Navigating a Broken System

Navigating a Broken System

Today I have had it. I am done…. but can I really be done? I am so tiered of navigating the broken system of services. Don’t get me wrong, I am grateful for many of the benefits and services Lyra has access to through Medicaid. Lyra qualifies for Medicaid through a waiver program. This means that they waive the income requirement to qualify. It is solely based on her disabilities. Medicaid covers costs related to Lyra’s medical care that our primary insurance does not (such as co-pays, deductibles, etc). Also, I am a paid caregiver for Lyra through Medicaid. I have my Certified Nursing Assistant (CNA) license, and I am held to the same standard as any other CNA in the state. The difference is, my only patient is Lyra. 

This sounds amazing, right? It is…. but there are a lot of other services Lyra qualifies for that Medicaid has made it nearly impossible to access. The first is respite care. Respite care is critical for families like ours. We need breaks. We need time to rest and regroup. Finding quality child care for any child is challenging. Finding it for a special needs child, especially one that requires medical intervention, is impossible. In the 5 years we have had access to this benefit, we have successfully only hired 3 people: My mother, a college student, and a high school senior. The college student lasted for about 18 months before life took her other directions. The high school senior lasted less than 6 months. I have tried to find more people, but they just don’t want to jump through the hoops that Medicaid makes them jump through. Plus, the rate that Medicaid pays less than our local fast food places. I am not the only one who struggles with this. It is a constant discussion topic in support groups.

What was the resource I am trying to get access to that sent me over the edge today? Oh, that would be home modifications. You see, people with special needs often need their homes modified to give them access to place, or to keep safe. This can be things like ramps in entry ways, stair lifts, and zero entry showers. It can also look like the custom wood gates I had built on our stairs so that I can contain Lyra. Right now, we need to remodel our kitchen to restrict her access. We have a temporary solution right now, but it’s not great and it won’t last as she gets older. To apply for the money allocated to Lyra for home modifications through Medicaid, there are a number of hoops I have to jump through. There is the 19 page document I had to go through and try to find all the sections that I needed to fill out. I then have to get it reviewed by Lyra’s occupational therapist and case manager before it is even submitted to Medicaid.

Also, I need to get quotes from Medicaid approved contractors. This is the part that broke me today. Now, I have worked with an approved contractor in the past, but Medicaid recently changed the hoops they have to jump through, and he is not longer approved. So, Lyra’s case manager sent me a list of 12 contractors for the whole state. So far, I’ve gotten a hold of 2 on the list, one of them is actually from Maryland and doesn’t do work in Colorado. The other MIGHT reach out next week to see if he has time to look into the project. The rest of the contractors on the list either don’t do the work I need done, don’t work in my area, or don’t have so much as a Facebook page (let alone an actual website I can look up). In fact, I can’t even find reviews on their work anywhere online. Also, for many of them, their addresses and/or phone numbers don’t match what is listed on the Medicaid website. I just… I give up… for today. I have spent all week working on this. 

I just wish we could actually access the services that Lyra qualifies for without it being such a battle. I wish the system wasn’t so broken and impossible to work within. I wish that everything wasn’t a battle. It’s a full time job, and today I am just exhausted.

Again, words are powerful, so be thoughtful with what you say.

Again, words are powerful, so be thoughtful with what you say.

Well, it’s been a very long time since I have written a post in the middle of the night. But, here I am! Lyra woke me up around 2:30am and I discovered we were feeding her bed instead of feeding her.

Feeding the bed: A term we use when a detachment happens somewhere between the tube fed person, and the bag, resulting in covering the bed in their food, instead of feeding them.

So, instead of giving Lyra an extra blanket (what she normally wants), and both of us heading back to sleep, my husband (Happy Birthday!) and I ended up changing her and all of her bedding. We didn’t start a load of laundry because that would wake our 4 year old, and I do not need both kids awake in the middle of the night. Now, Lyra is wide awake and still has about an hour an a half left on her night feed. That means I will be up for the next hour and a half. I am grumpy and tiered. I also can’t help but think about few comments I got this week from other parents at school.

