Dragon Mom: The Teenage Years

dca4aa8ed71d92788f1eea3f4582ecb4

Darling Boy was released from the hospital a week ago and I have just about finished recovering.  He got two operations for the price of one.  Apparently,  his risk of anesthesia is higher than normal so giving him 2 operations seemed the safer way to go.  And of course,  medical personnel always make the procedures seem so easy.  It’s only a g-tube placement, it will take ten minutes.  It’s a tonsillectomy,  kids usually go home on the same day.  I understand that this is normal when you work as a surgeon: yanking out tonsils and placing g-tubes are all fun and games for them.

When we discussed the surgery at pre-hospitalization check-ups, the E.N.T. doctor assured me he would be put in Pediatric Intensive Care Unit to monitor him overnight as he may have problems with his airway after surgery.  Then the G.I. doctors said we would be hospitalized  2 or 3 days so we could  learn how to work the g-tube.  Somehow, I thought that was slightly optimistic.  And. of course,  I. WAS. RIGHT.

The G.I. team came out after surgery and said everything went swimmingly.  They even gave me pictures of the surgery.  The G.I. team told us to wait in the post surgical area and the E.N.T. doc would be out to see us.  At about this point, the anti-anxiety aid (klonipin) I brought kicked in and I fell asleep on Lovely Husband’s shoulder.  I woke up to drool coming out of my mouth and a very concerned nurse telling us to get to the P.I.C.U.  We were all like, no, they told us to wait here.  And she was all like, we need you in the P.I.C.U.  Whoah!  So we followed her to his room and he was flipping out in only the way that my Darling Boy can.  Because he’s non-verbal and non-ambulatory doesn’t mean he can’t express himself. He was thrashing around the bed because he was in pain and he didn’t know anyone in the room. He was literally trying to launch himself out of the bed,  Lovely Husband named it the Flying Squirrel move.

The thing with kids who are non-verbal and intellectually disabled is that they are aware of what’s going on around them but can’t always understand it.  He calmed down as soon as Daddy put his arms around him and told him to calm down. .  All went well until shortly thereafter he had a little problem breathing.  They had to knock him out to get his breathing under control but he was on air room after that. My Lovely Husband and I then started taking shifts: one  of us  sleeping while the other kept him comforted. That night he needed a nebulizer treatment and  oxygen. He was on various pain meds but was still waking up in discomfort.  About 4  A.M. he woke up and inadvertently ripped out his oxygen tubing while he thrashed around in bed.  At that point, I asked the doc ( who looked like he had just graduated from 7th grade) if D.B. could have some morphine.  That did the trick and he was able to rest peacefully for a few hours.   We had no more airway incidents after that.

We were in the P.I.C.U. for 4 days.  We didn’t need the docs so much as we needed the 2-1 nursing ratio.  First, we had problems with him tolerating feeds.  Then we had to load him up with twenty billion ways to make him poop.  ( The constipation post-surgery wasn’t allowing him to tolerate even pedialyte.) Through every step of this process, the doctors explained what was going on and planned the next step. It’s fun doing rounds with first year residents when you can answer the attending’s questions faster than they can.  They always consulted with us  because we know his baseline.  There was no way either the Lovely Husband or I could leave him for those first few days.  We are his comfort and his voice.

dc3f39bccc58d37b75e596172d43a838

There are times when well meaning social workers and counselors will tell those of us in this situation to just go home and get some sleep.  I know there are people who don’t have the luxury to stay at the hospital 24/7 because of their family situations.  Fortunately,  I have good friends who took care of the Twins while all this was going on.  But even if I had to stay and Daddy went home to take care of the girls, there was NO WAY I was leaving his side.

After things calmed down and we were on the step down unit, I snuck out of his room while he was sleeping and went to the Parent room.  While I was surfing the Interwebz, I met a lovely woman whose 16 year old daughter was in the P.I.C.U.  She had come to the Parent room to get some laundry done.  We started talking about our children and her daughter has the diagnosis that we were looking at for Darling Boy.  She is also non-verbal, non-ambulatory and has seizure disorder.  They had come in to check out a ketogenic diet to see if it would help her seizures.  She ended up with a collapsed lung and was intubated.  This mom explained to me that she had finally organized a bed and breakfast weekend with her husband but now had to cancel it.  Her only saving grace was that her son (24 and his sister’s best friend)  had already taken off to care for his sister while mom and dad were away.  Now he was coming to stay with her in the hospital.  After about 15 minutes, I could see this woman getting twitchier and I said, “you have to get back on the Unit.” And she said, “yes, I can’t leave her that long.”

