I’m a huge believer that many special needs parents suffer from Post Traumatic Stress Disorder. My beliefs are backed up by both my therapist AND my GP. (Did I just admit to working with a therapist? What can I say? There are somethings a girl can’t work through on her own.) Yup, PTSD isn’t just diagnosed in soldiers anymore. There’s more than one type of battlefield, and medically fragile kids with special needs come with their own variety.
This battlefield is comprised of parents fighting for their children’s lives.
It’s frustrating to look at my former self and think of all the balls I was able to juggle with such ease. When something new popped up I simply added it to the shuffle and on I forged. Martha Stewart had nothin’ on me…except maybe the jail time.
Then came Parker.
You’d think, being as seasoned of a veteran as I am with this medically fragile stuff, that things could only be getting easier.
Alas, you’d be thinking wrong.
Instead I find myself in the midst of great anxiety each time something new occurs in my carefully laid plans. This might not seem important at first glance, except I’ve always been one greatly skilled at shooting from the hip. An emergency zig has never thrown me for a loop.
Except for now.
And Christmas is becoming one of those zigs that is causing some extreme apprehension.
- Will I be able to pull it off?
- Will there be money for gifts? Even an extremely modest Christmas takes some money.
- What happens if I spend money on this gift and Parker has unexpected out of pocket costs, like say a recent week long hospital stay? THEN what will I do?
- When is Parker’s Cardiologist going to start pushing for another right heart cath?
- Did Parker blow his Nissen when he had that major aspiration incident?
- Maybe I should get a job so I can help out with the never ending bills around here. Oh wait. I can’t even leave the house most days. How am I going to WORK?
- OMG, is this state really crazy enough to elect Carl Wimmer to Congress?
It’s not just big events that throw me for a loop though. It can be any change of plan. Anything I wasn’t expecting or had on the schedule. Even the most mundane of surprises can goes me to go into overwhelmed mode.
Unfortunately, I’m not one of those who looks good covered in overwhelmed. It tends to bring out shades of b*tchiness, discontent, and apprehension that aren’t in the least bit flattering.
It can also make a person worry if they are truly beginning to crack up. And the forgetfulness? To the point of believing that I’m coming down with a raging case of early Alzheimer’s so intense that my poor GP sent me in for an MRI just to reassure me that my brain was still in place and in fact hadn’t leaked out my ears.
So, while it’s nice to know there’s a name to what I’m dealing with, PTSD, it would be even nicer to know that there are others out there who are experiencing the same kind of feelings.
And what you are doing to work through them. Because, seriously, there’s a lot of life out there to be lived and I’d like to be a part of it again.
PS: All images compliments of Google Images.
It would be very nice if I only could afford seeing a therapist.. I absolutely “get” what you are saying. To share this with the world is a completely different situation.. and I applaud you. I have studied therapy – have a Master’s in Counseling.. but alas it won’t do me any good for myself. I connect with other special needs parents… we are not alone in our struggles .. even if they are different.. less or more severe than others.
We all experience it differently too.. I am still recovering from all the things, issues we underwent with Lennon – 3 years ago. No we don’t have it all put together and are super-moms as people believe.. but we are super-moms and humans and do what we have too..
So many times I see parents NOT seeking help from a therapist.. me? I simply cannot afford it.. its one of those situations.
And yes I think sharing our worlds – helps us too!
Much Love,
Petra
Petra recently posted..A week of Medical Anniversaries
Petra, believe it or not, our insurance will pay for my flavor of crazy BUT they REFUSE to pay for Parker’s vent. Ironic, no? sigh.