Now, let me start by saying that most people recognize they have no idea what my life is like, and therefore don’t often comment on what I am doing as a parent. But sometimes, people just can’t help themselves, and they have no idea how devastating their words can be. I know that many of you will think, “they have no idea, so don’t let it get to you,” or “they meant well, so it’s okay.” But that’s not how it feels on my end. I already feel so judged and scrutinized by how we care for Lyra, simply because she has such a large (and necessary) team of professionals that help keep her stable. To have other parents comment and judge, without knowing anything, is just…… exhausting.

The first incident this week happened at pickup. I was talking to another mom like me, and we were commiserating about pharmacies and how hard it has become to get certain medications refilled. Her daughter is like mine and requires numerous medications. In the conversation I mentioned how expensive over the counter laxatives have become. A mom, who does not know our children, chimes in, “well, why don’t you just feed her prunes.” …… I filled her in on how many medications Lyra is on for her GI issues, and the fact that she has 2 GI doctors on her team. In my head, I kind of spiraled into all of the things we have tried since Lyra was a newborn to help with her constipation. It’s still bothering me 7 days later. It may seem like a harmless, and possibly helpful, comment. But it’s really not. It’s judgemental.

The second comment happened just the next morning at drop off. Yay me! For context, I drop my kids off 10 minutes late to school every day. This has been pre-approved and is due to the fact that the school does not have adequate parking to accommodate all of the children with mobility needs at this school. So, there is a group of us that drop off just after school starts so that we can use the bus lane, right in front of the school. Lyra is sent off with her para, and I walk Ranen over to his preschool classroom and sign him in. On this day, as I was walking towards his classroom, I saw another mom walking away who had dropped her daughter off a few minutes late. This is a mom I have spoken to before, and she knows my situation. As we greeted each other, she commented, “It must be nice to be able to take your time in the morning and not worry about getting your kids here on time.” Take my time? She has no idea about all of the things we have to do to get Lyra out the door in the morning. Also, I am not dropping my kids off late because I can’t get my act together in the morning. I am dropping them off late because of the schools shortcomings.

What I wanted to say was, “Fuck you. You should come spend a morning with us.”

What I did say was, “well, there are trade offs.” It wasn’t quite as satisfying, but I was glad I thought of something to say on the spot.

Both of these events have been sticking in my brain all week. These mom’s could have simply said nothing and stuck to the normal “hellos”, “good mornings”, “have a good day”, or something along those lines. Instead, they had to point out that my parenting experience is so different, and their assumptions that part of it is due to my failure to consider what most parents have to do. Like I said, parenting is hard for everyone and it isn’t a competition. There is no trophy. But it’s also important to recognize and respect the fact that someone is going through something different than you are. And since you probably don’t know the ends and out, it’s better just smile and say “good morning”.

On that note, it’s almost 4 am and Lyra’s feed is almost done. Time for a few more hours of sleep before our day starts back up at 6am with her first round of medication. Good night!

Applying to Make-a-Wish

Applying to Make-a-Wish

Yesterday I nominated Lyra for Make-a-Wish. And it was hard.

It’s not that I wouldn’t love to have an amazing experience set up for Lyra. It’s about the implications of her being eligible. That is what I find the hardest. But Lyra is eligible. As much as I wish that wasn’t true, that is a simple fact of her complicated life. Honestly, I try to ignore it as much as I can. Yes, we have all the doctors appointments, scans, blood draws, emails with nurses, pharmacy trips, and OT/PT/SLT appointments. We have the special equipment, the medical supplies, and the extra cloths we can’t leave home without. But I often just tune it all out and pretend like every parent has to worry about things like this. Every kid has their challenges. Our life just looks a little bit different… Right?…..

But I know it doesn’t. I know my family life looks a lot different. I see other families celebrate what their 8 year olds are doing, while I am just amazed at how close Lyra is to being able to stand up from the ground without holding someone’s hand. I see kids her age going off to overnight camps, while I am restocking her diaper drawer and making sure her changing table is clean. I hear about siblings bickering, while my son says, “I wish Lyra could talk to me.” Life for us is very different.

