Thursday, February 26, 2009

The Love of Strangers

On Sunday, my niece, Lola, was blessed. It was so fun for all our family to be together, and she is a gorgeous little girl that I am excited to get to know. But my eyes kept drifting to the family a few rows ahead of ours in the chapel with a young child with Downs Syndrome.

My cousin recently found out that the little girl she is carrying has Downs Syndrome. My thoughts keep turning to her and her family over and over in a way I don't think they ever would have before my Connor was diagnosed with his disorder. There is something that bonds us all together--all of us moms who have to deal with the pain of watching our children struggle with more than it seems they should have to bear, and with the painful knowledge of the struggles they will face in their future.

In two weeks it will be one year since we received Connor's diagnosis. In that one year, I can't say my day-to-day life has really changed that much. C still gets his same OT and PT as he was then, and he is just as happy as always. But I know I have changed.

When he was first diagnosed, I cried every day. I couldn't sleep with all the thoughts and worries and anxiety. Some days I wanted to hold him so tight, and some days it was hard to just see him and be reminded over and over of this new knowledge of his SMA. Little thoughts would pop into my head for a millisecond, that maybe I didn't get enough of some vitamin, or maybe something hit my belly really hard while I was pregnant...but then I would remind myself that this was genetic, and there was nothing I could have done. I cried after every new doctor's visit and physical therapy appointment, because it was so hard to go through the story of how we found out over and over again and rehash those initial feelings only to end the appointment being told all the things my son couldn't or wouldn't do in their particular area of expertise.

At this, one of the most difficult times of my life, one of the very greatest blessings I had came from perfect strangers. I started to meet moms and dads from all over the country whose children also had SMA. From the very first phone call or email, each and every one was willing to pour our their hearts to us with love and reassurance that they too felt just what I was feeling, and yes it does get a little better, and these are the things you might face, but these are some great resources that can help you. One mom gave me names of several families in our region of the country, and now we've met many of them. Another mom had just gotten her son's diagnosis a month before we did, and emailed with me during the hardest part, just as a different mom had done/was doing for her. I think Connor has six different blankets, most from people I have never personally met, sent to us to show their love and support when they heard about him.

And now, I still cry (like right now) about the diagnosis, and when C tells me he wants to stand up or gets frustrated when his body just won't move like it should. But I know now that if I did the last year, I can do this too. I know we have so many family and friends who love us and support us. And I know I have a huge network of people out there I have never met who know exactly what I'm going through and will do anything to help me.

So that is what I wish for my cousin...that she will know there are so many of us out here who love and support her, and that she will find those strangers but soon-to-be friends who know just what she is going through to help her along the way.

Wednesday, February 18, 2009

The Valentine Bandit Strikes Again

Growing up it was our family tradition that each Valentine's Day the Valentine Bandit would leave presents on our doorstep. Sometime during the day, we would hear a knock at the door and the doorbell would be run repeatedly. My sister and I would race to the front door, fling it open, leap over the gifts, and rush out into the yard in an attempt to capture the ever-elusive Bandit.

When I went to college, the Valentine Bandit found his way to whatever apartment I was living in, but this time he just sent a lovely bouquet of flowers. And now that I am married and have my own little family, a new Bandit has joined their ranks and once again visited our house this past V-day and brought some gifts for Connor.

This past year C had his birthday, and then came September (when most of the rest of the DeLucas were born), and then soon shortly after was Christmas. So he has gotten pretty used to the idea that every month or so he gets some presents. When we explained what the Valentine Bandit was, he started to ask every day if it was Valentine's Day. And when the doorbell finally rang, I wish I had taken a picture of the look of pure excitement that was on his face. This is what he found.


Then we went for a little visit to my parents house...and wouldn't you know a Valentine Bandit showed up there, too. Can you tell that C likes "Lie-Queen" (aka Lightning McQueen)?

And now, he asks every day when the Easter Bunny is coming.

Thursday, February 12, 2009

Imagination at Work

This morning, I was in the kitchen reading a magazine, when I started to hear C's little voice say, "These are my new eyes. These are my NEW eyes." I figured I'd better go check on him before he did some sort of permanent eye damage. When I walked in the living room, this is what I saw.
That kid can make anything out of mega blocks.

C is also discovering ways of communicating that aren't just the words in the dictionary. At lunch a few minutes later, (after coating his face with pudding) he began his new favorite past time, which I like to call the Shhh-Ahhhhhhhh Cycle.
(Press pause on the music player at the bottom of the blog to hear it best.)

video

He even figured out that you need the finger in front of your mouth to make the "Shh" correct. I bet you have no idea just how long a two year-old can keep this up. In public places. Quiet public places. Ah the joys of motherhood.

Tuesday, February 3, 2009

We're Adopting

If you read my blog way back in early last year, you know that we want to have more children, but were unsure about what to do with so many options. If none of this had happened with Connor, we would already have had our second child...but genetics complicated things a little.

Now, after much thought and prayer, we have decided to adopt. We are pretty excited about the decision. The minus would of course be the worries about the finality of a birth mother/father's decision to terminate their parental rights. While we are aware of that, we feel that this is the path the Lord wants us to take and that all things will work out as they should.

And...there are sooo many pluses. Adam's family has quite a few connections to adoption, including a sister who is an adoption worker, so we feel comfortable with the idea and have some knowledge beforehand of how things work. We will get to provide a happy and loving home to a child and grow our family, and Connor will get a sibling. He is pretty excited about it and has already told us a brother or sister is coming to "stay at our house."

So, now all the craziness begins. We have a zillion forms to fill out and send off, and I think some of you we've talked to might be getting some forms too. And we have interviews, and home visits, and maybe in a little over a year, a new addition to our family!