A Sunday of Tears

A Sunday of Tears

Where to begin?  My daughter had someone hurt her today..  apparently because she is autistic.   Seeing my sensitive, tender-hearted daughter crying because she has such a hard time making and keeping friends upsets me.  All kids have trouble, but I am here to tell you that it is harder for kids who are special needs.  And it's not always the other children.  Sometimes it is the parents.  Ignorance abounds, and it is so, so sad.

It took another mom, (God bless her!) to help me to realize I need to be my daughters playmate.. I knew this of course, but sometimes we just 'need' to 'hear' things, to 'ring that bell' in our brains.  Thank you dear lady!

I have heard that Padre Pio could 'read souls'.  I am wondering if our own Fr. Sal is the same?  After mass we chatted a few moments with friends, and seeing the priest approaching, we were going to just quietly slip out so they could talk.  He stopped us.  Not a word, but called us over.  Looks into my daughter's face, and asked her if she was okay.  She responded she was fine, but had had a "bad morning" but it was better now.  Father Sal told her that when she was sad, she should pray to Jesus and His Mother, and ask them to help her and they would.  Then he hugged her, kissed her face, and told her he loved her.  The floodgates opened.  My daughter wept her little heart out.  I was moved to tears watching the kindness of this dear man, and my little girl.    So afterwards, he made her "pinky promise" that she should call him any time.  Dear, dear sweet man.

So then he turns to me, looks into my eyes, and asks me if I'm taking care of myself.  "I'm trying to..."  He tells me, "You must.  It's important..." Gives me a couple of big hugs and kisses me  (sweet, Grandfatherly old Italian man who always kisses ♥ LOVE HIM!) and then he says it.. he looks into my eyes, like he's looking THROUGH me, and says, "Please open yourself to Jesus".  That's when I realized I'd been "holding my breath" with Jesus..  Father knew.  I don't know HOW he knew..  *I* didn't even know..  Robyn and I were mopping tears all the way out to the car.

Tonight I was reminded about the baby bottles we're supposed to be filling with change for Emergency Pregnancy Services.  This is dear to my heart, so of course I'm happy to save/collect change "for the babies".  So I'm home filling this baby bottle with change, and I look at the slip of paper inside, and it says you can donate the money "in memory" of someone.  

Stephanie

This November will be 8 years since my beautiful 36 year old friend died suddenly, in her sleep, with no warning.  I think of the three babies she lost, and I believe in my heart that now she is with her babies in Heaven..  

I don't know what made her pop into my head.  Her.  Her babies.  But it's been almost 8 years and I swear the pain is just as fresh today as it was the day she died.   I grieve her babies I would have loved like my own children, the way I love my nieces and nephew.  I grieve all the things I said or didn't get to say.  That I didn't get to say goodbye to her.  That she's still in an unmarked grave pains me in a way I can't even describe.. I've even called the cemetery and sobbed, begged, and pleaded if I could get some kind of marker for her..  anyway... I can't shake her tonight.. I miss you Steph.  

Tonight I weep for friends and babies taken away too young and too soon.  For special needs children who feel lonely and friendless... and for sweet loving clergy who comfort us and pray for us all.  Pray for the religious...  they have such a burden to bear..  

God bless them.

Staying In My Catholic Bubble

There's a reason I stay "in my Catholic Bubble".    Out there?  In the world?  It stinks.  

I am having 'one of those days'..    the devil is breathing his 'stanky' hot breath all over me right now, and I'm in a funk.   I've had a few incidents of rudeness from different people.. who have totally hurt my feelings, but I didn't say anything.   I am weary of people trash talking our new pope, whom I LOVE and think he is a Gift from God... and sorry if you have nothing nice to say I'd rather you just not even mention it to me.

So, here is my compilation of the things done/said, where I bit my tongue, and tried to let it go.  

I do NOT worship Mary.  Or statues.  The Catholic Church is NOT the whore of Babylon.   No, I don't eat meat on Friday, and no, I'm not doing that just to annoy you.  

Yes.  I veil at mass.  No, that does not make me holier, nor do I think I'm holier than you.   Honestly I wear it for Jesus, and I promise it actually has nothing to do with you.  Really.

Yes, these are my pets.  Yes, the puppy is part pit bull.  NO, this does not mean she eats/mauls babies.  Yes, I can see how she is threatening to you wanting belly rubs and happily licking your hand.   Clearly she is a blood thirsty killer.

Yes.  These are my kids.  Yes, my eldest has ADHD, and my youngest is legally blind and autistic.  Yes, they know.  No, they don't need you staring at them.  No, I don't need your parenting advice.  And yes, I do home school, and have done so for five years.   No, they do not need to be socialized.  Clearly you do though, to ask me something so inane.   