So, why not take the opportunity to do something special? Life is hard for Lyra. While she runs through her days with a smile, evil laugh, and wicked sense of humor, that doesn’t mean it isn’t hard for her. So, why not try to set up something for her that is happy, and easy, and a break from our reality? That’s why I applied. Celebrating her is more important than how uncomfortable the reality is for me.

So now we wait and see if she is selected for a wish. Wish her luck.

Lyra’s favorite thing. Snuggles and arm tickles. Nothing like family time with her cousin.

Yet another year

Yet another year

Last week something happened for the first time: A doctor spoke about Lyra as an adult. Given, what he said was, “Even as adult, I don’t anticipate kidney failure being something we have to worry about.” But that is the first time a doctor has made any mention of Lyra’s life in the distant future. Heck, no one has even mentioned what we might need to prepare ourselves for once Lyra hits puberty. Mark and I don’t even think that far into the future. I guess it’s a really different way to keep us living in the present. The furthest out we plan anything is a year, all plane tickets are purchased with travel insurance, and we have learned the hard way to pay extra for guaranteed refunds on hotels.

So I guess this is why all of her birthday’s are a big deal. We don’t take any of them for granted and we are grateful for each one we celebrate with her. Every year, for about a month leading up to her birthday, I become very contemplative. I think about how far we have come, and how each of her birthdays has been marked. I think about all the milestones we have achieved. I think about all of the moments joy we’ve had with her. And it makes me that much more thankful. For us (and I include my extended family in this), it’s not about the graduations or high scores. It’s about the moments on the couch when Lyra rests her head on your shoulder. It’s about hearing her laugh when you stub your toe. It’s about watching her eat dinner at the family table, and out eating some of her cousins.

So here’s to another year with Lyra, who turns 8 years old in less than a month. You’ve come so far.

This year, for Lyra’s birthday, we are raising funds to buy her classroom a light table (hopefully 2 light tables). These tables help kids like her better engage with their learning material. If you would like to contribute, here is a link her Amazon Gift List. Simply click on the dog to add to the gift card we will use to purchase the table.

On Grief

On Grief

One thing parents like me don’t talk about with those outside of our community is the cycles of grief we go through. This may sound odd to those not inside our community, but it’s very real and sometimes hits us like a truck. Today is one of those days for me.

While checking Facebook today, a memory came up from 12 years ago. It was a video I had taken at one of my niece’s swim meets. It was fun to watch her race again, and I forgot how much I enjoy simply watching those races. Then I started to do the math. My niece is now 19. That means she is 7 years old in the video…. the same age Lyra is now. And it made me so sad. I am grieving the fact that I will never cheer Lyra on as she competes. I will never be able to share my love of competitive swimming with her. She will never have her daddy coach her from side of the mat in Ju Jitsu. We will never watch a dance recital, or sit in a choir performance. She’ll never climb a tree, or the big rock behind the cabin at Pinecrest. She will probably never even see the cabin at Pinecrest lake, where I remember sitting and having lunch with my Grandmother. She will never look at a medieval castle and marvel and the strength is took to build it with the technology of the time. She will never stand in an ancient place of worship and wonder what prayers have been offered by people centuries ago. I will never send her up skiing with her uncle, or scuba diving with her aunt. I will never watch her drive away from home to start her own adventures and start a life of her own.

Her world is so small, and I wish it could be so much bigger. I wish she didn’t have to struggle so much to do basic things for herself. I wish there was more for her beyond therapies, school, doctors appointments, medical tests, and small outings. I know that I am saying “I” a lot, and that will seem selfish to many people. But this is my honest experience. I’m sad for her, not because of her. I want to share the magic of the world with her, but I can’t for reasons I don’t need to explain. I know she is happy, because she laughs and smiles most of the time. I know she loves me, because she wants nothing more than to snuggle with me on the couch. I know that she feels wonder every time we watch My Little Pony, or Sing 2 for the millionth time. I know she has a great quality of life, I just wish I could share more with her. But that isn’t what she wants, or needs. By the time I pick her up to go to her next therapy appointment in a few hours, I will be fine. I won’t be grieving anymore. But these cycles happen, and they are normal for parents like me.

