Izzys real hair wig needs washed, conditioned and moisturized weekly. So today was my first day to do that. So while she created slime at the kitchen island, I stood at the kitchen sink and washed her hair. And it made me sad. I’ve really come a long way in accepting and loving Izzy’s bald head, but I still hate the trich that made her bald. And washing her beautiful “head” of hair in my kitchen sink just really sucked. And putting it on a wig stand and drying it there really really sucked. I am mourning her hair tonight. Her beautiful blonde curly hair.

About 8 weeks ago Izzy and I went to The Hair Club Indy to measure her head and choose hair colors for a real hair wig. They offer this amazing program for children who have hair loss due to cancer, alopecia, trichotillamania etc… we had to have a pediatrician order for the hair, but that was it in terms of eligibility. They make and give the kiddo three wigs a year (and each one can be different color and style totally determined by the child) and salon products to care for the wig plus their professional services completely free of charge until they are 18 yrs old. Seemingly nothing is free in this world–but this program is completely, 100% free. And wonderful.

Izzys hair arrived while we were in NYC, but they worked us in quickly when we returned. So last night we went to get the hair cut and styled. Izzy was excited. She’s grown to love her wigs and even has said frequently to me that she may stay bald forever bc it’s “easier.”

We walked into Hair Club chatting and in good moods. The beautiful coordinator came and brought us cookies and chips and sodas and took us back to meet Debbie, Izzys stylist. Moods still good.

And then Debbie showed Izzy her real human hair wig, all washed and ready to be cut. And Debbie attempted to put it on Izzys head. And Izzy shut down. For those of you who have never seen it, when Izzy shuts down she won’t talk. She grunts. She glares. She flips me off and calls me jerk. She answers every question with “I don’t know” and she almost literally curls into a ball.

Debbie gave us a few minutes and as I’ve learned, I asked one question: “Are we done here? Because this is all up to you and there’s no wrong answer” And she cried. And cried. And cried some more. And then she slowly unfolded and said that she wanted it but she was scared. The human hair freaked her out and she didn’t like the feeling of it being wet on her head. Ok…I can work with that.

I have slowly and painfully learned that when Izzy shuts down, she feels powerless and scared and I need to somehow give her back some control. And so when Debbie came back, I asked if we had to do it today, if we could come back, or even if we could take it and have my stylist Annie cut and style it. Debbie was so ok with anything Izzy needed. And then offered to cut it on a mannequin head how Izzy wanted it done and dry it and send it home with us to try in the comfort of Izzys house. Winner winner chicken dinner!

As she cut and styled it, she asked Izzy questions about life and Izzy answered some and I answered the rest (because I refuse to let someone’s question of Izzy go unanswered–I’m working on that with CounselorBrad) Izzy told her she has 34 pets, but then wouldn’t tell her why! Lol!

We went to dinner after the hair appointment to celebrate Izzys 1/2 birthday and swear to God Almighty when we walked in, the host said to Izzy “you have the most beautiful hair!” Todd and I nearly burst out laughing and Izzy beamed. Thanks God for that boost of confidence for our girl.

She wore her wig to school today. My report from her awesome teacher was she pulled from the wig during gym 😱 and she was very preoccupied with the wig which lead to pulling from her head and not very good focus today. Change is hard…even exciting change.

Izzy here….And Yes, calypso drums. The most awesome instrument ever. I wish I played it. But I don’t. You may be wondering why all this talk of calypso drums….the reason is because I saw a man playing calypso drums in the subway in New York City. Can you believe that? People play music in the subway. They play down there to try and make money I guess. Calypso Drum Guy was awesome; he was really good at what he did. And I bet he made a lot of money. He was my favorite thing in NYC. Calypso drum guy and the mouse….Aunt Tina said it was a rat tho.

Kira here: we took her to amazing places in NYC and the man playing calypso music and a subway rat were her favorites….next vacation I’ll just buy her some reggae music and a mouse and have her sit in the garage for awhile. 😂

We arrived home today from our week in the big cities of Boston and NYC. It was a great week, full of history, post high school possibilities, enjoyable food and incredible sites to explore. It was also a week of what I call encouragement and Izzy calls nagging (put your phone down Iz, catch up with us Iz, time to get up/go/get on the train/get off the train Iz), constant chatter, tight sleeping quarters, walking miles in the city and cold windy weather. We bargained, sassed, exploded, apologized, laughed, teased, loved. I watched Izzy pace and pull hair when she was anxious; curb her temper as well as let loose and explode. I watched Jackson confidently explore and take charge of subway routes and walking routes like a pro. I saw a son who could thrive in the big city and a daughter who would sink there. I saw faces of excitement, fear, happiness, annoyance and every facial expression in between. And I will tuck all those memories away to revisit them over and over again. I pray my kids do the same.