I kinda put myself out there today. To see me in real life you’d think I was handling all pretty well. Illusion, baby. Illusion. Thanks so much for chiming in and letting me know you get it!
xoxo
We haven’t dealt with 1/100th of the stuff you have with Parker, but Emlyn has come with her own challenges that have caused “PTSD” to be floated about in therapy sessions (oh yes, I see one too and it’s a pity I can’t see her weekly LOL. I think everyone should!!). Emlyn doesn’t sweat – not a drop. She had a major heat emergency at school one day and I just happened to be there to help with a party. The school staff, though trained to recognize symptoms and prevent this from happening, did EVERYTHING wrong. She could have died if I had not been there to notice what was going on. (Needless to say a lot of things changed after that). But I freak out now when it’s hot (which is often, this is GA) – even if she’s not with me. I had a full on panic attack on an unairconditioned flight from Tallahassee to Atlanta (yes – it was 106 degrees and we took off anyway), and Emlyn was safe at home. That was a good time.
On Thanksgiving Emlyn ran away to go the park alone b/c 7 adults in the house didn’t notice. She got 4/10 of a mile. Crossed a road. Barefoot. Alone. I still can barely talk about it. She’s a HUGE flight risk and clearly has no idea that it’s unsafe. When she was missing I legitimately thought I was having a heart attack. Every so often that feeling comes back and I feel like I’m suffocating.
So yeah, therapy is good. A calm husband is good. Chocolate is good. Breathing is good. Other mamas who deal with this are good too…cuz friends and families do NOT get it. Lots of hugs.
oh, and the forgetfullness? Yeah, there are days I’m basically incompetent. A few months ago we had a leukemia scare. I was pretty much useless for those weeks. It’s amazing what that level of stress does to you.
Something else I do – acupuncture. Stress relief, pain relief (I get frequent kidney stones), and general wellness. It’s a luxury, but I try to work it into the budget b/c it makes such a difference.
Maggie, I’ve never thought about acupuncture.
That sounds interesting. I’ve decided that 2012 is going to be the year of taking care of ME. Come hell or high water I’m going to make my way through this.
And…I so understand the heat and running issues being great anxiety issues! xoxo
My heart rate goes up and my throat gets tight any time I smell Avagard D. I have to brace myself and repeat positive affirmations whenever I walk into a hospital. I had my last baby in a birthing center because even the thought of having another hospital birth gave me major anxiety. Glad to know I’m not the only one that struggles.
Sun Lasko recently posted..Summer Part Two: Post Dexter
I understand. No let me restate that I UNDERSTAND! Like you, I was really afraid of putting it out there, but the anxiety and depression had become such a part of my existence that I felt like I was almost being deceitful in my attempts to hide it.
I had depression start when taking care of my first medically fragile child. The last year of her short life was very difficult and there were times where I almost shut down. Thank Heavens my husband was there to keep things going when I couldn’t. Ironically that level of depression lifted after her death. The time it hit again and came on with a vengeance was with the birth of my second medically fragile child years after that first child’s death. Facing it again sent me into a spiral that was severe. It took counseling and medication and prayer and meditation and exercise and a whole lot of love and support to find my way out of that spiral into a place that was healthy again.
The first time I blogged about it, I was so scared of what the response would be, but found out there was nothing to be afraid of, people were so supportive. This is the post the first time I talked about my “mental health” issues: http://monicathemighty.blogspot.com/2010/05/getting-fat-kid-out-of-door.html
Monica recently posted..Mothers Don’t Get Sick Leave
It’s so funny you posted this! I was just talking to a friend who’s son is back in the hospital. She told me she wonders why she has not yet come to grips with what her son has. She asked how I do it. I do have my times when I just plain have a panic attack! But I’m so grateful for my training that I had before Jax came along. And for the fact that I worked at the children’s hospital for four years before thrust into this life of fragile! The medical world has always been my passion, ever since I can remember I was giving my dolls shots. Although it’s still much harder knowing it’s my own child, I’m doing what I always wanted! The only bad thing is I get cranky when a parent complains about something that I know is nothing, or thinks their child is so horribly sick when I know there is much worse. But that is where I slap myself and remember that everyone is different, and not everyone has experienced the very worst. So to them this is as bad as it gets. Wow, the life lessons we’ve learned, right?!
