Don't stare, look.

This was written the day after Thanksgiving, but wasn't posted until today.

Yesterday was Thanksgiving and Anna's birthday too. She turned a sassy three years old yesterday. Yep, she's getting a little sassy. It doesn't help that she doesn't talk yet, because it gives her more reason to whine and scream--which is getting to be a regular thing lately. (By the way, pictures will be coming in the next post--my computer is out of web space won't let me load any more until I clean it out.)

But staying on the positive, we met Dominic for the first time, and that was a treat. We have been talking about Dominic around here since Mark and Mary named him, when he was still in the womb, and they thought he wasn't going to live.


So far, Dominic has proved us wrong! He's five months old and thriving! I loved looking at his little hands and feet, and his sweet face.

Yes, his face has some deformities, and honestly, I was nervous about the kids seeing him for the first time. They are not good about things that are "different", although I really don't know why. It's not like we try to keep our kids in a cage or something. We do let them out once in a while. Sometimes I hear the kids talking about a kid from school, trying to describe them, saying, "He/She has yellow hair, a white face like ours...." A face like ours--like everyone is supposed to be white. I suppose that comes from living in a mostly white neighborhood.

And then there was the time when Max took off screaming at Sarah's benefit dinner, because she was bald from the chemo. She was "different"; she wasn't supposed to be bald. All women are "supposed' to have long hair. This is coming from the perspective of a child with autism; and I'm afraid that the younger children have adopted this philosophy as well, even though we have had countless talks about how everyone is different.

And so I had plenty of reason to be nervous about the kids seeing Dominic for the first time. I had prepared them as best I could with showing them pictures of Dominic, watching videos, showing them how he is a not just a typical baby, but very special in the eyes of God. I told them how when God gives a child a handicap, He also gives them a few extra gifts as well--gifts that most typical people don't have. I then told them, "So get all your questions out now--I don't want you guys asking Uncle Mark and Aunt Mary all sorts of things about Dominic's "bubble" because it might hurt their feelings." They didn't have any questions at the time. But they had a lot of sympathy for Dominic to which Lucy loudly lamented when she first met him, " Poor Dominic! How will he ever be able to pick his nose?!"

Ah, but they loved Dominic because they love babies! I had to constantly tell Luke to stay out of Dominic's bubble, which is the term his therapists use to let Luke know he's in someone's personal space. But every time I told him to stay out of Dominic's bubble, he'd say, "I'm not touching his bubble!"

Don't you just love how kids force us to see the disability, the deformities, while we politely try to ignore it? And yet, kids don't see it as a problem, they see it as different. Like God's personal bookmark--this child is special. This child is different.

And yet, I was painfully aware that feelings could be hurt; I could see the special love and protectiveness his family has surrounding him, from the words, from the stares. Unfortunately, no one can stop people from staring--Dominic is different. He has a facial deformity and he looks different. It's the reality, and people will stare--even if they shouldn't.

Today I went to the library with the kids and we passed by a teenage girl who was obviously "different". She could only shuffle, and her mother (assuming it was her mother) had to support her by the arms. We passed by, and me, not wanting to stare, looked away, but not before I caught the look on the mother's face. The expression that she had on her face was not hardened by years of hurt, but full of wisdom. Her face said, "Yes, my child is different. Yes, she has handicaps, and I know you are trying not to stare. It's okay though, because we love her and accept her as she is." She looked peaceful, and I was not quick enough to look away before she caught me staring at her, and she smiled. I smiled back.

As I was putting Henry to sleep today, my mind went back to the girl and her mother. I thought back to all the parents of handicapped children that we had seen in various places--the store, the pool, the beach, at church, and so on, and I began to see the faces of the parents who held the same expression as the lady I had passed by at the library--peaceful. I have passed by a multitude of parents of typical children at Target over the years and I can't remember seeing the same look of peace on their faces. It's like these  parents of disabled children have gained something that we don't have. Like they have been transformed, changed, softened. I had a picture in my mind of a rock that had been made smooth by many years of dripping rain--to me, this is a picture of a converted heart.

I was about to lay Henry down in his crib, now sleeping, when I remembered one more thing. I couldn't remember what this disabled girl looked like. I couldn't remember her, because I wasn't staring at her--I was staring at her mother. The girl had drawn my attention, but what compelled me to "stare" was the mother. Her expression on her face, so calm, so humbled, not angry, not bitter. I only remembered her and I remembered her smile.

In fact, all those parents of disabled children were the ones I ended up staring at--probably with the same question in my eyes that they have seen so many times before: "How do you do it? Isn't it hard? Doesn't it break your heart that your child will never be 'normal'"? And they answer me back, "It's a blessing, it's changed me, and I wouldn't change my child for all the 'normal' children in the world."

