Day 17

Somebody is jealous of his new sister’s new clothes!  (I should be saving these for a wordless Wednesday, but maybe I’ll start that next month!)  At least he has good taste!

WE HAVE A DATE!!!

On Fri, I found out we have an appt to accept our referral for Dashlyn’s adoption!  This is what we’ve been working toward all these months!  So we need to be in Dashlyn’s home country on Nov. 1st!  I’ll make travel arrangements this week, plus gather all the other paperwork we need, plus pack, plus plan for the kids here at home, plus talk to M’s school about her going back with me, plus plus PLUS!!  I’m overwhelmed today but that’s okay.  It will all get done, and what doesn’t, oh well!

Day 15

I am soon to be the mother of 2 children with Down syndrome! 2!! This is so amazing to me. I really didn't think I was mom material at all, let alone mom to anyone who had a little something extra.

When we found out about Jack, it took a few days to sink in, but the thought of not having him wasn't a consideration. I remember when the dr called to give me the results of our amnio, he was very kind and gentle, but he did say we could discuss "options" if I wanted to. As he was saying those words, I could feel Jack moving and kicking inside of me. I almost laughed in the midst of my sadness, when I replied "no thanks" as I imagined Jack in there saying hey now, I'm here, and I'm real, and I'm really too busy for your options! So that began my journey into the world of parenting a child with special needs. I honestly didn't allow myself to wonder if I could do it. I knew Allan would be a super good daddy to ANY child so my job was to keep up! I tried to learn about Ds and access as many resources as I could for Jack. Keeping in mind that when he would be born he was going to be a BABY, was the most helpful thing of all. I already knew I loved babies and could deal with that. Falling instantly in love with his little face helped too!

Less than 2 years after Jack's birth, I learned of Reece's Rainbow, the ministry that helps to find families for children born with extra challenges in other countries. These children live in orphanages, and since I've discussed this before, we won't re-visit, but the thought of adopting fascinated me. I never considered it for our family. We have 4 kids already, we live in a tiny house, we don't have a lot of money. I thought the families that did adopt were so brave. I read their stories with interest, supported their efforts, and was amazed at their ability to step out in faith.

Last Christmas, I fell in love with a picture on Reece's Rainbow. A little girl, not yet 2, blonde and blue-eyed like my boys, drool on the front of her shirt like my Jackson, and an orphan in Eastern Europe without a family. A seed was planted. It grew all winter. By the end of January, I was asking Allan - "do you think we could...." and he reminded me of all the reasons we could not. By the end of Feb, the seed was growing within him as well, and we knew that sweet little girl belonged with us. It still doesn't seem real. We're only weeks away from holding her in our arms (17 days!) and I can't believe it. This is the way it felt to be this close to giving birth. The evidence is there; the preparations have been made; the reality has yet to hit. And I will be the mother to 5 beautiful children, 2 who have the kind of special needs that scare the bejeebers outta most people, and I am so blessed.

Day 14

Another interesting fact about Jack – he likes to dress up.  If it’s not his stuff – even better.  I found Ty’s Halloween costume and guess who wanted to wear it??

Can you guess what he is?  Yep, he’s a ninja!  The mask is great, right?!

Difficult post….

This is why we feel such a pull to go get our beautiful Dashlyn.  Do you see this lovely doll in the pic above?  She lived in an orphanage in EE.  She was waiting for a family to claim her.  Waiting for a mommy and daddy.

Her waiting is over.  Sweet Anne Marie has passed away.  I’ve been broken hearted all day.  There are not enough words.  Please read more about her here. 

Day 12

So here is a little essay that someone posted on one of the forums I enjoy. You've probably read it before as I have but it's totally worth reading again. :)

Who Mothers the Children with Disabilities?
By Erma Bombeck
This year, nearly 100,000 women will become mothers of children with disabilities. Did you ever wonder how mothers of children with disabilities are chosen?

Somehow I visualize God hovering over the earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs his angles to make notes in a giant ledger.

