It goes without saying that our lives changed when Paige was born (at 25.5 weeks for those of you who are new). Hospitals, doc visits, meds, medical terms to learn, etc. The only thing that was consistent in our lives what the inconsistency.
When Paige was 4 I joined an on line group for parents of older preemies. At the time I needed help with the public school system and the parents on the list were full of very helpful advice. One feeling that I took away from the "been there, done that" crew was a sense that they had settled into their lives. They had gotten to know the doctors well, were used to IEP's and had accepted (but not given up on) the alphabet soup (ROP, MR, DSI, SD, BPD, CP, etc) that their child was dealt. I remember being so envious at how calm many of them were and couldn't wait to get there myself.
9 years has passed since Paige was born and I still don't feel calm. Inconsistency still rules our world. Just when we think we are on the path to consistency, more letters are added to the already full bowl of alphabet soup.
I'm still waiting for the day when we can all settle in.
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While my guy is only 20 months, I hear you loud and clearly. Last April I was starting to settle in. I felt like maybe my son had escaped from having long term issues of being born too early. That is when he was diagnosed with hypertension. The weird thing about it was how the doctors couldn't understand why he had hypertension. I was like - uh, he was born at 28 weeks.
I wonder if anyone really feels completely settled in.
Carrie
To get there you have to first let go. You have to realize that sometimes, Why? has no answer - and may not even have been the right question to ask in the first place. Once the question has changed to "Where do I go from here?" Then you are on your way to acceptance and calm.Finally, when most of the questions have been replaced by statements, such as, "This is my life, and who cares about normal anyway.", then you know you have arrived.
Acceptance and calm can be achieved, I think, without ever saying or thinking: "who cares about normal anyway?"
Most of us care deeply about "normal" and wish that our children and lives *were* normal. Being honest with myself and others about this, and realizing that I couldn't make my child normal, helped me achieve calm and acceptance.
Reality for me set in when Ed was about 6 and clearly wasn't going to be mainstreamed without major difficulties. We stopped "fighting" and found a good private school for disabled children where he has flourished.
This isn't to say there aren't more shoes out there waiting to drop to upset our somewhat fragile equilibrium -- like Ed's latest surgical nightmare in June/July.
But having a diagnosis early on, knowing and accepting the reality of what you are facing, can be oddly liberating. Sometimes the hardest adjustments are in families where the children's outcomes are less severe and more ambiguous.
I think Helen's observations about how 'easy' it is to achieve zen about your child's disabilities have a lot to do with how far away from 'normal' your kid is, have great validity. If you're living just outside the 'candy shop of normal being forced to see those normal families on the other other side of the 'shop glass' - it's a constant and painful reminder that you *could* be having a candy shop time, if only ... on the other hand, if you live everyday in a remote wilderness where you only encounter others as far from normal as you... you just don't think too much about those candy shop families "over there". Once I realized that no amount of teeth gnashing or rending of my garments in guilt or penitence would make my Katie a "typical" student and her high IQ didn't mean a damn thing ... I suddenly was able to ignore her school work and never harangue her on behalf of the school district again. I realized then it was merely how "close" to normal we were that had made me keep pushing the boulder up hill in a futile effort.
Fortunately I was able to translate that to a better experience for her sister. While I didn't get a better outcome from the school - I never, ever one time yelled at Ali about her math homework. Yeah for our team !
Sheila
anonymous wrote: "Finally, when most of the questions have been replaced by statements, such as, "This is my life, and who cares about normal anyway.", then you know you have arrived."
I think I would care less about being normal if it wasn't her mental health that was so abnormal. It's hard to watch. It's so hard for her.
Sheila... so wonderfully written and a great way to explain how I'm feeling!! I remember when you "let go" with Katie. Your peacefulness poured out of your email on the subject. I was so envious. I wanted to be in the frame of mind that you were now in. I'm still hanging on to hope!!
