Can I Cry?

I just got off the phone with Jenna's pediatric chronic care coordinator. You need one of those when you have a chronic kiddo. It's the one and only thing I love about Kaiser. So, Mary Kay (she's super cute and from the North, so super thick accent) is getting Jenna hooked-up again with specialists we have had on the back burner due to various things like...having another baby. You know, little things like that.

So, specialists Jenna will be seeing in the next couple of months:

• Orthopedist (for her poor little caving ankles)
• Cleft Team (includes dental, oral surgery, etc.)
• Opthalmology
• Speech
• Endocrinology
• GI
• Neurology (her seizures aren't flaring, but her floppiness on her left side is a concern)

We will be adding therapy for Joshua as well...occupational and social.

I'm weary, tired, worn, and ragged. I know the Lord is protecting and providing; we have much to be thankful for. I wish I could get away for a break before this all starts up. I'm blessed by the life God has given me, truly blessed. But, even Jesus escaped to the garden to pray.

And I can't get Mary Kay's voice out of my head. I typed this whole post with her voice in my head. Haha! She's adorable and I am so thankful for her.

Joshua's Appointment Tomorrow

Tomorrow, Joshua meets with a pediatrician who specializes in Autism. I thought this was a silly appointment until it was explained to me that sometimes ASD (Autism Spectrum Disorder) can be a result of an underlying illness. I am really nervous at this possibility and praying that it is just ASD or if there is an underlying illness that it would be a simple fix. The appointment is suppose to last an hour and there is the possibility of a lab draw to check for possible genetic abnormalities. I sincerely hope the doctor will decide the lab draw is unnecessary. In times past, Joshua has not done well at all with needles. The last time Joshua was around needles, Jenna was having an adrenal crisis at the doctor's office and she was getting an IV. Poor Joshua has never witnessed Jenna in an emergency situation and it really threw him. He vomited several times out of sheer panic and concern for his sister. That boy loves his sister so deeply. This was the first emergency situation where it has just been me and with the kids; all other emergency situations, either Nick or another adult has been able to whisk Joshua away to another room. All that being said, I am thankful Nick will be going with us so he can be a support to Joshua and me!

We will receive recommendations and suggestions of all sorts to help Joshua function in the best possible way as he grows into a young man. I want to follow the absolute best path for him. The panel of doctors who performed the evaluation and gave the ASD diagnosis have strongly urged public education. Nick and I have considered it, but the cons outweigh the pros in our opinion. Bullying is a big issue for kids in general, but from what I have read, even more so for kids with ASD. I couldn't handle that and Joshua has been bullied in the past without a clue! Another issue with sending Joshua to a public school is the germs he could/would bring back to Jenna. I realize germs can be picked-up at any of the places we go (church, restaurants, friend's houses, etc.), but germs at school are much more prevalent from what I have been told, have read and understand. Jenna has been doing very well and we have been encouraged to expose her to more (and we have), but there is a difference between exposure and forced exposure. We cannot let our guard down and should still be somewhat cautious.

I'm so proud of Joshua. He is so engaging, smart and charismatic. He loves to read and uses his imagination. Some days are extremely tough on me and I am trying to figure out ways to help cope with the stress of having two special needs kids, but I can't imagine my life any different. Joshua is uniquely Joshua and I am proud to be his momma.

Week 1, Day 2

Up at 5:00am again this morning to go swimming. Not sure how I managed to since I woke-up FIVE times during the night. I really fought the urge to hit the snooze button! I could wake-up an hour later and go swim, but the pool starts to fill-up with swimmers at 6:30 and I don't like sharing my lane unless I have to. In times past, sharing a lane has meant the other swimmer forgetting we weren't circle swimming and me getting plowed into. No thanks! I'll continue to get up early.

I swam another 1,000yds. It was a bit easier than yesterday. My stamina was much improved and I didn't need as many breaks. I hope this keeps up. My muscles are so fatigued right now that I am not sure when I will be able to make it up the stairs to the second floor in our house. That's a good thing though. I'm burning fat and building lean muscle. 

Setting my alarm now to be up again tomorrow. I was going to start of with doing just a few days a week, but when it comes to working-out, I am all or nothing. If I skip a day, I might not go back! Gotta keep my eyes on the prize.

Funny story... As I was leaving, I noticed the female lifeguard rearranging the kickboards so they lined-up perfectly. It made me giggle to see a fellow "type a" at work. I complimented her on her skill and explained I would have done the exact same thing. We shared a good laugh together.

