Friday, August 20, 2010

Lead, Follow, or GET OUT OF THE WAY!!!!

Information is slowly but surely beginning to trickle in about how we are going to care for baby Jacob.  Seriously....only a trickle.  I sent out several e-mails and made a few phone calls last week and expected to get results.  All I've gotten so far is an e-mail letting us know that the Downs Syndrome support groups in our area are basically inactive and we'd have to drive the 30 minutes to Couer d' Alene to get any real 'support'; A phone number to the Gov't agency that would help us find the support services we needed, but a caution from the information giver not to call the agency until our baby is born because we'll just get lost in the shuffle, and a second number that resulted in leaving a message and being told she will be back in the office in 5 days. 

 I will not sit by and complain, I will do.  I will make something happen.

So, now I wait.  Again.  I told KC about the lack of support groups and we were thankful that we knew of at least one family who had a child with Downs Syndrome.  And I realized that if I'm going to want anything to happen, I'm going to have to MAKE it happen.  I can't expect the world to just magically have everything we need in order to make this new living arrangement work.  I'm going to have to put forth some effort, go WAY out of my comfort zone, and be willing to be a leader who wants to MAKE it happen.  I owe it to my child to fight for him and to either find or create the services and support we need to thrive as a family.  So, I guess it's time to dust of my "leader" hat and add to my to-do list:  "Find out what it takes to start up an ACTIVE Downs Syndrome support group in Spokane, WA" .

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Wednesday, August 18, 2010

3 Reasons Why Having a Child With Down Syndrome at This time is Good For Us

It has been interesting  to see the reaction of those I tell about Baby Jacob's heart defect and Downs Syndrome.  So many people act with such dismay, sadness, and a few with horror.  How sad, I think, that they should think of our child's birth defects as a punishment or some big travesty.  All I've been able to think about, after the first day, were all of the blessings I've had in relation to this one change in our lives.

Jacob at 38 weeks gestation.  Jake has Down syndrome and a heart defect
Jacob at 38 weeks 

1.  Doctors.  Wow.  Could you imagine our family facing all of these pending medical issues - heart surgery, specialists, etc. in Lewiston, ID??????? NO WAY!!! There are many things I loved about Lewiston, but their hospitals were one of my biggest fears.  I did not want any major 'events' occurring in Lewiston because I knew that their hospitals were horrible.  I am so extremely blessed to have found Dr. Zweisler (I went through every OBGYN in Lewiston) on the first try, he does his deliveries at Sacred Heart (a hospital that specializes in hearts), he has referred me to an amazing assortment of specialists, and I know that if anything happens, me and baby Jacob are in superb hands.  Wow...what a blessing.

2.  Timing.  Not only do I have two older children who are more like parents to Courtney (and soon Jacob) than siblings, but they are incredibly responsible, and have spent the last 11 years at the apt. complex designated for people with disabilities.  Jacob is not a disaster to them.  He's just a little brother who is going to have a few extra problems.  KC is in a stable job that pays well, and the timing was just PERFECT for me to be able to sell AC Bouquet.  Everything in my life seems to be falling into place just perfectly so that we can concentrate more on family and the trials and struggles, the joys and the blessings that lay before us.

One of three reasons why having a child with Down syndrome at this time is good for us
The three older siblings, waiting for Jacob to be born.  He's so happy to have them in his family!

3.  K.C.  It seems that now, more than ever, KC and I have more love for one another than any time in our relationship.  It's been a long time coming, but we're finally at that point in our relationship where we're rock solid.  They say that 80% of all couples who have a disabled child born to them end up divorced.  Looks like we'll be proving marriage statistics wrong AGAIN!  He's my rock and my best friend.  I don't think I could possibly want anyone else on this Earth by my side as we begin this journey. 

4.  And the list goes on.....don't be surprised if I add to this later :)

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Tuesday, August 17, 2010

Cuddlebugs and Other Horror Stories

Apparently, I am in my nesting phase.  In all my zeal to prepare for the baby, I decided that THIS WEEK was the week to completely revamp his room (insert eye-rolling from everyone in the household here). 

It's not enough that I want to re-paint the room from the nice generic yellows and greens that were used for Courtney into a nice calming smokey blue, creams, and whites. Nooooooo.  I decide that we need to replace the baseboard heater with a wall heater, replace the light with a ceiling fan, and, oh! while we're at it, let's just get rid of the popcorn ceiling too!  Of course, I'M the pregnant one.  So I get to dictate, but not actually do any of the work.  The poor souls who call themselves my family get the distinct opportunity to do my bidding.

So, yesterday, to my great delight, Elisha and Nathan set off to get rid of the popcorn on the baby's room ceiling.  Surprisingly (according to Elisha) it came off much easier than anticipated.  So, rather than being a several day project, they had that entire ceiling stripped by evening and even had time to go to the park for a couple hours after dinner!  Not-so-surprisingly, the entire process was a HUGE mess!  And, because it is still Courtney's room, they had all of her furniture to contend with during the process.

