Monday, July 19, 2010

A test of strength

My strength is being tested big time right now. I'm just trying to remember that its only a test and that I just need to hang on and get through it!
You know in the last two years I've met a ton of friends online! Most of which I felt instantly connected, and it felt like we'd been friends for years. I've even met a lot of my local friends online. Our Down syndrome association is not all that great, and I don't think I would have met these friends without my blog.
But I've recently had my heart stepped on by someone I thought was a good friend. Len't my shoulder to cry on, only to be lied to and betrayed. It has left me much more wary of people, although I'm trying not to let it, because I know the majority of people are very real, and traveling the same Down syndrome road we are.
I'm feeling a little lonely in the blog world right now also. I know its summer and everyone is playing, but it seems blog traffic is way down, which is just hard because that's where most of my support group is. Which also means fundraising has slowed to nothing. I'm just hoping this last big fundraiser will bring in lots of money, and that getting it out of cyberspace and into the community will help!
You may remember that my garbage disposal died and then my dishwasher died, literally at the same time, and both had to be replaced. Then yesterday, Carter was playing the WII and let go of the remote and hit our 50 inch TV that we've only had a few months. I don't know if the TV can be fixed, but I do know if it can its going to cost a pretty penny! Even though it was an accident, it was kind of that last straw in our house. I can also imagine his terror when it happened, and how scared he was to tell me. I know boys are destructive (I'm dying for some girl naughtiness!) but it seems like the boys don't respect anything. Carter broke his bed weeks after getting it, and I can't get them to keep their room clean to save my life. It always goes back to trashed, so they don't respect anything they have. So right now we've basically taken everything away from them that they love. The WII is put up, Carters bike is put up, they are basically on lock down, and it sucks! We were supposed to go swimming yesterday, and get Jax in the water finally. But after the TV incident, swimming was off the table.
My sweet, messy faced little go getter is not seeming so sweet right now!

Jax labs from Saturday were interesting. His albumen is slowly coming back up so that's good, but his bnp, which looks for heart failure, is up. Normal is 100, his is 400. Its not severe failure, meaning something is structurally wrong with his heart, but it means that something is causing his heart to work harder. My guess is pulmonary hypertension. So we wait for doctors to call today and give their take. He's probably going to want to go back to the cath lab, and I was really hoping we could make it through a year with no surgeries. I guess we'll probably never have that luxury! But this all can't be coming at a worse time, when we are getting ready to leave the country for weeks!
It was actually a huge stress reliever last night to work out in my front yard. Making my new flower beds beautiful. I guess that's a good thing because my backyard is in need of some serious loving. So maybe that's where I'll focus my stresses, and get my yard done at the same time!

34 comments:

Rochelle said...

Oh Lacey,

I am so sorry that anyone would hurt you. You have such a kind and loving heart.

We are praying for you and the whole family right now.

Rioux Family said...

You can send Carter to me haha. I'll make him work! He can feed lizards, keep Mia busy, and be the official spider killer =P <3

Melissa M said...

Hugs! While I love my IRL friends, my online friends are my T21 support, and I would be lost without them. Summers are busy, and I hope you are able to take some time for yourself too. You, and your flowers, will appreciate it!

Anne and Whitney: Up, Down and All Around said...

oh lacey - i am sorry about whatever happened that you wrote about that has made you wary of trusting people. i am just so sorry to read that/hear that! the shower pictures were so fun - hopefully everyone had a good time! sorry that swimming did not happen because of the accident with the tv - doesn't it feel/seem like it is always something?!?
i wanted to tell you - we received the bows on saturday and they are ADORABLE!!!!!!!!!! I LOVE them and the girls have already been wearing them. I hope your "test of strength" feelings will go away soon and things will be looking up. i am concerned to hear about jaxson's heart - when is your cardiology appt again? hopefully they can tell you more based on the labs and further tests at that appt. thinking of you!

dee said...

Lacey, I'm sorry you are having such a trying week... For what it's worth-I have the same issue with my son respecting his things...I've even gone so far to collect everything on the floor in a trash bag to donate to kids who would "appreciate" their toys..Aidan's response-"ok--I hope they like them"!!!!!!Hang in there! Deirdre

Mama Mason-Mann said...

Lacey, I'm sorry you're having a hard time! You're in my thoughts as always and hopefully soon you will be feeling better. Love to you!

Cammie Heflin said...

Lacey I can relate with the boy thing! Jake destructs everything and does not seem to care. It makes me crazy. Both boys' rooms are disasters and get so upset when they have to clean them up. We take things away all of the time, sometimes it works, sometimes it doesn't. I'm sorry you are down right now, I wish I could do something to help! I will pray for you and wish for better things!

Kristin said...

I swear punishing the kiddos is usually harder on the parents! Sorry you're so bummed right now. I know Jax's health was the main reason you were hesitant about adopting thru RR in the first place. Hope all resolves itself soon :)

Evie's Story said...

Lacey
Im so sorry to hear you've been hurt!