I was actually thinking of this exact thing yesterday and this morning. A lady at the foundation for the blind called and needed some support. As she broke down I realized I have come to a "settling in" of sorts. Realizing that I don't freak out at certain aspects of our live any more and it doesn't bother me to give my opinon about a doctor or just the day to day activities. It's not until that next thing gets thrown at me that the settling in feeling goes away. Right now.. I am settled. Ask next week.. it might change. I don't know what the future will hold for Tyler and for his mental health issues or even his long term issues. But I am settled. I am ok with how things are right now.
I'm wondering if perhaps the "settling in" that you speak of has to do with the type of disability? Mental health issues are so upsetting to the balance of life in a household - the meltdowns, the constant wrangling of issues. .it would take a saint to be able to take this in stride and remain calm throughout the tirades. In addition, if your child has life-threatening issues (seizures, shunt malfunctions) you become hypervigilent - no settling in there either, I'm afraid. PE, I'm still waiting for the settling in too and we've been at this for 2decades.
Even in the face of mental health issues, a feeling of being "settled" is possible. When you wake up in the morning already expecting the unexpected, you are more prepared to handle it when it occurs. It doesn't take a saint to stay calm in the face of chaos, just someone who knew it was coming. And just because it doesn't frazzle you past your ability to cope, doesn't mean that you don't occasionally scream back, or feel like running away. I do feel that several of the other posters have probably hit the nail on the head - The closer to "normal" your child is, the harder it is going to be to accept that they are not. For those of us that are so far out, acceptance probably comes much easier. I know many people over the years have expressed envy and sadness when they look at a group of their childs typically developing peers. I never have, at least not since infancy. I look at those in the disabled world that are blending with typicals, the diplegic child that is manuvering throught the halls in a walker, or even the teen in the wheelchair, that is socially and emotionally on track. Those are the ones that I envy.
I recently bought a toy for Christmas for my 1-year-old, full-term nephew and bought the same toy for my 32-year-old ex-preemie.
The poignancy of the situation didn't strike me until just now (while reading this blog)-- two weeks after making the purchase.
I guess this is "settling in"... sort of.
But I still feel a dagger over my head ready to drop at any moment. Hydrocephalus, and its many complications, will do that to you.
Mental illness is -- in my opinion, having seen both in my immediate family -- even worse.
It takes a heavy toll on us. In fact, according to the research, it takes somewhere between 10 and 17 years off the genetically determined lifespan of those of us giving lifelong care to a disabled child. The stress, sleepless nights, etc., of this care shreds the telomeres at the end of our DNA, leaving us vulnerable to lethal illnesses, and parents of preemies (especially moms, but also dads) tend to die earlier than other parents.
So just about the time you get "settled in" about your child, you have to get "settled in" with your own major health problems.
You may wish to call it “Acceptance.” When do you “admit” that your life is not “normal” and it’s “OK” (that’s it’s not normal)? I’ve always felt that there was a fine line between “acceptance” and “giving up”. I never wanted to say, “would of, could of, should of.” So, tying in with alternative therapies, we tried a ton of interventions with our preemies. Especially in the autism arena. We did diets, supplements, chelation, Wilbarger protocol, physical therapy, occupational therapy, early intervention, etc. I still belong to several on-line groups and I follow the “latest” break through because you never know. But, for the most part, I have accepted that my life, basically, sucks. DH and I have a depraved sense of humor and maybe that helps.
My youngest DS, by one minute, has decided to develop a seizure disorder. The school called us about a month ago describing what sounded like seizures. We dutifully made a trip to the pediatrician who agreed with all involved. Now, DH and I have never seen one of these seizures. They are only happening at school and by the time I get there, the seizing is finished. But, the teacher, speech therapist, principal and para-pro (that’s “teacher’s aide” for the uninitiated) have all witnessed them. We log the seizures and report them to the doctor.
Since we have the “world’s greatest” health care here in the United States, we are, of course, on a waiting list. We can see the pediatric neurologist in February. We did get an EEG done a couple of weeks ago and we have an MRI scheduled for the day after Christmas.
Early this morning, 2:32 a.m. to be exact, DH and I were woken out of a sound sleep by what sounded like a huge temper tantrum from DS. He was screaming, crying, stiffening, arching, hitting himself, tightening up his stomach muscles, grunting, etc. These “tantrums” would cycle. The behavior would last for a few minutes, then it would stop and he would start to drift off to sleep. And, it would start again. I knew it wasn’t a tantrum because he wasn’t pushing me away or kicking me, which is his typical behavior when tantruming.
