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ellies pandasWhere have you been?

 

I haven’t seen you blog in forever. I get that a lot.

 

I really haven’t blogged in about a year, that’s basically when my life fell apart.

 

I have started to write you about this a million times but it was like ripping a page out of my diary that felt all too personal, scary and so very vulnerable. See, it is one thing to talk openly with you about my struggles but it’s a whole different ball game when you discuss your child’s struggles. Am I sharing too much of her personal information? Will she be embarrassed later in life looking back? Is sharing actually going to help anything? These are the questions I have asked myself over and over throughout the past year. It was hard for me to even think about sitting down to blog because this has been the ONLY thing on my mind for the past year and it seemed very unauthentic to try and talk about my workouts or fashion or other life adventures when this is it. This has consumed my life.

 

I decided I wouldn’t share any of her health struggles until I felt ready. Until she felt ready. And until we had a generalized idea of what the hell is happening to my child. And so today I am ready to share our personal journey through hell. A glimpse into what our life has been like over the past year.

 

It’s hard to know where to begin, but I will start with 1st grade. Ellie had a terrible experience with a teacher who belittled her in front of her class. (I wrote briefly about that here a while back). I pulled her out of school and home schooled the rest of the year. The following year we got into a university model school where she is in class 3 days a week and homeschooled 2 days a week. The school was/is great and we loved it so much we decided to move about 45 minutes away to be closer. Since Steven and I both work from home, it seemed like an easy decision.

 

Everything fell beautifully into place. Our house sold quickly, our new house was everything we hoped it to be and we were 10ish minutes from our new school. Once we moved we noticed some extreme behaviors in Ellie (she was 8 at the time). We had concerns that she had ADHD about two years prior but it was discovered she actually has celiac disease. Once we got the nutrition part more regulated some of the ADHD symptoms subsided but didn’t disappear. This behavior was different though. We would find her hiding in her closet, curled up in a ball rocking and crying. She would have extreme anger and outbursts that would make a prison inmate look like a saint. She became violent stabbing herself or me with pencils or throwing chairs at my face during homeschool. She was very violent and very angry. There was no particular trigger and no solution we could find that would calm her down or break these fits of rage. She went from being a highly advanced reader and a straight A student to barely being able to read. Not even able to sound out vowel sounds or blends. Things that came so easy to her before, suddenly were gone. She started talking about wanting to die and taking her own life. She would tell me vividly how she thought she would do that. As if I didn’t have anxiety before, I lost it and had melt downs at this point! How in the world can a precious child want to take her own life? Doesn’t she know how good she has it? No bills, living at home, playing with her friends and dogs…I mean she has it so good I just don’t understand.

 

She became completely 100% obsessed with food. She woke up begging for food, went through the whole day thinking about food, hiding food to hoard and eat later. She would binge eat and cry because she was still starving. We would eat dinner and she would be starving. There is no control switch for her saying “i am full” or this is “enough.” She has no control over food or anything else in her life. Food is one of the obsessions holding her prisoner.

 

I would call her psychiatrist and psychologist in tears almost on a weekly basis saying I didn’t know what was going to happen next and I am terrified. Should I take her to the hospital? What will they do to her? How do I handle this? She was diagnosed with PTSD from moving. Really? Moving 45 minutes away caused PTSD? I am not downplaying that diagnosis but what I am saying is that I knew there was way more to this than being homesick. The psychiatrist prescribed Ellie with Clonidine to help her mood swings and behavior. We also started Vayarin (a fish oil Rx to help with the ADHD problems). The pros? I noticed that when we gave her the Clonidine at night and it kicked in, she was way more compliant. The cons? She would absolutely pass out. Like eyes rolled in the back of her head, pass out, no way I am waking up kind of out. The goal was for the medicine to help during the day to even her out with the anger and moods but this didn’t work. It was a temporary bandaid yes, but a long term solution no. After a couple of months, Ellie refused to take the medicine and would have a complete melt down screaming at us telling us “you only want me to take this because i am so angry you want me to sleep!” Well heck yes I wanted you to go to sleep, momma is exhausted with dealing with this all day, I needed a break but no that wasn’t the reason for giving her the medicine obviously. We have heard great things about the vayarin but unfortunately we didn’t ever see a change with her attention or focus. Ellie was and is still 100 mph in every direction and has the focus of a knat. The anger and fits of rage continued. Unable to leave Ellie alone with her sister in fear of her hurting her or even the animals. Ellie was under our supervision at all times, except when we were working or when she was in school the three days a week. School always gave us positive reports and her teachers love her. They say her behavior at school is good and haven’t complained about that which completely baffled me. Her psychiatrist told me that she is doing everything she can to hold in and keep it under control during school and then unleashes the beast at home!