Izzy spent her week with headphones on listening to music or playing her favorite games. It was frustrating to me at times because I kept thinking she was missing out on things she should have been seeing, but last night she came to me and said “Mama, thanks for taking us to Boston and NYC. I know I was on my phone a lot and you didn’t always like that, but when I wasn’t, the city was really overwhelming to me. It’s a lot more busy there than home and it made my busy mind go even busier.” She didn’t sleep at all last night and I wonder if it wasn’t her brains reaction to all of the stimuli of the last week.

So now we’re in the home stretch to summer. 3 more days of Spring Break followed by 8 weeks of school and then we will have a Senior and a 6th grader. Between now and then we have Izzys Psychology Eval that begins today, results of that eval and hopefully the writing of her IEP for middle school.

I’ve been dreading this last quarter of elementary school for, well, for years. But I need to start showing excitement not dread for Middle School for Izzys sake. And so that’s what I’m going to do. I can’t say I won’t be emotional as we wrap up elementary school-that would be an outright lie-but I can help build her excitement and of course continue to advocate for Izzys needs before we get there.

We’re off to start the Psych Eval. Prayers for Izzys peace and cooperation…and some good results.

Everyone always looks forward to vacation and when it arrives it passes by so quickly. The first half of our trip is over and we’re on the Amtrak train to NYC. I can feel the prayers from our family and friends surrounding us and lifting Izzy up. Her routine is non-existent and she’s not put much food and water into her tummy…she’s been sassy and mean one minute but recovers to be kind and excited the next. She and Aunt Tina got through two mornings just the two of them and they’re still talking to each other. She has conquered the subways, trolleys and now the train. She petted stingrays and sand sharks, tried on every sparkly makeup in Sephora, tried cannolis and vegan cookies and followed the Freedom Trail. She saw history she recently studied and a 533lb sea turtle who is 90+ yrs old.

She decided not to go see Harvard or MIT this trip because she’ll go when it’s her turn to search for the perfect university. Or who knows, maybe she’ll visit Bubba here in Boston when he’s in university.

I’m immeasurably proud of her for her Boston experience. Yes, I’d love for less sass and less phone and more viewing the city and scenery, but she saw the things that were important to her…the Boston massacre, where they read the Declaration of Independence for the first time, the Boston Tea Party and Paul Reveres house and gravesite (also where the 5 victims of the Boston Massacre and Sam Adams are buried). She has memories to share with her teachers and class. I really couldn’t ask for more from her.

And now we are rolling towards the Big Apple. I can’t wait to see their faces. Keep praying…..

The kids and I and Aunt Tina leave tomorrow for the East Coast. Jackson has been invited to go see Harvard (that’s what Izzy tells people anyway….truth is I just went online and signed him up! 😂). So we’re headed to Boston to visit Harvard, MIT and to see the Boston College campus. We’re excited to visit all of the Revolutionary War sites, Izzy studied all that this Fall in 5th grade, and Jackson can’t wait for some fresh seafood. We’re then taking the train down to NYC for a quick 3 days introducing the kiddos to The Big Apple. I can’t wait to see their faces as they see this amazing city that I cannot describe in words to them. To see them look out in wonder from the top of the Empire State Building, and to view the beautiful Lady Liberty. And I can’t wait to breathe in their excitement in going to two true Broadway shows each!

I’ve been praying a lot for peace and calm, for laughter and wonderful memories to be made. I’m afraid that Izzy will be overstimulated and anxious, especially in the lights and noise of NYC, but I’m trying my best to give that worry over to God. I pray for no hair pulling, even though I know that will not happen. But the good news for Izzy….in her own words “I don’t think anyone in NYC will even think twice about a bald 11-yr old girl!” I bet you’re right kiddo. ❤️

Izzy froze tonight during dance. I had stepped out to talk with Todd and I stepped back into the studio to find Izzy completely frozen in place in a silent panic attack. As I approached her, in the one place where she always overcomes anxiety and where bad days melt away, all I saw in her eyes was fear. She couldn’t talk to me. She could barely move, Bearbear was on the floor and Izzy could only stare at me in silent panic. I think it was a reaction to a change in her class, a new face who was significantly younger than her and who didn’t know the dance and who was looking to Izzy for guidance on the steps to take. And Izzy just couldn’t do that in the moment. I asked if it was her baldness in front of someone new, she shook her head. I wondered if someone said something upsetting, she shook her head. As I lead her off the dance floor, panic still in her eyes, I kept reminding her she was safe, she was loved, I was there and I would let nothing happen to her. Some days we put unknown pressures on our babies and some days it just doesn’t work for them. As I tried to softly encourage her to return to dance class, and then Mrs. Erin tried to kindly ask her to return, it was apparent in that moment that no, she could not do it for me or Erin or even herself. She couldn’t make herself do the one thing that always fixed moments like these. She couldn’t dance. I couldn’t make her do it, I couldn’t bribe her into doing it, She had to find the strength inside herself to get back out there and be ok with dancing tonight. And if she couldn’t find that strength, Mrs. Erin and I would have to be ok with that.