Week 1, Day 1

So, I did it.  I woke-up this morning at 5:00am, hopped in the suburban (thank you, Jesus, for 4-wheel drive), drove to the rec center and hopped in the pool!  I swam 10 sets of 100 yards.  I was shocked I could swim more than 50 yards at a time!  Woot!  Not regretting it a bit.  I have muscled fatigue and burning that hurts so good!  I may have not worked so hard if it weren't for the awesome receptionist who remembered my name before I even checked-in.  I need to sit down and write a letter to the director of the rec center.  Seriously, Nancy's like the best cheerleader ever!  She was clapping and cheering for me as I made my way to the pool.  Also, the computer applauded for me as I checked-in.  Hello?  Awesome!  It's the little things, people :)  I'm going to do it all again tomorrow!  Yeah, buddy!  I'm praying this motivation lasts.  I tend to burn-out and give-up after a while.  Why do I do that when the reward is so worth it?  Because food tastes awesome...that's why.

So, my goal.  I'll just keep losing until my body looks healthy.  My sister has a tentative wedding date of 10/17/15.  I'm going to be her only attendant.  She's going to look stunning and I don't want to look like a hippo standing next to her!!  Looking at that date, it makes me feel like I have plenty of time to get down to where I want to be, but not exactly!  My sister has a goal to lose 35 pounds.  Ha!  Hahahahahahaha!!!  I laugh at that because I have about 100 more pounds than that to lose.  I'm thinking I really only have a year to get down to a reasonable weight because we will be doing dress fittings months ahead of time.  MONTHS!!!  Okay, I might be freaking-out just a bit.  I think I could manage to lose 100 pounds by the time dresses come along.  I hope.  Something else I had hoped I would have time to do is skin removal surgery, but I'm not thinking I will get down enough to make that a possibility.  Maybe I will?  Ewwww!!  Grossing myself out.

Back to school with the kiddos.  Who knew they couldn't teach themselves ;)  Speaking of school... It's going well, but I anticipate we will be doing school through the summer this year.  No big deal, just... ***yawn***  Yeah, that.

Happy Monday!!

The mom I want to be

I want to be the mom who has it all together.  You know her.  I'm not her.  I know that no mom has it completely together.  Nothing always goes as planned.  But, I feel like I will never come close to being the mom I want to be!  It would just be nice to not leave the house looking like and feeling like a train wreck!  How do you other moms do it?  I see other moms looking cute in their boots and sweaters in the midst of winter... I throw on my yoga pants and flip flops and feel pretty good that I even made it out of my pajamas.  Or are those pajamas?  Am I jealous I don't have more time for myself?  Maybe a little.  Okay, a lot.

I laugh to myself as I type this because honestly, I think I use to juggle mommyhood pretty well.  I thought I would only get better and better at it, but it is seemingly the opposite!  Perhaps it's the lack of time for myself?  Who has time to put on make-up when you have a baby tugging at your pants?  Who has time to curl their hair when your two older kiddos are yelling, "Mom!!! I'm hungry!!!"  Seriously, people.

I'm sure part of it is just the season in my life and age of my children.  You know who makes me want to scream?  Michelle Duggar!  That lady is wonder woman with 19 kids and I can barely manage our 3.  Someday, every room in our house will be clean at the same time.  I have to reprogram my mind to realize THAT DOESN'T MATTER right now.  I'm a mom with young kids and there is no way to have the perfectly cleaned home.  Get. Over. It.  Phew!  That is a hard pill for this neat freak to swallow.  Especially as I am sitting here with clothing donations all over the table and a living room floor covered with toys.  I know this scene warms some hearts, but it sends me into a panic attack.  I spend way too much time fussing over cleaning when I should be fussing over my kids and soaking up these young, impressionable years.  I don't want them to model my behavior.  What a horrible observation of my own character.  HELP!!

"Breathe.  Enjoy your children."  This is my mantra for the this year.  If I can just be still and enjoy my kids, everything else will get taken care of in time and I will slowly become the mom I want to be.  Not the mom who seemingly has it all together, but the mom who loves and lives.  The mom who builds tent forts with her kids and gets wrapped-up in a game of hide and seek.  It's the seemingly little things that are really the big, important things.  The word "seemingly" is key.  Those things that are "seemingly" insignificant?  They're significant.