 

Working and leaving for weddings for the weekend became increasingly difficult. Ellie started having such severe separation anxiety that she would scream and cry. She would cry so hard she wouldn’t be able to breathe. Why in the world at the age of 8 is this happening? Ellie has ALWAYS been Miss Independent so why in the world would she need to cling to me like saran wrap now? Every possible reason entered into my head. Has someone hurt her? Did something happen I don’t know about? I mean our kids stay with family, nothing could have happened. So that was another therapy session and more dollars.

 

This still continued and with more visits and dollars at the psychiatrist and psychologist and doctors offices they decided maybe Ellie just needed a change of medication. Lets just change it to the Clonidine ER version that way it will be in her system longer throughout the day. We started that medication and within weeks Ellie was having hallucinations and hearing voices. She would come to me sobbing saying she didn’t know how she felt and she doesn’t know why she hears these things. She hears voices in our house and they are coming after her. Just walking our dog she would almost have panic attacks thinking people were watching us and coming to get us. Mind you, we live in the country and there was no one around anywhere close. She became almost handicapped to this fear of people trying to kill her. She couldn’t or wouldn’t go anywhere without me by her side. She had to sleep beside me, walk beside me….I couldn’t even go to the bathroom without her at my side. She was so terrified. I would joke with her that she was trying to get back in the womb because that’s about how close she had to be with me at all times!

 

She got an ipod for christmas and she became so paranoid that she deleted almost all her apps thinking people were tracking her down through the ipod and coming to get her. The smallest tasks usually cause the biggest fits. Please brush your teeth, clean your room, take a shower, brush your hair. Just those right there make her lose complete control. Just last week she was brushing her hair after the shower and she told me the voices told her to cut her hair. She cut about a foot off underneath her hair. I called her doctor again to talk and let him know I think this medicine is doing more harm then good! We started talking once again about all the symptoms and what is currently happening etc. At this point I am already frustrated because I am tired of my daughter being a test dummy for medicine. He asked me, what I thought, a weird question at the time. Has your daughter had strep throat lately? Well, not that I know of but she did have strep throat every two months for a couple years several years ago before she had her tonsils removed. I hear a big, uh huh. He said I think I know exactly what is going on….. he mentioned something called PANDAS and that we should get further testing to confirm possible diagnosis.

 

What the hell is PANDAS and why would strep a couple years ago play apart in my child acting like Satan’s spawn? Ironically, I came across a blog from a friend of a friend and it was titled “the silent kidnapping of our daughter.” I started reading the blog post and my eyes grew bigger and bigger. It was every symptom and everything I had been experiencing of the past year! It was like the one piece of the puzzle was missing and that blog was that missing piece. OMG it finally made sense. My daughter has PANDAS. We spoke to her psychiatrist and pediatrician who also said, YES this is it, lets get you in with a specialist who can help you.

 

So this is where we are currently.

 

We saw a new psychiatrist this week that has extensive experience in dealing with PANDAS kids. I really like her and I am excited for Ellie to meet her and start working together. Our last psychiatrist was older and Ellie had a difficult time connecting with her so she would shut down and block her out. It became a big chore for us to get there and it almost became not even worth it.

 

What the heck is PANDAS? “PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more. PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children. PANDAS has an encephalitic-like onset. Some childrens’ onsets are clearly debilitating and they become near catatonic and homebound. Other children can function at school and then fall apart at home for hours on end. BUT IT IS CLEAR – THE FORMERLY NORMALLY FUNCTIONING CHILD IS GONE. PANDAS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally we have seen a myriad of other symptoms will intensify in the weeks and months post-acute onset. If the severe symptoms do not stop and persist over many months, permanent cognitive damage can occur. PANDAS children may have moderate to dramatic improvement with antibiotics within one week of treatment, however, further interventions may be needed. How to stop the entire syndrome is still debated, but many parents and doctors report prolonged antibiotics (two months to one year) and/or IVIG (intravenous immunoglobulin) treatment or plasmapheresis. (This is quoted from the PANDAS network website. To learn more about this disease of hell, click here to go to the link)

 

Another important reason I wanted to share our journey of PANDAS with you is because a lot of the specialist and treatments aren’t covered by insurance and we need more awareness. We need more people to advocate for this absolute hell you watch your children struggle through. PANDAS was discovered with its first confirmed patient in 1998 and in 2015 the first collection of research was published. This is a newly discovered disease and not recognized so clearly by money hungry, greedy insurance companies. (I won’t elaborate on my feelings on insurance companies but I have a feeling you can probably sense it).

