Life With Miles

Special Needs

If you know me, which you probably do because you’re reading this, you know that it is not always easy for me to talk about things that are difficult, particularly in an open forum or for any length of time. I put humor into it, or I slap on a happy ending, which may not fit into the narrative I have constructed. I use humor because I value it so much – a life without laughter is not a life in which I want to partake. I slap on a happy ending because, frankly, I always try to look on the bright side. In some instances, however, I realize that this may actually be a disservice to myself and to those who are trying to understand what it is my family and I are going through.

With that in mind, I am going to attempt to write about what life is like for us in a way that is a little more representative of how it actually is, without the silver lining.

DISCLAIMER: As of the writing of this blog, it is my understanding that the terms for “special needs” and “neurologically typical” children are the most accepted terms to use. It is not meant to imply that a neurologically typical, or “typical” child is not unique or special in their own right, but simply that they developed more or less along a predictable and established (or “typical”) timeline and that they are about on par with their peers. Additionally, a “typical” child likely does not have medical needs and specialists beyond those of their peers. My personal definition of a child with “special needs” is: one who needs extra intervention on a regular basis just to navigate their home/the world/their school/their life.

A woman I was talking to once stated to me (sitting there with Miles, in his wheelchair,) that she didn’t like the term “special needs” because “don’t all children have their own special needs?” I was momentarily speechless, but I eventually said “Sure, all children are unique, but to me the term ‘special needs’ means something else.” I remember thinking “This is hard enough – do you have to take my adjective away?”

(A note of caution: adjectives are descriptors we use to help someone understand what we are talking about. We must be wary of the weaponized adjective: The Label. I try hard not to use labels because they imply a bias. As Ian has said: we need to use the words to help tell a story–not in place of a story.  It can be a fine line, but one we must strive to navigate with as much grace as Philippe Petit on the high wire.)

Even in the optimal situations, being a parent is difficult. Children are not trainable like puppies and they never behave as you might want or need them to… Make a list of things you need to accomplish during nap time and it’ll all but guarantee that there will be no naps. Your child only eats hot dogs? Buy the big case at Costco and he will insist that he doesn’t like them any more and only wants to eat macaroni and cheese. Need to be on time? She flushed her shoe down the toilet. They become preteens and then teenagers and grow moody and secretive and then they leave home and you have to hope and trust you prepared them well enough.

Right now I have a typical preteen and a typical three-year-old. Each of them is able to make me want to tear out my hair on a daily basis. If I had a dollar for every time I repeated something I just said ten seconds before, I would be a rich lady indeed.

And if that’s not enough for a parent, there are activities, sports, music, after school clubs, and everything. And everything costs money! Did you know children have to eat every single day? Not just the one time, either! They devour snacks like fiends and then, if you’re lucky, they eat food at mealtimes too. And if you want to put on a show and pretend they’re hungry dinosaurs eating tiny broccoli trees, they may even get an occasional vegetable in. And you have to cook it all, even if you know they won’t eat it, because they might actually eat that one time and if there isn’t enough they’ll let you know exactly how hunnnnngryyyyyy they are.

And you love them more than you ever believed it was possible to love anything ever. It even hurts sometimes.

Add into that mix a third child. This child is sweet and funny and wonderful, just like the other two are, but the frustrations he brings are different. They involve appointments, meetings, advocation, equipment, uncertainties, and worry.

We see two therapists a week and he has a bunch of specialists. Some months are busier than others. June/July is going to be particularly busy because we are going back to a developmental pediatrician and because most of the specialists see us on the same 6-month rotation. I have to find ways to occupy the boys – because Duncan always has to come too, and sometimes we have to bring Verity as well – through all the waiting otherwise they start going through all the drawers in the doctor’s offices.  Oh! And parking! I have to try to find a handicap spot so that I can take the wheelchair out and get Miles into it without much hassle. Sometimes I can’t find a handicap-designated spot and the building where we go for most of our appointments has a parking lot designed for compact cars so I usually end up parking our van like a jerk just to get the wheelchair out and hope that nobody blocks my ability to get it back in.

Miles has an ophthalmologist because his eyes took a long time to mature and it’s hard to tell if he has problems with vision. His next appointment is in July.

He had an infant nutritionist because he needed to be on special high-calorie formula so he would gain weight, and who helped us navigate some high-calorie first foods.

He has an ENT and audiologist because he doesn’t reliably respond to his name or to sounds and it was feared he had hearing loss. He ended up having several behavioral hearing tests before he had to be sedated and have brain analytics done. His brain responds, but he doesn’t always, and we don’t know why.

He has a urologist because he had a urinary tract infection when he was just a few weeks old AND because he had to have a surgical bilateral inguinal hernia repair at four months old AND because he has had to have three surgeries on his penis due to hypospadias. He has had to have testosterone injections prior to each hypospadia repair, except for the one next week, which will hopefully be his last.

