Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

I may be dramatic. May be. I don’t know. I have heard it all my life, Kim you are so dramatic. I remember my mom mocking my sick stomach walk to my aunt when I was little. I remember falling for a laugh. I remember thinking I would surly die when I had strep throat. So yeah, I may be a little dramatic. But it is a part of me. It’s like to know me is to love me and to love me is to know I may tend to make situations a little bit “bigger” than they truly are.

But when I tell this story, believe it. It is true.

Back story, I am taking Lily to Colorado in 2 weeks. She has an appointment at our first CDKL5 clinic! I am so excited to take her. There is a lot going on with a soon to be 11 year old girl. Add CDKL5 disorder to it and mama might be loosing it. Lots of growth, lots of hormones, lots of boobies?! So with all this nonsense comes more seizures that are crushing us. Ruining her days and crushing my heart. It is hot. Like hot as hell. And I am thinking that is a true story. Hot makes her seizures worse too. It is just a huge cluster of crappy right now and I don’t like it. I miss my baby Lily, my chubby preschooler, Lily. It is really hard watching her grow into a beautiful young lady and see all that beauty just wreak havoc on her. It is unfair. But I digress, this clinic appointment is important because although I do love our Doctors here, they don’t work together for Lily. So if one rx us hormone therapy I can’t truly trust that without knowing how the others feel about it. We are team”less”, we tried with a Pali team, but after one appointment I have never felt the “team love”, but this appointment will change all that. We are seeing several Doctors all familiar with Rett and CDKL5 and we can see a bigger picture together. So this appointment is important. Flying has become more of a problem for Lily and myself than a solution so we are driving. And since it is summer we are taking our time. It is Lily, Andi Jane and I on a road trip. I really look forward to it and we have been counting the days for this. But for this clinic appointment I have been needing to get lots of records and one silly ECG because her last one was 2 years ago and quite honestly her last one was abnormal so I really wanted her to get this test. I won’t even get into the details of the hoops and obstacles I, Lily’s MOM, had to do to get her records. HIPPA I am sure has good intentions, but holy smokes. Anyway after starting this adventure months ago, yesterday was the day I finally got every record I needed. But that ECG. Oh that sneaky ECG.

I call Lily’s pediatrician to send us in the right direction and she says check with the children’s hospital. I do and when I call a closer branch to our home of PCH they say they can’t do it. Then we go there for a clinic appointment and I ask again and they said they can. They said send us the orders. I get Colorado to send them. I tell the lady on the phone we need an EKG, but then when she gets the order she calls me and says “it says ECG, you said EKG” I said “they are the same thing” she doesn’t believe me. Tells me it is an insurance thing and that she would call me back. She calls me back and schedules for the next day. This was last Thursday and they call to schedule for 8 am on Friday. Then they call to say we need to change it to 9:30 am which changes my whole day because now Lily will need to go to work with me and I will be late. But we need the test. We go. We get there. We get taken right back and the MA looks at Lily and says “if she is too wiggly we can’t do this” immediately negative. I say, “well she has had several and I am sure she will be fine.” Then we lay Lily down, she makes me take off her pants and pulls her shirt up, it’s chilly in there and Lily is indeed wiggly. The MA is obviously annoyed, keeps saying “see” when Lily moves and a wire come off. I am still positive and being calming with Lily. I sing to her one song and the MA says “look at this, this isn’t going to work” and “I don’t even know why they want this” like it was any of her business while pointing to the screen of a mess of a squiggly lines. So I am starting to wear down. My positive energy is fading fast and then when the MA says “I don’t have time for her to calm down” well that was when my positive energy had flat lined and I was pissed. She didn’t give us enough time. She didn’t problem solve with us. She was negative, rude and I had it. I took off the probes and put Lily’s clothes on. I really don’t remember that much of this because I was past the point of return. Tears were welling up, my nose was running and I knew if I said one word I would have bubbled over like champagne on New Years Eve. I had to get out of there as fast as I could. The MA did apologize. She also wished us a good day. And I left that place as fast as I could and made it to our van before I exploded. The tears were flowing fast and my heart was racing. I was exhausted, sad, angry and so incredibly upset at the disrespect for Lily that I just had a melt down of gigantic proportions that I had no control over. We needed this test! This clinic is important to us. Lily’s heart is very important to us. I have a fundraiser coming up. I have more appointments and specialists and therapist appointments that I couldn’t keep them straight. I was showing up at home to people waiting for me. Standing others up. Waiting for others which I had the times wrong. I was overwhelmed, over cooked and past a point of no return.

I got to work looking like I had just attended a funeral. In street clothes. I tried to tell them what happened and lost it all over again. Let me also just say though, I don’t cry. In public. I don’t cry. I will have a lump in my throat so large that I feel like I swallowed a stone, but I don’t cry. So when I am crying everyone is like oh crap. I got a free lunch that day. That was nice.