 

We have an appointment with one of the top specialist in the country, Dr Beth Latimer of Washington, DC this Friday. I will be driving down with Ellie to get testing and exams done. From there, we will determine her treatment plan. Our schedule has to be flexible because we have no idea how long we are going to be there and when treatment will start. The thought of even telling her she will get a shot makes me want to throw up because she will lose control and probably have to be restrained (this happened several during celiac testing).

 

Where does that leave me? Honestly, feeling kind of crazy. One minute I am fine and the next minute I am left feeling depleted and in a puddle of tears. This has tested our marriage and our family but we are determined not to let this shake us and we know that God has it all under control. I think moms naturally have “mom guilt,” now i feel guilty for so much….am i making the right choices? Because i have anxiety and depression, did i somehow give her my issues? And the worst is feeling like I am ignoring our oldest daughter Lilly because Ellie monopolizes 99% of my time. But after speaking with another amazing PANDAS mom, she made it clear, one of the first things i have to do is FORGIVE myself. It’s hard not to let your emotions get out of control when you have a child yelling at you and/or hitting you; it’s normal to want to shake your child and be like “get over it!”

 

What about work? Well, our absolute first priority in life or business is OUR FAMILY.

 

Right now my family needs me more than ever and that’s the most important thing in my life. Steven and I have a handful of weddings this year already scheduled (5 to be exact). When goal planning/financial planning for our year ahead, I was nervous and having anxiety because we didn’t have enough booked. For the past 4 years we have shot 30+ weddings a year and to only have 5 on the books for 2017 terrified me. I was so concerned we weren’t booking weddings BUT the truth is, God was just preparing us and protecting us because He knew that this season we would need to really focus on our family and this isn’t the season for us to be traveling to shoot weddings. 70% of our work is out of state and like I mentioned before, leaving has gotten increasingly difficult with the separation anxiety. Are we quitting photography? NO WE ARE NOT. Are we putting things on hold while we take care of our family? YES. However, we will still be shooting the weddings we have on the books, we will most likely not be taking anymore for the year (lifestyle sessions and local shoots are different and more feasible for us to shoot).

 

Steven has been applying for full time jobs in order to allow me to stay home and take care of Ellie and homeschooling. I am so thankful that he understood how vital this need was for our family. Right now, our only source of income has been my etsy shop that I opened several months ago. God has been so good to provide for us through my art. Am I scared as can be wondering if we can pay our bills and mortgage next month? Yea, I am real scared but I also know that nothing else matters other than getting my child healthy. I am willing to sacrifice anything to get my old Ellie back! I also know that God has never let me go without and we will stay faithful in God’s plan to know that He is ALWAYS good.

 

So I wipe my tears away and I take a deep breath and I pray. The hard times are what teach us, they make us grow, they make us fully dependent on God and that’s what He wants. He wants us to hand it over to Him and trust that He will take our burdens. That’s where it gets hard. Learning to LET GO and HAND it over to GOD. Releasing control, releasing try to do it all because naturally that’s what we try to do.

 

I have never felt as lonely as I have this past year. I have had “friends” just disappear. I’m human, so heck yes it hurts my feelings. Some just don’t understand what I or my family are going through or what I have on my hands (nor have I been super open about it either). I have been a really crappy friend, I get it. It’s almost impossible for me to “hang out” or chat on the phone. I am always bombarded with distractions and have Ellie hanging off my side. The friends I do have, that have stuck by my side, I am so incredibly grateful for. Recently God has been amazing in orchestrating connections between me and many other PANDAS parents. Once I began chatting with them, I felt a huge weight lifted off my chest. For the first time in so long, I didn’t feel alone. I didn’t feel insane (ok still insane, but they reassured me this would make anyone feel like they are losing it).

 

I will keep you updated as we continue this journey. It’s certainly going to be a marathon and not a sprint. Good thing I have training as a runner right? Ha.

 

The next question I get when I tell people what is going on is….what can I do for your family? PRAY. I covet your prayers and that is the only way we will get through this difficult time. So, if you can do anything we ask you to please keep us in your prayers. Another thing I want you to realize is, this is a medical diagnosis not an unruly/disobedient child. Ellie hates acting this way. I began having much more empathy when I realized this was a medical issue instead of a bratty child having a tantrum.