So all you parents with children with disabilities, deformities or whatever; next time a strangers stares, consider what they will end up really looking at--you. They are watching you the same as I was watching when I saw Mark kissing the top of Dominic's head over and over, how I watched Bernadette toting him with her everywhere she went, how my children couldn't get enough of Dominic, because they could see the child, not the bubble. What causes us to really stop and stare is not the abnormalties, it's the unconditional love and true acceptance of what is "different".

My Birthday Prayer

Dear Jesus, I thank You for my life; 

I thank You for all 38 years. I dread each coming year more and more, as I see new gray hairs and new wrinkles come with it. But when I look back over the 38 years, I see how many blessings you have given me, how many trials You have pulled me through, how many prayers You have heard and answered, how much joy You have granted me and how many crosses You've given me for holiness, and I am thankful. 

Thank You for my children, all five, noisy, smelly, crazy children, who sometimes pull out my already too thin hair (Henry), who teases endlessly (Luke), who sometimes is too sensitive (Lucy), who can be too rigid and bossy (Max), and who is going through the terrible three's. (No need to insert a name here, Lord.)
I thank You for their enthusiasm for life, who have reminded the reason to celebrate--another year to live and thrive, another year to grow and mature, another year to spend with them, and another year to try to make it for heaven. 

Thank You for my husband, who sometimes can be really insensitive, who says the worst things at the worst times, who jokes when he should be silent, who talks when he should be silent, and talks when he should be silent.  And more seriously Lord, I thank You for choosing me someone who is more humbler than me, who has taught me without preaching, to be grateful for what we have, and even for what we don't have. Who has reminded me to be humble, when I'm acting arrogant, to not speak behind people's backs and to be charitable, and has showed me that even though he struggles with his faith sometimes (as we all do, Lord,) that he gives his 100% effort in his prayers anyway. He's an example of perseverance. I thank You, that even though he originally said that he only wanted two children, Lord, that You gave him five instead. That was funny, Lord. He now says that even though the kids cost a lot of money and sometimes a lot of stress, and our house is too small for a big family, that he wouldn't trade in his kids for all the money in the world. Thanks for showing us that You knew better, Lord.

Thank You for my Mom and Dad. Thank You for giving me two parents who stayed together through the thick and thin; thank You for giving us memories of laughter and memories of the times of sorrow when You upheld us through it. Thank You for leaving my Mom on earth just a little bit (or a lot) longer; and I thank You for my Dad in heaven, who is not any farther away from us than he was on earth.

I thank You for my siblings, who are now my friends. I thank You for Jerry, Mary, Andy, and Mark, who drove me crazy, made me cry, made me laugh, played with me, shared with me and took away from me. I thank You for fighting with them, and standing up for them. I thank You for a big family. I thank You for their mates, who once were strangers are now family. We all fit together like an smelly shoe, Lord.

I thank You for my in-laws, who are quiet and kind, who are always giving something even when we don't need it. (We always end up using it, Lord.) I thank You for Jeff and for Gracie. I thank You for all the aunts and all of their friends and uncles. I thank You for their close-knit family, who are always sharing together. It's nice to see a family that has so much love.

I thank You for all my blessings, I thank You for giving us just what we need and not a smidgit more. I thank You for not always saying "yes" to what I wanted. Sometimes I find out later that what I thought I wanted, wasn't good for me, Lord. 

I thank You for my crosses. Sometimes I throw them on the ground and refuse to carry it. I thank You for waiting for me patiently while I cry, only to come back to You again.
I thank You for the times when I've fallen; I thank You for the grace to be humble and be contrite. I thank You for the sufferings You give me to make me holy. 

I thank You for my faith. I thank You for giving me parents that cared enough to make sure that I understood it. They drilled that catechism into my head every Sunday until it hurt, Lord. And truth is, I didn't always understand. But you filled in the gaps along the way, Lord.

And now I ask for my birthday present, that You give someone else who already has the gift of life, the gift of a birthday celebrated too. I pray that a baby be saved from an abortion, I pray that the baby who is already living inside their mother's womb, may be able to celebrate a birthday too.

For all the blessings, miracles, prayers, sufferings, crosses in my life, please let a baby celebrate a birthday.

Amen.

Apraxia

So yesterday we learned that Anna has a diagnosis of apraxia. This is exactly what Max had when he was her age. Other than the apraxia, though, nothing else seems to be wrong as far as developmental delays go.

So basically, she has all the words that she wants to say in her head--she isn't lacking in speech at all, like we had previously thought. There are times when she does get what she has to say out pretty clearly, but most of the time, it's unclear. But apraxia mixes the words up by the time she gets them to her mouth--it's an oral motor planning issue. According to her test scores, she has 3 letters of the alphabet that she says consistently and correctly, but all the other 24 is usually incorrect. So for instance, she can say "Mama" just fine, but for some reason, she isn't able to say "mouse" or "mine". She will also hear the "p" sound in the word "up", but will use it in the beginning of the word, as well the end, making it sound like "Pup".  Apraxia is full of inconsistencies.

