Please help Sofia!

This is REALLY important to me....

If you have even just $10 to spare, please read the following post from my friend, Jen.  I affectionately call her "blogger Jen" because she is the one who I was pointed to online (thanks Jen Ferrara) after I learned that Nate had Down syndrome.  Her words were like bandaids straight to my heart and she was there for me in a huge way, right away!

Now, she is trying to adopt a little girl with Down syndrome, bringing her out of terrible conditions in Eastern Europe.  It would mean so much to me if you would help Jen do this since she has helped our family immensely!

Here's her post:

http://savingsofia.blogspot.com/

-Danielle

Stuck

Nate is doing quite a bit of moving - backward!  

He hasn't quite figured out how to move forward, so it can get him into some precarious positions.

 

  

 Fortunately, Cody has become quite the helpful big brother and is able to pull him back out to safety!

It's been really wonderful lately to see Cody become protective and watchful of his little brother.  I'm looking forward to watching their relationship grow.

-Danielle

Thank You to My "Blogging Friends"

A few days ago I expressed my concern that the blogs that have been such an inspiration and support were now becoming a challenge for me.  That by reading other babies' accomplishments, I was questioning if I was doing enough for Nate.

Well, I have received quite a few responses on this and feel very encouraged.  Thank you to all of my blogging friends out there - it's amazing to me that I have not met most of you, but feel this deep sense of connection and support through your words.

I am blessed to know you and thank you - I look forward to many years on this journey together.

-Danielle

Comparisons

Today I read an entry from a blog I read regularly.  This mom's 8 month old hit a huge milestone and is now sitting on his own.  Sure, I'm happy for them.  But this threw me into a tailspin of comparisons and concern.  Nate is almost 13 months and still doesn't seem anywhere near being able to sit on his own.  Our PT (who I think is amazing and doing a great job) keeps assuring me it's because he is such a squirmy guy.  He really has no interest in staying in one spot.  He's a roller and he's doing some rocking on hands and knees, but he really has to be entertained to sit up (while being supported) for any length of time.  He just shoots his hips forward and slides right out of sitting position.

So, this is tough for me.  The source of the most help and kinship comes from the blogs of other parents who have children with DS.  But now that Nate seems to be falling behind even the DS curve, I don't know where to go.  

Am I doing something wrong?  Not doing enough?  Or am I just being impatient and this other child sitting up at 8 months is way ahead of schedule?

I don't know, but I'm really in a bummer of a mood now.

-Danielle

This time last year: #3

IS ANYONE READING THESE?

Since Nate just turned one, I want to take some time this month to share some of the emails I sent this time last year.  I didn't start blogging until March, so these are writings that haven't been on the blog. 

2/5/09 An email I sent to friends about 5 weeks after Nate's birth.

Hi friends,
I've really been wanting to write to give you an update. It seems I barely have a free moment in my day and when I do have time I just want to read or chill. I know you are all praying for us and can feel it!

First of all, a bit of an announcement. We have changed Braylon's name. His name is now Nathan Graham Paskins. This was a tough decision for us, but there are 2 very good reasons. First, if he has challenges with speech, he may not be able to pronounce Braylon clearly and since many have not heard the name, they may end up coming up with something else. You can imagine the frustration this could cause. The second, and just as important, reason is that we feel we need a name with meaning. Nathan means, "Gift from God". We want our son to know that is how we view him and we also need to be reminded in the challenging times ahead that he is our Gift. Already, with just a day of calling him Nathan, I have a deeper sense of connection with him.

It's hard to believe 5 weeks have passed since our lives changed dramatically. We are doing pretty well, but also recognize this is a lifelong journey we are on. Feelings will ebb and flow. I think we are through the shock and now just feel like we're going through the normal adjustment of having 2 kids. Nathan is very easy still - he sleeps, eats and poops and is extremely cuddly. I am only getting up once in the night, so I'm very thankful for that. I am still pumping and bottle feeding and may just need to keep that up (I've mastered the skill of pumping and doing just about anything - even driving).