Finally, when it was time to put Courtney down for the night, we decide it was no use.  That room was not suitable for a 16-month child to sleep in.  The toddler was going to have to sleep with "mommy and daddy" tonight.  With great trepidation, I took my little toddler into my room for the night.  As soon as she discovered that she was NOT sleeping in her lonely crib for the night, but instead having a sleepover with her much-adored parents, Courtney began to giggle.  A HUGE grin spread over her face, she chose the biggest pillow right in the middle of our giant king size bed, and snuggled in for the night with her perma-grin on her face.  I began to think that this wouldn't be such a bad thing after all.  Courtney can stay on her side of the bed (the middle) and KC and I can sleep on our sides.  No need to even touch the whole night long, right?  WRONG.

2 1/2 hours later KC and I came to bed for the night only to discover that our sweet little angel had shifted and turned herself so that her tiny little body was stretched as far as it could possibly stretch in all directions from the very center of the bed.  KC gently maneuvered her back to her appropriate spot, we climbed into bed, and then....HELL began. 

Our jostling of the bed woke Courtney just enough to realize that her parents were in bed and she began to grin again.  Courtney began to twist and turn and squirm until she had her head touching my back and her feet in KC's side.  OK, that's not too terrible.  I can put up with that.  I rolled over onto my side and tried to make the best of an uncomfortable situation.  As soon as I moved, she decided that she wanted Mommy more and immediately snuggled her head into my back so that I couldn't move.  I was pinned between a little girl, trying not to crush her, and the very edge of the bed trying not to fall off.  And thus was the beginning of what was to be a VERRRRRRRY long night.  Every time I moved, she nestled closer.  Sometimes I'd wake up with a foot in my face...or her rump (her favorite position).  Occasionally I'd open my eyes only to see her tiny little cherubic face literally centimeters from mine, breatheing her hot breaths into my nose (for a pregnant lady, that's sheer torture!).  But the straw that broke the camels back came at 4:30 in the morning, after waking up for the umpteenth time only to discover that she, AGAIN, had her feet dug into my back, my arms, legs and very pregnant belly were hanging over the edge of the bed, and my entire body was tensed up trying not to fall out of bed. 

Enough is enough!  I drug myself out of bed, climbed onto the the living room couch and had the best 30 minutes sleep a person can have before having to wake up for another looooong day of preparing for baby.

This morning I woke up with a strong resolve to get Courtney's room cleaned, whatever the cost! Because I was NOT going to spend another sleepless night at the mercy of my little Cuddlebug!!

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Sunday, August 15, 2010

This Too Shall Pass....Wait, Maybe Not!

If you've ever been to my house in the last, say, 10 YEARS, you'd know that I really like my motivational quotes. At any given time you can see quotes taped up all over my house - in the bedroom, bathroom, next to my computer, the kitchen, next to the treadmill...anywhere that I spend any significant amount of time.

I use those quotes because I live an extremely chaotic life filled with running to and fro from task to task until I collapse into bed in an exhausted heap in the wee hours of the night...or morning. These quotes are used to make me stop, pause for a moment, and reflect on what I am actually trying to achieve in the midst of this chaos. Sometimes it is weight loss. Sometimes it is increased spirituality. Sometimes it is just to create a certain sense of inner peace. Occasionally, when someone I care about is having difficulty, or needing a bit of motivation, I will pass one of my favorite quotes or pictures onto them in hopes that it helps them in some way to get through the trial or the goal they have in their lives.

One of my favorites for those going through difficult times in their lives is a quote that says, "This too shall a kidney stone". It's my way of giving support, while inserting a bit of sadistic humor to the situation. So, as I began going through my list of motivational quotes and pictures in search of a 'motto' to help me get through my most difficult moments trying to come to grips with incorporating Downs Syndrome into our home, I rested upon my "This too shall pass" quote and realized that this label, as nice as it is, doesn't exactly fit for me any more.

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Yes, certain stages will pass, but the Downs Syndrome itself will never go away. Short of marriage, and the mere birth of a child, NOTHING in my life has been so permanent as the diagnosis of Downs Syndrome for our child. It's not going to go away. We can't cure it. We can't ignore it. Baby Jacob won't grow out of it.

I thought about that for quite some time. And I came to the conclusion that even with all of the new information I collect about Downs Syndrome each and every day - the risks, the problems, the horror stories, and the not-so-horror stories. I'm OK with that. I'm OK with this change in my life - as permanent as it may be. Whatever God and life decides to throw in our family's direction...BRING IT!!!!!!! Because nothing is going to detract from this beautiful new spirit we are about to bring into our family and ultimately the world. Baby Jacob will truly make the world a better place.

By merely being Jacob, he has already made me change my focus from candy bouquets to where it should have been all along - my children, my husband and my family. That one change, in and of itself, will make our family stronger, happier, and more at peace with those around us.

So, this WON'T pass. So what? I have a new picture and motivational quote on my wall next to my computer for all to see. It's a picture of a lighthouse in the water in the middle of a huge storm. Waves are crashing 4 stories up the lighthouse and crashing all around the building. And, if you look really really hard, you can see a lone man in the doorway of the lighthouse, near the railing calmly standing there watching the raging waters crashing all around him. Underneath that picture there is a quote that says,

 "Sometimes God calms the storm...Sometimes God Calms the man and lets the storm rage!"

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