Monday, December 27, 2010

It can't be bought

I'll confess I've been struggling with something this Christmas season.  It tends to strike me every year and it takes a while for me to knock it back and keep going.  I thought it would help this year to write it on out of my system and move on.

My kids got three gifts each this year from us.  Two of Nathan's were books, the other a sweatshirt I grabbed for $10 at the Gap outlet.  He was in love with all of them.  Brady got a book, a sweatshirt and some moon dough.  Both boys loved the moon dough and I'm still having mean thoughts about the product.  Those gifts were from us, not from Santa.  We don't do Santa.  Jim and I decided when Nathan was not even a month old that we would not do the Santa deal.  We didn't want to lie to him.  When he was old enough to understand things, we talked to him about St. Nicholas.  We told him about a generous man who gave gifts.  We told him about the first gifts given for Christ's birth from the wisemen and the many gifts that followed.  He was super cool about it.  When we saw Santa at the mall, Nathan would smile at us and acknowledge the character knowing the truth.  Brady was taught the same thing once he was old enough to understand.  He is still a bit confused, wondering why EVERYONE in the world asks him what Santa's bringing him for Christmas. His response of nothing confuses them.  It will get easier, I know.  And in the long run, my children will grow up knowing the real reason we celebrate Christmas.  God sent His one and only Son down to earth.  Jesus left the splendor and majesty of Heaven to be our Saviour.  Do we really need another gift after receiving this One?  

This is where I struggle.  I want more gifts for my children.  I look at pictures on facebook of friends with overflowing presents for their children.  I hear people talking about buying more for their children because they don't have enough already. Let me say now there is NOTHING wrong with doing this if you can afford it. I see it on television where I'm encouraged to buy more and "make their dreams come true."  But I still don't do it. Last year I did go more overboard than ever before. I went to Target and picked up "just a few more things."  After filling up my cart, wrapping it all and waiting for the big day, those few more things were discarded within a few days.  Some are broken, some are so annoying the batteries mysteriously died after a day or two, some have already been donated to others.  In less than a year, all those things that I thought my children needed have been put aside for what?  I really don't know.  They return to the same things all the time.  They play with their cars, they color or do crafts, they read, they build things with their tools, they drive me up the wall sometimes. Oh, that's not a toy, but that is what they do with their time.  Now that Nathan is in school he doesn't have as much playtime as Brady.  I know in future years the time crunch will be even more intense. 

So this year, the sweatshirts will be worn, the books (including a chapter book) have already been read and the moon dough has been splattered all over the kitchen floor and Kodi's fur. My children will know that we loved them enough to not give them everything Target and ToysRUs sells, but to give them honesty, unfailing love, always open arms and our time.  Our time, that is priceless, because one of the reasons we don't go overboard is financial.  We chose moments after finding out Nathan was growing inside me that I would not go back to work full time after he was born.  I had missed a lifetime of firsts with Harris and wasn't about to do it again.  Making that decision has meant staying in our townhouse, driving older cars, wearing older clothes, menu-planning, budgets and all that comes with one full-time and one part-time income.  But with a smaller income comes time that can't be bought.  Just another blessing.

And just for the record, the boys are blessed with gifts from others who love to spoil them.  :)

Friday, December 3, 2010

I get down, He lifts me up

Nathan falls, a lot.  Brady falls, a lot.  Jim falls, not so much anymore. :)  

This is our life.  It is not unusual to pick up more than one child at a time from a fall.  We call them 2-for-1s.  They have an uncanny tendency to be Dominoes around each other.  They fall when they are running, walking, jumping, hopping, and sometimes, off the couch!  The last one is just because they are a bit goofy!  You wouldn't believe the dirty looks we've gotten while out shopping when the boys fall and we keep going.  Negligence written all over them.  From the beginning of their first steps and first falls, we've laughed them off.  What's the point in getting worked up or upset over a fall?  As little people they have less distance to go so the fall's not that bad.   

Now, however, Nathan is just at four feet tall, weighing in over sixty pounds.  And he'll be six on the 7th of December.  It's starting to be a bigger fall.  Giants fall harder, you know. Again, we take it lightly.  We can tell by the look on his face after a fall whether we need to intervene or allow him to work it out himself.  He's pretty amazing.  I'd be a big ball of tears if I fell that much.  I do trip a lot and have some falls myself.  Clumsiness marrying HSP wasn't the best plan...ah, love.   


That brings us to Kindergarten. We're loving Nathan's school and his teachers and the environment.    But just about every time I go into the building someone, the guidance counselor, the janitor, the teacher, someone shares their concerns about his falling.  I appreciate those concerns.  That means they are looking out for my child. But no one is content with the answer that this is what they do.  They fall, a lot some days.  Especially cold days.  I respond as nicely as possible yet I do wish they would know that if there was something better we could do to help Nathan (or Brady) we wouldn't hesitate for anything.  I think it's pretty clear I would rope the moon for the men in my life.  There, I've needed to get that off my chest for some time now.  Thanks!


I read a friend's blog today where she had fallen and hurt her ankle.  She said it was a reminder from God to rest and take it easy.  I've decided to use every fall in our family to praise Him.  I have incredible gifts from God who fall and I'm going to praise Him for them everyday, with every fall. 

"I get down, He lifts me up.  I get down, He lifts me up, I get down, He lifts me up!"

Thursday, December 2, 2010

I'll love you anyway

Over Thanksgiving the boys spent some time with a family friend.  They knew she was coming ahead of time and were so excited to have someone kinda new visit with us.  They didn't know a thing about her, just that she was coming.

Our friend has cerebral palsy.  She uses a walker, sometimes a wheelchair and wears AFOs like them.  She doesn't communicate as well as others her age.  She has a hard time eating with the manners we expect.  She has quite a few challenges she's fighting to overcome.  

My boys didn't see any of those things.  My boys saw another friend in our house.  They welcomed her and included her, or at least tried, in everything they did.  Even going upstairs to play in their bedrooms.  They didn't ask me why she does this or why she can't do that.  They accepted her for her.  And they can't wait to see her again!