I can do hard things.

I can do hard things.

My junior year in high school, a friend asked me “where is swimming ever going to get you in life?” I trained six days a weeks for 2-3 hours, 11 months a year. I was often tiered and sore, and I didn’t exactly have a lot of time to go to parties or get into the mischief that many 17 year olds do. While I had a list back then of all the things swimming added to my life, it dawned on me today that I have an additional set of skills that I had never recognized:

I can do hard things without losing site of the positives.

You see, every day at swim practice I was given a challenge. As a teenager, I had a particularly “creative” coach who enjoyed creating new workouts to push us to our limits and basically torture us. I learned quickly that there were two ways I could react: I could whine and complain, or I could smile and embrace the challenge. Many days, it was a fake smile, but I tried to be positive nevertheless. I learned to focus on the next step, and not let the bigger obstacle overwhelm me. I would focus on why we were doing that specific workout, and what I could gain from it. I would try to make positive comments to my team mates, because hearing those comments out loud helped me finish the next thing. That’s not to say I didn’t sometimes cry, or lose my temper, or have a bad day. No one can be “on” every day. But in general, I tried to face every workout with a positive attitude.

Now, to present day:

I have heard others comment many times that my life is hard. My life is very structured, I have a lot things I have to remember to do every day (that are above and beyond what other parents do), and forgetting/missing something can have life altering consequences for Lyra. I left my career, and I have to focus all of my energy on what Lyra needs to stay healthy and have the best quality of life possible. But, I always flinch when people tell me that my life is hard. I totally get that they are recognizing the work that I do, but I just don’t view my life like that. I have hard moments. I have hard days/weeks/months. But if I got bogged down in all of the things in my life that are so different, I would miss the positives. I wouldn’t hear the giggles when Lyra is doing something she knows she isn’t supposed to. I wouldn’t enjoy the brief cuddles that are her way of saying “I love you.” I wouldn’t recognize the joy she gets from swimming in the pool. And I wouldn’t see the peace she feels when picking my flowers in my garden.

Are parts of my life hard? Yes. I manage 20+ providers for Lyra, and have special meetings for her school. I rarely go a day without needing to send an email or make a phone call. Even on weekends. I have had to face the reality that I don’t know when I will lose her. I have watched her almost die. I have listened to doctor after doctor tell me that some part of her is abnormal/not working correctly….. and they have no idea what it means because they have never seen a case like hers before. I have cleaned up more puke and poop than I care to think about it. I can’t travel like I used to, and international travel is off the table. Some places simply aren’t safe to take her, even if I’d love to share them with her. I basically never sleep through the night. I can be awake anywhere from a few minutes to a few hours, depending on what she needs. And even at 7 years old, I have to frequently life and carry Lyra.

All of this is true, but I don’t view my life as “hard”. It’s different, and not what how I envisioned parenthood. If I let myself get overwhelmed everyday by the challenges, I would miss everything good about my life. And there is a lot of good. I view my life, and the life of my children, as being full of joy, laughter, and love. On days that I don’t want to smile, I try to do it anyways. When others are having a tough day, I try to say something positive, because I need to hear myself say it our loud. I have hard days and hard times. I cry and yell and think about how unfair things can be for her. But I don’t let those things become my life. Because there is a lot of good. There is a lot of positive. I can do hard things, and life can still be good.

Also, just like at swim practice, I don’t do it alone.

When hospitals are just part of life

When hospitals are just part of life

***LYRA IS NOT CURRENTLY IN THE HOSPITAL***

This week I was talking to a mom while her children took swimming lessons from my brother. Not an uncommon scene in the summer at Grandpa’s pool. We were talking about the school year that is about to start and how disorganized things are. General griping. She mentioned how grateful she was for the mask mandate in our district because in December 2019 one of her sons went into lung failure after contracting a virus. He spent 5 days in the hospital. Since then her son has been terrified to even go to the dentist because he is afraid they are going to put a tube down his throat (breathing tube). I nodded and said that I understood. And I do. I explained how Lyra struggles with many things due to trauma. Trauma inflicted to save her life, but trauma none the less. I explain her resistance to masks and her panic with face shields. Her anxiety at appointments and her tears with some situations. I mentioned Lyra has had many stays at the hospital.

