I'm not just mad, I'M PISSED OFF!!!

I am fed up with DHHS, I'm fed up with nursing companies, I'm fed up with private companies that have stopped offering pediatric services because of lack of FUNDING (yea, including MOBIUS, down the street)! I'm fed up with being told that there isn't a soul to service my child within any agency in Maine. I'm sick of hearing NO!

We have had Mainecare since April of 2014. Sequel Care of Maine and Maxim health have been looking for a nurse for Izabelle since then. Not only do they publish our need within their company, but they also send it out to every single nursing company within the state.

I called Kristine Bennett from the Epilepsy Foundation of New England two days ago to see if she had any other ideas for in home care. She called the state on my behalf...

I heard from them today. It is clear that the DHHS and private companies are NOT on the same page. Every piece of info the state worker gave me on the phone was either conflicting with what I already knew or related to something I have done over and over again.

What am I supposed to do?

Knock down the door of every freaking nursing company in Maine?

What's the point, when they have already gotten a message that we have needed someone since last year and not sent anyone our way? PLUS... I found out today that the state doesn't even recommend leaving pediatric patients alone with RN's... What the hell!!!

It also turns out that Izabelle's most recent medical eval is 6 months old. She was doing better six months ago... now were are up to 6-7 GRAND MALS a week... her condition has worsened.  I have a letter from her neuro to prove it but... agencies won't re-evaluate Izabelle unless they have a nurse waiting to take our case. Kristine Bennett from the Epilepsy Foundation of New England said herself that there is a NURSING SHORTAGE in Maine.

The most frustrating thing is that I know first hand how much our state does for disabled adults...

shame on them for not even doing half of it for children!

It's just sad...

Of course I thought we would have a 'normal' morning: I'd get ready to go to work, get Izabelle ready for school, bring her to her aunts for before care and get to work on time... 

Umm...Nope.

Yea, RIGHT!!! 

This time I got Izabelle dressed for school and just as I was going to instruct her to put her backpack on... 

BAM!!! Grand Mal seizure! 

I've had so much pressure recently at work regarding my attendance... I've used all my sick time and from now on, time off is unpaid. 

Dale and I worked out a system. He will work part-time until the summer so he can be present most days of the work week so I can be present even if there is seizure activity. Now I know I will always make it through Monday, Thursday and Friday at work. Tuesdays and Wednesdays we are both working.

Because of all this pressure to be at work on time and keep good attendance...I had to leave Izabelle's side during her postictal period this time.

I literally left her laying passed out cold on the floor on top of my school bags: 

I felt awful. Like a traitor. 

All I did was get my coat on, grab meds and finish packing my school bag...but it felt unnatural and wrong not to be able to wait for my child to come back to me from the unknown. 

I like to hold her and cradle her like a tiny babe when she's recovering from a seizure. 

I hold her... hold her until she can mutter just one word to let me know:

she's back. 

But today... I didn't have that luxury.

I woke my daughter as much as possible, out of her deep 'sleep' and somehow... Was able to get my kid downstairs and out the door. 

She could barely stand. 

I saw my neighbor as I used a safety grip under Izabelle's arms to guide her to the car... 

It was just all wrong! 

Every bit of this feels like I'm going against my maternal instincts.

I cried on and off throughout the day...

I've realized that I'm afraid...

That each seizure takes a little bit of my daughter away...

And I may never get who 

she 

once

was 

back.

 

Reunited

Part Two:

First off, I want to thank my friends for being the kind of people who are supportive and respectful of my personal journey NO MATTER WHAT! 

As some of you read in part one... Step mom is out of the picture but not just for me.

My ex husbands story is his to tell. This is mine.

I got divorced in 2011 after an eight year relationship with my daughter's father. I did what I needed to do at the time to take care of myself and Izabelle in the best way I knew how. No matter what I did I never fell out of love. Dale Hamlin Jr. Is and will always be the love of my life. 

We have decided to make our relationship work, not only for ourselves but for Izabelle. A child like ours needs two parents to raise and fight for her. I need an ally, someone to lean on, someone to soothe me in the middle of the night after scary seizures... Who better, then my daughters father? 

The amazing thing is... We have both grown so much over the past few years... In the ways we didn't have the capacity to while together. 

This has always been my dream... I'm so much stronger and wiser now... And so is he. It's meant to be. Destiny. I even get a beautiful boy named Leaf to watch grow. 