She is in the 1% range, and the speech therapist says she would like her to be at least in the 16% percentile.

The good news is that usually kids outgrow apaxia, and that she's going to get continued speech therapy. They asked if we would be willing to let Anna go to "Taste of Preschool" once a week where she will be with other children her age and get speech services there. They're hoping that being around people that don't understand her like we do, will help her get out of the habits of communicating that she does, which is basically miming or doing her own sign language.

So it's a little frustrating to have a child with another speech impendment, but we keep in mind that it could be much worse and that it will eventually be outgrown. Anna's pretty smart for her age and the teachers have observed that she tries hard and makes a lot of efforts so we have all this in our favor!

Okay, off to shower now...

Picture Day

Today was Anna and Henry's picture day. We took them to the Target Portrait studio to get some long and over due pictures taken, before they grow out of their "baby days". With Anna's 3rd birthday just around the corner, I definitely wanted some pictures of her. Thankfully, she still has a baby face.

The picture taking went great! Well, it could have gone better, actually, but with a toddler and baby, you learn not to expect too much. We got some great pictures of Anna, but had a harder time getting Henry to smile. Like I said, he developed stranger anxiety recently, and he did not like being on the studio floor with me and Dennis away from him. (Even though we were just behind the photographer.) He didn't like the photographer, he didn't like the camera and he didn't like all the songs and funny faces we were making to get him to laugh, or at least smile. He did a lot of fussing and crying. The pictures we had when he wasn't crying, he looked scared. So we have some interesting pictures of Henry.

We were especially happy with Anna's "modeling"; she seemed to know when to smile and how much "smile" to give without giving the classic goofy grin kids make. But after a while, she was getting tired of being told what to do (lay on your tummy! Now stand up tall! Now jump in the air!) and started getting glassy-eyed, and pretty soon, we knew we lost Anna too. But, like I said, you can't put your expectations too high with little kids, and we did get some pretty cute pictures. I wish I could show you some previews, but since they are still copyrighted and not officially ours yet, I will give you a amateur picture taken at home, before we left.

You can't really see it too well in this picture, but I bought this lacey overall outfit for Anna. I bought it off of Zulilly, which I normally never do. But it was just a one-of-a-kind outfit that would look great in pictures or holidays, so I decided to buy it for her pictures. And then Luke went and chopped off all her hair, so that's where the big headband and flower come in.

Anyway, it turned out great, and we're going to do it all over again in January...this time, with all 5 kids. That should be an interesting post.

Barber Luke

Yes, I see red.

And we have a photo session scheduled next week for Anna and Henry.

 Big bow, perhaps? 

Happy All Saints Day!

I can't think of a better, more uplifting holiday than All Saints Day to have right after Halloween. I enjoyed trick or treating with the kids, but if it wasn't for the lightness of the kids, I would hate Halloween. Only because I know that there are a lot of people who use this holiday for satan worshiping. Yuck.

Anyway, onto brighter things...

Carving pumpkins this Halloween was a lot easier, as the kids did (mostly) gutting out the pumpkin part themselves. I bought some easy do-it-yourself kid carving kit, and Lucy did her own pumpkin and Anna's too. For her pumpkin, she just needed to pound plastic nails in to make a design, and then you pull the nails out.

I let Max use a knife for the first time. Yikes.
Luke wanted to use a knife too, but I didn't let him. He was disappointed.

Anna was a little angel during all this and colored. Get it? Little angel?? Ha,ha!

So for Halloween, Anna was an angel, Lucy was Spider Girl, Luke was "Thor", and Max was a swamp monster. He would get really irritated when people would say, "Oh, you must be a lizard!"

The shutter for the lens kept getting stuck, as you can see.

After a while, I would tell Max to just not look at me with his mask on. It was just too disturbing.

I am not a lizard. I'm a SWAMP MONSTER!

Before trick or treating, we went to Luke's friends Jame's house. (Wow, that was a mouthful!) Let me tell you, James's neighborhood knows how to hand out candy! We should've just stayed at their neighborhood instead. There was one group of about 20 people, both parents and trick or treaters that I almost ran over...

Then there were two guys drinking beer with a bon fire and had 3 tables put together with bowls of candy. They said to the kids, "Take some from each bowl!" And Luke, who has been told over and over to only take one piece, was in heaven.

We did end up going back to our neigborhood though. Had to see you the neighbors, you know. We don't get many trick or treaters around here--they must all be in Jame's neighborhood.

Happy All Saints Day!