Finally, He passes a name to an angel and smiles, "Give her a child with a disability."

The angel is curious. "Why, this one, God? She's so happy." Exactly smiles God.

"Could I give a child with a disability to a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that."

"This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes...here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says "Momma" for the first time she will be present at the miracle and know it!"

When she describes a tree to her blind child, she will see it as few people ever see my creation."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of her life because she is doing my work as surely as she is here by my side."

...Erma Bombeck

I would very much love to be that woman. I'm still working at it. Good to know that God didn't expect me to be perfect! I'm good at not being perfect. Hard to believe I was blessed with our little man - I must have done something right.

Day 11

So today I'm thinking about sign language. Jack uses many signs, enough that I lost track of how many. We learned most of them from various Signing Time videos, either ones that we purchased, or rented from the library. Also there's several signing websites that I look at when we want to find a sign. I like this one because you can look up words pretty easily and a little video accompanies each sign.

One of our favorite things to do when Jack and Braska were a little younger was sit them side by side and have them sign words - so cute! You can see a little of that on Braska's blog.

Jack is starting to use more spoken words, but he still doesn't use words that are understandable all the time. Today he signed water to Andrew while holding his cup, and when Andrew asked "you want water?", Jack started to sign milk and corrected himself to sign water. He's really getting it! So for us, signing has been an excellent way to bridge the gap between no communication and spoken dialog. AND, it's been fun and so cute to see him sign words!

Day 10 - the birth!

So I was under the impression I had posted yesterday because I sent a post from my phone and it said my message had been sent. But here I am and there is no post. How annoying! Anyone have any ideas? So I'm skipping Day 9 for awhile until I find out where that post went.

Here is Jack's birth story for today. I actually wrote this a couple of years ago, but it's that month again so I'm re-posting! I skipped the shower story and may go back to it. But I think this is more interesting for now.

Okay, so we had the baby shower and I'm thinking I have about 4 weeks 'til our little guy makes an appearance. However, he was in a big hurry, and I ended up going to the hospital, Fri., morning on Oct.27th. About 3 weeks early. This was after I called another mom to take over the Halloween party in my daughter's class, after I called my mom to tell her to drive the 3 hrs here, after I was freaking out 'cause I wasn't ready, and after I called my MIL who wanted to come with us and was out of town. They tortured me for awhile, and then sent me home. I won't specify what sent me there in the first place because really, it's TMI. So my mom came in town anyway, my MIL came home and we sent her back, and M (who wanted to see Jack being born) missed her Halloween party. I called my friend Jenny and we all went to lunch. Now, I'm sure anyone who has given birth at least once will back me up and agree that when you're in labor, you're in labor. So while we're having lunch I'm thinking, "yep, there's something going on here" but I held out as long as possible so they couldn't send me home again (HA) and finally at 8pm I announced it was time to GO. We packed everyone up, dropped the boys at Jenny's, and drove off to the hosp. I got all hooked up to all that crap they hook you up to, and then things really started happening. My first 2 babies were born while I had an epidural and Ty wasn't (he was the 9lb 5oz-er!) so I had been planning no epidural with Jack too but the pains became pretty darn intense so we called for the epidural, but before the guy showed up, it was time to push. Actually, it was time to NOT push 'cause they weren't ready (again, HA) but Jack came out anyway! The Dr. was the one on call and she came in putting on her gloves, and only got the one on before she had to catch! We got a neat pic of Allan cutting the cord.

(M took it!) Then we got to hold him while they were looking for a room for me. My MIL finally showed up (she had gone back out of town) and we all congratulated ourselves on having a gorgeous baby. Yes, we saw (well, I saw) the Down Syndrome right away. The thick neck, squinty eyes, big space between the big toes and the rest of the toes - it was all there. But you know what? I didn't care. Not one bit. I wanted to hold that teeny little bundle of warm baby and stick my nose in that space between his jaw and neck and just nuzzle. It was great. We got to keep him quite awhile until they took him down to the nursery to finish cleaning him up and all that. That will be the next installment - the trauma of finding out your tiny, little, sweet, yummy new baby would need open heart surgery.