Cheers to second chances and cheers to love. Xo

New beginnings: Part One

PART 1: Some of you may wonder what happened to this beautiful scene, because there has been some severing of ties as of late, and some huge new developments. 

In May, I took my ex husband to court bc he and his new wife were not working with me up to the degree Izabelle needed. We went to court and I received temporary full custody just before Izabelle's admission to Boston children's hospital to start the ketogenic diet. Dale and his then wife Miri, came to Boston for a couple days. I was terrified of Miri. I had built her up to be this huge scary force (maybe I should have stuck with that). I was the one who stayed w Izzy in the hospital the full six days. Izabelle struggled with taking her meds. They had went from a yummy sweet grape suspension to a pill crushed in applesauce, water or yogurt at the time. I had no clue at the time how awful 1/4 tsp of baking soda tasted and the nurses began to mix her sodium bicarbonate (baking soda) in her meds,therefore beginning a huge aversion to taking medicine. For days in the hospital, nurses had to hold Izabelle down and force her to take her meds. Once home, Izabelle fought me the first night in a heated anxiety provoked fury. I called in all my friends for days... But quickly realized that I couldn't handle her on the ketogenic diet on my own. I had already applied for a in home nurse but no one was available. I was broken down, miserable and feeling like a failure of a mother. I was so scared for Izabelle's life. I called her Dad one night when I was at my last rope. Between the two of us, we were able to coax izzy into taking her medicine. Eventually, I was so worn out that I broke down emotionally. I handed Izabelle over to her dad and her then step mom for a whole week. Somehow, Miri and Dale got Izabelle to take her meds and I immediately felt like an even worse parent. At the time, I had been w Izabelle for 70-80% of the time. I was her constant, although I couldn't understand why they could 'force' her to take her meds and I couldn't. It just wasn't in me. I could sense Izabelles distress and it killed me to force her into something she didn't want to do. That was how my relationship w Miri started. She had me in a low place. I felt bad about myself as a mom and she seemed to thrive on that. I gave Miri the benefit of the doubt, a good ole try. I was very cautious. Immediately, she began to open up to me and I listened. Whenever we went to doctors visits she dominated the conversation and made herself out to be the savior. She even had me believing I wasn't good at disciplining my child and that's why Izabelle wouldn't take her meds after being discharged from the hospital! She even had the doctors believing this! The behaviorist and the neuro in Boston! I was so burnt out from pushing for Izabelle's needs that I almost gave up. We did the ketogenic diet for six months. I started to realize that it wasn't working in October 2014. I told Miri and Dale that I thought it was making matters worse. For a whole day, Miri bullied me via text and email into keeping izzy on the diet. Not because it was good for izzy but bc Miri was so good at it and was hell bent on continuing the prison we were all living in. What she said made me feel like I was giving up on my child. She was so pushy, hurtful and had my former husband believing she was right. In December, we went to the neuro for a EEG and follow up. He said that the diet didn't work and that her seizures were worsening. 

I was right. 

Six months of hell ended around Christmas while Miri took it on herself to wean the diet over the holiday break. 

Our next route was medical merhiuana. The doctor gave us a perscrip on the spot. While I was busy at work the week after, Miri busily called around for dispensaries and asked questions. We were all so busy, so the info didn't get transferred immediately. Miri went to Georgia for 10 days. While she was gone, Izzys seizures got worse to the point of three grand mals a night. I think I developed PTSD at this point from hearing her scream in her sleep (I haven't told everyone, but I had to go to my doctor bc I literally stopped sleeping myself). I texted Izzys dad and got permission to go to the dispensorary to get our first round of Mj. I didn't have time to text Miri and I guess neither did Dale. By the time I was at the dispensorary, Miri had found out what I was up to and was furious. She texted me relentlessly, threw accusations and put downs via text, literally while I was trying to get medicine to help my daughter! I told her it wasn't good timing and to stop (I never lashed back). She wouldn't stop. I had to block her phone calls, texts... And later my former husband's email that she used to bombard me with more tongue lashings. I also learned that when she is hurt (even if the actions of others were unintentional) that she lashes out.. I had to cut her out of my life and raise my daughter with her Dad again. She had overstepped too many times.  

I am so happy to be raising my daughter with her father again...