Finding Their Own Beat

If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.  -Henry David Thoreau

We all dream big dreams for our kids.  I'm no exception.  When you sit and gaze lovingly over your child's cradle, watch them play, and dream about what amazing things they are going to do.  Your son picks up a bandaid and you see a doctor.  Your daughter draws that first picture and you see the next O'Keeffe.

What happens when your dreams crash with reality?   What happens when your dreams don't match up with your kid's life?

This is what my struggle has been these couple of weeks.  Trying to find new rhythms in our life song.  It's been hard for me.  I don't like watching the kids struggle. I don't like seeing them fail.

When your son says that he can't keep his homework straight and the words swim and the tears fall. When your daughter can't go to the super awesome program that you've been on the waiting list for two years for because her body isn't strong enough.

I hear the words of Marvin's doctor in my mind, "It must be so frustrating.  He's smart but the doors are locked in certain areas of his mind and the key is always three steps beyond his grasp."  Cary Lynn's dev ped pretty much says the same thing every visit, "Her mind is there and it's trapped in a body that refuses to let it be free."

I've gotten used to letting things go, it's just a fact of life.  But it doesn't make it sting less.  My kids will always struggle more than most kids will.  But they have their own paths to follow, not my path. My path would take away the challenges and obstacles that they need to equip them.  To make them strong.  They need a chance to travel their paths, not mine.  Their paths will teach them strength, grace, humor, and courage.

They won't be easy paths, life never is.  But they won't have to travel alone.  I'll be right there with them.  Stepping to their music and finding their unique songs.

Twice Gifted

It's a term that makes me cringe.  One that I hear quite a lot when it comes to Marvin.  Twice gifted. The more common term is twice exceptional.  It means intellectually gifted children who have some form or forms of disability. These children are considered exceptional both because of their intellectual gifts and because of their special needs.

This week I sat down at UVA with a neuropsychologist.  Marvin has spent several days testing at her office and I was ready for the results.  What was supposed to be a 30 minute follow up expanded into 90 minutes and she ended up being late for a meeting.  But there was just no way to condense the results into a short and sweet package.

She started off with what she calls the "good news".  Marvin has a normal IQ.  He also tested average or in several cases above average in the learning department.  She (and Marvin) credit homeschooling and his reestablished love of learning.  The Dr. says he is super smart and tries really hard.  That was good to hear.

But she stated, for every strength there were strong deficits.  She went on to explain how brains are supposed to work and areas that are supposed to do certain things.  She went on to explain how three events reshaped Marvin's brain and in some cases destroyed vital connections that are essential.

Marvin was exposed to Meth in utero.  He was born addicted.  Strike one.  Then he he was shaken resulting in Shaken Baby Syndrome and seizure activities.  Strike two.  Then he was placed in foster care and had trauma and stress of non permanent situations until he came to live with us.  The longer you stay the more trauma.  Strike three.

What does it mean for Marvin?  Well it simply means that even though he's smart his brain sustained a ridiculous amount of damage.  Unrepairable damage.  That part hurts.  I can't fix it.  For years we have tried to "fix" Marvin.  Having a Dr. tell you you can't make it better cuts to your very soul.  I'm a fixer.  That's what moms do.  But sometimes you just can't and you have to learn to go forward with what you have.

Marvin will have to learn adaptation skills.  We will have to teach him how to work with what he's got.  Marvin has already subconsciously learned some skills.  He will have to have stuff broken down into manageable pieces.  We also will have to have more therapeutic and medical intervention. Marvin gets caught in loops and can be inflexible.  He then has triggers and emotional meltdowns. Intensive therapy will help teach Marvin coping skills.  Additional OT will help with fine motor adaptations.  Marvin may also require in home therapy.

The Dr. found that Marvin is struggling at school.  Yes, he is back in school.  He wanted to try.  We love where he is and it has a special place in my heart.  The Dr. has a large list of modifications that will need to happen there as well.  We spent a good amount of time talking about how great alternative schools are (she grew up Waldorf) for kids like Marvin.  But she also advocated for homeschool and said she believed that Marvin learns best one on one.

When I left I felt totally overwhelmed and sad.  And angry.  I don't think it's fair that he's had to have gone through so much.  When the Dr. tells you that your child will always be harder to parent than the average child and lots of people won't understand how complex his needs are it's a huge punch in the gut.  I went home and had a good long cry.  Then I binged on chocolate and chick flicks.