Thank you for putting yourself out there and sharing this with us. I too have PTSD and Anxiety. Every time our Liam shows signs of sickness I can feel my stomach clench and start to act up which has not been great for my ulcerative colitis . I think the near death experiences and trip after trip to the hospital have give our whole family anxiety. If Liam looks the least bit too sleepy or “off” even his siblings are saying “oh no ” hope he is not feeling sick. sigh… Therapy and medication have been really helpful, also learning my own limits and how to ask for help. I think we want to be the moms that can do it all and don’t need any help but, sometimes we just do.
Oh wow Tammy…you have described every feeling and emotion that I feel…you always do! I’m not so good at expressing how I feel or what’s going on in my head so I need to just bottle you up then open you up when I need you to explain to others =)
The first time I had heard that I may have PTSD was in Paelyn’s pediatrician’s office here where I often cried and felt that it was a “safe environment” to express what I was feeling. Most people don’t understand what it is like watching your child code multiple times and a T.V. medical drama show unfold before your eyes except is was MY child there….with a flatline….fighting for her very life. Who get’s that? I have suppressed a lot of what has happened because “dealing with it” is just so painful. I lived on pins and needles during Paelyn’s 4 month hospital stay watching her code and going back and forth from PICU to the floor to surgeries to procedures and becoming one of “those parents” who made that tiny room my whole existence. Paelyn and I were 4 hours away from my husband and 6 other children and I saw them 3 times in 4 months. Extended family support?? There was none.
I have not made the effort to see a therapist yet mostly because there isn’t time. I keep a journal and my sweet husband listens to my rants and graciously just listens.
The “phase” or emotions I am feeling right now is anger. I feel like no one understands. Friends who once offered help don’t even call anymore. Neighbors who just stare at me while I struggle to get Paelyn in the car with her car seat, oxygen tank and 100 carry along bags of supplies, feeds, back-ups, etc. (Oh what I could give to have JUST THE CAR SEAT again) Why do people say, “Let me know if there is anything I can do” and then when you ask, they “can’t” or they’re “too busy” or don’t even have the common courtesy to respond. Our church is at 9 in the morning. I haven’t attended much due to Paelyn (I don’t have to explain “why” here, right?) I get a lot of judgement there as well. Because of the highest form of dysfunctionalism there is, we have nothing to do with my side of the family…not even one member. What I wouldn’t give for parents right now…or even just my mom or a sister. Yep…anger sums it up.
So who really “gets” what the Special Needs Parent goes through other than those themselves? My Savior does and that is who I lean on right now. And for now, that will have to do.
You have PTSD for sure, I think I’ve been telling you that for about 6 years now, but don’t forget about sleep deprivation. That alone can make a person think they’re going insane. Add it to the PTSD and it’s a tough combination.
Did ya hear me shouting over #4 in your bullet points????!!! All the way from CA?
((((hugs)))) I believe that time is the best healer.
Nope! You are not alone! I’ve been dealing with PTSD for 3 years. 3 years ago is when we had our first big hospital scare. So now when things come up with Jayden, I find myself remembering all the things that happened when he spent 2 months in the PICU fighting for his life. He was in heart failure at the time. And everytime he gets sick, it throws me for a loop!
I have to agree with what Chris said above. Time is the best healer. Jayden was diagnosed with pulmonary hypertension 3 years ago, and now he has no direct or indirect signs of it. But it’s still there, lurking in the back of my mind. “What if it returns?” “Could Jayden handle another scare like he had 3 years ago?”
I’m glad you are going to take care of you! I wish I could do that more often!
Regina recently posted..First Snowfall
I hadn’t thought about PTSD. Makes sense.
I’m just thankful to know that my family isn’t the only one dealing with similar issues. There’s an awful lot of us out here. We’re just too busy (or frantic, or stressed, or etc etc etc) to get together to help one another.
