Wednesday, February 26, 2014

Our Special Needs Journey:Part 9 - Siezures, Sleep Struggles, and a Sour Stomach - More of Dean's Journey


Dean had to be sedated for a brain MRI yesterday.  This will help the neurologist develop a treatment plan for his seizures.  Due to a family history of something called Malignant Hypothermia all our children must undergo anesthesia a bit differently than the typical process.  We must be the first appointment of the day and can only be seen at the Minneapolis location.  The room is set up much differently because IF the kids have MH (and ruling it out is nearly impossible) breathing in the gas form of anesthetic is deadly.

Dean (my almost 5 year old autistic son) does NOT enjoy being woken up, however we had to leave by 6:45 am, which is a bit before his natural wake - up time.  I had written a "social story" (I LOVE the website tarheelreader.org - SO GREAT) to help him know what to expect. It said that Monday we would go to the hospital (and all the steps involved, from arriving to returning home). He kept screaming "It's not Monday! Pretend it be Tuesday!"  Which was adorable and all, but I need to get going and that kid is strong - he can be tough to force into anything. He was also not too happy that I wouldn't let him eat.

Every transition takes great effort. I was grateful for all the airplanes we could count while driving (great distraction) and the flexibility of the staff at the Children's Hospital.  He didn't have to wear his ID bracelet until after he was put to sleep and they let him wear his own clothes! That said, it was still very challenging.


Saturday, February 22, 2014

Our Special Needs Journey:Kid #2: Taylor's Story


As busy as life has been, I really wanted to finish sharing my children's stories with the internet world, so that the background information is there when I'm writing updates.  It seems to make sense to provide the whole picture. That, and I love to talk about my children of course!


I went into labor with Taylor at 26 weeks along & was promptly placed on bedrest for the next 9 weeks.  I remember checking in at work a dozen times a day at first, then eventually getting used to being home and dreading my return (5 days postpartum, the same day she came home from the NICU, I was back at work - we needed the money).  She held off on her arrival until almost 36 weeks along, then came fast and fierce.  

She was born at 6# 9 oz, with fluid in her lungs and some breathing issues.  She was the biggest baby in the NICU and was only on oxygen for 3 days and feeding tubes for 2.  She was bottle feeding (I pumped for a couple weeks) like a pro and spent just under 5 days in the hospital.  I, however, was not well.  

I hemorrhaged and while Dan joined Taylor in the NICU I was all alone in a dark delivery room, on painful Pitocin to help my uterus contract.  I didn't end up needing a transfusion, Praise the Lord, but did have a clot in my leg the next day. (I will have a pity party here and say that going back to work was physically painful and emotionally draining.)

Tuesday, February 11, 2014

Our Special Needs Journey:Part 8 - Bruce's EEG Test Results


Friday it was Bruce's turn to get the EEG hookup treatment. I think the reason the Dr had ordered the test was more to rule out than to diagnose. He is having some night terror episodes similar to Dean's, and since Dean DOES have abnormal brain activity and seizures, we wanted to catch it early on if it Bruce is as well.


He was a trooper about applying all the wires but wasn't a fan of being held still for an hour - I'm so glad he's still nursing and that I could comfort him in that way.  He slept for a good 20 minutes before we had to wake him up to get a reading of that transition.

Wednesday, February 5, 2014

Our Foreclosure Journey Part 2: The Sting


It's 9:59 pm and I've spent well over an hour getting my boys to sleep.  It was a busy day of back to back therapy appointments and errands. I carried Dean off the bus asleep at 4:20 and he didn't wake until it was almost his bedtime.  So I'm not surprised he's up late and I have to work so diligently to calm him to sleep (rub head, read story, squeeze hug, heavy blanket, repeat). Bruce too (boob in mouth finally does the trick, but an hour ago that wasn't working either).

So I'm pretty surprised - and livid - when the doorbell rings twice and someone begins pounding on the door - for well over a minute while I button up and try to crawl out of the chair with two kids on my lap.  Our dog's crazy barking wakes the kids up - all of them.

I brave the cold and open the door to find a man in a tacky fisherman hat asking if Dan is home. My heart sinks. I know why he's here. I knew this would happen. In fact, the stress of the silence was deafening. I NEEDED to get that paperwork. I needed to know what comes next, when do I have to leave my home.

And yet - it stings. My insides are burning as I tell him my husband is at work and why are you coming to my door at 10 pm and waking my children up? He says he is from Metro Legal Services and is "just the messenger."  I'd like to shoot the messenger. Grr. Yes, I'm an occupant of the home and no, I will not accept the paperwork he has brought me. He is welcome to come back during acceptable hours.

