Day Made

I've posted time after time about struggling. Tonight, the house was a wreck, we were running around like usual. Homework, chores, baths, cleaning, laundry, lunches, reading, bed. We try really hard to make bedtime a priority. Each kid usually gets a chapter read to them (In Bella's case) or a book (for the littler guys). I say usually because sometimes it just doesn't happen.

I climbed in bed with Bella to read to her. I finished her chapter and we were talking. We were laughing and snuggling. She said "You are the best mom ever". I told her how much that meant to me and how that was the very best part of my day. I told her how I really appreciated her sharing that she felt that way with me. "You really are the best mom ever". My heart was full. My mind was calm.

These are always the moments that I'll never regret spending. In the race of madness, it's just me and her... or me and one of the boys. It's one on one time that's so precious, so rare and so needed. These little reading moments add up. Tonight they added up to a really big moment for me.

There are times, so, so many times, that I wonder if I'm giving my kids the best I can. The balance eludes me most days... almost all days. Tonight, the balance was tough, as usual. It was a day that I wanted to throw in the towel and crawl in the bed. I didn't. I finished strong... stronger than I started. Thanks to my girl for being my bucket filler. For making me realize that even though sometimes I fail, I get back up stronger, I try harder. I'm glad she's mine. I'm glad I'm hers.

Our first meeting post 504

The PE teacher reached out to me for a meeting related to Bella's 504 plan. I met with two of the PE teachers to discuss fitness testing that would be coming up and football. Okay, head injury central! Hopefully she doesn't like football :) That's the nurse mom in me talking. Back to the story, so we set up a before school meeting to talk about their ideas.

When we met, they were prepared with the items that would be used for fitness testing and what they thought Bella would need. They didn't forsee any concerns or issues with her doing well, but they wanted to be sure that they were doing what was best for her. I'm glad that they were really putting some thought into her limb difference and what that meant in PE for her.

Needless to say, we both agreed that she should wear her prosthetic for any weight bearing activities on her upper limbs. Push ups was one of the things on the fitness testing. The prosthetic allows her to keep her wrist joint safe. I fear that while she could do the pushup without it, it could cause injury to her wrist joint. She does have movement in her left wrist and we need to continue to protect that. The other item was curl ups (like sit ups but coming up farther). They showed me what Bella would need to do in order to be successful. We agreed that wearing the prosthetic would put some weight on her left side to keep her spine straight during the curl up.

It was a short, sweet meeting. In and out in about 30 minutes. Those are my perfect meetings, a good agenda that is stuck to and people who are focused!

I must say, while I was excited about the meeting, it bummed me out a little that we had to have a 504 in place for more action to be taken. This is precisely why I advocated for Bella to have a 504. Having it in writing somehow makes it happen, at least for us. Does everyone with a limb difference need a 504? No... I mean it's taken us until 3rd grade to "need" one... though in the back of my mind, I can't help but wonder if having one last year would have protected her from her neck/head injury.

Be a bucket filler

Tonight, Grayson and I were snuggling in bed talking about his day. This kid kills me sometimes. Tonight was one of those nights. I got in his bed and as I was getting settled he said "How was your day mom?" He's genuinely concerned about how my day went, he listens and asks questions. It's the sweetest. It reminds me to sit, to be still and to really be in the moment with him. He's been melting my heart into a puddle since he was born with his big eyes starring up at me.

I was telling him a story about how a patient told one of my student's that she was glad she took care of her. I told him how it made me so happy because it made my student know how appreciated she was, it made her so happy. He said "yeah that kid was filling her bucket".

Confused I said "what?"

"Mom, she's a bucket filler, the patient because she filled your student's bucket with happiness and made her feel good".

"Oh yeah, she was totally a bucket filler and my student's bucket was getting filled up!"

He went on to talk about how you can fill people's bucket. He told me how his teacher fills his bucket, how friend's fill his bucket and how he fills up people's bucket. It was the sweetest, most genuine conversation with my super sweet hearted boy.

I asked "How do I fill your bucket up?"

"Mom you just love me, that's all!" with the most sincere smile on his face.

That's right my sweet boy, I do love you. I just love you so... someday you'll fully understand the depth of my love.

On grief and love

This week, several of my friends have been impacted by the loss of someone they love. It's heartbreaking to me to watch their lives shatter before their eyes and the changes that happen due to the loss of one person.

My best friend told me some expert advice when my dad died. She said something along these lines...

It never gets easier, the pain never goes away. We just learn to deal with it differently. There are days you won't cry at all then there will be a whole week when you just break down. Sometimes it hits you at the most random times or in the most random places. Your heart feels heavy. Your life will never be the same. It will go on, in a way that's different than you know.


She was right. Six and a half years later I still feel the same way.

She was one of the only people that didn't say "God has a plan" or "God needed him more". When people said that, I knew they were trying to console me. Instead there was a fire in my soul that it added gasoline to. The fire burned bigger and brighter each time. I hated God in that moment. God was the last person I wanted to hear about. My heart was screaming out that there was no way that anyone needed him more than I did.

(Making memories with my babies and my husband)

There was no doubt in my heart that my babies needed to meet the man that raised me, they needed to know him not from me but from him. My babies needed to see his laughter and feel his arms wrapped tightly around them. They needed to see the way that he loved his children and that he loved his grandchildren. They needed to watch him face life fearlessly and live each moment as if it might be his last. If you knew him, you know that he did that.

