Reflections

The next 8 weeks are going to be a new definition of Insanity for us.  Between surprise parties, prom, graduation, end of the season volleyball and vacation. However, it is in all this chaos that I try to reflect back at the beginning.  My life has been nothing if not interesting from the time I was little God has handed me things that I have yelled. screamed and thanked Him for.  When I got pregnant with Jon(athan) it was a surprise and a little like wondering if God had some sort of twisted sense of humor.  I mean Steven almost didn’t happen and here I was again in the same boat.  Thankfully God put amazing Doctors in my path who made sure I was healthy and did not repeat the struggles I had the first time around.

This child who will turn 18 in less than a week has always been a joy.  He loves his mama, where his brother loved to push buttons and limits and anything else he could Jon was quiet and fun with a smile that never quit.  From the time he could walk (and even before) the girls would follow him around.  He never fully sees just how cute he is!  Fast forward 18 years and I watch him become a leader in his job, volunteer with kids who adore him and love his girlfriend.  He will be taking his next steps in just a few short months.  Things are going to change for both of us.  Our relationship is going to grow and evolve and become one of more friends than parent/child.  He will always need his mom tho! And I will always be first, although I will try to not be ‘that’ mother in law 🙂 (no promises)

Today we are going to surprise him with a party.  Some of his friends, his brother and a few of our volleyball coaches.  Nothing huge, but hopefully he will get a chance to remember that he can still be a kid, and that for a moment time can slow down just a little.  I want the next 2 months to go SLOW. I want to savor every moment no matter how big or small. I want to take moments to remember this amazing little boy who isn’t so little anymore!!

Let Them Eat Dirt

So I grew up in the play outside until it was dark and only come home when your mom yells or calls your friends mom to see if you are there.  We played in dirty water, dug up stuff and just generally got dirty.  Today kids are kept inside and clean. It’s wash everything, lysol all surfaces and don’t let germs in!  But now that is changing, let them eat dirt, it will help their immune systems.  They will be healthier if you do this.  Well OK.. so we let Nicole play in dirt, we used to call her our dirt farmer. She would sit on the edge of the patio and make buckets of mud.  We let her eat dirt. Yet she’s still not healthy.

I am getting tired of the sweeping motion of just do this! Life isn’t that simple, it’s not as easy to let my kid eat dirt that isn’t going to magically make her better.  I am not sure what will do that, and my magic wand is broken (Talk to my clients).  So today, we are going to let her swing. Isn’t that close the same thing?  Oh and not make her go to school. So she is going to swing, and not go to school, sounds like good parenting to me !!

It happens

For those of you not in the Chicago land area let me put this blog into perspective.  Last week a toddler went missing.  For 2 days people looked, they searched ponds, fields and lots of areas before she was found in her home under (or in) a couch. DCFS had been on site that day investigating the family for neglect.  There was no action taken and police had even been there a few weeks before for a failed 911 call.  The house is said to be in ‘deplorable’ conditions.  I know there is more to this story than what we currently know, but people investigated and decided to not take any action. Why? We aren’t sure, and we may never know.
Today I read a post on a private FB page asking for prayers for a parent who is being accused of munchausen by proxy the doctors feel the child has Somatic symptom disorder.  Essentially they think either the parents or the child is making themselves sick.  I want people to fully understand that this scares the HELL out of me.  I have a child who has a disease that not very many doctors know of. I insist her Neuro call the ER prior to us going.  However, we still get the looks and the stares and the whispers.  The doctors aren’t perfect but when you are dealing with a disease noone has heard of it makes it even harder.  So you make choices, is it really that bad? Should we take her to the ER.  You go to your trusted group and you ask, “would you go?” Because in the back of your mind you know that this could be the one time that someone thinks you’ve gone too far.

For parents who have children with ‘normal’ stuff people don’t question you, if your kid has cancer and they are in pain, this is a big deal! They get the meds they need, but if your child has a disease modern medicine still hasn’t figured out then watch out.  You don’t know when someone is going to decide that your child isn’t really sick and that you are making them sick! We haven’t had anyone tell us ‘it’s all in her head’ yet, but I have, I have been told that I wasn’t really sick that it was ‘all in my head’.  Turned out, I had something that women have been dealing with for years and they now have a name for it.

I don’t write this to bash DCFS or any public group, but merely to say that this is a fear that many of us deal with every day.  Our kids are medically complex and that makes them scary to some doctors.  Add to the whole thing the human factor and you end up with a kid being pulled from their parents home because if they don’t then they sometimes end up with one that’s dead. I don’t know if the person who investigated either situation was right or wrong. I do know that I now have a plan in place if it happens to us.  I hope and pray it never does, but if it should I know what I will say, I know what I will do and I know where to go.
For now I am going to pray alot and hug my children really close today because you just never know.