It made me so very proud of them.  And it reminded me of the times I see people who are different than me and I wonder about them.  I thought of being that new kid in a group or walking into a group of new people for the first time and how painful it is.  Since having the boys, I don't like the idea of walking into new places without them. Even going to the grocery store by myself is strange, it's hard to explain the exuberant counting of fruits and veggies when you're by yourself.  Anyway, I thought of how God calls us to love everyone.  Not just the people like us, not JUST our neighbors, our friends, our coworkers, our family, not just the people we see at church.  God called us to love everyone.  My two children, under the age of six (for a few more days) reminded me of that by the way they treat others.  I am so thankful for them.

My prayer for them is that the love they share with others is shared with them.  My prayer is that for all the times they welcome someone who is different, they are welcomed as well.  Life's not easy and I'm not sure I want it to be either.  But I do want my children to be loved, loved, loved.

Tuesday, November 23, 2010

God answers prayers

About six months ago WalkAide was just a nifty new device that I had researched years ago that was finally being introduced to our family.  Even after trying it out for an afternoon we still saw it as something completely unreachable no matter how hard we dreamed about it.  Then I watched the video of my husband wearing the WalkAides and something stirred in me to pursue it at all costs.  To Jim, the higher cost was pride as I asked our friends for help.  The amazing end result is we own two WalkAide devices for Jim, one for each leg.  He received them on October 23rd and it's been something close to a miracle for me to experience.

It's actually hard to put into words how it feels.  And that's just my feelings, I dare not attempt to speak for Jim.  Jim and I have been together for ten years.  Our first date started with me asking him why he was walking funny. Yes, I did.  It was the first cold night of the season and we'd been meeting in a small group inside.  Cold weather pretty much freezes up their muscles so when he got out of the car for our first date I thought he was just trying to be funny.  I had not noticed his HSP in our meetings. After swallowing my foot and some dinner, I learned a bit more about his disorder and well, the rest is history.  Somehow he saw past my rudeness and found a way to love me.  So that was just the start of things. Through the years, there have been falls, trips, a few limitations, scrapes, bruises, aches and pains.  And there have been SHOES!!!!  I've had the same brown shoes for four years and the same black ones going on their third winter.  Jim's shoes do well to make it two months.  After getting the WalkAides he bought a new pair of shoes.  There's very little wear on them. You can't HEAR him when he walks.  And you can't SEE his entire body forcefully walking.  Now we're only a month in and there's a lot yet to be seen, but what we have seen has been so promising.  We are so hopeful for the long-term effects.  He's working through some fitting kinks and getting used to being shocked with every step or the unexpected shock after sitting.  The great thing about Jim is he's going to let this thing work and do what it needs to do without complaining about a shock.  He's using muscles that have never been used...can you imagine?  My body feels that every time I workout and that's just from working out the day before, this is 38 years we're talking about!  Needless to say, he's had some soreness and tenderness from that.  We're hoping those issues will work themselves out with longer wear.

This dream from a few months ago is now a reality.  God tells us to have faith and to ask in His name and we shall receive it. Without being cynical or sounding hypocritical, there have been many times when the answer was no or not right now.  With your help, the answer was a resounding yes.  God used our loved ones and your faithfulness to make a dream come true for our family. With every donation that came in and every baked good request, we praised God and you for making this a reality for us.  I have been moved to tears so often throughout the past month just thinking about your love and generosity for our family.  I hope you all have the chance to see Jim walking with it one day.  One of my volunteers at church saw him this weekend and said, "I saw Jim walking in front of me today.  That thing is amazing."  Yes, buddy, it is.  God is good, all the time, God is good.

Tuesday, September 28, 2010

Walking

In my family there's a joke that I'm the one who walks funny.  I live with three of THE most amazing guys you'll ever meet.  They all have Hereditary Spastic Paraplegia.  It is a lower motor neuron disorder that affects their lower limbs, from the hips down.  They have all been through loads of physical therapy and for a while we allowed Nathan to be our guinea pig whenever I read about something that could potentially make a difference.  I cannot believe what all I put my sweet little boy through with the hope of finding the one thing that would be life changing.  As if having painful cramps, spasms, falling, tripping, wearing holy shoes, wearing uncomfortable AFOs and being looked at all the time or told he couldn't do something wasn't enough for him to already be going through.  As a mom and wife, I only want the best for my family.

I stumbled across a device about two and a half years ago that I thought might be the answer.  I mentioned it to Nathan's PT and she tried a similar device that was painful and not very effective for him. Earlier this year his PT said that someone from that company was coming by and would be willing to try it out on Nathan and Jim and Brady.  Ahhhhh, some things are worth waiting for.  

We met with Cole Parsons, the Walk-Aide rep many months ago, thus beginning this long journey of what if. He first tested Jim out using the Walk-Aide.  It's a device that is mainly used for traumatic brain injuries, such as stroke for foot drop.  Well, you can say the boys have foot drop just by checking out their worn shoes!  It stimulates (by shocking them) their foot to come up with every step.  Yes, it's a bit painful and something that would gradually become the norm.  How much more can that hurt than every stubbed toe or other scrapes?  On that day we realized that Jim was what we feel like the perfect candidate for the device.  The boys need to grow some more before it will work for them.  The device is about the size of a deck of cards and worn just below the knee with a custom cuff.  Most people only need one, my boys would need two.  This device is relatively new in the medical world and especially for HSP patients and rarely covered by insurance.  Here's a clip from the first time Jim tried out the WalkAide.

video


The night of the first "experiment" Jim said to me with tears in his eyes, "That is the first time I've ever walked." I knew in my heart that I would do just about anything to make this a reality for him.  Can you imagine what parts of his life must be like and have been like for the past 38 years?  He never complains about the pain or the arthritis that is kicking in because of the extreme wear and tear on his joints.  It takes so much effort for them to walk, some days it's painful for me to watch how much effort it takes and yet they all just go and do without complaint.  I contacted Cole to see what it would take to get the Walk-Aide for Jim.  He gave me some crazy numbers to start with and said he would start the insurance process and for us to be prepared for it to go into appeals. We discussed renting the device to see the long term effects, but the rental cost was EXTREME, something close to $2000 that we would completely lose if it didn't work, but could put towards insurance IF insurance paid.  It was just too risky for us.  We were ready with letters waiting!  We received a call that we were the first people private insurance has ever offered to pay their part without going through appeals.  Certainly God was now on our side of this. 

