Its at the Ronald McDonald House and my body feels a sense of calm in the garden. It is tended to by a whole host of master gardeners but the leader of the gardeners is a couple that is very dear to our hearts.
One night shortly after we came home from NIH Jilli was having a rough night... she was making choices that was very out of character for her and we were trying to figure out how to best help her. She had just gone through something that was very traumatic to her so she was expressing that the best way she knew how however we were trying to help guide her to make choices that were not hurtful. So I brought her upstairs, bought an audio book of the Secret Garden and tucked her into bed. She found it to be very relaxing and calming.
The next time we were at RMH I had Jillian ask Ann the gardener about why the garden at RMH has its name and they talked about the book The Secret Garden. Ann even showed Jilli where the secret key is to the garden
I had been looking for the movie to show Jilli but was struggling finding it. I remembered watching it at my grandparents when I was a little girl (the 1993 version) but my parents never owned it. Friday night we ran to the mall near RNH to look for some pants for Lydia and found the movie at Barns and Noble.
Yesterday we have the hospital run/walk and today the kids and I were just exhausted sill. My legs are having more issues the older I get... I walked part of the walk yesterday with my hip not working properly. So today we needed a down day so Jilli and I curled up to watch the movie.
I don't remember ever reading the book so my main exposure to the story is the movie and a few shorted children's stories of it.
As I watched the movie my head started to fill with thoughts about several things going on in my life right now. I am one of those people who is always looking for connections in things.
Now I read a synopsis of the book this afternoon and it looks like the book and the movie stray from each other... this will be about the movie...
In the movie Colin thinks he is sick because everyone treats him like he is sick. It talks about how his birth was rough and he was sickly so they boarded up his windows and barely allow him out of bed. They do this because the father could not bare for him to die after Colin's mother died. The head servant of the house tends to his cares and doing medical treatments on him. The father is basically absent for his life and has been for his whole 10 years. The servant is doing what she thinks is best in order to keep him alive. Colin doesn't think he is going to live very long and is sure he can not walk.
As the movie plays out the garden is found by Mary and she brings Colin there without Mrs. Medlock, the head servant, knowing.
Mrs. Medlock had all of the best intentions. She was trying to keep a kid alive for a unstable master. I understand why she did what she did even if we can all agree it was not the right way to do it.
We currently have a doctor who thinks I am Mrs. Medlock. He has accused me of making all of the choices for the girls out of fear. He even went as far this week to say that the girls have low muscle tone because I don't have them doing anything and through us homeschooling in with that. It was a yucky conversation had while Lydia was in the hospital and I was functioning on 4 hours of sleep. But my last three conversations with him have been just like this. To say I am hurt is putting it lightly.
I know the us not doing anything part is not true... read this blog for a short time and you will see all of the things that we do. My kids might be homeschooled but they are not stuck in a room like Colin. There are times we are able to be more active and do more because my kids are not in school. I know what he said is not true... but that does not stop him from thinking it of me...
And if it was just some random person in public who thought that it would not matter... this is a person with power and someone who takes their personal opinions and uses them as weapons against me. Opinions are one thing... I am sure I have a different opinion on something then the readers of this blog... that is ok... using those opinions as a weapon as a person of authority is not.
I will admit... there are times I have judged other parents about what things there kids were or were not involved in and what they were or where not doing. I can be plenty opinionated and sometimes that is not fair to others... I also really try hard to not let my opinions come flying out like they use to and as I have gotten older I have become better at keeping some to myself... and often the things that I am willing to talk about are not the opinions that deeply matter anyway... often big things I keep to myself... even when thats not always best. But I also know that me having judgmental thoughts are not kind.
Sure have there been times I have been like Mrs. Medlock... I am sure there have been. In this journey I have seen a lot. I have been through some rough ups and downs. I am also a person though who thinks about her choices to an extensive length. I debate with myself... not always because I doubt myself but because I want to strive to make the best choices. I am not a person who makes up my mind on a whim and sticks with it. I don't make my choices out of fear but try instead of have a lot of thought and wisdom to choices. But there is a difference between disagreeing with the choice I make and thinking that I don't know how to make a choice that is not fueled by fear.