 

Lastly, here is a video that will give you a glimpse into what PANDAS looks like. This documentary is coming out soon. I still find it hard to watch because it’s so heartbreaking.

My Kid is Not Crazy documentary trailer from Tim Sorel on Vimeo.

 

Xo

lucy signature

  • January 25, 2017 - 11:18 pm

    Rose Butterfield - Will keep you and your family in prayer.ReplyCancel

  • January 25, 2017 - 11:27 pm

    Deborah Norman - Lucy, I have been really praying for you and your precious family. Have you set up a Go Fund me page or anything in place for donations? Much love to youReplyCancel

  • January 26, 2017 - 12:55 am

    Amy - Lucy,
    I’m so sorry. I can’t believe all you’ve been through… devastating. My son was very ill when he was a baby and it took almost a year for a diagnosis. It was one of the darkest times of my life. Helpless. I will definitely be praying for your family- for patience and wisdom, for healing and joy. Thank you for sharing your story.
    AmyReplyCancel

  • January 26, 2017 - 2:21 am

    Terri Herman - Thank you for sharing! Know that was not the easiest thing to do but this will help others, I am sure. I had a former preschooler diagnosed with this and he had to have a second round of antibiotics. He is doing better now. Praying your Ellie will find relief too. Please take care of yourself, you are the only mom she has!ReplyCancel

  • January 26, 2017 - 2:39 am

    Hallel - Oh friend. My heart absolutely breaks for you all. Will be fervently praying. Praying for answers and peace while you are waiting.ReplyCancel

  • January 26, 2017 - 3:05 am

    Jessica Ballard - Prayers for you, Ellie and your family. For peace, for answers, for course correction. We pray for continued hope.ReplyCancel

    • January 26, 2017 - 4:24 am

      Margaret - What an amazingly brave and bold story you have shared Lucy! So truthful and eloquently written! I can’t imagine your difficulties and frustrations but I truly admire you so much for staying strong and fighting for your Ellie & your family! My kids are grown now and I continuously felt guilt about the way i raised them, I think all parents do that! My oldest suffered and still from extreme ADHD and we questioned every move. I still do to this day! We do our best as a parents… ultimately though, I think love and patience sometimes are the only “right” we can do! Never second guess yourself! Keep on fighting and loving! Know you are doing for Ellie what you can. You are fighting for her! You are on her side! You are her strength! You are amazing! Know you have prayers out here! Ellie will be great! God is Good! She is lucky that God chose you and Steven to be on her side!
      PrayersReplyCancel

  • January 26, 2017 - 3:57 am

    Jamie Dalton - You have had so much on your plate but I am so glad to hear that you have some answers right now. Just the piece of mind that it gives to finally have a direction to work in.ReplyCancel

  • January 26, 2017 - 4:26 am

    Judy - I have a friend in CT whose daughter has pandas. If you would like I could have you get in touch with her. Maybe just for moral supportReplyCancel

  • January 26, 2017 - 5:27 am

    cheryl lemke - Praying for your family.ReplyCancel

  • January 26, 2017 - 11:55 am

    Barb - Thank you for sharing. I’m so sorry for the pain and suffering you all have endured. How awesome though to finally have answers and to get to work on real treatment for your little girl. Your ‘God was preparing us’ statement really hit me. So much truth and comfort in that. I bumped in to a Steven Furtik sermon [on Instagram!?!] on this very point (The Power of Pre). A powerful message that smacked me in the face. If you are ever feeling weak and need a bolster – I highly recommend a watch or listen. It’s powerful and it will restore you. I found the link to the full sermon on the Elevation Church website. All the very best to you and yours. ~ Barb @petersonmadeReplyCancel

  • January 26, 2017 - 1:01 pm

    Jennifer Anthony - Lucy- I’m so sorry to hear what Ellie is going through. She is such a special child (not that this should happen to anyone)!

    I’m glad you have a diagnosis. I’m sure the road won’t be easy from here…but at least now you are in the right one!

    If Ellie is ever interested in seeing some of her old playmates, please let me know. Drew would love to see her!