The cost of the device is over $10,000.  Our insurance covers 80%, still leaving us with a substantial $2400 to pay out of pocket.  On top of weekly PT and orthotics costs.  Jim and I discussed it at length and decided it was something we could not justify on top of our other expenses and trying to get out of debt.  He contacted Cole and thanked him for his time and said we would be in touch when the timing was better for our wallets. Cole was very nice and said he'd be waiting for us.  

We received an email this week that after review, the company was willing to take over $900 off what we owe, reducing our total to about $1400.  I was ecstatic!  Jim still feels like we should focus our finances on getting out of debt and I agree.  Staying home with the boys the first few years really took a hit on our finances and we're still digging out. But I still want to make this a reality for Jim.  I still want him to have that feeling he had that first day when he walked.  

So, here's where I would love your help.  I have a very proud husband who is truly a gift from God to me and everyone he meets.  I treasure him, he's an amazing father to our children and I couldn't ask for a better husband.  If having this device gives his body a few more years to be with us comfortably and gives him a completely different way of life, then I'm up to the challenge of fighting his pride.  We don't know long term how effective this device will be.  Some HSPers have had success with it, others haven't.  I know it's a lot of money for something that may not be effective for him in a few years, but for right now, it's the only thing we've got going.  He claims I make very good chocolate chip cookies and other treats that I'm trying to avoid. So I had the idea that you (our friends) could help me out by buying some cookies or another requested treat. Baking is a great stress reliever for me, but the added weight then adds to the stress, I need to pass that part along to someone else.  Below are some "stock" items that will be available for sale.  If there's something else that you would like, please let me know and I'll get in the kitchen.  I make very little low-fat or even attempt to make it look healthy, just taste good.  My tastebuds and stomach could care less how things look!

*Chocolate Chip Cookies
*Ginger Cookies
*Sourdough Bread
*Whoopie Pies
*Cake Balls
*Brownies
*Cakes
*For our Northern friends, I make some great sweet tea I'd love to share with you! :)

I'm not putting prices on these items, I'm asking for your donation for these goods.  Every penny will go towards lowering our out of pocket costs for the Walk-Aide for Jim.  If we're blessed with excess we will use those funds towards the 3 month supply of new electrodes ($200 every 3 months) and more batteries!  If you'd like to place an order, please send me a message on Facebook or at jimandshea@yahoo.com.

Thank you for reading this.  I know everyone has some burden(s) they are carrying and I so very much appreciate your prayers over this more than anything.  During our prayer time tonight Nathan asked if we could pray for his toenails to stop growing so we wouldn't have to trim them ever again.  Part of this is pure annoyance at the task and the other is it's a bit painful from the way his toes are beat up while he walks.  Jim told him since God created Nathan the way he is, toenails and all, we wouldn't pray for change because God's design for us is perfect. Even for my boys with HSP.  I would just like to make some revisions to their design if God allows.

Thursday, July 29, 2010

Already

I did it, I created our monthly menu for August.  Nothing new there, huh?  Another month, more meals to plan for, shop for, prepare for.  Screeeeeeeeech, what is that date that's lurking at the end of the month, that date I normally like because it's payday?  You can't really be serious that August 25 is one month away and Nathan will pack a backpack with a very long list of items from his supply sheet and a cool lunchbox and head to Kindergarten for the first time.  I have had mini-breakdowns every day for the past week.  And there's still a month to go.


As I was shopping today for our dinner menu and tossing in some lunch fun, the thought came to me, will Nathan want to take this for lunch?  Will this be cool enough for him?  Will he have enough time to eat?  I know he can open a fruit cup at home, but what if he makes a mess and gets some juice on his pants and everyone calls him pee-pee pants when it's just fruit juice?  The boy loves some Ramen so we've got to experiment with Ramen in a thermos.  And doesn't he eat wicked early?  He'll be ravenous when I pick him up.  All that brain energy being used requires food.  Let's not even discuss his lunch box choice dilemma.  I have looked at so many I'm close to brown bagging it.


You would think I've never been in a classroom, that I've never been a student, much less a teacher.  I am trying so very hard to allow him to be himself and not get anxious over having the right folder, eraser, pencil, glue stick, hand gel for class.  I want the teacher (oh, who will she be????) to know he's the most amazing kid she'll ever have while at the same time I know he's human and we all have faults.  I want to hope that he'll be a good influence on others and not be overly affected by the things he is exposed to at this age.  I want to hope that he'll make some really good friends.   I want to hope that no one will think twice about some wicked cool braces he has on his legs or that he sometimes falls or that he isn't as fast as others.  I want to hope that I won't miss him so very much, but I already know I will.  I have a month to go on lunch dates with him, play in the pool, shop at Target and leave a popcorn trail.  I have a month to go to the library with him, to visit friends with him, to run off to somewhere for an overnight if we desire.  I'm running out of time to be home with my most amazing Nathan.  


Let me be clear, I have Brady at home and will treasure having some one-on-one time with my little baby because we don't have much of that.  But for five and a half years, Nathan has been  here for me all the time.  Perhaps I have held on to him too tight, but I wasn't about to let him go.  I didn't and don't want to miss a moment with either of them.  And now he's going to be in an ugly old concrete building all day with a strange lady (I'm sure she'll be fine and we'll all love her, but right now she's a stranger) and other strange children and I'm not going to know what all he's doing the whole time.  He loves Brady and playing with him, teaching him, loving on him.  I am not ready for the two of them to be apart for long periods of time.  I believe there's a hidden umbilical cord the two of them share.  He's such an incredible little helper at home and I so enjoy watching him learn.  He soaks up knowledge better than my any sponge I know.  I don't think there's anything he can't do and I'm so very proud of him.  I'm just not ready and I've got less than a month to be ready to drop him off in a classroom with a smile on my face.  Once I walk out Brady and I can fill up at the local bakery and drown our sorrows in some sugary confection.  


Dear God, please, please slow down your clock so I may enjoy these last days of summer with my boys.  Help us to make the most of these days and not be grumpy or grouchy with each other.  It would mean a great deal to me if you could extend summer just a wee bit more, thank you.