Right now Shannon and I are wading through it all.  Here's what I know.  Marvin is still Marvin.  Just because we know more now doesn't change who he is.  It does help me be a better advocate for him. He's an amazing kid who lived through a lot of crap and came out scarred and battered but still victorious.   He won a huge battle by thriving.  Most kids who go through what he went through aren't as lucky.  He has a family who has his back and loves him unconditionally and will advocate for him fiercely.  Just because he had a rocky start doesn't mean he will have a rocky finish.  We will continue to stand strong together and we will overcome.

Feeding Tube Awareness 2017

During this week in February we take time to bring awareness to the fact that are multiple ways of being fed.  My daughter will be coming up on her third year Tube-iversay in a few weeks as well. The decision to place a tube in my child not only gave her the ability to grow and thrive, but also gave her something so much more.  It gave her freedom from pressure and a chance to make her own choices about how she eats.  Let me take you back and share our journey. 

When she first came home at nine months old Cary Lynn was bottle fed.  Sure she was a little slower and needed to eat more often but she enjoyed her bottles.  I loved watching her smack her lips and grunt as she slurped.  

Then we ended up in the hospital.  She was pretty sick.  While we were there I met my first feeding therapist.  She immediately didn't like the bottle I was using.  Said it was too hard for Cary Lynn and took too long.  She found us new bottles.  Therapeutic bottles.  O.K. that wasn't horrible.  Cary Lynn adjusted and soon ate with her new bottles.  Then we met with a new G.I. who complained she was too small.  

"Are you ready for a G-Tube and Nissen?"   Ummmm no, she eats.  He wasn't thrilled but said O.K. you need to go to nutrition and feeding clinic.  So I took her, therapeutic bottles and all and we went to feeding clinic.  Because that was what the Drs. said and frankly I was worried about her.  We had only had her home for a little while and we seemed to be making frequent pilgrimages to the hospital. We also had a tube that went from her nose down to her stomach (an NG tube).  She kept pulling it out and chewing it up.  Gross.    

So we went and the people who assessed us were nice.  Cary Lynn ate and threw up everything on the nurse.  Up till that point there was a waiting list.  After she barfed everywhere they had a magic space open up.  We started next week.  

I was so excited!  She was going to eat!  I was going to put some chunk on her!!!  Yay!!  I tried to get Cary Lynn excited too.  I told her about how much fun it would be.  There would be bubbles, stuffed animals and she would eat.  She just grunted and went back to her bottle.  

When we started the first thing they did was tell me the bottle had to go.  I protested, saying that she loved it.  They gave me a bottle that hair dressers use to put coloring in with food safe tubing.  It looked like a hamster bottle.  I told them that.  They didn't like it much.  

They showed me how to squirt it in her mouth.  Cary Lynn didn't like it.  She whimpered for her bottle.  We managed.  Then we went home and I fed her bottles. 

Next week she did better.  I rejoiced, went home and threw her bottles away.  That night after four hours of crying I dug one out that I hid just in case.  I told the therapists that she wasn't ready.  They said she could and I was being difficult.  So they kept working with her.  She finally took the hamster bottle.  We were finally able to throw away her bottles.  

All during that time her weight see sawed.  It was up and down.  There was a lot of pressure for a tube but she was still eating.  Every Dr. only talked about the tube.  But she ate.  And she was happy eating.  

Then feeding clinic wanted to start on food.  They showed me how to make purees that had more calories.  It was fun.  I learned quickly.  Cary Lynn didn't get the memo.  She balked.  Some days were good days.  We had to have lots of meals.  She had to eat about eight times a day.  She also started refusing.  

Our feeding program is behavior based.  Eat a bite get TV.  Eat a bite get bubbles.  Or music or a sticker.  The problem was and is Cary Lynn has visual impairments.  So that stuff didn't mean a lot to her.  She started to wave her hands in front of her face and put them over her mouth.  The feeding therapist took her and tied her arms down.  That didn't go over well with me or Cary Lynn.  

After I threatened to call CPS she was untied.  Cary Lynn kept her arms down but every bite of food was spit out into the therapist's face.  Cary Lynn was shaking violently and turing purple.  We went home early.  

The next week we were getting ready to go back.  I was telling Cary Lynn where we were going when I heard her make a noise.  I leaned over to look at her.  Her lips were shaking, her eyes were wide with fear.  Her body trembled uncontrollably.  My kid was scared.  