    JenniferReplyCancel

  • January 26, 2017 - 1:07 pm

    Tracy Burke - Sweet Lucy! I feel your pain. I feel your hope too! You have my prayers 🙏🏼ReplyCancel

  • January 26, 2017 - 2:23 pm

    Prissy Sherrill - Thank you for this incredible blog! Praying for you, Steven, Lillie and Ellie!ReplyCancel

  • January 26, 2017 - 3:13 pm

    Julie Gaddy - Oh, Lucy. You break my heart and buoy my heart at the same time with this story of your family’s journey thus far. Yes, absolutely, I will be lifting all of you up in prayer. Our God is an amazing God. We know that we must trust that His time is the right time.
    Safe travels. Please know that there are a lot of people who love you and are praying for you.ReplyCancel

  • January 26, 2017 - 8:52 pm

    Shannon - Hi Lucy! My sister sent me the link to your blog because, I too, am the parent of a Pandas child. He is 16 now and we have been dealing with Pandas off and on since he was 4. So empowering to hear another Pandas parent echo the feelings and emotional roller coaster I have experienced over the years. We too see a specialist in Connecticut, Dr. Dennis Bouboulis. It has made all the difference in the world. Let me reassure you, know that we understand Pandas, life is improving on a continual basis. There is a light at the end of the tunnel that you some days think you will never escape. At 16, my son shows no signs of Pandas and I see his true self shining through. Although I worry I may never stop constantly watching for the symptoms I’ve grown so use to noticing in him during a Pandas flare up.Prayers and best wishes as you go through this difficult journey with your daughter.ReplyCancel

  • January 27, 2017 - 1:06 am

    Athena Van Waardenburg - God bless you and you will be in my prayers. i understand what you are going through, by experience. My heart aches for all of you! When doctors can’t come up with a diagnosis and treatment, their knee jerk reaction is: your child Is “mentally ill” , and they feel quite sure about. That never ceases to amaze me.
    My one humble advice of support, when the moments are right, “talk to you daughter, but I mean really talk to her and connect with her heart. And remember, she is no dummy, she is very aware; so when you acknowledge her awareness, both your journies become more meaningful. Bless you, and may the Angels of White Light protect and be with you all.🙏🏻ReplyCancel

  • January 27, 2017 - 4:48 am

    Jackie Cooley - Sending so much love, prayers for peace, answers, and for Ellie to feel better and comfortable with her surroundings again and more like her old self. God has His arms around Ellie, Lilly and you and Steven and Marlon and Kitty cat. He has led you all this far and will continue to have His arms around ya’ll and His angels over you. I am not in Charlotte now but in Wilmington, but if there is anything I can do, you’ve got it. Prayers are a given..always Hugs sweetheart and blessings Miss JackieReplyCancel

  • January 27, 2017 - 5:09 pm

    Shannon L - Prayers for you and your family. When my daughter was 5 we went through some very difficult health issues with her. Major temper tantrums and OCD behavior as well as panic attacks. It was hard to get answers. Her issues had to do with asthma and the OCD was attributed to a reaction to xyrtec (allergy medication). All of this happened in August-November. Strep throat is a nasty thing and can lead to so many issues. My daughter often struggled with strep throat. By the next Feb my daughter was hospitalized and had had the flu shot. Possibly a combination trigger of the shot and strep and she was diagnosed with HSP. An auto-immune disease that attacks the blood vessels and can damage the kidneys.
    I wish more pediatricians were more knowledgeable of the things to watch for and how to prevent these auto-immune reactions. They need to recognize them sooner, so their patients can get the help they and their families need.
    By the way my daughter also has celiac, we homeschool and we have done wedding photography. My daughter is now 21 years old. Once we got her diagnosis, we were able to get her better. Knowing what is wrong is about 75% of the battle. She was the healthiest in our family for a long time. In more recent years she has had some episodes of HSP and I worry about her all the time. (I used to call her my appendage.) God bless you and your family! I pray that you are on the road to recovery and continued answers in how to best help her. You can do this. You are a great mom!ReplyCancel

  • January 27, 2017 - 7:50 pm

    Kristie Tighe - Lucy and Steven. I’m so very sorry to hear about Ellie and all that your family is struggling with. I hope that your search for the right doctor and the correct treatment comes quickly and that Ellie is feeling more like her old self asap. I cannot imagine how scary and uncomfortable it would be to be 8 years old and to have things seem so out of control . Thank God and thank goodness Ellie has such a loving and supportive family who has her back. My prayers are with you and with your whole family.ReplyCancel

  • January 27, 2017 - 10:44 pm

    Frances Mundy - Praying for all of you,Lucy. Parents never know what they will have to go through with raising their children. You are a trooper and I hope and pray all turns out well.ReplyCancel