Wednesday, July 28, 2010

True Gifts

I named this blog Gifts From God, Loved by Mom because my boys are gifts from God.  That's actually the meaning of Nathan's name.  I wanted to leave the blog title to that, but someone else has it.  I added loved by mom-do I really need to explain that?  I also think we all know by now that I am not the most creative marker in the box either so thinking of one of those really catchy names wasn't happening and I thought that naming it after myself was a bit much.  Besides, we all know what I talk about ALL the time.  Tonight I got another glimpse of why I conisder my children to be such perfect gifts from God.  Please don't mistake that for me thinking my children are perfect, they are perfect gifts-like diamonds from Tiffany.


Before I tell you about that let me preface it a just a bit with the week I've had.  The boys and I went to Emerald Isle Tuesday with my parents and Candi's family came down for a bit, too.  Jim left for camp with our middle schoolers Wednesday at 3 am in Kentucky.  I did not get my helpmate, I mean, husband back until last night (Monday) at 1:00am.  Yes, that's a full seven days my boys went without their dad.  Do you have any idea what that means to them?  I am sure this sounds very whiney here, but we are such a family family.  Not a typo, we actually like each other, most of the time, and enjoy our time together.  Not to mention that I so very much rely on Jim to balance out our boys.  They are gifts from God, but this week I think they were a special delivery from somewhere else.  They argued, wrestled, fought, talked back, bickered, didn't eat well, didn't sleep well, and rarely said nice things to each other for seven days.  Maybe I'm exaggerating things a wee bit, but to an overly tired mom who needed a break in there somewhere and now needs a vacation from her "vacation," it's well deserved!  Jim allowed me to sleep in, in Brady's room, this morning!  I know he was exhausted, too, but I think he picked up on the "they are yours today" vibe before they even woke up.  Actually, he was beside himself to be with them again!  We had a pretty good family day, Jim spent most of it rehashing EVERY moment from camp, EVERY moment.  By the end of the night, the boys were back to being the misfits.  What on earth?  I thought having Daddy home would solve that.  Oh, poo.


Jim did take over the nightly routine which is wonderful because brushing teeth and getting ready for bed is just as enjoyable as going to the gyno.  We had a wonderful family devotional time, Brady paid enough attention to be able to answer a question that wasn't God or Jesus (his usual responses and when those two don't work he throws in Moses for good measure).  As I was having my Nathan and me time tonight he gave me a big hug and said, "I've got you chained in, you can't escape."  


I freed myself (almost lost an earring and I'm pretty sure my neck is permanently twisted) and said, "Baby, don't you know my chains are gone, I've been set free."  


He gave his infamous Nathan grin and said, "Mommy, let's sing that version of Amazing Grace together."  He belted it out and asked for more.  I told him we could sing more tomorrow, it was getting late.  


He said, "I'll just sing to myself, how's that?"  


"Sure, buddy, good night, I love you."  And then I did as all good parents do, I listened at the door.  With ginormous tears pouring down my face as he sang and God "rang-sunged" him. He wrapped it up and said outloud to himself, "Oh, yeah, right, MY prayers."  Listening to your five year old son pray independently for you, your husband and your other son and telling God how much he loves Him is one of the greatest gifts I have ever received.  I honestly don't know what Jim and I are doing as parents, other than fully trusting in God that He is moving through Nathan and Brady without us.  If He's not then we're bound to seriously mess up, we might anyway, but I hope that God is so firmly rooted in them that our screw-ups can be managed with Him.


So very thankful for the gift of a husband returned and two angels here on earth.

Tuesday, July 27, 2010

Some things I wish I didn't know

In life there are some things you wish you didn't know or really, who needs to know THAT?  Such as  the age old question of how many licks it takes to finish off a Tootsie Roll Pop or that my dad takes out his front tooth at night. Yep, you're wishing you didn't know that now, too!  Good thing he knows nothing about this blog or what a blog even is!

But there is something I know too much about or maybe not enough, I'm not quite sure.  In the 2386 days, 3 hours, 1 minute and 44 seconds since Wednesday, January 14, 2004 when our lives changed forever, I've learned more than I ever wanted to know about death, grieving, love, grace, redemption and hope.  I have asked countless questions to go along with that knowledge, some that never have answers.  I like to tell myself that having an angel waiting for me has to have some definite earthly reasons.  In the past year, I've found some.  On those occasions, people have come to me regarding infant loss.  They want to KNOW what to do.  It takes everything in me not to laugh.  I know that sounds terribly cruel.  And this comes from the biggest "doer or want-to-be doer" or them all.  I want to be able to do something to fix things.  Well, in these cases nothing can be fixed.  It's just the beginning of an endless journey to mending a hole that has no chance of being repaired.  Once I get beyond that idiot moment, I feel the utmost pain and sorrow for that family and return to that night.  Every image that has been burned into my brain comes flashing back and I try to remember what was most helpful and what would we have liked better. There's an incredible organization out there called Now I Lay Me Down to Sleep where they send photographers to the hospital to take pictures of the baby and the family.  These are some beautiful and most treasured items a family can have.  We have some photographs of Harris that a nurse took, but none with us and not nearly to the degree of these.  I always suggest giving them a call so that someone can be sent out soon.  I also suggest encouraging the mom and dad to hold their baby as much as possible.  At first I didn't want to hold Harris.  I was so upset with everything and couldn't handle holding a baby who wasn't living.  How badly I wish I could have those moments back, they were the only moments I had to hold my angel until we meet again in Heaven.  The hospital did a great job with keeping some hair for us and doing footprints and handprints.  My nurse was an angel herself and handled so many of these details for us.  

Here's where it gets tricky about advice.  One of the things Jim and I remember most is having a friend come in and give us both tender hugs and then she left.  There weren't any words, just gentle and tender love from a friend.  So often words that are meant to be hopeful or encouraging can be so damaging. I'd advise not saying anything, simply listening, holding and allowing those grieving to tell their story (over and over and over again).  