Next time - brand new baby pics!

Day 8

What's Jack doing now?

Jack can run and jump. His jumping is great. He can come straight off the floor and goes several inches into the air! He jumps off curbs and lands with both feet. He jumps off the couch too (which I'm not too crazy about). These are his strong points. He's starting to say words and use them appropriately. I don't know if you would recognize them if you heard him, but we do! He still eats well and uses a fork and spoon. It occurred to me the other day that we should be trying an open cup so that'll be fun. We spend lots of time with Braska and Kinlee. Hopefully he'll like his little sister as much as those 2!

He started school again. He goes 4 days per week, 9 to noon. 2 days are "big" class days and 2 are "small" class days, when only kids with IEPs go. On small class days there are only 2 kids in the room! How cool is that? Unfortunately, Miss B is not in his room this year :(. But since both classes are pretty small on small days sometimes they get to see each other anyway, on the playground or for activities. Last week Jack's classroom buddy was sick so Jack got to spend the whole day in B's classroom!

They do so many fun things at school! I need to make a list of all the things I've seen this year. (IEP post coming soon.) One day when I dropped Jack off they had this big tub of spagetti on the table. Some of it was cooked, some not. I had to take a pic since I thought that was such a neat idea! He loved it!

Day 7

Nicknames....

We named Jack after Captain Jack Sparrow in Pirates of the Caribbean. But since the other kids have names that can be shortened, he got one too. So he's Jack and Jackson. Also there are a lot of names that just happen. Bub, Munchkin, Goofball. I've been calling him Ubu a lot too. You know, as in "sit Ubu, sit". We also call him stuff depending on what he's wearing or doing. Milk boy, snot boy, hat head, all those kinda things. All of them are given in love. He's busy, he's funny, he can be a royal pain (like when he's digging the dirt out of my flower pots on the deck). But he is so loved! And no matter what we call him, we call ourselves lucky to have him!

Day 6 - How we found out

Since this is Ds awareness month, and the month of Jack's birthday, I thought it would be a good time to re-hash some of my favorite posts about finding out that Jack would have Ds and his birth story and stuff like that. The is the first I'll do. I thought about just linking it but decided to copy/paste it. Pics next time!

Sunday, March 16, 2008

I wanted to start this blog to write how we felt and what happened when we found our baby would have Down Syndrome. That seems like an overwhelming job now. Maybe I'll just do it in bits.

Installment #1 - How we found out

At about 12 weeks pregnant (right after we found out we were pregnant), I decided to do that nuchal fold test, where they measure the back of the baby's neck (via ultrasound). There's some magic number that is a marker for ds. With every pregnancy, I took pretty much all the tests because I like to be prepared. This sounded like an easy one, so I took it. They couldn't get our little one to be in the exact right position, so it didn't work. That was on a Fri. We tried again on Mon., still with no results. I don't really remember what made me decide to have the amnio; I just remember having the appointment and my friend Sherry telling me she would come with me because she didn't want me to go alone. This was really a big deal 'cause she lived a couple of hours away. We found out Jack was a boy while getting prepped, and the actual amnio really wasn't bad. That was on a Wed. On Fri., while I was home, my ob called. "I really hate to tell you this, but your test shows Down Syndrome." I know he said more stuff but I sure don't know what it was. I called my husband at work and told him to come home. He did, and we cried together. We had plans that week-end but cancelled everything. We didn't tell anyone for almost 2 months. I just needed that time to be okay. It was really hard. People kept calling to ask if we heard anything yet and I lied. I said "no news must be good news, ha ha" knowing the whole time I would have to tell them at some point. It's an emotional thing. I honestly wasn't worried that anyone would be mean or anything, I just needed to get to the point where I was emotionally okay telling people because I knew I would be the one reassuring others. I thought no way can I start talking to people about this if I'm breaking down every time. Even my closest friends and our parents. For some reason, I needed to be strong. My dr. was great. He said, at the first visit after we found out, that we wouldn't dwell on the ds unless I had questions or concerns. He wanted me to feel like this was a regular, fun, miraculous pregnancy, just like it was. We finally told our other kids. They decided at once no one would ever make fun of their baby brother and were protective right away. They made me cry in a good way. We then told my parents; I kind of chickened out and told them when I was literally on my way out the door to go 3 hrs. home from a visit with them. After a quick hug, I ran away quick so they could be upset and cry. Then I wrote a big long e-mail to all the friends and family I had an e-mail address for and even asked them to forward it to others. The response was really positive. Sounds anti-climactic, but that was it. I have one friend that I'm really close to and everyone was saying to her "wow, you sure kept that quiet" and she has to say "yeah, cause she didn't tell me" which I feel a little bad about but I just couldn't yet. The rest of the pregnancy was okay; I had gestational diabetes (special diet, blood checks, and even shots in my tummy!) and lots of ultrasounds and non-stress tests and an echocardiogram for Jack and everything came back great. Everyone acted very excited to see our new guy. We had the BEST baby shower. (That'll be another story!)