Andrew was on the road with the other kids heading to South Dakota and I erupted on him. He sounded like he was going to turn around from Colorado to yell at this lady. I told him I was fine. I was just at my bubbling point.

And still almost a week later I really couldn’t tell you why my reaction to this situation was so strong. It wasn’t the first time I left a Dr. in tears. Probably won’t be the last either, but this was different. I felt heartbroken. Maybe it was the pressure I put on this test? Maybe it was the attitude of this lady. But I come across a-holes often, but maybe because she was a MA at a CHILDREN’s HOSPITAL? I don’t know. All I know was I was heart broken and beyond devastated.

So I pray. I ask my friends to pray. And I eat my free lunch. Then I pick up that phone and start calling around and find out that the main campus of PCH’s heart clinic has open ECG’s all day. No appointment necessary. Man if the EV just said call here …. but they didn’t. I call the EV and tell them since your MA was so impatient with my daughter I now need to bring her out again in the heat on Monday and you need to send the orders to this number. “OK” she replies, “do you need to know our name?” “No I know who you are” … glad we left a lasting impression. So Monday we brave the traffic and the heat and get to the hospital to where we are greeted warmly. We get signed in. They didn’t get the fax of course so I have to call again. And amazingly the orders were sent in an instant. Wonder what I said that time? And back we go with Rene. Who says let’s keep her in her chair. Let’s not expose her boobs. She can keep her shorts on. And she gets the readings in a matter of minutes. Lily is calm. The gal is sweet. Has a niece with disabilities and couldn’t believe the treatment we got at the other place. I couldn’t either.

And the test was done. I thought man what if I just called them the first time. Screw the fact that the EV clinic is so much closer to home. My life isn’t convenient. Nothing about it is convenient. So for me to think that would have been easy to go to the clinic by home and get this test done and it would be easy, then I am nuts.
But we are done. We have a long weekend with out much on the schedule but planning this fundraiser and watch a firework or two. And that is it. We are ready for clinic. I appreciate myself more. Ha. Just kidding. That was a weird thing to say. But all this made me think, who would I be if I weren’t Lily’s mom?
Not Andrew’s wife, not Andi and Oliver’s mom, not Ted and Nancy’s daughter. I am first Lily’s mom. It truly is everything I do in my life. I work, but it is all around her schedule. If I wasn’t Lily’s mom I honest to God have no idea who I would be.

I often joke that Lily needs a personal assistant. Besides me. But that is who I am. Her PA, her advocate. Her supporter. Her biggest fan. I am her mom and everything I do is for her. I give it all to the other kids too, but their care doesn’t leave me in tears on a weekly basis. I give my all to a little girl who is deserving of my all. I am also a wife to a man who deserves it all. And two precious little souls that need all of me as well. I think when it gets down to it, I break because I have bent as far as I can. But at least when I break, I some how mend back up and get back up. It is a the cycle of this life. My life. The life I love. But I tell you what, after this fundraiser in one week from today I am going to have me a break. A long break. Our trip to Colorado although it is for an appointment for Lily, it is also going to be a time for us girls to drive with the windows down, sing our hearts out and relax. Relax in one of my favorite states. See some family. See the beauty John Denver was always bragging about. One more week of hard pushing and then this balloon will pop. Til it needs to blown up again.

I apologize for the lack of thought that went into this post. And the lack of proof reading… I predict I will hit publish instead of going back. And I hope no one is reading this as their first time to my blog. Sorry if you are. Go back a few posts. I usually try harder. This was just verbal vomit I do from time to time.

OHHHHHHHHHHHHHH and I more awesome thing to look forward to ! Our family won the “lottery”! Well the Hope Kids Arizona lottery! We were chosen to spend a weekend up north at Whispering Hope Ranch in August with other Hope Kids family. I can’t tell you what this means to us to get this opportunity! I think we will be counting the days!

4 thoughts on “Bend til I break

  1. Lisa Gleeson says:

    Kim, I grieve for you and then I smile for you. You are such a mixture of heartbreak and simultaneous hope! I remember reading your posts back on the MGH neuro boards when Lily was a little girl and thinking what a beautiful child she was and what a beautiful name she has.Prayers and good thoughts to you and your family. Hugs and kisses for Lily.Lisa

  2. charity says:

    hugs i know what its like to need a test done but cant get it done. iv left dr offices many of times crying or on the verge of crying because they either wont listen to me or we cant get the testing done that needs to be done.

  3. Reagan Leigh says:

    I can TOTALLY relate to everything you're saying! How NOTHING is convenient, nothing is ever easy! How my entire life revolves around Reagan and Reagan's schedule. If Reagan is happy and doing well, all is right with my world! Totally get it. We just want good days for our girls!! Is that too much to ask? Days where they're not crying in pain ( or seizing) all day…so hard.

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