For Catholics.... Sorry, I pass on the salad bar.   You cannot pick and choose what you want to believe.  You're either faithful or your not.  No, I don't want to listen to your arguments and 'why's.  That's between you and God.  You're not going to change my mind, and no, actually, I'm NOT a 'blind sheep'.   But for Heaven's sake, if you're going to dress like a hooker, and live like the devil, PLEASE quit telling people you're Catholic.  They might actually believe you. :(

PLEASE PUT ON SOME CLOTHES when you attend mass, and PLEASE stop talking through the entire mass.  Some of us actually want to HEAR the priest, and do NOT want to see all your "body parts" hanging out.  Really.

Other moms:   DO NOT talk down to my child, or I will show you first hand how "Westside" I can be.   Please do not cuss and carry on and tell filthy jokes in front of my kids.  Sure, they've heard bad things plenty of times, but as an adult, we need to be setting an example.  While I'm on the subject...  my youngest is in Special Olympics.   I don't want to hear the "R" word.   It is OFFENSIVE.

Now I need to just go have a good cry and get it over with... and tighten up my bubble walls.

Being Joyful

Twelve years ago, when my youngest daughter was an infant, she literally had eleven appointments a week, EVERY week, for two years.  Physical, Occupational, Speech, and Cognitive therapies, as well as vision services.  Because my baby was born a little different, as we all are in our own ways

Out of those eleven appointments a week, only two of them were conducted in our home.   All the other appointments, were down at the childrens' hospital, on the therapy ward they had at that time... with all the other special needs kids and parents.  Naturally, we made friends, got to know the other families.  My two girls spent so much time there, it never dawned on them that anyone was 'different'.  Even my eldest who was eight years old at the time we first started going, didn't bat an eyelash at a little friend who was born with her arms on 'backwards', with knees and elbows and ankles that didn't bend.  Many kids unable to walk, talk, unable to move at all.  But kids are kids... they readily accepted each other.  While my youngest was in therapy, my eldest would lay on the mats with kids who had NO movement.. none at ALL.. and she'd sing and chatter and read with them, and I would see their smiling faces and hear their laughter..  kids are kids.. it really was a beautiful thing. 

Dealing with doctors and therapists.... that was a hard time for me then.  My eldest who had just turned 8 years old had just gotten diagnosed with ADHD and ODD... and now I had just had this little year old baby girl too... and she was born legally blind, the myelin in her brain not fully developed, and autistic...  and for me, it was a lot.  I felt overwhelmed.  It was a lot to take in.   I wondered if I was being punished by God.  I wondered if I'd done something when I was pregnant to cause it.  Because, surely, this was my fault?  It had to be.  I cried a lot.  I felt pulled in a hundred directions.  Depression and anxiety were a daily thing for me.. but I kept going, because I had to.. I had no choice.  My girls needed their Momma.  Dinner still had to be cooked, the laundry washed, the dog walked and fed, and homework completed.  I struggled to find joy... it seemed to be hidden away from me.  And it felt permanent.

Looking around on the therapy floor... sometimes it was hard to not cry.   Severe deformities, diseases, illnesses, syndromes that I was not used to seeing...   I would try to smile...act normal... and then later I'd sob my heart out all the way home after our appointments after my kids passed out in the backseat.  How on earth did their families manage?   After all of the "why me, Lord?"... I had an epiphany.  "Why NOT me?"  Seeing the other kids who were severely impaired, or may not even live to see adulthood, made me realize how totally blessed I really was/am. God had given me two very precious gifts... my daughters.  And they are perfectly imperfect.  Exactly the way they are.   Two of the best reasons in the world to be joyful. 

My girls are now ages nineteen and twelve.  Last night I took my youngest to swim training for Special Olympics.  She still has very poor muscle tone, and is a slow, awkward swimmer.  Her legs spread apart instead of keeping them together, and she flails around as she tries to swim.  But she DOES swim!!  With a big smile on her face, she eagerly jumps into the water.   She may not be the fastest, but like her big sister, my girl is part mermaid... she loves jumping in the deep end, having fun, and then laying back to float... smiling up towards Heaven as she relaxes, enjoying the feeling of floating. And she is completely joyful in that moment.  

The Special Olympics is a God-send for us.  I absolutely LOVE that my daughter has friends who accept her, and she can play sports now... sports that she couldn't play before on a 'typical' team.  She isn't the 'odd kid out' anymore.  She is a "pea in a pod" with her team mates.  All that matters here is doing your best, and being brave enough to try.  They are friends.  They are actually pretty competitive, and they really, truly accept each other.  The Special Olympic athletes inspire me...   The volunteers I am so grateful for. God is GOOD!!!