So I thought about the beautiful article about being a Dragon Mom.  The writer spoke about how her son was born with TaySachs and she was doing everything to enjoy every minute with him and whatever she could to comfort him through the worst parts of his illness.  And then I thought about those of us who are long-term Dragon Moms.  We fight for the right educational placement.  We fight the insurance companies for everything.  We hold our children and comfort them when they are getting the 8th stick in about a 2 hour period.  (Darling boy has fragile veins.)  We do not leave their sides when the going gets tough.  It’s not because we don’t trust the medical professionals. That’s not it at all.  It’s the fact that we know all our children’s idiosyncrasies and what they mean.  We know the difference between the retching cough that means vomit and the upper respiratory cough.  We know which songs will calm them down.  We know how to hold them and rub their backs.  It’s our voices that calm them and no one else.  It’s not an easy job but what else is there to do.  And when well meaning professionals tell us to take a break because we are twitching a little too much, it goes in one ear and out the other.   I don’t care if they think I’m overprotective and batshit crazy.  They will go home from their shift but my shift doesn’t stop.

And despite the depression, the continual stress, I love Darling Boy so fiercely that  I am on fire with my love.  I don’t know how the muscular dystrophy will affect him as he gets older but eventually he will have breathing issues because that is the nature of the disease.  As I come to terms with this part of the diagnosis,  I try to take each day and celebrate something little.  He slept well last night.  He’s eating well today.  Since the g-tube, he’s been stronger and sitting up like he used to.  My Lovely Husband is also fierce and protective about all of Darling Boy’s care.  There are other parents who have a child on palliative care or are waiting for an organ transplant.  We will stay by their sides and celebrate the good days.  And we will thank our friends for helping us through the bad ones.

Dinner and a Movie

 

Image

Who doesn’t love a minion? photo courtesy of walleh.com

When Darling Boy and his sisters were younger,  the 4 of us would go on many adventures.  Every summer, we would pack up the car and go to the local swim club.  I may have had 3 toddlers to watch, one who couldn’t walk, but we were out in the sun and enjoying the water.  I am still mad that they sold that swim club and built a restaurant there.  

 

When Darling Boy was 7, we would drive 45 minutes out to the country  and he would get horse back riding therapy while the girls and I played in the waiting room.  Then we would go grab some dinner afterwards.  Every summer and fall , we would head to the local pumpkin patch and pick apples, go on hayrides and get our pumpkins.  It was some work, but fortunately for me,  the twins were really good at listening and staying close by my side.  I think they learned that as survival skills; a brother with a disability keeps you on your toes.

 

The past 2 summers have been different.  The problem is twofold: D.B.’s getting bigger and not so easy to pack in the car and run with him and he’s really adversely affected by the heat and just can’t be out in it. Also, when we’re out with Darling Boy and he needs to be changed,  I have to find a place to lay him on the floor on a blanket and change him that way.  So we really don’t go out for more than a few hours.

 

Today was like old times though,  I packed the kids up and we went to see Despicable Me 2.  D.B. sat in front and enjoyed the entire movie.  He laughed at the right times and didn’t scream once.  Then we walked over to the Mexican restaurant and ate some great burritos.  He only bit through one plastic spoon.  Note to self: bring own spoon next time.  He did scream while we were getting the food but this is normal.  He knows food is coming and he wants it NOW.  He did a great job and enjoyed himself.  His sisters were really helpful and I was so  happy to get a little bit of our adventure time back.