He has a neurologist because when he was one year old he had a febrile tonic-clonic (or grand mal) seizure which lasted over 25 minutes and which caused him to “code” in the ER. I watched as they performed CPR, applied paddles, and injected his heart with epinephrine. As it was happening I started trying to figure out how to tell Ian that I watched our son die.

He has a geneticist because, once he came out of that horrifying scene, the doctors wanted to try to figure out what the heck happened and to find an explanation for his phenotype.

He has an endocrinologist because, during that seizure his blood sugar was low and he was consistently unable to get his little body on the growth chart. (Except his head. That was always 50th percentile.) We will see her on Thursday.

He has a gastroenterologist because, at my sister-in-law Llama’s diligent suggestion and my advocation, he was screened for celiac disease and lo and behold, we found it.

He has an orthopedist because he turned two and wasn’t walking. He is seen every six months still. We go back in two weeks and I am excited to see if anything changes now that Miles can cross a room on foot.

He has an epileptologist because about nine months ago he started suddenly losing focus in his eyes and dropping his head, sometimes banging it. Hard. or he would just stare off for several seconds at a time. In January we had an overnight electroencephalogram (EEG) and it showed he was having hundreds of seizures, both absence and atonic every single day. He was diagnosed with Epilepsy.

He has a developmental pediatrician, who is helping us try to figure out the best way to meet him where he is and help him learn. 

We had a hematologist because Miles had chronic anemia, requiring re-admission to the NICU, two transfusions during that time, and then another transfusion right before the hernia surgery mentioned above. Also because his white blood cell count was elevated and remained elevated for several months.

We had a cardiologist because he was born with two holes in his heart. Thankfully, they appear to have closed and we have been discharged from cardiology.

He has weekly speech therapy, both in school and as outpatient, to try and find ways to communicate with him.

He has an hour of physical therapy at school every week and a half hour every other week as outpatient.

He has occupational therapy weekly at school and every other week as outpatient to try to gain dexterity and improve functionality in his fine motor skills.

He has a soft helmet he wears because, despite ten doses of medication every day, he still has dozens of atonic (drop) seizures every day. Mostly, the helmet keeps him safe, but now that it’s summer, golly he heats up good. 

SmilesyHelmet
Cutie in a helmet

When he outgrew a stroller, we got him a wheelchair so that I don’t have to carry his 33 pound body everywhere. We chose a wheelchair instead of a special stroller because we wanted him to learn to move around in it on his own. He’s getting pretty good.

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Cutie in a wheelchair
When he outgrew his crib, we got nervous that he was going to fall out, so I put him in a pack and play to sleep. He *did* fall out of that. Onto his head.  We were able to get a hospital bed with netting to keep him safe at night. It is entirely white, giving it an impersonal and sterile feeling. I change the white sheets a lot because I can see everything on those things.

As he continues to grow, I can’t help but think: if we are lucky, he will grow up. He will likely not live an independent life. He will grow out of the cute small child phase. He will hit puberty and may be very confused about what is happening. Will he learn to shave himself? Will he ever hold a job? Will he talk to me? Can we have a conversation? When he was a baby in the NICU I consoled myself by dreaming of the future time when I could tell him the story of his harrowing newborn period and he could take some pride in being born small but becoming the soccer star / computer programmer / whatever the heck he wants to be.

On holidays or even regular days Ian and I often discuss the possibility that we are unlucky. How many more holidays do we get? Is it possible to capture the moment of hearing his giggle, of seeing his wonder, of smelling his wee head, so that we can relive it when we don’t have it any more? As I write, he is asleep in his bed. I can see him in the video monitor sprawled out on the mattress trying to keep cool on this hot night. I want to go in and scoop him up and hold him close to me as he sleeps, although I know it would be unbearably hot. Moments like these I just yearn to pause time. I ache.

sleepingHot
Sleeping and hot
Special needs for us means all of this stuff. It means I can’t work a typical job because I have a fantastic balancing act to perform on a daily basis. Starting friendships, a super-power of mine, has become incredibly difficult because I find I can no longer relate to others as well, or rather I don’t know that they can relate to me. Touching upon all of the aspects of caring for Miles, as I have here, seems daunting to think of all at once, but it’s always there, all at once. Every day. Parenting without special needs is a difficult job. Everyone has their story, their past, their pain. This is a peek into ours.

 

 

 

 

 

Life With Miles

Hindsight Blog #2: The First Nights Home

For the story leading up to this entry, please click here.

I remember when we were getting ready to be discharged after I had Verity in 2008. Outwardly I was expressing the relief I believed I was supposed to feel at the prospect of finally going home. Inside, however, I was terrified. We were packing up the extraordinary amount of stuff we were taking home from the hospital and I wondered if I could sneak a nurse in there, just to make sure we could keep her alive overnight.

 

So of course we were obnoxiously careful about everything we did once we came home. Ian took her on a tour of the house. When it came time to put her to bed I nursed her, we put her in a clean diaper, some cozy pajamas, and swaddled her up good – just how she liked it.