The Road to Reality

Last night I had the opportunity to attend the annual Road to Reality event with Nicole.  I am again amazed at this experience.  From the kids to the adults to the several community organizations that participate I am blown away by the event.  This year was the first year that Nicole started to really understand what this event means, but what struck me even more was the fact that she was concerned for her friend who was part of our group. She made a point to stop and ask if he was OK and then expressed concern for him when we left.  She has such an amazing heart, and I know that God created her this way, but it still just blows me away.

The event last night was different, maybe because this was our 3rd time and maybe because last year Jon was the victim and I could still see him laying on the table ‘dead’.  The kids this year did a great job of portraying the accident scene, bedroom and finally the court room.  I felt that this year some of the scenes went longer than needed, the coroner was on fire and made a strong point but I felt he lost his audience at the end.

Overall the event was a huge success and I look forward to doing this year after year.

Another Successful IEP meeting

I have learned to not dread IEP meetings.  This was our first meeting for the renewal after getting the IEP 3 years ago.  Nicole no longer qualifies under the heading of being learning disabled.  She has grown tremendously in her academics and now is meeting or exceeding her test scores.  Her team did decide to keep her in the integrated classroom that has the special ed teacher in the classroom.  This will allow her to retain the support she needs.  She will continue to qualify under the OHI (Other health impairment) and eventually could get downgraded to a 504.  I don’t know that going to a 504 is really a bad thing for us since her accomodations come because of her health plan and not the academic piece.

The only thing that I didn’t get was the increase in tutoring hours. I was told this is a district issue and I need to take it up with the person at the district level. I will be emailing her today to request an increase from 1 hour to 2.  I realize that the intermitent homebound is meant for kids who miss a few days here and there and not 55 but for us this is our reality.

I think we are on a good path and have a good plan.  As always advocating for your child requires a balance of humor and prayer.  I have a good relationship with the school and I think that helps alot.  Not sure what highschool is going to look like but I am hoping that we can be successful.

It seems like only yesterday…

Wait was it only yesterday? OK not really but it seems that way!!  It has been 4 years since our faithful trip to the Mayo clinic.  I’ll never forget what her doctor told us “be prepared for them to not find the answers”.  I think I was pretty much head in the sand when she said that.  So I spent weeks gather medical records and copying stuff to spend 2 weeks in what Tony still refers to as the ‘Disneyland of Doctors’.  Was the visit a total success, not really but it wasn’t a huge failure either.  We got scans and blood work (so much blood work) and finally after 2 weeks and 2 sleep studys we were told your daughter could have this thing called POTS you need to stay until Monday for us to confirm.

I told the very nice and VERY old neurologist that we were going home and he referred us to a doc at childrens.  We made 2 appts with her, and canceled both. Her staff was rude, her reviews were terrible and I just didn’t want to think about it.  It would be the next summer before I looked up this disease and then did so many poor man tilt table tests.  Nicole would cry through all of them! Mom, my legs hurt, they itch, I think I am going to passout, I need to lay down.

It was then that I did some research and found Dr. Barboi and the POTS Facebook page.  I’ll never forget walking out of Barboi’s office with the official diagnosis.  I kept telling myself this can’t actually be what is wrong with my child.  This is what she has?? It is, and that has been confirmed by several doctors.  And it all started with a very long, very exhausting trip to Rochester MN.

Would I do it all again, I can’t really say for sure, but I can say that struggling for 10 years to figure out what is wrong with your child is nerve wracking.  It’s terrible having doctors tell you there is nothing wrong and that she will just ‘grow out of it’.  We know now that she won’t and we pray that she will learn to manage her symptoms.  Summer is best for us so we are looking forward to a few symptom free months.

The bottom line is there is hope! There are answers, you just have to dig for them. There is a saying on Facebook that a mom with a sick kid does better research than the FBI, I am quite certain this is true!  You want something found out, have a mom with a sick kid do your research.  We will pour over every detail ask every question and won’t stop until someone tells us the answer.  I know parents who are still waiting for answers for the medically complex child.

All I can say is that today is an anniversary I wish didn’t exist, but I am thankful it does.  Today I have a child who is on a cocktail of meds that keep her functional and for the most part of out bed.  She rides horses, sings and gets to hang with her friends for that I am thankful!!