The mom stopped and looked at me. She said, “We spent 5 days in the hospital and it shook my whole family. How do you handle every hospitalization?”

I didn’t really answer and we were quickly distracted by something one of our children did. *Snap out of the moment and into active mom mode*

But this question has been rattling in my head for a few days. How do we deal with it? How do we deal with the fact that hospital stays are simply a fact of our lives? I think the best way to describe it is that they are never easy, but we just come prepared. What do I mean by this? Let me give three examples:

  1. Earlier this week Lyra’s eye swelled shut and we weren’t sure why. I ended up taking her to a local Children’s Hospital ER (not the main hospital) because I was confident she just needed some antibiotics. However, I took the time to grab a phone charger, snack, water bottle, kindle, ipad (for Lyra), bunny, and a pair of my sweat pants. Why? We might be in the ER for awhile, and on the off chance she was admitted, sweat pants are much more comfortable to sleep in.
  2. In July 2020 Lyra went in to have a brain MRI and have the tubes in her ears checked. This is routine stuff for her, but does require putting her under anesthesia. The expectation was that she would be under for about an hour, then we would go home after Lyra wakes up. No biggie. What did I bring with me? All of the things listed for the ER visit plus a pillow, a full change of cloths, and a tooth brush. Why? Sometimes weird things happen when Lyra goes under anesthesia. Sure enough, we ended up in the hospital for 4 days. Why? Turns out Lyra had a UTI and decided to start having weird symptoms while coming out of anesthesia. Were the two events related? No. But weird things happen, so I come prepared.
  3. When Lyra was under a year, and we were really in the thick of things, I took her to the ER because she couldn’t keep any fluids down. She needed an IV and I knew she was doing to be hospitalized. Upon arriving at the hospital I used my pillow and favorite blanket to prop her up in a wagon I found in the parking lot (they are all over the hospital). I then added the bag holding my trusty blow up bed, a small grocery bag of snacks, and a few of her toys. I then wheeled the wagon and my small suitcase (carry on size) into the ER. Upon getting into the room in the ER the nurse looked at my stuff and said “this is a little dramatic for an ER visit.” I informed her we were going to be admitted and she rolled her eyes. I didn’t get offended. She hadn’t had a chance to really look at Lyra’s chart. Later she helped me transport our stuff into the room we stayed in for the next 20ish days.

Where all of these events stressful? Yes… to varying degrees. But I also knew what to prepare for, because I’d been there before. Do I still get upset? Oh yes. I’m always sad when I arrive in one of the rooms on the 8th floor. I always set Lyra up in her bed and make sure she is safe. I get her IV pole set up on the correct side of the bed, and rearrange my chair so that I can sit with her easily and still see the TV. Then I take out my chargers and set them up in the locations that are easiest to access. I put my toiletries in the bathroom, and stack my cloths on the bench by the window. I set any snacks on the desk, then tuck any bags underneath so they aren’t taking up space in the small room. Typically I will send a text to a few family members to let them know what room I’m in, then I will call my husband with an update. He’s typically on his way in with more supplies and things I forgot. He hangs back and gets things set up at home for us to be gone. I normally shed a few tears while my back is to Lyra, because I never want to be there. But the hospital is part of my life. Part of her life. I know what to expect. And now, I come prepared.

So how do I handle each hospitalization? One at a time. I take a deep breath and settle in, because it’s what Lyra needs. Is it easy? No. Does it get easier, not totally. But I also don’t do it alone. My husband holds the household together and comes every day. My mom visits (typically with food so I actually eat) and sometimes even spends the night. My whole family plays different roles that keep the pieces of my life together while Lyra gets the care she needs. You just do it. You just deal with it (and that does include crying when you need to).