Day 5

First off - Happy Birthday Lori! I won't mention how long we've been celebrating b-days together - but man it's been a long time! Here we are when we were so cute - college sorority dance. Hope you had a super day!

Now onto the Ds awareness portion of our post -
I wanted to post some interesting little fact about Down syndrome. But I'm too lazy at his very moment to look something up. So the only thing that comes to mind is the way I spelled it - Down syndrome with a capital D and a small s. In the US, that is the preferred spelling. I believe in other countries it could be spelled with a capital S too, but we don't want to give our syndromes more credit than they deserve here, so small s it is. And there we have it. Maybe during the rst of the week I'll "borrow" a post from someone else, or actually look up a fact, or just send you to someone else's interesting blog!

Day 4

Someone posted on fb that their child ate a crayon. My first thought was "hey - my kid ate a crayon, and I need a blog post!". So even though I did post this pic before, you get to see it again because it cracks me up and, after all, this is my blog!

Day 3

At some point, I will do a post that lists 21 things about Jack. Why 21? Anyone that reads this blog I'm sure, already knows, but just in case it's because Down syndrome is also known as Trisomy 21. Most people have 2 copies of each of their 23chromasomes, and Jack has 3 copies of the 21st.

Until that big post - here's a little fact. I tell Jack every day, "I love your face", and usually it comes out when he's just done something that he thinks is clever and he gets this very delighted grin. It just makes me happy! It's hard to capture on film, but I'll see if I have a pic of that expression to share later!

Day 2

My older son plays footbal for his high school team. This is his senior year, so his last year. His dad and I, and Jack and M & Ty, have gone to pretty much every game. Last year he played down on the JV squad so we even doubled up on games. The point is, Jack has a fan club or a following so to speak, at the games. There are other parents who sit in the stands with us that say hi to him every week. Some of them don't even know our names and we don't know theirs but they know Jack. How cool is that?! It makes me wonder if maybe he's been an ambassador for Ds at the games. Maybe he's given a positive image of Ds to people who may not know anyone else with Ds. He gives high-fives and knuckle bumps; he smiles and laughs and cheers; he waves and says "Hi" and "Bye - see ya" when people walk by. Everyone has responded to him so positively. I'll miss it next year. Or maybe we'll still go, at least to home games. Jack will be 4 on his next birthday - he's gone to games since before he was one. Everyone has watched him grow into a little boy, and hopefully thinks of cuteness from now on when they think of Ds!

Day 1!

I thought I would start out Ds Awareness month with a pic of my cuties!  Capn Jack is sportin’ his very cool “Don’t Dis My Ability” shirt with I also thought was appropriate!  And Dashlyn, well, hopefully I’ll have new pics to post of her soon, after we get to travel.  Although I love pink, it will be so amazing to see her in a shirt other than that one :).