My sister, Candi, has had to call me twice in less than a year for two of her friends.  One friend's sweet son, Ayden, earned his wings on August 25 last year.  Both mom and dad are teachers, first day of school and saddest day of their lives. Another friend is more recent.  Candi reached out to me because she knew that I KNEW what loss was like.  My loss is much different that Lindsay and Jeremy's, but we share the grief of having angel babies.  Having my sister call me for her friends taught me two things, Harris lived and died so that I could in a very small way help someone else and so that my sister would be able to help them as well.  Does that make it any easier?  Not on your life.  I don't think I realized the complete magnitude of pain his death caused my family until Ayden died and Candi reached out to Lindsay.  I saw and will never forget the raw pain in their eyes at the hospital when they first entered the room, but I think they all tried to shield me from seeing that afterwards.  Candi went to action immediately and did more behind the scenes work than a stunt double.  VeeCee, in her sweet gentleness, cared for me so very tenderly and I'm sure took orders from Candi. All while they were both in pain.   Who was taking care of them?  Something to know to do, while the parents are suffering, there are other relatives suffering, too.  Take care of them please.


There's so much more to know and do and be and see and all that.  And I really wish I was still ignorant of it all.  However, I am certain, without a doubt, that God's perfect plan is at work in this.  And I am holding on to that with everything in me.  


While this came from another blog, I agree with it whole-heartedly.  And I hope you never have to use it, ever.  But it can't hurt to look it over because every time I get to talk about Harris or his story he lives a little more.




A Bereaved Parent’s Wish List



I wish my child hadn’t died. I wish I had him back.




I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that he was important to you as well.




If I cry and get emotional when you talk about my child, I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.




I wish you wouldn’t “kill” my child again by removing his pictures, artwork, or other remembrances from your home.




Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you more than ever.




I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.




I know that you think of and pray for me often. I also know that my child’s death pains you, too. I wish you would let me know things through a phone call, a card or a note, or a real big hug.




I wish you wouldn’t expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.




I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he is dead.




I wish you wouldn’t expect me “not to think about it” or to “be happy”. Neither will happen for a very long time so don’t frustrate yourself.




I don’t want to have a “pity party,” but I do wish you would let me grieve. I must hurt before I can heal.




I wish you understood how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you.




When I say, “I’m doing okay,” I wish you could understand that I don’t feel okay and that I struggle daily.




I wish you knew that all of the grief reactions I’m having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I’m quiet and withdrawn or irritable and cranky.




Your advice to “take one day at a time” is excellent. I wish you could understand that I’m doing good to handle it all at an hour at a time.




I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.




I wish very much that you could understand – understand my loss and my grief, my silence and my tears, my void and my pain. But I pray daily that you will never understand.








Saturday, July 17, 2010

New Things

I tried running for the first time this week.  Nothing was chasing me.  My children were not running into the road and no one was after them.  In fact, I thought they were asleep.

Jim and I have been working out at least three times a week since June 1st.  It's been beyond amazing to have a partner in this.  There are many days that I just don't feel like doing anything but reading a book at night.  Jim will come downstairs all suited up and ready forcing my guilt complex into overdrive.  I then must work out with him.  I think I've let myself down twice by not working out with him.  So on Tuesday night when he was out building a boat for camp and I'd had a terribly emotionally draining day, I could have, maybe even should have skipped working out. But I thought, hmph, I'll show him I can do this.  And I even tried something new.  I did my regular stuff with weights and I've worked up to 150 crunches a night.  But then I turned on a podcast for Couch to 5K.  WHAT?  5K, like if I finish this I'll get $5,000, right?  I wish.  I'm going to trust God on that answer and see what happens.  No, really, it's a training technique that prepares your body for running distances.  I've got the Magnificent MILE (yeah, that's my cutie on the slideshow!) coming up in September.  Notice, MILE.  Yep, I need to work myself up for it.  See, I've been working out at home using Leslie Sansone's Walk at Home videos and a Biggest Loser video.  Both are great tools.  Both can be done in the comfort and safety and air conditioning of my home.  No one is watching me for entertainment purposes, it's all great.  So I thought I could swing the Couch to 5K inside, too.  I kinda had to, because I can't just leave my angels in bed while I go off attempting to run.

I took my puffs from my inhaler (recently been confirmed I have asthma, gee, I could have told them that a long time ago), tied my shoes, grabbed some water and pressed play.  It starts out very nicely-listen to some worship songs while you walk.  Hey, anyone can walk for 5 minutes, right?  Then the guy says, "Well, now you're warmed up and ready to RUN, go!"  I went-around in circles, through the kitchen and back around again for 900000000 seconds. Okay, I think it's only 60 second intervals.  During my last run back, I am greeted by Nathan saying, "I really like that song, can you play it again?"  Excuse me, aren't you supposed to be in bed and no, I'm not replaying it because then I'd have to run again!!  I finished up my run/walk and tended to him.  He needs lots of night time stretching lately.

Can I just say how exhilarated I felt after that first night of running?  I wanted to run outside and jump in the puddles from the big storm.  I proclaimed I enjoyed running as my facebook status.  I was envisioning running for fun every night.  I was already thinking of when I would need to replace my shoes and would Bob ever allow me to join his running group.  Then reality set in.  Fortunately I wasn't so out of shape that my body couldn't handle it so I woke up feeling fine and you're supposed to take a day off. Jim and I did another kind of workout the following night.  Then last night (the night I was supposed to run again) I suffered an incredible (not great incredible, but the true meaning of the word-not believable) migraine.  Jim sent me to bed suggesting working out was not in the cards for me.  That brings me to tonight.  Tonight's run was prefaced by a very yummy hamburger and some (NOT about to count) homemade cookies I just had to make for stress relief.  I'm blaming the cookies.  Jim was home so I took the opportunity to venture out with the mp3 player and do my thing.  Oh my...