 

We had a cradle that Ian’s great-grandfather had made for Ian to use as an infant. We set it up next to the bed on my side and set her down. We got into bed ourselves and turned off the light. I couldn’t see her. It was too dark. I was used to the lighting and the rolling crib thing from the hospital and our bed was too high and the cradle was too low and I couldn’t see her so surely if she stopped breathing or suddenly somehow wiggled out of her swaddle and started suffocating I wasn’t going to notice and… and… and… panic attack.

Sleepy girl on her first day home. Clearly she is in peril.

If you know Ian, you know that he has a couple of superpowers. He is very dedicated to the things he cares about, for example. He also is very impressive with spatial reasoning. But his most excellent superpower is sleeping. That man can – and will – sleep anywhere. By the time I was in full-on hysteria about her not making it through the night he had already fallen fast asleep. I shook him awake, crying and blubbering. He installed a soft light. He offered to bring in her crib so she would be higher up. I insisted it be right next to me, so I could see her just by turning my head. Now, if you can picture the set up of our bedroom at the time, it was like this:

 

*Not to scale **Also, door is just plain wrong. It should open in. 

So, the crib had to come in to the room and through the space between the bed and the dresser on the other side. Except it was too wide. So Ian, hulk that he is, lifted the entire crib over the bed and placed it next to my side of the bed. It took up the whole rest of the room. She looked tiny in there. So pink and tiny and fragile. But she slept, and, eventually, so did I. It was a terrifying night, but once the morning came and she was still alive, subsequent nights became a little easier. She has managed to survive every night since, and she’s 9 years old now.

She wants you to know she made (decorated) this hat.
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Flash forward 5+ years to the day after the mid-night we brought Miles to the NICU. We somehow made it back to the hospital where Duncan was. I think there was a good deal of waiting for paperwork and two carseat tests before he was cleared to ride the mile home in the car. Ian got us settled, gave Duncan a quick tour of the apartment we were living in, and we arranged for him to return to Massachusetts General Hospital (MGH) to spend the night with Miles.

 

My parents were staying with us, which was such a relief, because it meant that they could focus on Verity and I could focus on Duncan. I was so tired from the lack of sleep the night before and trying to get Duncan home. We were still working on getting nursing right, and I was pumping as much as I could for when Miles would be able to eat again, but I have never possessed the coveted milk factory mammary glands some women are blessed with.

IMG_2161
Grammie and Duncan, Home Day #1

I told my parents I was going to bed. It was early. I brought Duncan in to my room and set him up in the little crib we had for him. I felt empty. He would cry and I didn’t know why – he wouldn’t eat, his diaper was dry, and he wasn’t going to sleep. I wanted to snuggle him so we could both go to sleep but I was afraid to bring such a small guy (just under six pounds at this point) into the bed. He was too little for a carrier and I didn’t want to leave the room in my fragile emotional state to ask for help. All I wanted to do was sleep and all he wanted to do was cry. I just kept thinking we made a huge mistake bringing more babies into this world when clearly I was not qualified to mother them.

 

I knew that on the other side of the door I had support, but I couldn’t bring myself to ask for it. Knowing you’re a failure is different than admitting it to others. I got hungry but didn’t leave to eat. So Duncan cried and I cried and in Boston at the NICU Miles was fighting for his teeny tiny life while his daddy was having a very different night than the one we were having. (Maybe I will be able to convince him to contribute a post of his own…?)
Meanwhile, thankfully, Verity took it all in stride, tickled to have the full attention of two grandparents who brought her to the pool whenever she wanted, and she was so proud to have new babies. She made pictures for Miles to keep at the hospital because she couldn’t visit yet, but she wanted him to have a part of her with him. Her sweetness and optimism and joy over the next days, weeks, and months served as a battery recharge when all seemed spent. We put a lot – too much – on her little self, but fortunately we had done some things right and she was up to the challenge.

 

I mean, come on.

I don’t think I could tell you with honesty that my first night at home with Duncan was more scary than the first night with Verity, even with Miles in his emergency situation—Ian was there, so I could leave most of that fretting to him, I guess. Both nights I was let down by my own feelings of fear, of inadequacy, of disappointment. Both times I was dealing with more than the typical first-night-home, but the first time I didn’t realize it yet (I was incredibly sick and ended up going back to the hospital for 11 days). Despite that, I strongly doubt that I was alone in this experience.
In that vein, parents: I want to reach out to you. The first night you were home, wholly responsible for someone else’s life, what was it like? I’ve heard stories of people who could not wait to get out of the hospital and get home… to me, these people are mystical creatures. Even more mystical are the parents who do it all at home, especially the first time. I am in awe of those parents. If you’re up for it – tell me those stories. Comment below, or on the Facebook page, or send an email to Smiles4Milesy@gmail.com. I look forward to reading them – and possibly compiling them into a later post (all requests for anonymity will be honored.) If you adopted or became a step-parent, you still have a first night as a parent – I would love to hear about those too. Were you confident? Comfortable? Blissful? Or were you a mess like me? Somewhere in between?

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