Be the Teacher

In one of my family’s all time favorite Spongebob Episodes, SpongeBob teaches Squidward to “Be the Crane” and win in one of those crazy crane games.  Today, I met with Nicole’s teachers regarding the amount of days she’s been missing and a very smart mom said to pretend I am the teacher and I am teaching them about POTS.  While I didn’t get this advice until after my meeting this was pretty much what I did.

When you go into a meeting with your childs school it is generally NOT a good thing. They don’t call meetings to tell you, your child is amazing and they want to send them to space or move them ahead by 2 grades.  These meetings are generally, your child did something wrong and we need to fix it and by we, they mean you.  I have learned after having these types of meetings for 12+ years that what I need to do is pray before hand. You see this isn’t about me or my inability to parent.  This isn’t about me as a parent at all, it may feel that way, honestly this is your kid and you are probably pretty proud of him or her.  However, the school is trying to do 2 things, first is get your kid an education and 2nd follow the rules they have to follow. Whether we like it or not our schools our governed by a bunch of dumb rules that they have to follow.

What I have learned over the years is to acknowledge that they have to follow these rules, to question them when the rules seems invalid and to do all of these things with a sense of apprecation for them.  I don’t go into these meetings guns blazing ready to tell the adminstrator that they are so wrong and my child is the best darn thing since sliced bread. (I mean she is but hey!) I go in humble and ready to listen.  If something isn’t adding up right, I ask questions and will ask that they provide it to me in writing.  See here – this is so simple, if the administrator is wrong (yes people they can be at times) then they can save face. They can go back and say “wow I guess I didn’t understand the rule” or my personal favorite “we’ve decided to suspend this rule for now” (in other words, it wasn’t a rule but if we say it wasn’t then everyone will want it).

The take away is that they are people, who have feelings and lives and jobs. They take their job seriously and personally.  They want to be the best at it, just like you do and they get told day after day that they are terrible, they can’t do it right and they just plain suck! If we take a moment and go in as teachers, asking questions, pushing back nicely when we need to and being – gee I don’t know – adults – things are going to go so much better. Now this doesn’t mean that I am not going to fight for all the rights my kid has because I will.  I will fight for alternative school days and modified schedules 🙂 But I will do so with the information that the school needs so that when it comes down to it. I will have the documentation if they DON’T do what I need and maybe, just maybe they will.

 

 

 

 

The light on the other side

Most of you have heard me talk about the spoon theory.  The theory that says you have so many spoons each day and once you’ve used them up they are gone.  You can’t replenish them until the next day.   When you have a child in a full blown musical, it takes ALOT of spoons.  She’s used mine, her dads and her brothers. I think she may have even gotten some from the dogs!  This usage of spoons causes problems, like not going to school and sleeping 12 hours a day.  Well after 4 days of tech week and 3 performances packed into 2 days, I think we are finally back to our normal day to day spoon usage.  However, there will be another spurt of borrowing spoons because, well we like to push.  Let’s see how far we can go this time!

The good news is that she’s laughing and smiling today, altho we are still crawling most places.  This is an improvement from simply not being able to get out of bed.  Are we going to try to shower? Hell no!  That would take more spoons than we have.  We will probably NOT go do school tomorrow, but Thursday and Friday look good.  And today we even got our hair combed and dressed.  This is an improvement from yesterday when we barely got out of bed.

POTS is fun this way, everything can seem so normal, but on the inside its like running a marathon.  I read this today “POTS is like running a marathon on cobble streets while its 100degrees out side and you are wearing a snowsuit AND you have the flu”.  That isn’t an exact quote but you get the idea. So today we are going to the store, that will be our ONLY outing today, tomorrow we may go to StuCO and then on Saturday we’ll do it all again.  But then the musical will be over, it will have a whirlwind of 4 months.  But let me tell you it is so beyond worth it! To see the joy on my childs face while she does something that she loves is priceless. So if it means borrowing spoons from EVERYONE then we’ll do it and we’ll do it again.  And we’ll do it as many times as my child wants, because this is her JOY!

This is the Face of Chronic Illness

Nicole

This is the face of chronic illness.  This is the face of a child who performed 3 shows this weekend that included singing, dancing and just plain being awesome.  This child didn’t waiver one time, she pushed through even when you could see the exhaustion on her face.  She was amazing. They were all amazing!  I could not be more proud of her than I am today.  The downside of this is that she is sleeping today. She will go to her choir concert tonight and she will sing again. Then this weekend she will do 3 more shows and attend a concert.  Life is about balances and she is doing great!