Fighting For Your Child with Special Needs

Yet another step today in the continuing saga of getting a "diagnosis" for my child.  Yes she is legally blind.  And yes she is "on the autism spectrum".  Yep.  It's ice cream.  But what flavor?  Who knows. :(  And Heaven forbid they just test the child or send them to a doctor who specializes in that.  Nope.  You have to play their game.  Can I even remotely say how much their stupid game just STINKS? 

I heard from the Center today for folks with autism and related disorders.. they want me to contact every single solitary doctor/therapist/service provider she has EVER seen and get a copy of any and all records they have... and then give a copy of those to the Center before they can recommend a blessed thing.  Way to jump through some hoops! Bureaucracy at its finest.

Since one of the things required (they have insisted on) is any and all "IEPs"  from each year in public school. For anyone unfamiliar with what an IEP is, allow me to explain.  An IEP is an Individualized Education Program which is from the persons with disabilities act, and each special needs child gets one.  They update them each year, (or more often if needed), and set new goals for the semester/year. The idea behind the IEP is to tailor-meet the child's specific needs, and to help out the teachers and service providers.  Sounds good, right?  It probably would, if they did it right.  Instead it's more like cows getting graded at the fair.  Except I think the cows get more attention and looked at better. :(  And then when the schools lose funding, and classes/services are taken... the kids suffer.

Okay. (back to where I was) I called the last public school she attended four years ago, and after talking to the nice lady in Guidance, (and I think I should get points because I managed to not cry on the phone), they have all her IEP stuff and have it sitting up front for me to pick up!  Yay, that was easy!  Though, I maintain that she has not had an IEP since she was in public school and I took her out 4 and a half years ago so she has not had an IEP in all this time.   

Why they need these old things (the IEP) is beyond me.  She is not the same child she was then.  Not to mention that the folks "in the system" are not exactly the finest in their field, (shall we say?).   Some of them don't know their elbow from their backside, and I was not confident in them then, and I am not more confident in them now.  If they were that great, why don't they have their own practice set up somewhere?  I am thinking these are the ones that barely scraped through.  

I also called and got emailed to me the release forms from the Children's Hospital here.  So I am on track.  I think.  I just hope that this gets us a little closer to getting a good diagnosis, and go from there.  One more stepping stone in this journey.  My hubby pointed out to me today that I asked for this journey.  Yes.  I did.  I could have left well enough alone.   Let my daughter continue to live and grow and play and learn as she is now.  But she is getting older, and God only knows what the future will hold, or how she will be.  I am not risking my baby.  I need to know that what we are doing now will help lay the groundwork for services for her if and when she needs them.  Because without a "real" diagnosis, there's nothing.  Being complacent... there's just no room for that right now.   This is not about me.  I need to do what's right for her.  If a mom does not stand up for her child, then who will?

I will say this.  If any mom out there has a question or concern in her heart about her child... even if it's a concern you've never even voiced out loud.  Follow your gut.  Don't wait, and then later regret it. 
 Your baby is worth it all.  We have to be strong and be a voice for our children.  Don't sit on your hands, and don't let anyone tell you that you're over reacting or that your "just being a mom" or any such foolishness.  You know your child better than anyone else.  Stand up.  Demand to be heard.  Fight for your child.  You won't regret it.

A 5KFoam Fest With Mud and Awesome Kids

What a lazy Monday... lots to do, but just can't seem to find the energy.   I'm afraid I've 'dropped the ball' today on being Super Mom.  That seems to be happening a lot lately.   I am fairly sure the bulk of it has to do with my garbage diet and being overweight.  I need to get back into my "hippie food" and start moving more.  Anyway.

This past Saturday was awesome.  My youngest daughter Robyn, who is visually impaired and who is on the autism spectrum, was in her first ever 5K mud-run.  It's called "Foam Fest", and the idea was to have a 5K run with fun things to do along the way, involving getting either really, REALLY muddy, or really, REALLY foamy!   Lots of slip and slides, things to climb over, crawl through, and run and jump through... which left everyone wet, muddy, with foam in their hair and smiles on their faces!   All the proceeds went to benefit the Special Olympics, which my daughter is in.  The one downfall?  It was bitterly cold... the wind chill was 27'...  and with the humidity we have here, the cold cut right through you.  

Undaunted, my Robyn and her team-mates attended (except for one boy).  Each athlete had a chaperone, so there was plenty of help available if needed.  The race was not timed... it was all for fun!!  Hubby was her chaperone, and she was very happy to have her daddy do this 5K with her.   They completed the run in about an hour.  Though with everything ... we were there, in that COLD, about 4 hours. And it was worth every bit of it.  They had a blast!!