Cody is presenting more of a problem right now. He is very 2 and a half! He knows how to push all of my buttons and is showing a lot of aggression. He growls and hits just about anyone. I'm hoping he is just working through the adjustment of having a brother and will return to the sweet boy I knew before he turned 2. His mood can go from great to terrible so quickly and I'm losing my temper with him a lot. I'm trying to get back to reading "Love and Logic", but have mostly been reading DS books lately.

Our support system continues to be amazing. Thank you for all of your devotions/words of inspiration you've been sending me. It really helps me to know I'll have those to look forward to each day. Please know that even though I don't respond directly, I am reading and appreciating them. Our family and other friends have also been great. Mom has jumped in and is really helping. Bob's mom visited a couple of weeks ago and my Dad was here today. We are receiving meals 2x/wk and people here (many from Baby Boot Camp) are trying to do that for many months to come. We have begun to connect with the Downs community and have met up with the family from our church who has a 3 yr old with DS - we really like them and are glad to have them around. Unfortunately, they are moving to a different county to get better services for their son.

That brings me to another subject. We have begun to learn that the services available for Nathan are not nearly what we'd thought. For example, when my cousin (who has DS and is now 12) was a baby, they sent therapists to her house 2x/wk. Now we will get 1 or 2x/mo. So, we are going to need to get a lot of private help. Our insurance will cover some, but not all, so it will definitely be a financial challenge to provide him the help he needs. For example, our insurance will cover 10 speech therapy visits/yr, but we will need many more than that. Also, they don't cover speech therapy for developement of oral motor skills, which is something we will need. We know God will provide the resources we need when we need them and are trying not to get too far ahead of ourselves.

I have found many great resources, but probably the most helpful at this point has been reading the blog a friend sent me.  If you have time to take a look, it's http://trisacharm.blogspot.com/
If you don't have time to read much, it would be great if you could at least read this: http://trisacharm.blogspot.com/2008/05/welcome-to-holland.html

Thanks again for all of your prayers and encouragment.  I hope that we will all grow and learn as Nathan does.

Love and hugs,
Danielle

This time last year: #2

 Since Nate just turned one, I want to take some time this month to share some of the emails I sent this time last year.  I didn't start blogging until March, so these are writings that haven't been on the blog.  NOTE:  Just a reminder that Nate's original name was Braylon.  We decided to change it after a month or so.

1/7/09 An email I sent to friends the day we got confirmation of Nate's diagnosis.

Dear friends,
I write this with tears and great sorrow to report that our dear baby Braylon has been confirmed with Down syndrome.  I am overwhelmed with emotion.  Bob, Braylon and I are home now while Cody is with my mom for the day/night.  Our pastor is coming over in an hour to pray with us.

Our next step is to get an ultrasound of Bray's heart as 50% of Down syndrome babies have heart issues.  Our Dr doesn't think that is the case with him, but we need to check anyway.  I will also be calling the local support service that will come over and assess Braylon and set up a program for him.

I have never been faced with something so powerful - something that will be part of our lives forever - it's very overwhelming and I'm working on taking things one hour/one day at a time.  I know God has great things in store for us - that he will strengthen us to handle this challenge.  It's baffling to me now to think that just last week I was concerned about just being able to take care of two healthy boys - I can only do this with God's strength!

Thank you for all of your prayers and support.  

Humbly,
Danielle

This time last year: #1

Since Nate just turned one, I want to take some time this month to share some of the emails I sent this time last year.  I didn't start blogging until March, so these are writings that haven't been on the blog.  NOTE:  Just a reminder that Nate's original name was Braylon.  We decided to change it after a month or so.

