emotions. My heart was happy and aching all at the same time....... to be continued.

*A couple of the forced smiles pictures*

-The Hubs and Nolan-

-Me and Gillian-

The Real Vacation- Part 1

    We went to Monterey over the Christmas break because Gillian, our 19 year old special needs child/adult, had been asking to go to the ocean for awhile now.  I posted lots of great photos on Instagram and FB. Of course, I only posted the ones that made it look like we had a great time. A friend even made the comment, “It looks like you had a great time”.  I laughed at that because earlier in the day I sent this picture of me to one of my closest friends and said, “Me. Sitting on the beach. Going crazy. Gillian is spitting.  Gillian just threw sand at  Emma.”  Then I sent her a picture of me and Gillian all smiley and said, “But I can put this pic on FB so my life looks calm and perfect.”  

And that’s what I did and that’s what everyone thought, but that was far from the truth.  Here’s how the weekend really went....

    Gillian is obsessed with her “stuff” right now which includes: a quilt, a pillow, an umbrella, a purse, a picture of Santa, a tube of lipstick, headphones, an iPod, at least 4 bandaids on her fingers and at least 3 pieces of gum in her mouth.  She knows what her “stuff” is and if she is misses one of those items she freaks. She stresses out, spits, yells, stomps and tears things apart until she finds the missing item.  We decided to let her bring all her “stuff” along on our trip so that it would be more peaceful. Backfired!  After getting all situated in our hotel room we decided to go get dinner at Gianni’s.  We start to leave the room and Gillian has all her “stuff” in tow. Normally we let her bring everything but the quilt and pillow out of the house so naturally we told her she had to leave those things in the hotel room. World War 3 broke out. I was shoved and almost knocked over as she tried to grab these items  back from me. Spit started to fly, yelling started to happen and feet were stomping.  No this is not the motions to the newest line dancing craze. This is Gillian unleashing her anxiety. This is when our other two kids are told to leave the room and find someplace safe to be until we get her under control.  This is when I muster up any strength I have left to get her to sit down and calm down.  This is usually at least a ten minute process.  We finally left the hotel room and she had the quilt and pillow in her arms. We weren’t going to win the battle against this adult child’s anxiety this time. Fortunately she was willing to leave it in the car when we got to the restaurant but she was stressed to the max about it. 

    We walked in and Gillian, Nolan and I sat at a table while Howie and Emma went to order the food.  I took these moments to grab Gillian’s hands and pray for her and over her and with her and for me.  I pray this prayer often with her lately as her severe anxiety disorder has completely consumed her life and ours. “Dear Lord, please meet me here in this place right now. Please wash your peace over this child and take away her anxiousness. Lord, I know she knows you and has you in her heart, I ask that your Holy Spirit would pour his fruits out of her. Love, joy, peace, patience, kindness, gentleness, goodness, faithfulness and self-control.  Let these fruits pour out of me as well, Lord.  Give me the strength and wisdom I need to help this child.  Help her, God.  Please help her. Let her be comfortable in her skin. Let her fear nothing.  Let her just have peace.  Oh how she needs peace.  Thank you for getting us through another battle. Thank you for being here with us and never leaving us.  Amen.”

    I know she feels bad.  She gives me a big hug and a kiss and I tell her how much I love her and how sorry I am for getting so upset at her. I know she doesn’t really get my apologies but that doesn’t mean I keep them from her.  The rest of the family rejoins us and we finally sit in peace as a family for a moment......to be continued.