  • January 28, 2017 - 2:29 am

    Jama Mulkey - As a mother, my heart aches for your pain. As a Christian, my heart is filled with gladness that God has a hand in Ellie’s healing. Your faith and trust in your Lord with guide you, as He has thus far. Continued prayers for you and your beautiful family.ReplyCancel

  • January 28, 2017 - 5:50 am

    Lillian Johnston - Lucy, I am so glad you wrote this!! Wow! What a journey you and your precious family have been going through! And with such grace and humility! Bless you sweet sweet Lucy! I’ve been going through a hell too but of different sorts. Yes!! Continue to lean on Jesus!! He will not let you down!! He will see you through this!! Continue to put Him first and your family first too!! He will Not Let You Down!!!
    I will ferevently be praying for you sweetheart!!! You, Steve, Ellie and Lily!! You have my word I will keep you covered in prayer!!!
    Love you!! Hope to catch up with you when things are a little more calm!! Praise God the Dr put two and two together!! Will also be praying for the other families dealing with PANDA.
    Love you so much sweetheart,
    LillianReplyCancel

  • January 28, 2017 - 8:38 am

    Alicia Husband - Thank you for sharing your story, girl! I’ve always been fascinated by your many talents and this journey you are on is sure to become another opportunity for growth, creativity and followership, in the midst of hell, as you put it. I will be praying for your family as I know it impacts so many. I’ll certainly keep you and that sweet daughter in my thoughts too. Keep us posted & keep your head held high, y’all will find the best way to manage this among everything else. Good luck with the testing!ReplyCancel

  • January 28, 2017 - 3:18 pm

    Kelly - Hi! My friend just texted me this blog post because we are going through the exact thing with my 8 year old daughter. What a blessing to find your post! You are not alone and neither are we! Our crazy, full-on symptoms started over this Christmas break. I went straight to my prayer warriors and answered prayers became rolling in. One of them mentioned PANDAS – I had no clue what it was, but it sounded exactly like my daughter. Our pediatrician agreed, tested her, and yep — has had strep in her system. Put her on antibiotics and her symptoms for the most part went away. We took her into an ENT for a tonsillectomy because she does not have any symptoms when she has strep and has had it a lot. I ended up knowing the ENT doctor! A week later we had her tonsils removed (this Tuesday to be exact!) and we have been home recovering. We are still having hard days – last night was rough. I am praying we can figure this all out ~ we have a therapist we are going to this week.

    In the same way God has been paving the way for you for this upcoming year, I believe he has done the same for us. So many answered prayers. I will be praying for you and your family. And know you are not alone!ReplyCancel

  • January 28, 2017 - 6:29 pm

    Kira Campbell - Hi – Several friends sent me a link to this blog when your first published it – I am also in Charlotte, and in the midst of PANDAS hell – although thankfully we are starting to see our daughter again after a long, long absence. Dr. Latimer is amazing, and I hope your visit goes well. If you have to do any bloodwork in Charlotte proper, I can’t say enough amazing things about the techs at the Levine Children’s Specialty Clinic Lab – they have done all our blood draws, no matter how long it took. Our kids hate this as much as we do – but you CAN and WILL help your daughter find herself again.ReplyCancel

  • January 28, 2017 - 8:23 pm

    Susan Pollak - Oh my goodness, Lucy! It was heartbreaking to read about what you and your precious Ellie have been going through! I have never heard of this terrible disease, but so happy you finally have a diagnosis and can begin treatment soon. Our prayers will be covering you all, as well as prayers for Dr. Latimer as she tests Ellie and formulates the best treatment protocol. Thank you for opening your heart to share your journey with us. Prayers going up!ReplyCancel

  • January 31, 2017 - 3:35 am

    Hannah Simmons - Lucy, I am just catching up on what you and your family are going through. Please know I will be praying for you and your sweet girl. Your girls are so blessed to have a mother like you! Lean on your faith and know the Lord will not let you down. Sending huge hugs and lots of prayers your way!ReplyCancel

  • February 1, 2017 - 2:49 pm

    Michelle Morton - Lucy…..I love…love…LOVE…when people are real. As mothers…we never know what the “challenge of the day” might be. Looks like yours has been extended much longer than that….but I am grateful that you shared. Too many moms struggle in silence and are ashamed of real life issues in their families. But God says that ALL THINGS work together for good for those who love Him. ALL things. That refers to us…the real people…not just “WonderWomanMom” with her excellent, robot children. I do not think those kids are normal anyway. 🙂
    Thank you for your honesty. If I knew you…I am sure we would continue to be friends….even with your stuff.
    Be encouraged!!
    MichelleReplyCancel

I am sitting still. I’m not watching tv, painting, reading a book, editing, working out, meal prepping or internally simultaneously multitasking. Im just sitting. Breathing in the fresh air on a park bench.