Poor neighbors who had to watch that spectacle.  They've never seen me out sweating or moving fast.  I'm sure many of them turned on the news looking for end of world happenings.  I passed many of them and held up my player for explanation that I was intent on my workout.  The first five minutes are walking.  LOVE those minutes.  Matt and Nikki were just coming up behind me and I waved with the player to indicate I was on a mission.  Then I had to break out into a 90 second RUN in front of the Juengel house.  Really hoping they weren't home.  It turned out that every time I had to run I was heading uphill.  I need to work on my route!  It was pretty pathetic, but I finished and I can say tonight that I do not enjoy running-outside in high humidity temperatures, or cold temperatures or rainy days or sunny days or perfect days when God is smiling down on me.  He was actually blowing me kisses at every uphill run with a breeze on my face.  Not quite as nice as air conditioning, but there's yet to be air conditioning at the Mag Mile so I better suck it up now!

I am still not in love with running, my shins will let me know tomorrow if I really dislike it and I know I need more girly support.  But I really don't want to give up on this and would like to see how the endurance aspect works.  Wouldn't it be nice to be breathing like a person instead of a Kentucky Derby winner at the end of the Mag MILE?

Monday, July 12, 2010

12 Times to Say I'm Sorry

I received this in my inbox today.

12 Times to Say "I'm Sorry"

Say "I'm Sorry" (and really mean it) whenever you...

• Are wrong.
• Are rude.
• Are defensive.
• Are impatient.
• Are negative.
• Are hurtful.
• Are insensitive.
• Are forgetful.
• Are confused or confusing.
• Have neglected, ignored, or overlooked something important to the one you love.
• Have damaged, misused, or impaired something that is not yours (even if it was an accident).
• Have not said "I'm Sorry" as sincerely and quickly as the situation warranted.

I immediately forwarded it to my husband, even though we share an email account because he wouldn't read it otherwise, with these words:

"I think I probably owe you an I'm Sorry for the rest of our lives based on this.  Wow!

I love you so much and appreciate how much you put up with me!"

Looking at that list completely overwhelms me as a wife, a mother, sister, daughter, friend, coworker, bystander at Walmart, human.  If I take apart the list and examine my daily life, then chances are I need to be saying sorry to someone throughout the day.  I'm not exactly sure I like what this is saying about me.  

  • ARE WRONG-who, me?  Really, there are times when we all make mistakes.  Some are big, some are small, and some really don't make a difference in the big scheme of things.  BUT, taking ownership and responsibility for your actions is the bigger key here to me than the actual mistake. 
  • ARE RUDE-oh yeah!  You better because your mama raised you better.  Is this rude as in you stay in your car with the door open blocking two parking spots when others would love to have your spot because you just need to sit in your car with the door open for a minute and think of your big Aldi purchases?  Or is this rude as in I'm sorry, are you in the room and I'm not even going to bother talking to you rude?   Or is this rude as in you ran over your mom's foot with the heavy shopping cart while she was wearing flip flops after you stomped her foot with your size four shoe?  Say you're sorry and move on.  I'm sure the victim already has...
  • ARE DEFENSIVE-or maybe they haven't.  So you kinda knew that your hubs was on edge about something yet you continued to push because you were on edge.  Well, eventually someone's got to fall off that edge.
  • ARE IMPATIENT-wait, there's more?  With life's circumstances, with day-to-day why does it take you so long to do THAT?, with that same rude person at Aldi?  Hmmm, I cannot imagine being impatient.  But I'd rather apologize for it than pray for it's opposite!
  • NEGATIVE-as in not positive?  I have to be sorry for that, too?!  Well, yes, think of all the positive things in your life, do they not outweigh those pesky little negative ones?  Especially when you're talking about PEOPLE and not things.  Positive thoughts, positive thoughts, positive thoughts...all facebook statuses must now be positive.  Let's see how long that lasts (Whoa, there, is that negativity or just sarcasm?)
  • HURTFUL-ouch, do I need a bandaid?  Again, so many meanings.  Intentional and unintentional.  I could spend every waking hour debating whether or not the things I've said or done throughout the day are hurtful to others or not. Then the responsibility character flaw I have would totally freak out wanting to not allow any words to come out for fear of being hurtful.  I don't think I'm ever intentionally hurtful, but you NEVER know how others will take what you say (or write)-we're humans after all.  I am always asking Jim, "Do you think that what I said, did, didn't say or do, upset him/her?"  It's a never ending battle of sarcasm and my attempts to be funny along with my just not being that smart sometimes.
  • INSENSITIVE-did you feel that?  Some people have this problem of saying things without realizing that others have a heart.  Some of us with that heart tend to have been born with a more fragile heart than others.  We're just a bit sensitive when you say, "Uh, are you going to wear that?"  Consider your wording and how you would feel if you weren't born with a shatterproof heart.
  • FORGETFUL-what did you say again?  I'm sorry.  I'll go ahead and tell you that now. Nathan will tell you that I am THE most forgetful person he knows.  I must tell people to remind me of things several times.  I write notes to myself to remember, I email myself, text myself, set alarms, cover my world in post-its; yet I forget things.  I've been borrowing Nathan's brain for the past few years.  "Nathan, remind me to run by the office.  Then we need to return the library books, then drop off the recycling."  He reminds me to turn left just as I'm about to zoom through the light instead of dropping off the recycling that is sitting right NEXT to me in the car!  What was that you said???
  • ARE CONFUSING or CONFUSED-huh?  Again, I'm sorry, I don't get this one.  Does this mean I've confused you about what I'm trying to explain (that's why I say, "Does that make sense to you?")  Or am I apologizing for being confused?  Then we're in a heap of trouble because we may both end up on a continuous cycle of apology.  That would be U-G-L-Y.  There was a not nice U-G-L-Y cheer when I was growing up, now that's something worthy of an apology.
  • HAVE NEGLECTED, IGNORED, OR OVERLOOKED SOMETHING IMPORTANT TO THE ONE YOU LOVE-about that...Well, I meant to, but I got confused and forgot.  I got the note from the dog that we're supposed to feed him, every day because he can't do it himself.  You mean you didn't notice I bought this wicked hot dress and heels-I've made an appointment at the optometrist for you.  Nope, I haven't spent the last three weeks working on that project, nope, nothing to pick up on there. 
  • HAVE DAMAGED, MISUSED, OR IMPAIRED SOMETHING THAT IS NOT YOURS (EVEN IF IT WAS AN ACCIDENT)-you have insurance, right?  Thanks for letting me borrow your _________, no, it's in mint condition just like when you loaned it to me.  What, the car is totaled? the table is scratched? the rack is broken??  Oh, that's right, I loaned them to you JUST LIKE THAT.  Seriously, I know your mama raised you better than that.  And just for the record, I'm sure I apologized and am still apologizing for totaling my sister's car sixteen years ago.
  • HAVE NOT SAID "I'M SORRY" AS SINCERELY AND QUICKLY AS THE SITUATION WARRANTED-yes, you have to apologize to him and mean it.  We're not toddlers and preschoolers anymore.  We have to stand behind our words and actions. I tell the boys to not even bother saying it if they don't mean it.  But don't wait until someone (me) has forgotten about it to say sorry.  Some people get off so easy on that technicality with me.  They know I'm forgetful!
While I don't think I'm an evil person I do see where I need to let go of some things in my life so that I don't have so many potential opportunities to say I'm sorry.  I think they could have included this one:
  • NOT SAYING THANK YOU SOON ENOUGH-because low and behold I'm terribly guilty of it.  And the person I'm thanking (with a note) has most likely forgotten their good deed. It's not that I don't write them, I enjoy writing them, I just never get them to the post office or get a stamp on them.  Shame, shame, shame on me.  And I'm sorry and thank you.