It’s been 13 months since our last hospital stay…. not that I’m counting.

Pictures of Me

Pictures of Me

These pictures are hard for me to post, but I am posting them because I think there is an important conversation to be had here. To be honest, I wasn’t going to ever let them see the internet….. where they will live….. probably forever, but then I remembered a conversation my husband and I had a few nights ago. And another thought I had a few months ago.

A few nights ago I mentioned to my husband that my family was considering doing some more family pictures around Christmas. I was excited to get pictures that included Ranen (our last photos were done just after Lyra’s first birthday), but I also was scared to get them. I told him that I looked at out last family photos and felt sad. Sad about me and how I looked. I didn’t want to be sad about the new ones. I knew that I would feel the same way looking like I do now. I told him that I didn’t want photos of who I am today. And my husband said, “but what if I do?”

A few months ago I was ordering photos to put on our walls and, while picking out a number of great ones on my husband and the kids, I realized there were none of me. I thought back to a beloved picture of my mom carrying me in a backpack, and I wondered “what if my children look back and they don’t have a single picture like that of me?” It would make me sad, and yet, I never keep pictures of myself.

I’ve never been confident about my looks, even as an athlete. On top of having a slow metabolism, I have struggled with anxiety, and I am a stress eater. While I was able to keep some of that in check while I remained active, having a medically fragile/high needs child has sent me spiraling. Between a lack of available time to exercise, stress, anxiety, trauma, and a genuine love for good food and cooking…… I don’t always make the best nutritional choices.

So, this is where I am.

I am trying to learn to not make value judgements about myself based on my weight and my eating (“I was bad today because I ate _________.” “I am not a good mom because I look so unhealthy.” etc). I don’t make those judgements about other people, and I’m not sure why I struggle so much to not make them about myself. I can see a large woman and think “wow, she looks beautiful”, but when I see a smiling photo of myself I feel embarrassed and think “this isn’t worth keeping.”

But if my photo isn’t worth keeping, then what am I teaching my children? And what if I don’t leave any of those memories behind for them, or for me? What am I teaching my nieces? If I talk to myself that way, how am I teaching other people to talk to me? And what if my husband wants those moments? And wants me present as I am now? Why am I the one rejecting who I am now? Why can’t I view myself as a good person now, and not wait to label myself as a “better” person once I lose some weight? Why not give myself some grace and recognize that I have a lot going on? That doesn’t mean that I can’t try to exercise or try to eat smaller portions. That doesn’t mean that I shouldn’t try to work on my mental health and my internal talk. But those things take time, and I shouldn’t delete who I am now, because a lot of people are happy to have who I am now, here.

So. Here I am now. Well…. earlier today.

Pictures taken with the kids separately because it’s impossible to get them both to hold still at the same time*

Why Birthdays are a Big Deal

Why Birthdays are a Big Deal

Lyra is turning in turning 5 in a week.  Every year her birthday makes me very reflective, and this year feels like a major milestone.  I think sometimes people are confused about why I make such a big deal out of Lyra’s birthday.  I mean, kids have birthdays.  They grow up, they move forward.  That is what happens.  Well, that is what happens for most people.  I think I can explain it best with a story:

It was March 2016.  Lyra was 10 months old.  We had spent 2 weeks in the hospital trying to get her to keep enough fluids down to be at home.  Finally, we got her there and went home thinking we had figured it out. About 24 hours later she had been re-admitted because of uncontrollable vomiting.  On an IV, with anti-nausea medication, and nothing going into her stomach, she was throwing up every 5-15 minutes.  Occasionally we would get an hour or two break.  This went on for 2-3 days and the doctors didn’t know what was wrong.  At one point I stood out in the hallway with the attending physician and one of the residents.  I said to them in a choked up voice,

“the hardest part about Lyra being the only known case to have both of her genetic disorders is the fact that no one can tell us how long we get to keep her.” 