Those are my thoughts this morning as I guzzle my chai tea and prepare for my crew to wake-up.  It's going to be a beautiful day today, so we are going to the park and leaving this messy house behind... *whine*  The kids will love it and their happiness is my reward.  The mess will still be here when we  get back and we aren't expecting company, so who cares?

Date Your Spouse - Special Needs Edition

Disclaimer: I tend to ramble my thoughts rather than organize them.  Welcome to my brain.

So, I read a blog article by a dad who has a son with Autism Spectrum Disorder.  He talks about how he and his wife (despite having a son who is non-verbal and autistic) still enjoy getting out and doing the things they did when they were younger and how most of their friends (even with typical kids) have turned into fuddy duddies (that's not recognized by spell-check by the way) and rarely get out for a date night.  I am completely torn with this concept.  I totally agree that we need to continue to date our spouses, but having two special needs kiddos complicates things a bit.

First of all, finding someone who can handle two special needs kiddos and a baby...all at once.  I am very thankful that we do have a great friend who will gladly take this on and has dropped everything to come serve us when we've had an emergency (Nick nearly cutting his finger off), and award to receive (Nick aiding in the rescue of flood victims).  But, we have a hard time asking.  Honestly, I can count on two hands the amount of dates Nick and I have had since we've had kids.  That's rather pathetic considering our oldest is now 7.  We do have a babysitting "credit" to use (Nick replaced a car battery for our sweet friend who has rescued us in the past).  I think this is a great way to have baby sitting covered...exchange of services!  Who needs some car work done?  Piano lessons?  You think I'm joking...I'm not!!  I desperately want more time with Nick.  We're a great team, but I feel like we have forgotten what it's like to be in love and to really know each other. 

Something else that bothers me is having to stay local for dates.  Special needs parents are jipped.  Nick and I would love to get away for an entire day and drive alone in the mountains, but we need to be close by (as in staying in our town) for emergencies and to only be gone for a few hours (any longer and we start worrying our baby sitter is going bonkers).  In order for us to be further than local, our sitter needs training on administering Jenna's rescue meds and when to give them...that feels unfair.  Handling an emergency and giving rescue meds is scary!  And then there are Joshua's meltdowns.  He has done pretty well with these lately, thankfully.

So... After getting this all down in writing makes it more abundantly clear that Nick and I need to get out more.  We are tired, worn and ragged.  I miss the sparkle in Nick's eyes and how we use to laugh together.  We still laugh, don't get me wrong, but it's usually a laugh of sheer exhaustion and hysteria.  And let me make this clear... We love our kids.  We are truly blessed and would not change anything.  But we're tired and have forgotten what it's like to "date" each other.  Dating should not end after marriage.  It's a lifetime event we (and everyone else) should work on perfecting.

So if you're a parent of typical children or special needs children... Come up with a plan to date your spouse.  You need it, your spouse needs it and your marriage needs it to survive.  No excuses.  Even if it's out for a cup of coffee...do it.

New LIFE's Resolutions

My friend, Amanda, gave me a new perspective on New Year's Resolutions... New LIFE's Resolutions.  We want to make the change permanent, right?  That is our goal when setting new goals, right?  Well, here are my NLR's:

1.  Improving my relationship with the Lord;
2.  Being a better wife and mother;
3.  Building a healthier lifestyle for our family.

Those seem to be the same ones each year.  My prayer is that I will not falter and will seek the Lord for His strength to see these all come to fruition.  If I can accomplish the first on my list, I know the others will fall into place because this list is also the Lord's desire for my life.  This list is very telling of how previous years have gone.  I have not spent enough time at all with the Lord and my life is evidence of that.  I was going to say that from the outside it may not be evident, but that would just show how much I am in denial.

So what keeps you focused daily on the Lord besides the obvious things that help (reading the Bible, prayer, worship)?  Something I would really like to do is to hand write Bible verses and have them in various places through the house.  That way, no matter my attitude or what is happening during the day, His Words are there right before my eyes.  Which verses help you stay or get back on track? 

Another idea which I received from a Facebook page I follow is having a JOY jar filled with random acts of kindness.  Too often, I get wrapped up in the needs of our own family and forget there is an entire world out there hurting and needing someone to care.  Even the people who seemingly have their lives together need to be told/shown that God cares for and loves them.  This would be a great thing for our entire family to participate in.  I can really see us growing from this.

What are your NLR's?  I'd love to hear them.