 

Getting Unstuck ( at least for now)

 

ImageI’m a teacher and have the summer off.  Usually this is  a happy time because I get to hang out with my twins and Darling Boy.  We used to belong to a pool but the stinkers sold it and now there’s a restaurant there.  My girls are older, which is good, but they want to do their own thing.  They have told me in no uncertain terms that there will be no educational field trips this summer.  Note: middle school girls are SO lovely.  D.B. is in summer school, so he’s still getting a good routine.  But this summer is different.  It started out with a vicious upper respiratory virus that had me on the couch for 2 days.  After that, I just never got the energy to start my HUMONGOUS LIST of things I should do because I am home all day.  Then I  got all worked up for D.B.’s surgery and it was cancelled. Finally, I realized that my depression had a depression and I asked a friend for her therapy group and began to make some changes. So here’s some of the things I’m trying to do to get out of this morass of feeling shitty.  

 

Started therapy: yeah, when the therapist asks why you’re there and you start crying, perhaps that’s a sign that one needs to be there.  I keep myself together as much as possible but this fairly new diagnosis is a bummer. It’s hard to see Darling Boy declining physically.  I know it’s not going to get better and that is pretty damn sad.

 

Going Away with a Traveling Companion.  (note the Dr. Who reference)  We didn’t take a T.A.R.D.I.S., but we did get away.  Also,  got to stay in a hotel room and drink red wine.   My nerdy self and said Traveling Companion went to a conference sponsored by CureCMD.  It was a family conference at the National Institute of Health that had the latest information on research to cure Congenital Muscular Dystrophy.

 

Connecting with families who are going through similar issues.  And with that,  learning how best to take care of Darling Boy.  I didn’t realize he would need a pulmonologist.  Silly me.  He now has an appointment with one of the doctors that presented at the conference who happens to practice at a Children’s Hospital very close to us.  Score!

 

Starting to eat healthy again.  I lost a significant amount of weight and gained it all back.  I am again committed to eating healthy and exercising because I know it’s the right thing for me to do..  It’s a bitch to take care of me when all I want to do is lay on the couch and read or watch TV.  Of course, I still do the normal taking care of Darling Boy things.  But then I’m all: oh, whine, whine, I just did all that work, let me have some me time.  I love to read and use this as a default to get away from my problems.  

So, that’s it for now.  Hopefully the therapy along with the good nutrition and exercise will turn me around.  What do you do when you need to get unstuck?

The Magic of the Interwebz

Image

photo website:http://www.paqoo.com

I started this blog to help me cope with the stress of dealing with being a caretaker of someone who has a chronic illness: muscular dystrophy.  The diagnosis of muscular dystrophy is only a little over a year old.  Before this, we had explored many different diagnoses. As someone with a rare disease,  Darling Boy has seen 3 different geneticists.  Finally,  D.B. had a muscle biopsy done in February, 2012.  It was sent to the Paul Wellstone Muscular Dystrophy Center at the University of Iowa.  After several months,  the verdict came back that he has an alphadystroglycanopathy.  It took almost a year to coordinate with our neurologist and U. of Iowa to get a skin biopsy done in January of this year.  His cells are being looked at to see exactly which genes are whacked.  Almost 6 months later and we still haven’t heard from the lab.  Apparently, it takes awhile to get this type of testing done. It still may not give us a definite diagnosis but it’s so good to be able to name what he has.  There’s a lot of power in that.  I always think of the fantasy book, The Wizard of EarthSea by Ursula K. LeGuin.  The wizard learns as an apprentice that there is power in knowing the true name of things.  I think there is power in knowing the correct diagnosis.  Even if the prognosis isn’t great, at least you have a name and can connect with people who are going through a similar experience.

So we learned that Darling Boy has an alphadystroglycanopathy; a form of muscular dystrophy that has different permutations.  D.B. formerly had a diagnosis of Ataxic Cerebral Palsy.  The difference between Cerebral Palsy and Muscular Dystrophy is that Cerebral Palsy results from a brain injury that causes physical impairment. There may be changes as the child grows but the brain injury is static.   Muscular Dystrophy is a genetic disease that causes physical regression such as the loss of walking, talking and even the ability to breathe. In Darling Boy’s case, he has never been able to walk because he had balance issues.  But he was able to do everything else: roll over, sit up, creep, crawl and cruise on furniture.  Gradually, he lost his ability to pull to stand and crawl.  He was always a good eater and had no problem with chewing.  Then about 2 years ago, he was diagnosed with dysphagia and now needs to have a chopped and blended diet to keep him from aspirating his food. These changes were indicators that he had more going on than Cerebral Palsy.