Sunday, July 11, 2010

The Lord is like a shepherd to me. A shepherd takes care of his sheep. The Lord takes care of me. He gives me everything I need. He gives me nice places to rest and good water to drink. He helps me to be strong. He helps me do the right things. Even when something sad happens, I am not afraid. I know the Lord will be with me. The Lord makes me strong when I face my enemies. He honors me. He gives me more than I need. I know God will love me all my life. And I will live with Him forever.

There's your easy button, folks. This came from The International Children's Story Bible by Word Publishing. The boys have gotten quite a collection of Bibles going and love to hand me a different one each day to pull from. Each scripture has an illustration from a child from somewhere on the globe. It's adorable. I opened this version today and my hands went to this page. Exactly what I needed to hear and in these simple words. No green pastures or still waters, but a nice place to rest & water to drink. That's about all this spent mind and heart can accept so my God knows exactly what to offer. How grateful am I to have Him and to have two children to hand me exactly what I need when I need it?!

Saturday, July 10, 2010

Little Boys Smell(s)

As I was writing the title I couldn't decide if it should be Little Boys Smell or Little Boys Smells.  I'm thinking about both here so either fit.  Nathan and Brady met a new friend today.  His name is Nathan and he has CP.  He has the same physical therapist my Nathan has and she suggested me to the mom for someone to talk to.  Someone who encourages and challenges her children (who walk differently, not sure I'll use that D word or that H word, ever) to do whatever their bodies allow, whatever their hearts beg them to do, however they can get it done.  Of course we arranged this meeting two weeks ago unaware that it would be in the high 90s this week.  We planned an early morning playground meeting, but after an hour we took it inside.  My boys were sweating enough to fill our pool.  The great thing about little boy sweat is that is smells like little boy.  It doesn't smell like middle school camp or my sister's old CRV.  It has the harmonious blend of dirt, frogs, and puppy dog tails!  Actually, for my boys, that's not too far off.  Just add in some Nathanness and Bradyness and you've got the most perfect arrangement for your nasal factory.  While it's not something you'd find on the shelves of your local department store for purchase-I know, without a doubt that in twenty years I will be wishing I had bottled some of that up.  A friend saw the boys during this sweaty time and she hugged both boys tight.  I could tell by the look in her eye when she mentioned their smell that she was thinking of her sons at that age (they are now my age).  As I held my sweet Nathan tonight during our devotional I tucked my nose into his fluffy brown hair and deeply breathed in.  I couldn't get enough of him-sweaty, freshly bathed-he's been created so perfectly.  I'm trying to capture and savor that smell.  He'll be one of my Crossings middle schoolers before long and well, we know what they smell like!  And I'm not even going to write about the other many ways my boys like to make things smell in our house...

Thursday, July 8, 2010

Amazing Grace

We all have them, those moments where we're simply in the car, heading from A to B hoping we get there in one piece a bit less frazzled than before and on time.  I'm terrible about running late, I always think I have time but it never works out-another story.  I'll confess that when I'm driving I have a few different states of mind:

1. I'm driving, I don't hear you back there.  I'm thinking about this and that.
2. I'm praying or at least talking in my head to God, not an announced, "Hey God, it's me" prayer, but a "This is what all is going on, what do You think about it?"
3. Ahh, it's quiet back there.
4. Wow, they are getting along nicely, aww, man, jinxed that.
5. Hey boys, what do you think about..., how about..., do you remember the time?, well, I'm not sure why God gave boys man boobies.

Oh, I'm supposed to focus on the road?  Yes, I see the black top, white stripes in front of me and the cars all around.  But my mind is so often somewhere else, I have God to thank every time we make it home each day.  Today I was having movie scene visions of other cars crashing into us while we were laughing along.  The other night I dreamed about Jim driving off a walkway/pier into the ocean while high school friends watched and I desperately tried to get the boys unbuckled.

Anyway, today I don't know exactly where I landed in those states.  I'm pretty sure it was close to number four without the jinx happening.  We were just about to turn onto University Drive by Girl Lowes when Nathan asked me to turn the radio up.  I couldn't hear anything so I was surprised when he said, "I really like this song."  It was Chris Tomlin's Amazing Grace-My Chains Are Gone.  Nathan has loved Amazing Grace for as long as I can remember.  He went months having me sing it to him (the original) every night before bed, all the stanzas.  He so beautifully sang it at my Grandmother's funeral. So today he begins singing.  I don't think anyone in our family will ever be on American Idol or even in the choir at St. Mark's, but to hear the words of that song come out of his mouth has got to be what Heaven is like.  I looked back and saw Brady mouthing along with him.  I need to help him learn the lyrics, too.  Nathan then asked me to sing along.  I didn't want to, I love that song, too.  But I so badly wanted to just listen to my angels singing.  It was one of those moments in the car where passersby would think I just either just heard terrible news or was leaving a funeral there were so many tears just pouring down my face.  But if they had met me at a stop light, I am pretty sure they would have seen the radiance of God shining through me (and all of us) as I got to fully experience Him through my children.  And I'm not sure that my attempt to put it into words has been justified.  It's been one of those days where being a mom has been easy, joyful, and something to tuck into my noggin and heart for days that aren't quite like it.  I'd find myself smiling at random times today just thinking about my boys.  Such a blessing and I am so incredibly thankful.




