Wednesday, July 27, 2016

5 mos as a mom with a child with downsyndrome

Last month I was in the grocery store with G-man.  Just the 2 of us.  He was in his stroller, hooked up to his feeding and O2 tubes.  I just had to grab a couple of things.

We were in line in front of a lady with 4 kids.  They were all close in age and super well behaved.  She still looked disheveled.  I guess the totally "hands on" moms look worked.  This is no job for the prissy!!  ;)

She noticed G-man and asked me what was up. 

It floors me that I am now the mom of a child who gets "the looks" from strangers.  Floors me.  F.L.O.O.R.S  M.E.  I totally see what it's like now to be on this side of the fence.  And I can say, in all honestly, that I WANT people to ask me.  Because I KNOW they see him.  He has tubes.  He looks a bit different.  A bit gorgeously different, but different all the same.  I want to tell the world about him, not have him be some curiosity fodder.

So she asked me. 

And I told her. 



All about his heart I told her.  How he has a handful of things wrong but seeing doctors who will operate on him etc.  Come to find out her oldest son also had open heart surgery.  Come to find out, we share cardiologists!

And that's as far as the conversation went.  Just his heart.

Nothing about his having downs.

I couldn't.

Because I knew if told her he had downs, I'd start crying.  I knew that if she saw me crying, she'd think that I was sad that he had downs.  I knew that she'd think that maybe I felt I was cheated.  That life sucked to be a mom with a child with downs.  That I was stuck with a burden for the rest of my life or his. 

And quite frankly, I didn't have time to explain my tears.






I had time to explain my tears though to a teller at our bank.  I've gotten to be good friends with her actually.  I was at the bank a few days later and we got to talking.  She knew all about G-man and I knew all about her youngest brother who is now 52.  Both have that extra chromosome.  I told her about my experience at the grocery store.  And to her I explained my tears as they came pouring out, right at her desk.

"I couldn't tell her because I knew I'd cry.  And I knew she'd think I was sad.  But I'd have cried because having a child with downs is so special."

We both started crying actually.  She shared with me the intense bond her own mom had with her baby brother.  How they had such a special connection.  How when she passed away, he KNEW even before anyone told him.  How during her last days, only he could bring her out of her lucidness, how she would always ask for him and only him.

Having G-man as my son is the most special thing that has happened to me.  It's a constant spiritual experience.  It's an awareness that he did some pretty amazing things in the pre-life that granted him protection here on Earth.  When I hold G-man, every fiber of my being tells me that he's older than I am, that he's more advanced than I am.  I can already tell he's more patient.  I can already tell that he's more accepting and loving of others than I am.  I can already tell just as he took me by the hand in the pre-life and helped me do who knows what, he will continue to take me by the hand in this life and help me to do who knows what.

It's such a special privilege, blessing, to have him.  Which explains why it's so hard for me to tell people about him, about the REAL him, because it's so special.  It's almost sacred.


And this further explains my complete and absolute mental and emotional condition as we hit the 10 day countdown to his surgery.   Be it known, I'll be a complete mess.  I know how I'll handle it.  I'll go into survival mode more than ever before.  I won't visit friends, talk on the phone, nothing.  Cuz it's how I deal.  I'll escape to my quiet place in my mind as I try and distance myself from my reality.  The reality that I could possibly lose G-man and not have him with me.  I know this is a complete lack of faith.  It is.  It's also how I try and protect myself from what could be the greatest pain I'd ever feel. 

I'm too afraid of thinking of hoping for a future with him because a future with Gideon, a heart healthy Gideon, would be like having an angel accompany me here on Earth.  It would be just so awesome!

If you're reading this and if you've been given the news that you are pregnant with a baby with downs, please don't take this as bad news.  If you've been given the "opportunity" to choose between keeping the baby or aborting, believe me when I say, you are carrying a literal angel and you will know this the minute you hold your baby.

Shame on our health care system to address these pregnancies as "oh, I'm sorry, but ..."  Health care providers should hand golden tickets to moms carrying babies with Trisomy 21.  These moms should be applauded, should even be admired.  Because we get to raise angels.  And we get to experience a bond with these special babies that no other knows.  I have a close and special bond with all my kids.  But with Gideon, it's different.  It's beyond an "intense desire to protect."  It's more like, ... he completes me like no other.  We are each others.  I am his and he is mine.  It's like the most intense love story ever. 