Anywhoo, after my friend, stark.raving.mad. mommy shared my post about how I just can’t stand living in Holland,  I got an e-mail from someone who’s kid has the same thing.  It’s amazing and magical how the internet can be a venue of support for those of us who have these kids.  She and her son are the first people I met, albeit virtually, who have the same diagnosis as D.B.  She sent me a link to her blog site and we have corresponded several times since then.  She also told me about this organization called Cure C.M.D.  (Congenital Muscular Dystrophy) that is based on the N.I.H. campus in Bethesda, MD.  They are having a free family conference this Monday and I’m going and staying overnight.  That’s right,  staying overnight, in a hotel with a pool and room service.  My friend who’s coming to keep me company is bringing wine.   I will get to meet other families who are going through a similar experience to mine and listen to people who are researching congenital muscular dystrophy.

I would never have learned anything about this organization if I hadn’t started this blog.  Therefore, I think the interwebz can  be a magical place where strangers can share information and support.  It’s not just for snarky celebrity gossip sites!

ART AND DISABILITY

Image

This is titled self portrait. Doesn’t it look like he’s dancing?

Since my last post was somewhat of a rant, I thought I would post something that has been so positive for my son and our family.  Darling Boy goes to a school for children with multiple disabilities. All the students are in wheelchairs and have some degree of medical need.  It is both a day school and a residential placement. Students come from several different states to attend the school. It’s been in existence since the 1880’s and is on the cutting edge of how to use assistive technology.   The staff at the school has a dedication to these students that’s incredibly amazing.  They assume that these kids have something to say and do everything in their power to get it out of them.

These students also communicate through different forms of art: music, dance, theater and art.  Last year, Darling Boy got to participate in a play that was a collaboration between his school and a private school for typical kids.   It started 30 years ago when the private school teacher heard her students use the word retarded in a disparaging manner. She wanted her students to understand and be exposed to children with differences and that was the beginning of  working on plays that involved students from both schools.  The students from each school were partners in the play and so a beautiful tradition was born. You can see a webpage from his school that includes video on the play and art exhibition here. Scroll to the bottom of the page to get to the videos.

D.B. also has an art teacher who believes that everyone can do art.   She comes up with different ways that the students can use paint and make sculptures.  Her philosophy is to create art using what the student can do. Anything from putting a brush on a hat that to having them use their feet to paint, she gets them all to create beautiful art.  She says that each of her students are abstract expressionists.

Image

I have one of Danny’s art pieces hanging in my office: when I show it to students they find it hard to believe that someone who can’t move well did it.  As soon as I got his paintings home this year, I hung them around the house.  It makes me so happy to see his artwork hanging up. It’s something that he made with the help of his art teacher but it’s his expression. Danny uses his feet to paint because he doesn’t have great functional use of his hands.

Darling Boy doesn’t have many ways to communicate and interact with the world.  He is learning more about the world through the art programs at his school.  He has always enjoyed music but his new ability to express himself through painting is amazing.  My son comes from a family of artists; both his great uncle and uncle  went to art school.  My husband is quite handy with a pencil and my daughters each have an artistic flair.  (drawing manga characters is a big thing with the younger ones)  Since Darling Boy has been enrolled in his school, he’s now showing us that he inherited the artsy genes too.

I hope you’ve enjoyed viewing the video and seeing some of his art work.

I Effing Hate Holland

I Effing Hate Holland

tulips and windmills

There was a mother of a special needs child, Emily Perl Kingsley,  who wrote a beautiful story  about how having a child with special needs is not what was expected.  She compares it to being prepared to go to Italy and ending up in Holland. It’s  all about accepting what we are given and seeing the beauty in it.   But, I want it to be duly noted, that I  hate Holland and the Hallmark platitudes that go with this story. I didn’t ask to go here and sometimes I am kicking and screaming through the whole tour.  There are so many wonderful things written about the acceptance and gift of having a child with special needs.  While all of this is true,  there is very little writing about the anger and denial of dealing with having someone who is atypical.   And I’m pretty sure all of us are angry, hurt and bitter at times.