He refuses to leave the property even after I ask him too.  I let him know I will be calling his company, as 10 pm is not an appropriate time to be delivering the papers. He shoves a handful of documents - not even in an envelope, super professional, in my face and waits for me to take it. Bruce is crying and it's Minnesota-cold so I take them and shut the door, loudly stating he can get the eff off my property. Only I used the whole word. Julia is standing behind me shocked. I don't bother to apologize for my language or behavior. I'll do that in the morning. Right now, I'm dealing with the sting.

As I sit in this chair, rocking the baby and staring at the pages I sob heavily. How did I get here, Lord? I'm a pleaser, the teacher's pet. I was on the honor roll, I may have dropped out but when I did get that diploma it was with a 4.3 GPA. I work hard, pay my bills on time, show up 15 minutes early, and honor my commitments. I don't get in trouble - having debt collectors call, getting a legal notice of Sheriff's sale, it burns my insides.

I knew this was coming. It had too. I haven't paid my mortgage since October (well, then the bank stole my money so it was more like December & January only at this point). We CHOSE this, in a way, doing in depth research, bringing it to God in prayer, and electing this was best for our family.

So why does it hurt so much? This is the longest I have EVER lived in one place. One home for over 10 years. One city for almost 12. Dan & I both moved a LOT (A LOT, like a LOT) growing up.  Sometimes I was never in one place/school long enough to make a friend, other times I had to leave dear friends behind. My children know no other home. Except for moving Julia here when she was 2 (she doesn't remember it), none of them have ever moved.

For autistic children, simply rearranging the furniture in their room causes distress. Taylor asks who was at the door and why I am so mad. I try to explain what it means - "just information letting us know they sell our house to a bidder on March 27th and we have to find a new home by Sep 29th (which happens to be my stillborn daughter's birthday - another reason to hate that day)."

My theatrical, emotional daughter drops to the couch and sobs loudly, Julia then tears up and starts crying softly. I can't hold it in. Dean comes to hug me "we can take Rocky and my trains with us,right?" he says with concern. In that moment the sting of the hurt is too great and I break down. Me, hugging my 4 precious children, all of us sobbing (well, Bruce was simply crying because he was overtired, but it counts).


In this moment my sweet Julia says "We can pray now. God will give us a home and it will be okay." The faith of a child - that we should all have such peace and confidence in our Father. I love this girl.

As the kids tell me the things they are scared of and express their concerns (mostly about the pets - and our backyard pool they love SO much) and questions, my heart breaks (and I will say this - it is barely intact right now!).  I'm sorry, dear children, I could not provide for you.  I'm sorry our choices have led us here, to the hurt they feel now.  Yes, just this once, you can stay up even later and go watch a movie together and have a "sleepover" in Dean's room.

A phone-call cry to a friend helps me calm down and letting it out really did help and I feel better. I'm playing fast & loose with the word "better" though I think.


I just....can't. Turns out foreclosure is not an amicable process (I'm not sure why I thought it would be. I guess I was expecting professionalism -  and indifference).  Too much in my life is happening all at once. These are a lot of changes all at once - intense therapy for the kids, Dean's autism diagnosis, the seizures and brain damage, treating my daughter for an eating disorder, etc.

The aftermath of the bank draining our funds, and needing to quickly close the accounts, is widespread and a long, drawn out process to resolve.  I've been so encouraged by the kindness of others - since my original post in December we have been truly blessed.  We had the most wonderful Christmas ever, and our needs were met (gas, groceries, even meds).  But I'm finding it hard to be strong.

Almost daily the mail brings fresh reasons for tears.  Multiple transactions had not cleared our bank account at the time it was closed, we are now getting collection letters from these vendors -- with the fees attached, of course.  Sorting out auto-pay bills has been a nightmare.  Just when I think I've contacted every company to set up with the new account, a bill for something I'd forgotten comes in the mail.

It is a GOOD thing that I have been forced to downsize and purge! I have always been a pack rat and our lives have been overcome by STUFF.  Cleaning is overwhelming in part because we have too much STUFF.  It is not items of financial value, some is sentimental, some are things rarely used, some really is just trash. I'm glad to find freedom from all our things.


That said, this is HARD. I love crafting with my girls! 3 bookshelves of crafting supplies? I can't take all that with us. Egg cartons and tp rolls get tossed in the recycling.  There isn't room for all these Christmas decorations, so I pack many up to be donated.  Books. We love books. There simply isn't room to keep them all.

Pets. We love our pets.  I'm finding it harder to locate a good home for our pets than I thought it'd be. We all CARE where they end up; we want good homes for them.  And the kids will really miss their dog especially.  I'm the one who ends up cleaning all the litter boxes and the turtle tank, and buying heavy bags of food and litter, so I'm not that sad...