Eating was no longer a fun thing for her.  She had begun to dread it.  Every meal was a nightmare. The therapy that was supposed to help her robbed her instead.  I had hoped for so long that some magical cosmic event there would get her to eat.  In following what I wanted I wrecked what should have been a beautiful and organic experience. We called out.  

The next day I went to her G.I. doctor and told him we were ready for a tube.  Three weeks later she had a tube.  After she had a tube we were "discharged" from feeding clinic because she "never had to eat again orally".  Frankly, I will never take her back there again.  What they did was wrong and I would be wrong to allow it to happen again.  

Now my daughter eats with a g-tube.  As much as I fought it that tube is one of the best things I've ever done.  She's growing and gaining.  She also has started eating orally again.  Because she WANTS to, not because she HAS to.  Her G-Tube has given her freedom in that department and she can approach food on her own terms.  We don't stress anymore.  Cary Lynn's happiness over discovering frosting, chocolate, and bean burritos all over again have made waiting for her to be ready all worth it.  The G-Tube has allowed us that privilege.  And for that we are grateful.  Happy Feeding Tube Awareness week!

Five things I need you to know about having an immunocompromised child

Aaahh-choo!

The woman next to us lets out a big sneeze and doesn’t bother to cover her nose. I was in a bind because my daughter’s nurse was absent and my son had to be at his appointment. The very thought of those germs made me twitch. Luckily, we were able to move to a different area after a staff member who is familiar with our family saw the events unfold.

This is our life. My daughter is immunocompromised. In a nutshell it means that a person’s immune system is weakened or absent. A person who is immunocompromised is less capable of battling infections because of an immune response that is not properly functioning.

We aren’t alone. There are about 10 million people out there. That’s a pretty steep number.

Why are infections dangerous in immunocompromised patients?

The usual symptoms may be absent. Patients with weak immune systems may not show the classic signs of infection.

Also their systems may not respond quickly to infection. Patients with weak immune systems may have trouble clearing infections from their bodies. The infection may also move quickly. In the absence of infection-fighting white blood cells, the infection may rapidly progress from fever alone to sepsis and death. Not something you want to play around with. So here are a few things to keep in mind as we head full force into cold and flu season.

1. A little illness can become a big deal. That cold that you have, the stomach bug that only lasted 24 hours on your child, or even that little sniffle can become a really big deal. An immunocompromised person can’t fight those bugs off the way you or I can. When my daughter becomes infected, a simple cold can last well over a month. A stomach bug buys us a week in the hospital. A sniffle leads to another round of antibiotics. It’s not fun.

If you are sick the best thing you can do is stay home. I know it’s not easy and I can see you rolling your eyes at me. I worked at a job that demanded I come in with a stomach bug. What’s worse was it was a daycare! The assistant manager didn’t care that I was sick. She claimed there was no coverage. So I exposed lots of people. I’m well aware of the reality. So I started wearing masks when I was forced to come in ill (and I found a new job). So if staying at home isn’t an option, trying to quarantine yourself and taking extra safety precautions is your second best bet.

2. Don’t touch them! This one is important, too. I have been in grocery stores, libraries, waiting areas and lots of other places. People feel the need to lay hands on my child. I know she’s cute, but your germs are too big for her body. Plus it’s her body. She may not want you to touch her. At home we wash frequently before we touch her and we are her family. This helps her stay well.

3. Our families may have to do things differently to keep them well. When my son started school, my daughter’s medical team sent home a list to help keep her well. It was a long one. These things aren’t always fun for my son but he knows we have to do it. We also have to step up hand washing, cleaning, and there is a sign hanging on our front door that asks you to remove shoes and wash and sanitize your hands. Some days it gives me a headache, but these things matter.

4. We can’t always go to large gatherings and typical places. I’d love to go to every reunion, bounce place, and pizza party zone. But we can’t. Please don’t be offended if we can’t be there. We want to and we will miss everyone. But these places carry hidden dangers for our loved ones. We may need a smaller gathering or a different meeting place.

5. Don’t tell the person how bad you feel for them right to their faces. They probably feel bad enough that they are missing out. My daughter may not care, but I do. Having been able to take my son to places and have her miss out isn’t fun for me. Instead of listing all the stuff they are missing out on find way to include them! It may take a little more creativity on your part but it’s so worth it. One of the best memories I have is of a good friend bringing her child over here with a few party trinkets and some cake to have a second birthday party so my child could participate. It meant a lot.

I’m sure I could come up with more. You may even have ideas too, but this is a start. We can make things better for our loved ones who are immunocompromised and keep them healthy and thriving.