Now, while this was all going on, DH and I sat on the couch and brain stormed what could be wrong. Kidney stones? Couldn’t be an ear infection, he’s never had one. Teeth? He was just at the dentist. Stomachache? Constipation? UTI? We very calmly and rationally ran through a list, discussing the pros and cons while we tried to comfort this screaming child who is non-verbal due to autism. Finally at about 3:30 a.m., he settled down and went to sleep.
While I was trying to get back to sleep, which in my situation takes all of 5 minutes due to sleep deprivation, I wondered about his seizures. I have a friend who has grand mal seizures. So, I wondered, could a seizure in a toddler manifest itself as a tantrum?
This morning, I “Googled” toddler seizures and found this:
Gelastic seizures are brief outbursts of emotion, usually in the form of a laugh or a cry. They may be accompanied by forced eye movements, chewing or grinding the teeth, tonic posturing, and clonic jerking. The person may appear confused and/or dazed during and after an episode. Gelastic seizures usually last 5 to 60 seconds. The person may remember them clearly or may be completely unaware of what occurred.
Gelastic seizures are both unpredictable and unprovoked by the person's surroundings. They are abrupt in onset and quickly over. Gelastic seizures may occur nocturnally, waking the person from sleep and leaving them exhausted.
Research shows that gelastic seizures often occur in people who have a (often maternal) family history of migraines.
Dextroamphetamine, primidone, and phenobarbital, sometimes in combination, may be prescribed to control gelastic seizures.
Wow. I have migraines. The seizures described by the school last 5-10 seconds. He rolls his eyes back in his head. He arches and stiffens. He also has inappropriate laughter.
Now, I ask you. How many parents could sit, debate and brain storm their child’s situation at 3:00 a.m., briefly consider a grand mal seizure masked as a tantrum, go back to sleep, and follow up with it on the internet the next morning after all the kids had gone off to school, if they had NOT “settled in” or “accepted” their children’s disabilities? Or maybe I’m just the cold hearted b*tch that the family wants to make me out to be. While my life does “suck” for the most part, it does not necessarily “suck” to be me. I think there is a huge distinction.
Full comments at http://circlingnormal.blogspot.com/.
twinsx2 wrote: "Now, I ask you. How many parents could sit, debate and brain storm their child’s situation at 3:00 a.m., briefly consider a grand mal seizure masked as a tantrum, go back to sleep, and follow up with it on the internet the next morning after all the kids had gone off to school, if they had NOT “settled in” or “accepted” their children’s disabilities?"
Count me in that group too twinsx2! I rarely rush off to the hospital/doctor in the face of new behavior. Is she breathing fine? Yes? Quick run through of possibilities that are stored in my head and then back to bed.
I surely wouldn't call you a b*tch for the way you handled the situation.
Side note... I hope that you have some answers now.
I agree too with twinsx2 and PE - now that I'm a RN, I realize that the skills I have for assessment are not those gained from formal experience, but rather those gained from years and years of so-called "parenting". .the ability to look at a situation objectively and trouble-shoot become amazingly acute after having cared for a child with special needs or with complex medical situations. We are not parents, we are nurses. We may not have the initials to go behind our names, but we are doing what nurses do.
Stacy, a wise songwriter once wrote:
"The nearer your destination, the more you're slip-sliding away."
I think that means that just about the time we feel we have a handle on this or that; just about when we think we 'get it,' that is, understand/accept, that is when we get a reversal.
Or it may mean, two steps forward and one step back--what we were all told in the NICU about our kids.
Chris and Vic
Stacy, a wise songwriter once wrote:
"The nearer your destination, the more you're slip-sliding away."
But ... that same wise songwriter also said ...
"I know a woman, became a wife - these are the very words she uses to describe her life. A good day, ain't got no rain, and a bad day is when I lay in bed and think of things that might have been"
The gospel according to Paul (Simon) :-)
Word ...
sheila
Still no answers. MRI is the day after Christmas.
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