Please know too that even tho folks dont comment every time, your story, your faith and your joy in HARD circumstances continues to encourage and challenge others!

mom26kids said...

Lacey, sorry you are having a hard time right now. I wish I could give more to your adoption. Things will work out. Hang in there. oh by the way we got our bows and love them Cianna wants to wear them every day can you get the butterfly ones in different colors? email me and let me know

Corinne Judy Smith said...

Lacey, you are having such a hard time right now, but you are so strong and can get through this. I'm sorry I couldn't come to your shower, but wow! it looks like a grand time you had.
I loved the dresser you bought. So pretty.
I'm glad you shared that your boys are just boys. Sometimes I feel like my boys are the naughtiest and I'm not sure what to do or who to turn to.
You are an awesome mom and I'm so amazed by you!

Jeana said...

I'm sorry someone hurt you. After the shower I was thinking how thankful I am that Heather told me about you and that I've been able to be friends. You are an awesome person and an awesome mom. I've never met anyone that has done so much for their kids, and Makayla is one lucky girl be part of your family. Thanks for everything.

Team Carter Jay said...

I'm so sorry that you're having a hard time right now. I'm sure it will get better very soon <3

Kelly said...

Sorry to hear that things aren't going very well right now. I think at different times in our lives, we are all tested, to remind us how strong we really are. And to remind us to slow down and refocus. Glad to see you found your "YOU" time. I'm sure your yard will look AMAZING shortly!! Just remember, when we feel like we've hit bottom, the only way is up!! Hang in there friend, things will fall into place soon. We are all still here!!

BTW, could you send me your home address via email as I have something for your little bundle of sweetness:)

ANewKindOfPerfect said...

Lacey, I am sorry that someone has hurt you! :(

I see the blogs all slowing down too, mine included. It's hard in the summer to keep up! We are always busy (even when I don't have a car for 2 weeks and can't go anywhere without help).

I hope that your fundraiser kicks in some good money. I have an idea that I will be emailing you in a bit. :)

Kristen's mom said...

I think everyone is just busy with summer. Sorry that someone hurt you. The sun will come out tomorrow!

Blessed with Boys said...

Hugs coming your way! I think we all go through times when we feel alone. I think it gets even harder when our children a ill and we count on people to be our support and then when they are not there we feel neglected! It's hard, trust me I know. Keep your head up!!!

The VW's said...

Sorry that life is so stressful for you right now! It seems like when it rains it pores!

I can relate to a lot of what you are talking about! Much of my support comes from on-line friends, just because they get what it's all about to have a special needs child and when you don't get many comments it is depressing, because some days it's what gets us through our day! But, at least you get some great responses....I do too, but usually only 5-10 comments and often times I get a few from someone who writes in chinese or something....like I can read that!

I'm so sorry that you have a blogging friend that has betrayed your trust and friendship! This must have hurt you badly! Just know that most of us are sincere and we value your friendship!

AND....as for boys and the way they treat things.....don't even get me started on that one! I seriously just had a conversation with our 7 year old about being destructive! We are on vacation and he just broke something in our hotel room....and we just got here an hour ago! Plus, we just came from visiting my dad and step-mom and our oldest said to them; "Our house is usually a mess and things are falling apart." I just looked at him and said; "HMMM....I wonder why this is?!!!" It's impossible to keep things clean and nice when you have boys running around, throwing balls and making a mess and breaking things all day long!!!

I feel your pain Lacey! But, they grow up so fast and when they are gone we will be so sad....so try to enjoy the mess and craziness while you have it! This is what I try to tell myself on those days that want to just scream!

Hang in there Momma! You will be getting a sweet girl very soon! Love and Hugs!!!

Shelly Turpin said...

I'm sorry Lacey. I wish we didn't have so many bills right now. I'd send some money for Makayla. I am living vicariously through you. We got so close and then didn't get to complete our adoption - so I watch and live through you.

oh Jax. I hate and love the heart cath. It's such a great test, but so hard on the Mama. They measure Bell's PH using ECHO. Can't they do that first?

Shari said...

I am sorry that somebody hurt you! :( No fun! I feel bad because I had high hopes of giving another item for giveaway and what not and it's not working out so I feel I let you down. :(

Dotty said...

big hugs to you hun! im so sorry. my boys are the same way, drives me nuts! sorry i havent sent many msg's lately, but im thinking of yall always.
lots of love

ParkerMama said...

I'm sorry things are so stressful right now.

You are always the first to be there for everyone, I'm sorry that you feel you now need to be wary.

Look how many people love you and Jax though! You two are amazing.

Tina said...

So so Sorry to hear that things are hard right now, and terribly upset to hear that you feel betrayed by a blogging friend. I know how important our blog friends are and how much we come to depend on them, they become part of our family, I for one cannot go a day without checking, even when I don't have time to write a comment I do try and read up, then there are days when I don't even get the time to read up on others posts and I really really feel like something is missing from my day. Hope you can clear things up with this person.