1/5/09 Part of an email I sent to friends 4 days after Nate's birth

I'd like to start by sharing some of the birthing story with you as I see God's hand in it so deeply and know that he orchestrated a natural birth for me for a reason.  After having contractions for 2 days, when I got to the hospital on Thursday morning, I was already at 7cm.  After they checked me, they let me go get in the jacuzzi.  I spent 2.5 hrs laboring in there.  I felt very comfortable and relaxed and would actually just sit back and chill and talk between each contraction.  After about 2 hrs, we decided it was time for Bob to take a break and my mom took his place in helping me.  Bob went to get something to eat downstairs, but then my water broke.   I immediately felt I needed to push, so they rushed me down the hall by wheelchair and got me back to the room.  Mom called Bob and he got back to me as fast as he could.  At this point I started to panic, but then the Dr (who God appointed to be on call that day and was not my Dr) got close to my ear, squeezed my hand and said, "Danielle, you can do this.  You can do all things through Christ who strengthens you".  Wow, what a blessing.  I pushed for about 40 minutes.  Braylon was placed directly on me and moments after holding him, I looked up and asked anyone listening, "Does he look like he has Down syndrome?".  I looked at my moms face and knew she was thinking the same thing.  They called the Pediatrician to take a look at him.  While many things are in his favor (strong heart, strong lungs, able to cry and nurse), there are also several things that caused us to wonder (squinty/slanted eyes, low muscle tone, extra skin at the back of his neck).  The Dr would not deny or confirm our concern, but said he could see what we were seeing and suggested we get a blood test done to figure it out (we never did the screening during pregnancy because we knew we wouldn't do anything about it and it could cause a stressful pregnancy - all 3 of my ultrasounds I had never showed any concern). 

At this point, the wind was completely taken out of our sails.  I couldn’t believe I could have just gone through this amazing life-changing experience of natural labor and now may be raising a child with special needs.  But I know now that God made that experience part of the journey to remind me in a strong way that I am a strong, capable woman.  I have grown way too reliant on others over the past few years and know I need to rely on God’s strength now and allow him to work through and in me.

Wordless Wednesday - just giggles!

What a difference a year makes!

Happy 2010!

It's not only the start to a new year, but today Nate turned one.  It is so hard to believe.  On one hand, it feels like SO long ago that we first held him, and on the other, it feels like the year flew by.

At this time last year, we were only 9 hours into parenting Nate.  We were in shock and very, very sad.  His diagnosis would not be confirmed until a week later, but in our hearts, we knew Nate had Down syndrome.  We cried so much that week.  There were many times I cried so hard I could not even stand.  I was afraid to be alone - overwhelmed by the thoughts and unknowns running through my mind.  It was the hardest time in my life.  I suddenly felt like the pregnancy I'd just experienced had all been a lie.  Like I had an expectation and a vision that was so completely different from the reality of what would be.

Reading reflections on other blogs, I often read that people wish they hadn't wasted time being sad at the beginning.  That now that they were several years down the road they realize that their sadness was not neccesary.  So, today I asked myself if I wish I hadn't had the reaction I had.  If I wish I hadn't been so sad.  If I wish I hadn't spent hours on my knees begging God to take Nate back.  If I wish I'd recognized him as a gift from the start.  My answer: NO!  If I hadn't had the reaction I had a year ago, I wouldn't be able to realize how far I'd come today.  I wouldn't be able to relate to the fear and sadness so many have when they get the results of pre- or postnatal testing. 

Over this last year I have grown a lot. 

I've come to understand that this life I'm living is not all about me.  This life I'm living has purpose.  This life I'm living is capable of changing other lives.  This life I'm living may look different from "the norm", but I'm guessing it may end up being a lot fuller because of it. 

In those early weeks after Nate was born, I wanted to hide him.  I was embarrassed by him, felt like there was something wrong with our reproductive capabilities, didn't want anyone to ask questions or make comments.  I'd go to the store and make sure he was fully hidden in his little carseat. 

Now, I show him proudly!  His smile and innocence melts the hearts of just about anyone who comes in contact with him.  I honestly, truly, deeply believes he is a gift.  And gifts are meant to be shared.

In the coming weeks I hope to share some of the thoughts I had at this time last year (especially since I didn't start blogging until March).  This may be especially helpful for those who are new on this journey, but I also hope it will show you how far I (and we) have come.  God is so good.

Thanks again for all of your support and love.  We are grateful beyond measure.
-Danielle