Either you’re with me at this point or you’re not (and thinking I am real weird, I am, but stay with me here).

The reality is how often do we just sit and enjoy life without letting it pass us by. How often do you sit and enjoy the beauty that God has surrounding us?

In today’s society, I feel like the underwritten theme is, whoever can hustle the hardest wins. I don’t want to be the winner. Yes, you heard me right, Ms Competitive doesn’t want to win something! I don’t want to always be in a rat race to make more money or do more things. I don’t want to feel anxiety ridden because my schedule is so packed full, I can’t even stop to grab lunch. That life is meaningless. Like really, what are you working for at the end of the day? Don’t get me wrong, I am all about hard work but not to the point of sacrificing your family.

See, I’ve always been that girl. The girl who runs 100 miles per hour and does everything. I am a recovering workaholic. My personality, I could basically work 24/7 and be completely fine. But the reality is, it is not fine. There is more to life. My dad was always that way. He is unbelievably successful and a hero to me in so many ways. Yet when I was young, he traveled about 300 days a year because he was a hustler. He missed out on everything and I know that is a regret he has. Since growing older and wiser, he realized you don’t get those moments back and to really treasure them; work will always be there but your kids won’t. Now, he is always here for us and drops anything at the drop of a hat for me and especially my nuggets.
So today. I will sit. I hope you will sit too. I hope you will speak positive and encouraging words to yourself. I hope you will enjoy these moments with your family and realize nothing is more important than these moments. So sit. Be thankful. And enjoy the fresh air.
Xo

Lucy

I went to my daughters middle school volleyball game yesterday. Yea, I don’t know how I have a child in middle school now, it blows my mind!

Lilly took a brave step this year and tried out for a sport she had never even really played. Gymnastics was always such a big part of Lilly’s identity but after she experienced burn out in gymnastics she hadn’t found her “thing” again. So, this year she made the JV volleyball team.

Lilly has given it her all but starting a new sport, you typically aren’t the star player. She is also really petite. She has come home so many times feeling pretty defeated from practices or people picking that she was too small to be a volleyball player. I tell her size means nothing and then go on to tell her about my all time favorite basketball player, Muggsy Bogues! Muggsy was a whopping 5’3″ and played in the NBA for the Charlotte Hornets. I grew up going to games and watching him play. If anyone proved size didn’t matter for their sport, he is the first one that comes to mind. When Lilly feels defeated I give her pep talks and show her slam dunk videos from Muggsy!

Monday I was picking Lilly up for practice she asked me if she could show me her serve. She tried 5 different times and each time it was so close to going over the net but it wouldn’t quite make it.

So, that brings me back to yesterday, a home volleyball game. Lilly doesn’t usually get the opportunity to play since she isn’t first string but regardless we are always there cheering on the team. But yesterday, towards the end of the game, they put Lilly in the game. I’ve never seen her play in a volleyball game. Would she know what to do? Would she panic?

The score kept creeping up and we were heading towards a win. Then Lilly moved back and it was her turn to serve. My eyes got big and my stomach was kind of turning. I didn’t want her to be embarrassed if she didn’t make it over the net.

Next thing I know she serves the ball and it went over the net and she scores the winning point for the game! Her eyes were about as big as tennis balls, she shocked herself! Her team went wild and jumped up and all huddled around her. They picked her tiny little body up in the middle of the team and were cheering for her. It was like an epic movie taking place right before my eyes. I was taking pictures with my phone and I stopped midway to soak it all in!

While she was picked up in the huddle, she looked right into my eyes up in the bleachers making sure I witnessed her winning moment. She was literally beaming with pride (and so was I). My heart melted.

When we got in the car after the game, Lilly was on cloud 9. She was really proud of herself and she told me, “see, being small ain’t so bad!” We laughed and I couldn’t stop telling her how awesome that was and how proud I am of her for never giving up.

It was just a JV volleyball game, not the Olympics, I’m aware. But to Lilly, it was just as good as the an Olympic game. It was a moment that will replay in her mind forever. It was the moment where all the hard work and all the failures paid off. It was proving that size doesn’t matter but what really matters is your heart.