For instance,  I can’t stand when people brag about all their kids can do. I’m not going to tell them  to shut up but sometimes I just want to punch them in the throat.  I am still changing Darling Boy’s diaper and he’s 14. Once I got a letter from our state department of education informing me that Darling Boy tested in the lowest 1% of the lowest 1% in the standardized testing.  Nice, right?    I don’t care that you’re kid is making straight A’s.  DON’T. CARE.  a+ bear

I also hate when people tell me that I’m special and God only gives you what you can handle.  I call bullshit on that.  While I have a strong relationship with God and know that he gives me the strength to handle everything, really, I don’t think he specially picked ME to deal with this.  I’m only doing what’s in my heart and soul as a mother.  I will care for and love Darling Boy forever.  I am no more special than any other mom.  And news flash,  there are plenty of kids with disabilities who are given up for adoption.  Several years ago in Philadelphia, a young girl with cerebral palsy passed away from starvation under her mom’s care.  So let’s cut the myth that special kids are given to special people.

There’s another layer to this anger that I am spewing (and it feels so goood) Darling Boy recently got a diagnosis of muscular dystrophy.   He is slowly losing physical skills which started out when he was about 18 months but  things have gotten worse in the past couple years.  He can’t always sit up and he’s having difficulty swallowing. Think of Stephen Hawking in his wheelchair.  He started off with all his physical skills and now is in a wheelchair and using a computer as his voice.  He has ALS,  a form of muscular dystrophy also known as Lou Gehrig’s disease.  We don’t have a definitive diagnosis yet but it is an alphadystroglycanopathy.  Duchenne’s Muscular Dystrophy is a type of alphadystroglycanopathy.  That is a fatal disease.  We don’t know what this diagnosis means and if his time on earth will be shortened.  And that makes me pissed off.

So, here’s something to know about your friends who have kids with terrible things happening to them:  childhood cancer, mitochondrial disease, mental illness.  Just listen to them.  Let them rant if they need to. Please don’t say,  I don’t know how you do it because we don’t know how we do it either.  Try to give them a break, bring a dinner, babysit, take their other kids out on the town.  Bring your kids over to play and explain to them how my child just has a different way of communicating.  My friend’s daughter has Asperger’s and she can always figure out what Darling Boy is trying to communicate because she can hyperfocus on all his subtle clues.  It’s great when she visits.

And here is something that special ed teachers and doctors need to know.  If we come into a meeting demanding the world and being completely unreasonable, don’t get defensive and think we are crazy.  We are hurting and angry and sometimes we take it out on our team.  Please realize that we go through different phases in accepting the diagnosis.  And sometimes we’re just a hot mess.  Be patient and kind and don’t write us off as the crazy demanding litigious parents.  Help us to learn what our child can do, help us believe in the possible because sometimes that’s the hardest thing to do.    speech therapy

Thank you for listening to my rant.

Citations for Photos:

http://www.123rf.com/photo_19548715_traditional-dutch-windmills-with-red-tulips-close-the-amsterdam-holland.html

 

Oh, The Places I Go!

On this journey I go to doctors’ appointments,

dr office

And there we are given some disappointments

At first we saw developmental pediatricians,

From there we were on the road to diagnosticians.

Three geneticists and several neurologists,

I even  considered going to a phrenologist.phrenology head

For a long time no one could find a diagnosis,

So we continued the visits and then with a boom

The seizures got worse and we were in the  emergency room.

We went so many times I told staff we would be admitted,

They looked at me funny but they eventually submitted.

I go other places with my Darling Boy

T.o school events which he enjoys.

Shopping with his sisters he likes not so much,

especially if it’s a girly store like Justice.

He loves the outdoors if it’s not too cold or too hot,

He likes the Archeology museum a lot.boardwalk

He likes the boardwalk but not the beach,

With me at his side, there’s nothing he can’t reach.

To G-Tube or Not to G-Tube, That is the Question

To G-Tube or Not to G-Tube: That is the Question

 

Darling Boy has a  mild cold and he’s been coughing almost non-stop today.  This despite the cold mist humidifier, saline solution and benadryl.  He really hasn’t eaten much  either.  I just managed to get a little wonton soup into him.  Then he did his collapse- over-his-legs move.  It’s hard to describe but imagine sitting up,  taking a bite, and then your body can’t hold itself up anymore.  Wham and you fold over so that your head is down on your knees.  It’s not really conducive to eating.  I could put him in the wheelchair and strap him in but he doesn’t have the energy to sit up.  