It's been way too long and I don't even know where to begin.  But I'm thinking that the last month of sleepless nights can be cured with writing.  We've had THE busiest summer to date and to think my children are only three and five wears me out.  I can only imagine how much busier they'll be when they are older.  Nathan was concerned about missing his friends when preschool ended, but he hasn't had time yet. 

We finished school, then had swim lessons so we could confirm Nathan is a fish.  Then both boys were gifted a week at Kopper Top Camp.  It's an amazing camp in Liberty where the boys were on a farm all morning long and worked with horses, rode them and interacted with all sorts of farm animals.  Every day they came home sweaty, dirty, tired and deliriously happy.  We are forever grateful for this gift knowing we could not repay the price of this experience for them. 

During that time I was gifted SOME alone time.  Much of those days I had plans, but on Wednesday of that week, I spent the entire day at a friend's pool.  Not my pool, with lots of others and the rowdy neighborhood teenagers, but a pool all to myself.  I read a book, swam some laps, listened to music of my choosing and thought about never coming off that floaty chair.  It was the first completely guilt free moment I've had in almost six years.  I say guilt free because when we have date night or when I have a time for myself, I always feel guilty about leaving the boys.  Or I feel like I "owe" Jim some alone time later so it's not really free.  This may not make sense to others, but it's how my bizarre brain works.  So, for this one day, my husband was at work, my children were so very happy at camp until whenever I wanted to pick them up (could have been 5-6pm if I wanted) and I was on my own.  I debated for the longest time about going to stores, you know getting in and out of the car ALONE, but what fun is that?  I would end up talking to myself because they weren't with me to talk to.  And I didn't want to tempt myself with wanting to buy things.  I essentially "wasted" a day by doing nothing.  However, that wasted day was extremely beneficial to my well-being.  It would have been better if I made sure to put Jim down for the emergency contact that day.  Every time my phone rang I jumped out of the pool to make sure it wasn't camp.  Wouldn't you know that would be the day that I got about fifteen calls?  Seriously, my phone never rings except on this day and I didn't answer it.  That's why they made voicemail!  I picked up my children earlier than necessary because of some thunderstorms, but when I did pick them up I was a relaxed mommy who didn't mind that they were wet, cranky and had eaten three packages of fruit chew thingies.  If this ever happens to me again, I'll also be wise enough to have dinner already made so my day-of-do-nothing can continue!  The biggest problem with do nothing days-they have a habit of running over.  By the end of the week I had five loads of laundry to wash and put away.  Oh well.  God calls us to rest on the Sabbath.  I know Biblical time frames are different from ours.  So I'm thinking that my once in 6 years day of rest is equal to one Biblical day of rest, right? 

Thursday, April 8, 2010

Holding on to HOPE, again

I'd like to say that in my five months of not blogging I'd have tons of brilliant things to say.  That I would have healed some wounds, enjoyed some holidays and grown abundantly in my faith and in my parenting.  While most of that has happened, I have been bombarded by attacks on the people I love and care for.  My team of volunteers has been attacked with death, disease, illness, loss, pain, and suffering.  We've had little celebration and yet we've held tight to the One who conquers all those things and promises us a beautiful future.  My best friend still mourns the loss of her baby we would have welcomed into the world next month.  Another friend's facebook status today reminded me she should be celebrating eighteen months with her gift from God instead of wondering what he should be doing.  A wonderful lady my family adores (the boys most likely think she's their grandmother) was diagnosed with breast cancer last week and begins treatment and the fun of so many people fondling her breasts.  Their babysitter and our friend is sending her fiance off to Afghanistan for a year this weekend for the third time since they've been together.  Another friend's husband is suffering from endless headaches without a cure affecting every aspect of their lives.  


I sometimes get so caught up in the doom and gloom of those prayer requests and the countless others that come to me throughout the week that I feel like I can't come up for air.  Even though I know that all that is expected of me is to give it all to my Father and He'll take the burden from me I still feel like I need to hold onto it myself.  I'm a doer by nature, I feel like I need to be doing something to try to fix it.  There's nothing I can do in any of those circumstances listed above but pray and pour out my love to those I love.  For a doer who likes to cook, clean, bake, drive, organize, anything for others-laying it all out in prayer is a difficult task.  Because that's sitting still, listening, talking and waiting and HOPING.  And that's what I hold onto.  Hope, neverending, everlasting, hope.  I can do that because in the midst of all of those prayer requests I often get just as many praises of how God has worked in the lives of my family, friends, and team members.  Like our friend Craig who is heading to Baltimore at the end of the month to donate his kidney, a true miracle!  God's miracles, His love, His grace, His power.  In that I am blessed and full of gratitude. 


The joy of that is passing those lessons on to the boys.  We pray every night as a family.  We ask them if they have any prayer requests.  Nathan normally refrains from bringing up any.  Brady tends to have silly ones or personal ones.  Tonight Brady asked that he would feel better soon because he was not feeling good because of all of the yellow stuff on the cars (gotta love spring in NC!).  When Nathan does ask for something, you know it's a real and rather genuine one.  I love that about him, he's beyond the age of praying for "silly" things (I know nothing is silly to God, but asking that wolves not eat us is a bit on the extreme side).  He's sincere about who and what he's praying for and I love to hear what's coming out of his mouth.  The night before my sister's birthday he asked that she have a great birthday tomorrow and that she know how much we love her.  I love how thoughtful he can be and how he thinks of others first.  I love knowing that they are learning about how to pray and we love sharing about the times God answers our prayers and blesses those we love.  They are learning about the love and grace of our Father through the ups and downs of our lives.  We are not the type of family to hide things, we openly share the ups and downs and pray about it all.  While it may be hard to sit and pray, we know it's always the best thing to do in every situation.


I'll try to get back to regular blogging. I think I'll get the creative juices flowing again and let them loose!!