So today, it’s a home school day aka “wine Wednesday” haha but we are smiling big and still on cloud 9 after Lilly’s confidence booster yesterday.

xo,

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If you know me, then you know that I am the girl that flies by the seat of her pants through life. I am not afraid to look new challenges or opportunities in the eye….in fact, I welcome them. Some would call me a procrastinator, I like to call it, spontaneity! See, there is only so much you can really plan in life whether you like it or not.

Like photography for me, it wasn’t my plan. I lost my job, people liked random pictures I took, I enjoyed taking pictures, I started learning more and BAM before you know it I have a successful photography business. (I made it sound very easy but there was a lot of work that went into that BAM part) 7 years later my husband and I are still shooting away as the ultimate tag team, Smitten and Hooked. We shoot about 20 weddings a year and believe it or not, that is what we have slowed down to. Several years ago, we were booking anywhere between 30-35 weddings a year. I love so many aspects about our job. I mean, we are with people on the best day of their entire lives! We form a bond that is pretty unbreakable and we go to the best parties around! It’s stellar!

But there is a thing called “burn out.” And it isn’t like when you are in a car and you are pedal to the medal doing a 360 and you smell the rubber from your tires…but i guess you could use that metaphor. Shooting 30-35 weddings a year is mentally exhausting. I am sure every job can be mentally exhausting but for creatives, our brain is “on” and our personality and everything else has to be “on” during the wedding or the shoot. We are constantly thinking about not missing the important stuff, the perfect light, the time line, getting a better shot, etc. The list goes on.

Since moving, back in January, I was feeling a very heavy burn out. My mind was exhausted and I needed something else creative to fuel my fire. I wanted a hobby I could do that didn’t involve just exercising. I wanted something creative that I could do with my kids or when they were in bed asleep and it was just “my time.” That is when I started working on my hand lettering.

I have always been a doodler, I love to write. Have I always had the best at writing? Well, no, just ask my third grade teacher who had a special meeting with my parents to tell them how terrible my penmanship was 😂 but I enjoyed playing. So during our “off” season (January-March) as we were getting settled into our new home, I started practicing my hand lettering. Every day, I set time aside to just doodle, practice letters or do Instagram lettering challenges I found on different pages. I wanted some large canvases for my home so being the DIY’er that I am, I knew in order for them to look good, I better start practicing!

So, lets fast forward a bit. I started getting better at my hand lettering. People started asking me to letter things for them and that’s how it started. I started teaching hand lettering classes monthly at a local art studio (you might have seen that on the blog for registration). I mean this whole thing has been quite a whirlwind to say the least but a bigger blessing than I could ever tell you! I prayed and prayed for so long for God to show me something I could do on the side so I didn’t have to take as much of a workload with weddings and leave my kids every weekend. I wanted to do what God wanted me for me and I never ever thought it would be this. God opened up these doors and I have been blown away at how incredible this journey has been. I think this is pure proof of what it means to “let go and LET GOD.” I have been painting canvases for peoples homes, Bibles for peoples walk with God, place cards and signs for weddings, invitations for special events, custom art work for NASCAR corporate, submitted work for a book publisher in London, tshirt designs for Lululemon, and so on….

Am I having the time of my life with this creative venture? Absolutely! Do I plan on leaving photography anytime soon? Absolutely NOT ;). Do I plan on not booking 30 weddings a year, you betcha!

I have sold so many of my hand painted Bibles and paintings just through social media that I was hesitant to do anything else with it but I can’t stop there. I feel like God has big plans for my life and when He says jump, I say HOW HIGH? So, I started an etsy page with my art. You will find a lot of fun stuff! My hand painted Bibles, custom art prints, canvases, etc.  If you are wanting a custom piece you can always request that on there as well!

I will be showing more and more of my art on the blog, in fact, I will be blogging again. Remember that whole burn out thing….yea…well I am back now and I have so much to share and so much on my heart. I have missed you friends.

If you want a quick way to get to the etsy page from now on, you can find a link at the top of my blog that says art…

art directory

Thank ya’ll so much for the love and support you have shown already, I couldn’t be more thankful for the encouragement! I would love for you to check it out, decorate your homes with it and spread the word 😉

Click on the picture below to take you right to my etsy Homefront.

bobgoffcanvas

xo,

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  • September 6, 2016 - 8:32 pm

    Kelsey Raymond - Your hand lettering/pantings are absolutely beautiful! Congratulations on your new adventure 🙂ReplyCancel