He lets me soothe him like no other.  He cries and when I hold him, his calming down is practically immediate.  When I'm angry, all it takes is a few seconds with him, holding him, and my anger ebbs.  A tiny smile elicits a belly laugh from me.  Gideon and I have a connection.  It's a heavenly connection. 

Moms who have kids with downs will understand this connection.  Don't abort.  You will lose out on so much.

It's only been 5 months and I've learned this much about Gideon.  I pray and pray and pray that I get to keep him for so much longer. 

He's my buddy.

Saturday, July 9, 2016

1st miracle

We have 3 huge massive issues on our plate. 
#1 ~ Gideon.  He's not an issue per say, he's actually quite perfect.  It's his heart.  I've written plenty about that and will write more I'm sure.
#2 ~ Selling our house in VA.  This is a huge financial issue.  Because as long as we have it, every month we're paying mortgage on it along with our rent here.  We've had 2 contracts so far on our place.  And we've been totally screwed by the inspector these would be owners have hired.  I'm not going to go into detail here, but he truly has screwed us.
#3 ~ Have you ever tried to find a place to rent here?  If you have more than 2 kids, it's next to impossible.  If you have 9.  Well, all of a sudden a snowball's chance in hell looks pretty good.

This post is regarding point #3.

Not only did we hate where we lived, (well, hate is a strong word.  The house was great, but really, only if you had max 2 kids) but our landlord was ready to have us out.  We were probably there "against code" as the house really was too small for 11 people.  She let us know that she had already found tenants and we needed to be out by the end of June.

And we were in May.

And between Matt and me, we had literally turned over every stone, wood chip, leaf, and twig looking for a place to rent.

Nothing.  Literally, nothing.

Because who wants to rent to a family of 11.  And we were running out of time.

It was over the course of about 3 days that I kept having this "feeling" to post on FB that we needed a place to rent.  I seriously ignored it because we don't know a ton of people here, so not a bunch of people on my FB from here.  On around the 3rd day, I specifically remember walking down our tiny hallway towards the living room and that same feeling came, "post it on FB."  I headed straight for the computer and updated my status.

About 5 minutes later I got a private message from a friend of mine who I met thanks to sports.  See how great sports are?!  Sports never fail!!  ;)  Her son played football with mine and her daughter plays soccer with my daughter.

She messaged that they were buying a home and moving out of their rental and that the house would be perfect for our family. 

Long story short, we moved into our new rental June 18th!!!!! 

Besides the fact that the kids love it and the "lemming syndrome" has vanished, this house is proof that there is a God, His "thoughts are not my thoughts, nor His ways my ways."  His timing may not be my timing, but when it comes down to it, moving here is a testimony to me that His thoughts, ways and timing are WAY better than my own.

Come to find out, this home was basically the home that God had in mind for us all along.  When I wanted to find a larger place to stay a year ago, this house wasn't ready.  So we had to stay put.  And wait.  It was basically ready for us at the moment that we really needed it.

The location allows for the kids to access the bike path quickly and safely.  There's over an acre of land the kids can play on.  The house is far from roads.  It's in a very quite spot. 

Enter Gideon.

There's a separate living area downstairs that allows for guests.  ie Grandparents who need to stay for long periods of time to help because of Gideon.  The house is designed in such a way that if anyone is sick, it's quite easy to stay on opposite sides of the house to better protect Gideon from getting sick.  It's so important that Gideon not get overheated.  This house is one of the few in this town that has central air.

I don't think there were many homes in this town that could have been more perfect for Gideon than this one.

I find it so very interesting the Lord's hand in our rental stress.  He knew we'd have Gideon, so He had us wait.  Then He whispered into my ears for 3 days, telling me to put it on FB.  And my friend just so happened to be on FB to read my post.  Even though I was literally going out of my mind, even having emotional crying spells because of the stress of being in such a tiny house, Heavenly Father made me wait because He knew what we would REALLY need.

And it ended up being more perfect that I could have even imagined.  Heck, there's even a cherry tree here!  He knows that's one of my all time favorite things to eat!!  And it's not fattening!   Quite the contrary!  ;)

I think He's trying to teach me that it's OK to trust Him.  More specifically, to trust Him with Gideon.  That has been my biggest thing these past 5 months.  I need to be able to trust Him with my Gideon. With HIS Gideon.

I was thinking the other day, if our other 2 stressers, Gideon and the VA house, get taken care of as well as Heavenly Father took care of the rent situation, then everything will be better than OK.  Everything will be perfect.  More perfect than I can even imagine.

I need to trust Him better.  He's ever so patiently showing me that I can and should.