This is our yard where we shoot off fireworks in July, jump in leaf piles in October, walk the dog around the block and talk to the neighbors.  Dan built that playhouse and swingset from scratch. We've made all these modifications to suit our lifestyle - like adding shelves in a closet or baskets on the wall by the top bunk for all Julia's books she reads before bed. Permanent hooks on the bathroom wall for toothbrushes. A custom built shelf along the entire wall for the 1500 DVDs. Little things. Nothing major, but the hacks that have made our lives easier.

As a Type-A-live-by-my-calendar Planner I thought I would find peace in knowing the date we need to be out, and knowing the next steps. I do not. There is still so much unknown, so much to be answered, so much to do.  I am in survival mode. I rarely sleep, eat, or even shower (ew, right?!) and now I have to find a place to live, pack, sort, purge, clean, transition our pets somewhere, etc., in the midst of all else there is to do. The sink is full of dishes, the laundry has needed folding for days, and we are tripping over toys and chaos. I currently have a lapfull of clippings from Box Tops and Soup Labels - they need to be sent in this week.

James says (1:2-4) "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may mature and be complete."  James, if I make it through this I totally agree, it will only be the result of some rock solid faith - Trust in His plans for us. (Jeremiah 29:11)

I think of a passage in Matthew I studied in BSF earlier in the year - Matthew 8:20. "Jesus replied, 'Foxes have holes and birds of the air have nests, but the Son of Man has no place to lay his head.'"
Christ knows what it is like to have no home - literally.  He also knows the burden of providing for his family. In his first 30 years he likely helped provide, as the eldest son (& no mention of Joseph after he was 12 years old), for his mother and younger siblings. I believe He truly empathizes with us and, in His timing, will indeed provide just the right place for us all to lay our heads.




Our Special Needs Journey: Part 7 - Seizures?!!!


I live for moments like this. This was another busy day -here I am with just my boys.  Dean, enjoying lunch in the car between his OT appointment and preschool, is playing peek-a-boo with Bruce.  Their mutual laughter fills the car with delight and I turn off the radio to enjoy the sounds of glee.

I am on my way to Mommy-Baby class with Bruce when I get a call on the results of Dean's EEG on Friday.  (You can read more of Dean's story here.) That was a rare opportunity to spend time with just Dean, too bad it was for a test to determine to what extent his staring spells have been the result of neurological issues.  (I can't get technical here because I don't really understand all the details and am way overwhelmed and sleep deprived these days.)

My little guy loves numbers, letters, and colors. So I picked up this reusable book about numbers where you "paint" with water.  That book was a lifesaver during the test - this mom knows her kiddos well!


Tuesday, February 4, 2014

Our Special Needs Journey:Child #1 - Julia's Story


As a teenager I was not aware I could love any one person so intensely and deeply until Julia was born.  I was utterly undone by this sweet little baby - it's amazing how little else in my world mattered once she came along.  And that is saying a lot, considering how self involved I was (am) at 16.

Yes, finding out I was pregnant at 16 was terrifying.  There was no Teen Mom on MTV, no Juno, only a huge shock factor. I hadn't been at that high school long (we moved a lot growing up) and was essentially a nobody among the 800+ students.  Being an honor student doesn't make you very popular- but wearing maternity pants to class will make you an instant celebrity.  Not the good kind - the one everyone gossiped about.


Thankfully I had some pretty awesome friends who loved me all the same and made that Junior year tolerable.  What's more, Julia's dad is pretty great too - we were married the Saturday after school ended - June 9th.  With little money or resources, (I did not yet have a driver's license and could not afford childcare) my focus became my new family.  I remember September 11th, 2001 - in each classroom we were watching the footage of the Twin Towers and I was having my teachers sign off on my "drop-out form."



Julia's always been a fighter - my water broke over 6 weeks early.  62 hours later, after much drama, she entered this world at 5 lbs 7 oz not breathing, with fluid in her lungs. They were able to revive her and she was whisked away to the NICU.  Due to a very weakened condition I was not well enough to see her until she was over a day old.  Proving she is one tough cookie we took her home after only 10 days in the hospital (oxygen, tube feeding, bili lights, I don't remember it all now)! (I do remember the out-of-pocket cost to us, as teenagers making minimum wage, was $19,820 - she was "paid off" by the time she was 3!)

It was not until Kindergarten that we found out she had autism.  At the time they labeled her with Asperger's, but over time her speech (brilliantly advanced at 9 months) regressed (unable to understand most of what she said by 4 years) and they corrected her diagnosis to high-functioning autism, since a speech disorder cannot co-exist with Asperger's.