 

This is when a g-tube (www.umm.edu/ency/article/002937.htm)  would come in handy.  That’s a tube that goes directly to the stomach so I can feed him via liquid nutrition.  I could also get all his anti-seizure meds in him and he can’t spit them back out at me.  Despite Darling Boy’s cognitive difficulties, he sure can figure out every type of food that I use to hide his meds.  I’ve taken to crushing them up and putting them in liquid.  But it is not the most accurate method because he will spit this out too. I can’t blame him,  the stuff TASTES LIKE CRAP.

 

Last year, his neurologist suggested a feeding tube and I must admit it scared me and made me feel like crying.  Here’s another loss of function for a kid who could eat like a man when he was younger.  He could chew and swallow without any difficulties.  One of the clues that we had to his muscular dystrophy diagnosis was the lessening of his swallowing ability. Last fall, he had a swallow study and he is now at risk for aspiration which could lead to pneumonia.  He can eat food chopped very small and blended foods.  Also, we have to thicken his liquid because if it’s normal consistency, it can penetrate the trachea and get into his lungs.  The loss of physical function is a hallmark for the muscular dystrophies.  Darling Boy has very slowly been doing this.  He’s been a medical mystery because he does move a lot but yet doesn’t have the balance to stand and walk.  He is a Wiggly Guy.  There’s always a body part moving, some he can control but most that he can’t  All this movement burns up a lot of calories thus the need for good nutrition.  He can also dehydrate pretty quickly when he gets sick because it’s so hard to get fluids in him. (Last year he was at the ER 3 times in 2 weeks for dehydration.)   Even though  he gained about 10 pounds and 5 inches this year,  he’s still a scrawny guy.   

 

There are pros and cons to having a g-tube.  The most positive being that he will get good nutrition and accurate medication dosages.  But there is also the possibility of him pulling it out,  Danny loves to pull on things and I’m afraid that he will get hold of it and pull on it.  I did find that there are belly bands that you can place over the g-tube for just this contingency.  Then there’s the surgery.   I really don’t want him to have surgery if I can help it.  Really, who wants surgery?  

 

Tomorrow if he’s well enough to see good old Dr. B, our brilliant neuropsychiatrist,  we will discuss this again.  At this point, I think I’m leaning toward the g-tube. It would certainly make his nutritional intake easier on days like this.  My Lovely Husband and I have  hashed this out throughout the past year.  We know it will be the best thing for his nutrition but we are scared that he will pull it out and be in pain.  I know this is a simple procedure and there are kids who play sports and have g-tubes.  But Darling Boy doesn’t fit into this category.  He isn’t aware of safety issues and won’t understand that pulling on the button could hurt him.  Although he’s very aware of his surroundings and I think he’s a genius considering the malformations in his brain,  he is still cognitively disabled.  And he’s strong.   So,  we will probably see a G.I. doctor soon to discuss this next phase of care.   I am definitely leaning toward going forward with the procedure.  But here’s the rub,  (you knew I would get that Shakespeare reference in)  it’s one more way to see how he’s losing function.  My Lovely Husband always says we get used to one thing and then something else happens that we have to get used to all over again.  There is no stability or getting better, now it’s about keeping him comfortable.  

 

In the long run, that’s what we’ll do.  Take everything into consideration and make the best decision possible for Darling Boy.  And if it turns out to be the wrong decision,  at least the g-tube can be taken out.  

Ack, My Birthday

It used to be that I looked forward to my birthday.  Back in the 60’s, we had those parties where all the girls wore dresses and the boys dressed up and we all looked forward to wearing the birthday hats.  My mom always made the special foaming punch with Hi-C, ginger ale and rainbow sherbet.    There were no TV related commercial themes: just cake, pretzels, potato chips and presents.  O-K,  we did play musical chairs and pin- the- tail on the donkey.