She did eventually step back out on the dance floor. She watched as Mrs. Erin taught some more of the dance and then she quietly started moving her feet. She brought herself through it, but it took everything she had to do it.

She finished class, with tap and was pretty much back to herself by the end. But the minute her butt hit the car seat, she pulled hair like a maniac for the next 25 minutes. Her anxiety was so high she pulled harder and faster in order to try and feel better. I wish I understood, instead I prayed.

Izzy started new medication last week to help her with her ADHD. It’s a medication that parents on my Parent Trich FB page have mentioned has made their children’s urges to pull worse, but I knew that didn’t necessarily mean Izzy would have the same experience. Day one ended in a email from Mrs. Clarey saying she had an awesome day. The weekend was smooth and easy. She went to the llama workshop and stayed there by herself without thinking twice about it. All great things. And she’s been pulling more. Damn.

After a particularly rough pulling “event” yesterday at school, Izzy and I chatted about the new medicine. She said that she fees more focused and attentive at school, but she thinks she is definitely pulling more. Her teacher agrees with that self-assessment. And then I asked her what’s more important to her…to be focused or to not pull. And her answer…”I want it all Mama. Why can’t I have both?” Yes, thats my million dollar question too sweet girl, why can’t you have it all…

I’ve gone to the same church my entire life…except for my Purdue and Miami years where I had to find something as close as possible. Pastor Doug came to our church when I was 15, and has been a part of nearly every important event in my life. He and Pastor Al lead a monthly Healing Service and tonight Izzy agreed to go. Izzy doesn’t like church. It’s too quiet. Too organized. Too boring. Too “abstract” for her. She’s so black and white; so literal that it’s hard for her to believe in God right now in this stage of her life. She can’t see Him, so how can she believe He’s real? It makes me sad and anxious…but I believe He will reveal Himself to her in time. I believe she will find Him in her and His own time.

So her going tonight to the healing service of her own accord was big. She laid in the pew and played her phone, but as she has shown us time and again, when it seems Izzy isn’t listening, she piped up to correct Pastor Doug during his sermon!

As a part of the healing service, people are encouraged to go to the communion rail for an anointing of oil and laying of hands in prayer for whatever healing they need. Izzy did this as well and although she was anxious for those she did not know, those not in her circle, to lay their hands on or near her, she did it. Pastor Doug presented her with a prayer shawl and matching hat made by one of the church ladies. Such a wonderful outreach by our church. Such a Blessed service. God was there, whether Izzy believes it or not He was there, laying hands on her. He was there laying hands on me along with those 10 Bethel members and my beautiful Mama who lifted us up in prayer for strength, peace, health, love. He was there in the people who talked with and shared love with Izzy after the service. He was there in Pastors Doug and Al. He is walking this path with Izzy…with me; and there are days, many many days when He is carrying us down the path. And even though it’s a path I don’t particularly want to be on, I will trust my God and follow where He leads. If you are looking for a new church home, join my family at Bethel…God is there waiting for you

Have you ever had someone enter your life and make such a difference that you just want to hug them and never let go? But you know you can’t, because you might just end up with a restraining order? Lol!! I’ve never really had that kind of passionate gratitude before Izzy. But when she was in 2nd and 3rd grades I had it for her teacher. Mrs. Sellers was exactly what Izzy and I needed in that period of life. She was loving and supportive and she saw Izzys needs and went above and beyond to meet those needs. I still feel such a debt of gratitude to her, when I see her I just want to hug her.

I had a brief encounter with passionate gratitude once at the drug store when the pharmacist filled Izzys first ADHD prescription post our family changing to Todd’s insurance. It cost only $10 instead of the $175 we’d become accustomed to. I literally hugged the poor man! I don’t go to that pharmacy anymore 😉

Currently I feel it for Counselor Brad with the amazing beard. God led us to him, I know it. I’ve never seen Izzy accept someone into her inner circle as quickly as she let him in. And he interacts and supports Izzy like no professional to date. He allows her to be herself, he listens to her stories, let’s her be silly, let’s her be cranky and he works within that sphere. He sees her at her rawest, he meets her there and works within her limits to help her. Some days I want to reach out to him to let him know how much he is appreciated, but I don’t want him to write “crazy mom” on her file! So I just sit here quietly as they work and revel in the beauty of what God placed in our lives through Counselor Brad with the amazing beard.