And about the boys, well I just have one and sonmetimes thats bad enough so I can imagine what chaos there must be with 3, so look forward to that wonderful girl naughtiness that you'll be having soon. I hope things with Jax aren't too bad and your trip to the Ukraine doesn't get postponed. I will keep you in my prayers and especially that Jax stays well. Love and hugs.

Angi said...

Sorry you are having a rough go of it!! People can be stupid and mean wherever you go...just got to get past that!!! And as for those crazy boys of yours...at least they are cute! (and PS....my 18 month old little girl is LOUDER, MESSIER, AND WAAAAAAY MORE OBNOXIOUS THEN MY BOY:-) It WILL all work out in time...patience my friend and in a few months you will be dealing with the craziness of one more little love:-)

mandd3 said...

I'm just getting caught up after being sick and wow have you been busy. I also get all my DS support online and would be quite hurt if one of the moms turned out to be something other than I thought, you all carry me through so much.
As for your boys, the men they will become in the future are being shaped by you and your husband right now, so keep up the good work. Sometimes you get to be their friend but mostly it is about being the big ole meany.
Pretty soon Makayla will be home and you'll be able to relax those shoulders and use your arms to hug your sweet new daughter.

Heather said...

Well my friend,not even gonna address the "issue"...you know my take on that one.

As for the blogging world,things are slow.Look at me.Life seems crazy for everyone and summer for some,is a time to step away from the computer and focus on other things.Seems to be a necessary recharge.Never about not caring,well usually not ever,if you know what I mean.

Everyone loves you guys so much.It will all work out.Promise.It is just that test of patience and waiting on God's timing.Don't you hate that?

As for Carter.Would you look at that face?Hard to be mad!But I can relate,oh you know I can!!!

April said...

Oh I am so sorry that you are hurting and worried. Hang in there- better days are on the way! xoxo

Tia said...

I'm so sorry. People can be so thoughtless.

ktzmum said...

Hi Lacey, I have never commented on your blog before - although I have been following for a few months now. I just feel like I know you and Jaxson and your family. I have four kids - one girl and three boys - ages 11 through 4. My youngest, Tommy, has Down Syndrome. I found your blog through Pudge's blog ( we know Jace's family from IL) and fell in love with Jax the first time I saw him! He looks so much like my Tommy. Even my 6 year old thought that I had started my own blog! He couldn't believe how much they looked alike! I have laughed and cried along with you on your blog. I check it almost every day - I say to myself, "Let's see how that sweet Jaxson is doing today!" Tommy had quite a few issues his first year too - but not nearly as much as Jax. Tommy was born in Feb of 2006 - so I believe they are close in age. I would love to be your friend - I do not have a blog - yet - but maybe when the kids go back to school I will have a little more time. I am also praying like crazy for you guys to hurry up and get your beautiful girl! I missed the last fundraisers - I live in Illinois - close to Chicago - so I cannot donate to the garage sale. But I would like to make a monetary donation for you. I will get my hubby's password for paypal and do it that way. I saw the video on the orphanages in Europe - I know they are not all that way - but I have nightmares about that one. I am not sure if you have time to read all of the comments that you probably get - but if you are reading this one, I just wanted to introduce myself to you - I feel like I know you. We are taking the kids to Disney World in October (Tommy's first trip)and I think of you now when we make our plans because I know how much you love it! Hope to chat soon! Deborah p.s. I am so sorry that someone has hurt you so bad - I don't know why someone would do that to you - I am so sorry.

Alison said...

Sorry things are tough right now. I hope the TV isn't too expensive to fix - I think I'm going to learn a lesson and always keep the Wii attached to an old TV!!

I hope you have success with your fundraiser - you know I'd come if I was closer!

ANewKindOfPerfect said...

Yes, Dr. Shields is at UCLA. Don't know if we'll get to actually see him or not, I heard he has a HUGE waiting list. We'll see! Evidently constant seizures are not urgent. Now we wait another 7-10 days for the Dr's to review her records before they schedule an appointment! What the hell!!

Alicia said...

Sorry things are tough right now. I love Summer but I hate that I don't have time for my own blog, let alone my blog buddies. It truly is the best support group! And sorry someone has betrayed your trust, that just sucks!

I hope things start looking up for you soon.

Holly Waligora said...

Hi Lacey, I have two boys and two girls and it's so true, the boys are little destroyers! Your comments about not respecting their "stuff" is exactly how I feel! Now I feel better that it's not just my kids! haha.
I looked over your blog, wow...you certainly have your hands full! Jaxon is a beautiful boy and I look forward to following and seeing how he progresses...and how wonderful you're adopting a girl, girls are so fun! Our older daughter is 2, we call her our little diva...my younger daughter Brooke is 6 months old and has DS also, she also had open heart surgery in May for a complete av canal...check out my blog if you'd like! www.waligorafam.blogspot.com
I look forward to reading more of your posts!

Michelle said...

I'm sorry for the betrayal of this 'friend' that always hurts :( You've got a lot going on all at once...sending you hugs and prayers.