 

Then there was my sweet sixteen surprise party and turning 21 and officially becoming an adult.  I turned 30 in the Philippines when I was living there as a Peace Corps Volunteer. That was a fine tequila birthday on the beach by the South China Sea.  Now I am a woman of a certain age.  Yeah,  I don’t even want to name it because I am definitely in denial.  In my head, I’m still about 25 and it amazes me that I work with people who I am old enough to be their MOTHER.

 

My lovely husband never remembers how old I am.  This year he thought I was two years younger until I reminded him that will be his age this year.  And WHAT. WAS. I. THINKING when I had Darling Boy 5 days before I turned 40.  ( best birthday present ever)  Then I gave birth to twins when I was 41.  Now I’m the oldest mom in their group of friends.   God bless my young friends (again , I  am old enough to be their MOTHER)  they never throw it in my face that I can’t keep up with them.

 

This year my birthday falls on a Saturday and we are going to Longwood Gardens, a beautiful place created by some rich DuPont that has lovely fountains,  beautiful flowers and conservatories.  Also,  it’s incredibly wheel chair friendly,  the paths are paved and there’s even a wheel chair accessible tree house.  Darling Boy enjoys it there so much.   It’s very peaceful and colorful.  So, everyone take your allergy meds because that’s where we’re going today.


Question for the day:  what is your favorite nature place that is wheelchair friendly?

Miralax and Thickener

Miralax and Thickener

Warning: Do Not Read This If You Can’t Handle Talking About Poop

I just made Darling Boy’s dinner: chicken and green beans with some mayonnaise to fatten him up and blend it all together.  Yummy, right?  As I poured his Pediasure,  I thought: better add the Miralax and thickener.   And there it was,  the daily routine of life that I will never get used to.

 

Darling Boy has been losing physical abilities for a while now.  Last year, his swallowing ability put him at risk for choking and aspiration unless his food is chopped or blended and his liquids thickened.  On top of that,  his increasing lack of mobility has brought on the good old constipation that is endemic to kids with physical limitations.. You never think about the fact that walking helps to move our bowels but now you will.

 

So,  every day Darling Boy has to get his Miralax in or nothing will come out. When nothing comes out,  Darling Boy is in a lot of pain and begins the high-pitched screaming that was best described by my friend as something that could be recorded and used as a deterrent on an alarm system.  It could also be legitimately termed torture by the Geneva Convention. His teacher at school calls it whooping and we all know it’s his only way of communicating pain. But still,  it can reverberate through your head and has been known to cause  headaches in those susceptible to them.  I have been told by his GI specialist to give him Miralax every day.  I would do this, then he would poop copious amounts and I would stop.  Then he would get constipated and the whole cycle would start again.

 

His school held a parents’ night recently and I learned more about the constipation cycle then I ever wanted to know.  But I finally got the message:  make sure that poop comes out.  And so, the wonderful benefits of Miralax.  It makes the poop come out and has the added benefit of not having him scream his bloody head off when he’s in pain.  A good time is had by all.

Another part of the routine is thickening his liquids.  I really don’t do this all the time but don’t tell the feeding specialist.  Then when he chokes on his water, I think,  oh I forgot to thicken it and now he’s going to aspirate and get pneumonia.  Another mother fail. That’s the thing about having a kid with medical needs: the unending routine of care that you thought he would outgrow. Sometimes, I don’t put him on his futon when he’s sitting on the floor because he’s sitting up so well and not looking bad and then wham,  he has an ataxic spasm and folds himself over and cuts his chin on the hardwood floor.  Fortunately, I was raised by an Italian Catholic mom and am good at feeling guilty.

 

That’s what this blog is about: the daily routines that you never get used to.  Darling Boy is completely dependent for all his daily needs.  My husband and I like to call him The Prince Who Fell From Heaven And Landed On His Head.  ( I have often called my husband The Prince Who Fell From Heaven; given his Italian heritage and the special upbringing of Italian-American boys of a certain generation.  Hey Gina,  get your brother a sammich,  if you know what I mean.)

I love my son and that can never be said enough.  I hope to be a window on the world of living with someone with multiple disabilities.  It’s a challenge that I fight on a daily basis.  Hopefully, this blog will be a place to make connections and get inspiration.