But as my kids have grown I have given them the reigns more. Now they are 6 and 3... they only get so much of the reigns... but I learned a long time ago that this is their journey that we are all on together. There are times I am going to make the wrong call on something (botox for Jilli in her pylorix was not a good choice! a choice our medical team asked to try and we agreed with but I wish we had not!) and there are times I am going to be cautious. There are times I am not going to be cautious enough. I am not a perfect human! I try hard! We try often to challenge the girls in different ways but we also have become good at reading their bodies and what they need. That doesn't mean we give up and lay down... we do a crap ton of stuff... some days we over do... more then 24 hours later and our bodies still don't feel great from the walk... but we keep pushing forward and trying. There are so many ways we could just give up. Right now most days after Jilli gets her morning meds she ends up laying in the fetal position for 10min-50min which makes school tricky... but she needs her meds so we figure out ways to make things work even if it is not easy.
But here is the thing....
I don't know how to make him not think that I am Mrs. Medlock.
I've tried. I wrote him a 5 page letter back in July and it didn't change anything. Other medical professionals have tried to talk to him and he either wont or the report that I get back from others is that it didn't go well.
But here is the bigger problem... he isn't the only doctor who thinks like this. I have multiple friends going through this right now. Friends who all work hard to take care of their kids. Competent parents who strive to best take care of their children... and the tone in the medical community over the last year or so has turned for many doctors back into not believing moms, this is not just my issue or an issue with this doctor. I know there have been several docudramas that have come out about crazy medical moms and yes that happening to kids is not alright... but there are plenty of us moms who do know what we are talking about with kids with real concerns... and it is causing us to become scared to go to the medical community with real issues about our kids because we are just seen as crazy moms... but you are dammed if you do and dammed if you don't.
I don't know that I am ever going to change this doctor's opinion of me which is interfering with my kids medically and that really sucks.
But I would love to change this line of thinking... not just for me but for the other moms out there in shoes like mine right now. We need the medical community to partner with us... and for a long time I felt like that with the girls... there were doctors I disagreed with... but I most frequently felt like a partner... I don't feel that right now... heck in the last year I have been told that I look too pulled together therefor I must not care for my kids... and I have been told that I am too much of a a scared mess to be able to make medical choices for my kids... all while being the same me... I can't please everyone... and pleasing them is not the goal... taking care of my kids is... but I would like to do that as a team and not be "that mom" but I don't feel respected right now and it is hard to be a team without respect.
I will say though that this is not with all of our doctors... we have several good doctors and therapists on our team that are amazing. I am so grateful for them and I have been so grateful for the truth they have been able to speak into this subject. The crappy thing that this one doctor is making swings that them too, which really sucks because it is not professional and my heart hurts for them too in all of this. But I am so thankful for the support we have gotten from others... from the friends that remind me that we asked for a medical break so we could do fun things therefor we spent a lot of the summer doing play dates... to other professionals who remind me that they have worked with my kids for years and remind me of all they have seen and why we made these choices together.
But I am tired of being seen by this one dr (and NIH) as the crazy mom... this is why women especially are delayed in getting their healthcare needs met... because they are seen as crazy... which often is not a fair judgement. Like we had a situation last week that should not have gone down the way it did and when I expressed to that doctor that I was upset about it he said he was too because he had talked to a different doctor and advocated for it to go differently... but when I said it should not have happened either way he didn't agree... he said it would have been ok if he had not spoken to the other doctor... but in reality it was never ok, no parent should have been talked to that way... all parents should be talked to with respect... it should not just be a problem when it doesn't happen when a male doctor talks to them before the mom.
And for a long time I didn't want to talk about this... because I was worried others would judge me... that people who have known me for years wouldn't believe me because of a medical professional... but its time to speak my truth... this is not ok and moms should not have to feel shame around this... especially not moms who are working really hard for their medically complex kids. We need the stigma to end... can you help?
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