Part of me had hoped that they would say something comforting.  But these were/are good doctors.  They weren’t going to lie to me.  Instead, they looked at their shoes and shuffled their feet a little.  We all stood there in awkward silence for a few moments, and I honestly don’t remember anything about the conversation after.  What I do remember is really realizing and accepting that every day/week/month/year that I get to keep her is important.

Eventually Lyra did get better.  Turned out she had caught a particularly nasty GI virus, and after two more weeks in the hospital we took her home again.  This wasn’t our last hospitalization.  We were back about 6 weeks for another stay.  That one we celebrated her first birthday in cafeteria at Children’s Hospital.  She was healthy enough to go downstairs in her wagon to see everyone.  She was back again 26 months after that for the longest and scariest stay yet.

While we have been lucky so far, we don’t know how long we get to keep her. So, every birthday is a big deal.  We try to make every birthday meaningful.  We celebrate her, and those who have helped make her life richer.  In 7 days Lyra turns 5 years old, and I am going to make a big deal out of it, because I got to keep her for one more year.

We always raise money for an organization for Lyra’s birthday. This year we are raising money for Children’s Hospital of Colorado.  Please click here if you would like to contribute in her name.

 

Someone Sees Me

Someone Sees Me

We have all seen the “I see you” articles written in the acknowledgement of the struggles someone else is going through.  The ones I have seen the most are parent-to-parent.  They mean a lot, but I still sometimes feel like I’m yelling into a void or am invisible to people who should recognize I need help.  I get tons of help and support from family and friends.  However, there are times I need help from professionals.  Finding those professionals has been nearly impossible, but today I felt seen.

Today I was at an appointment for Lyra and I was just chit chatting with the provider working with her. Somehow we got on the topic of support for parents (or lack there of). This woman got worked up and said, “THIS! THIS IS WHAT I AM TRYING TO GET THE SYSTEM TO UNDERSTAND!”  And then she said the one thing that showed me she really sees us:

“We give these parents a diagnosis for their child that alters their whole world and what that world will look like in the future.  Then we (the doctors/therapists/etc) just expect these parents to pick up and charge forward.  We give them no room to grieve the loss of the child that might have been.  We make them feel ashamed of that grief.  We don’t acknowledge the parents can love that child desperately, and absolutely step up to the plate, but also grieve the loss.”

Now, parents in my community talk about this with other parents.  We give each other permission to feel that grief, but it feels like the system doesn’t.  It doesn’t even want to believe that the grief and trauma exists.

I told this provider about my frustrations.  That I can get therapy for Lyra, but I have no way of getting it for me.  And when I have tried, the people in the mental health field I have spoken to seem to be completely unequipped to handle me.  You see, the system knows how to handle and counsel someone who has lost a child.  And the system knows how approach someone with PTSD after they have been removed from a situation and they are away from the trauma.  But for those of us who live in the middle? The system seems clueless.  You see, the events that have traumatized me aren’t necessarily in the past.  The most traumatic ones have a decent chance of happening again.  So my anxiety isn’t unfounded.  And my flashbacks could also be foresight. The system doesn’t know how to deal with that.  I have been told by mental health professionals to:

  • “only focus on the positive things”  – if I could do that I wouldn’t have sought professional help
  • “just be more grateful”
  • “just let others do more of the work” – I have quite a bit of help and support, plus I still want to be her mom and take care of her
  • “I bet your hormones are off”
  • “You just need to take a multivitamin”
  • “Go see this doctor, he will put you on drugs” – I am NOT against medication (I have taken it in the past with very beneficial results), but I also need other tools for coping.

There were other comments, but you get my point.

All this being said, I am okay most days.  Could I be better? Yes.  Do I think I would be better with help from a mental health professional?  Absolutely.  But I am lucky and have lots of support.  I have family and friends I can call.  I have family and friends who help.  And I know that I am not alone, even if it feels like that sometimes. And today, the system saw me.  Or at least, someone in the system did.  And that person is waving a red flag and shouting for us.  Because she knows that healthy parents make happy homes for kids who just need lots of love.  And us parents, love those kids more than we can truly express, even if we grieve for them sometimes.

 

IMG_0808