(Pancakes for my kids, my mom did this for us when we were little and I remember it to this day. Re-creating those memories with my babies!)

What I've learned from all of this, share the love. Whether it's picking up the phone and calling an old friend or sending them a Facebook message. Spend time with the people you love, forget the gifts, build the memories. I can tell you there's not one memory I have with my dad that I regret. Do I have things of his that I remember him by? Sure I do. The things that stick out are the memories we made, not the things I can hold in my hands. Hold those babies tighter. Take that trip, who cares about the couch that could be replaced, the couch can wait, the trip can't. Read that extra book. Go on that extra long bike ride. Don't wake up tomorrow regretting something you could've said but didn't. Make today count.

"Put your phone down and love me!"

This little guy says that frequently. He's with me at more often then not. He's been going to my work's childcare, he's with me on the days I don't have work obligations, we spend hours on end together. He gets a LOT of one of one attention. He needs a LOT of one on one attention and he has no problem letting me know. "Put your phone down and love me" and then up on my lap he climbs. "Close your computer and love me", "stop doing laundry and love me"

Here's the thing, there's times when I need to finish my email, there's times that phone call can't wait... but in the end, he'll never be this age again. I'll never regret closing my computer to love him. So I do just that. I close that computer, I turn off the phone, I stop the laundry because he needs my love and it can't wait.

This is the last year that I get to have my baby home. This is the only time in my life that I'll have one baby at home for this long without a sibling. I get to really enjoy him, embrace him, figure out his unique personality.

Anyone that knows me close, knows the struggles I've had with this strong willed, creative, stubborn, curious, adventurous little spirit. The last 9-12 months were the hardest of motherhood that I've endured yet. He challenged me. He pushed me to my breaking point nearly every.single.damn.day. I cried. Was I doing it right? How could I parent him? How was he SO different from his siblings? What had I done? How could I help him? How could I be a better mother? How could I be a better mother to them all? It was a struggle, a constant freaking struggle.

I did a lot of things different. I talked to every mother I knew. I talked to mothers of all ages. I felt like I was missing his boat time and time again. We took love and logic courses and I still felt like I was failing. I read books and books about parenting. Then we started a special kind of therapy called PCIT.

PCIT is parent child interaction therapy. Read more about it here. I was so skeptical. Even halfway through, I thought it was stupid and wondered how it would ever help. I emailed a parent that had completed the therapy and asked a million questions. Then, something clicked. Things started working at home. Like crazy working, in a good crazy way. Our relationship started working in a way that I thought was not possible. He was listening because I was giving better directions. The therapy was working for us.

We graduated the therapy well over a month ago. I was warned by our therapist that this might be a "honeymoon" phase and that the part that was working might stop but I needed to remain consistent. Well the honeymoon phase has continued and we're still going strong. I'm beyond thrilled for how this has helped us.

So my sweet boy that loves me more than anything. You remind me daily how much you love me. I will always "put down my phone and love" YOU!

504 complete!

Just like that our 504 is complete! It was way more painless than it was initially made out to be. I think because I reminded the school that I have the ability to be at school for 3 days a week until the 504 took effect. That might have helped... maybe not... but it sure seemed like it was quick.

Our 504 is very basic at this point. My goals were to keep her safe and to keep her RIGHT hand protected. It is the hand that she will use for 100% of things throughout life, so minimizing discomfort or distress on her right hand is essential. So here are some of the keys of our "accommodations" so far:

• Consultation between the PE teacher, the district PT and myself quarterly (this allows us all to think of body mechanics, safety and ideas to help her)
• Allow an opportunity of pre-teaching of PE if she were to need something different (meaning she could try the adaptations without the stress of her peers observing for the first time)
• Close proximity to PE teacher during activities that require strength and balance of upper extremities (this helps keep her safe and helps the teacher be more aware of her)
• Option of technology (there are tons of options for voice to text, word prediction, see saw, etc that will help her when it comes to writing for lengths of time)
• Copies of board work (so when a teacher writes a math problem on the board, instead of Bella having to write it then do the problem, she will be given a photo copy of the board work, so less writing for her)
• Allow more time for activities of daily living (buttoning, zippering, changing to outdoor gear in the winter) 

Understand that a 504 is protected through FERPA so her school can't go talking to anyone about this. Why am I sharing it here? Because when I was trying to find out info as a mom of a child with a limb difference, my search came up pretty empty. It was frustrating. I want other parents to not have the frustrations that I felt.

Don't these seem basic? To me, yes, but to others, not so much. All of these things come back to safety and limiting fatigue on her right hand. After talking to our friends at Camp No Limits this passed summer, we realized that we could do more to help Bella be successful in school and not have struggles. I'm thankful for a certain mama for encouraging me and almost pushing me to help my child! It takes an army to raise kids and I'm happy to have so many friends helping!

I actually have a meeting with her PE teachers tomorrow morning to discuss football. Her PE teacher requested that I meet with them so we could do some brainstorming together. Love this collaboration! I think it helps us all be on board for getting Bella what she needs to be successful and not have struggles due to her limb difference.

Is this all inclusive? No. As the years progress, her needs will change. We'll meet yearly to discuss her previous 504 and make changes. I can also request to meet to make changes sooner if needed. Likewise, her school/teachers could ask to meet with me for changes. This helps to be sure we are all on the same page for Bella. We will all learn as we go!