Keep praying. My family will do the same.
Edd Fear recently posted..Sunday Mornings
Yep, know those feelings. My stomach knots up, I become short and irritable, and my husband likes to say I channel General Patton’s ghost. Don’t get in my way. I REALLY hate roller-coasters, yeah, the amusement park types, and that’s what it feels like.
When the crisis hits, I do okay. But as soon as it’s over, reality sets in. I write, or read, blogs, play the piano, read “fluffy stuff” nothing that requires any brain power because that’s long gone, and I hide and cry. I also turn to my T18/13, medically fragile family because they all “get it.” As much as friends and family want to help, they just don’t and can’t get it. So, thanks, Tammy, for putting this out there. And thanks even more for being part of my “therapy”. I get a lot of strength from you..
Rebekah recently posted..Santa Claus is Coming to Town!
I really needed this today. I often wonder if I have PTSD and yesterday, I lost it when my DVR didn’t record my favorite Wednesday night shows…and that’s when I knew I was going through one of those times when I feel super stressed. Sigh. Thanks for this.
Tiffany recently posted..ROTFL
Love this post… I can totally identify with it! I wish we lived closer so we could sit down for a cup of coffee and a nice long talk while our kiddos played. Ahhh!!
Renee Garcia recently posted..Top 10 Reasons You Might Be A Military Spouse At Christmas…
I think any mom of a super challenged child would be lying to herself if she didn’t think she experienced PSTD at one time or another. I find it interesting that this same topic was just brought up on a Mom’s of Near Drown Children sight. As with all of us our most stressful times are when are children are so sick and there’s absolutely nothing we can do, the helplesness of that situation would just about send anyone into a huge spiral of depression.
I find for me the things that help me the most is getting a bit of a break everyday, even if it’s only for a few minutes, walking has done wonders for me this past year. Also my faith in God helps me get through the really rough days and last but not least being able to talk to my counselor knowing it’s a safe place for me to cry, because I hate to cry, has really helped me through the roughest days..
Sue Searles recently posted..Our Wonderful, Great, Refreshing, Amazing, Awesome Trip in Pictures
Noticed you guys haven’t posted in a few weeks…hope all is well. And I hope you guys had a VERY awesome Christmas!
I know life can be stressful, but our kid-o’s make it all fade away thought doesn’t it.
Noah’s Dad recently posted..Top 10 Christmas Gift Ideas For A Baby Born With Down Syndrome
Though I’m not totally blessed when it comes to finding the perfect partner but at least I know that me and my baby are both healthy. I know for some time that I would be dealing with a “partner” issue but just taking it for granted. As long as I can still provide for my kids needs theres no need for me to look for it. It would only have cause me headache.
My children have not ever come close to death, but I have two kiddos with an autoimmune brain disease and myself I have chronic illness, lyme disease that has traveled to my brain and nervous system. Until last year, I dealt with all their health and behavioral challenges almost all by myself. I had a very apathetic spouse who initially fought me in the beginning during diagnosis and resisted treatment for them in the beginning. I’ve had to threaten leaving him many times to get him on board with providing what they need and participating in daily life. I’ve had anxiety and panic attacks for years, have great difficulty maintaining any friendships, family relationships and even a marriage with my spouse. Every time my childen get an autoimmune attack they regress into severe behaviors that are often violent. I get to watch my children fade away into angry, handicapped kids and lose them. It’s not fun and it truly sucks. I’m often on edge that no matter what we do, they’ll be having flareups of their God awful condition. To make matters worse I had previously trusted family to care for my oldest child only to find out they were physically abusing him. He still has high anxiety and nightmares, difficulty sleeping. I have difficulty with remembering things, with paying attention at work and in real life. Often I feel irritable and don’t want to talk about my problems with anyone. I snap at home over the smallest things, and I lose it at work. I often wonder if the years of fighting this non stop stress with limited support has permanently messed me up.