She is already planning to go again next year.  Maybe next year, I can do it with my husband and daughter, and it would be great if our eldest daughter did it too.. make it a family thing.  I would love that!!  She did awesome.. this same girl who HATES getting dirty, has zero balance, and is  perpetually afraid of falling, (and does fall, just crossing the room), did this 5K.. she was able to do 90% of it.. and the little bit she was unable to do, she did her BEST at it, and was completely fearless.  We are so very, very proud of her!!  

Brain Fat, Autism, and Sucker Punches

What a long week it's been.  

Last week a lighting storm moved in, and, being as that we live in the Lightening Capitol, it really should not have been a surprise that our modem was struck, (as well as my neighbors modem, her phone, and her washer).  It's not the first time, nor will it be the last time, I dare say.  But, it was an inconvenience.  That, you can take to the bank.

I made a nice long post, saved in my inbox drafts, that I had intended to post as a blog entry.  Whatever happened to it, I have no idea.  But I am annoyed that it is gone.  I couldn't even tell you what it was about.  LOL  Obviously it was not anything earth-shattering.  Haha!

We did go to mass on Ash Wednesday... confession, Holy Mass, and ashes...  Lent has been beautiful and we attended mass on Sunday too.  I am so glad we went.  Robyn gave up sodas for Lent... and she's had a very difficult time when someone else is having one, and she has to pass on a drink. :)   It's good for her though.  It's good for all of us.

Today, I took Robyn to her pediatric doctor appointment... the results of all her bloodwork was in, and the results of the MRI on her brain are back...  (let me explain), she was diagnosed with delayed myelination as an infant, and had developmental delays...  and being legally blind... they blamed the vision problems (she is legally blind), on the lack of myelin in the brain.  (for those who don't know... myelin is the 'fat' in the brain that enables all those little signals to travel back and forth to where they need to go.  Such as if I touch a hot stove, my brain is signaled instantly that OUCH THAT'S HOT, and I move my hand.  Ergo, if the signals can't get to where they need to.... well, you can see where that would be a problem.)   So they said (originally) that the part of the brain causing the vision issues was because of the delayed myelin.  That it was not fully developed, and they didn't know if it would or not, or if it did, how much.  Fast forward and she is now twelve years old.  And the MRI they just did says that her brain is fine.  That her myelin is fine... and normal for her age.  Uh huh.  Well then why can she still not see?  No one knows.  Her eyes are healthy, but her vision is still very very bad.  Weird.

So.... her doctor has recommended we see this other "big city" doctor in Miami.  *sighs*  I am wondering if the insurance will cover it, and I am fairly sure they will but have to wait on their official word.  They want to rule out certain things, and re-visit the world of genetics too.  *whimper*  We've already seen two geneticists in the past.  I am not anxious to do that all over again, but it's my daughter.. what else can I do?     To add to my joy... our doctor has diagnosed Robyn with Autism Spectrum. 

 She's high functioning, and leaning towards Aspergers.  
This, I have suspected all along.  We have (yet another) referral to another place that specializes in Autism, so I have my referral in hand, and my phone call made.  Now I await the call back for an appointment. 

I understand there are parents out there who have children with cancer, ... life-threatening illnesses, and we are very very blessed and I get that.  And trust me, I am thankful.  But I have to tell you... I did get a few tears when she told me we'd have to drive a long way to another city to see another doctor... the only one of his kind in the state...  it reminded me of when people have to fly with their sick child halfway across the country to get to a special doctor or hospital... again.. not that I am remotely comparing...  I'm not I swear... but it was a shock to me.  The autism and Aspergers I have seen coming for a long time.  So those did not surprise me.  But some issue I'd never even heard of before, another doctor, another city, and re-visiting Genetics... I just flat out did not see that coming.  Doc was nice... she sent Robyn out while she and I talked.  Thank the Lord... Robyn did not see Momma wipe tears..  I "reeled it in", and got my composure back.  I've been holding it in ever since.  I called my own mom, and had a talk with her... she and my sisters helped me feel better.  Like I told my mom... She's healthy, happy, she's doing fine... but I was not expecting this, and though God knows it could be much worse... this is still a pretty big pill to swallow.   I hate to "poor me"... but right now I just feel that way a little.  God will get us through all of this though.   Funny.  I thought a week ago was the worst...  and then we got through it and hahah BOOM!  Now this.  I can't help but laugh a little.  Surely I have "sucker" stamped right on my forehead for being such a blissful dork over the last week. :)   My joy is still there... I just don't particularly like those sucker punches ya get sometimes. :)