Changes

Some changes I am ready for (like good-bye 95 degree weather and hello fall) and some not-so-much.

Jamie started first grade at his new school last week. Although he had a great summer, he was ready to meet new friends and get back to being in school, and I admit I was ready to get back into a routine and have somewhere, other than our house, for him to release all that energy, both physical and mental. Jamie is so enthusiastic in all he does, and he loves first grade. He is excited to wear a uniform, pack a lunch, and be at school all day. We are already hearing good reports from him and about him, and he beams from ear to ear every morning when we drop him off at school. Soccer practice has started again, and Jamie has moved up a division. He is thrilled with this as the higher division now plays with goalies (no goalies last year for the little kids!). He played two sessions of indoor soccer over the winter and discovered his love of goal tending. During their scrimmage at practice tonight, the coach said no one had to play goalie, but Jamie just naturally started tending the goal. Last year, the kids all seemed to just run around trying to all kick the ball at the same time. This year, you can see them starting to work together as a team and actually have some technique and strategy. It's amazing how much difference a year can make.

Clare starts school on Friday. This year brings big changes for Clare. She will be in the afternoon class, which makes me happy and a little wary at the same time. Happy for selfish reasons because I will have the two older children in school at the same time (last year, they had opposite schedules) and the two younger children still take afternoon naps. Wow - time for myself! Wary because Clare does not always do well in the afternoon. She has long given up napping, but the afternoon is usually a tough time for her. She expends her energy in the morning, so once lunchtime hits, she is ready to crash. It is usually a time when she vegs out with a video or we rest on the couch with books. I am not sure how she is going to do being in school in the afternoon. We do not have a choice, though, because that is when the 4-year olds have class. I am preparing myself that the first weeks will be rough for her, but hoping that she will become adjusted to the new routine. In the meantime, I plan on keeping our mornings low-key so as not to use up all her energy before school.

The bigger school changes for Clare are that her preschool program has changed. The school department decided not to continue renting the facility they used for the preschool program. Clare's class has been relocated to a different school. The principal of the preschool retired at the end of the school year as well. Instead of hiring a new principal, the school department decided not to have one principal solely for the preschool and, whichever school the class is in, they will fall under the authority of that principal. It makes sense when looking at budget cuts and that the preschool classes are now scattered through the school district. Yet I wonder if NOT having one principal to take charge of the developmental preschool will affect the quality of the preschool program.

We knew all this was happening for months, though. However, we learned of the biggest change in the last days of Clare's summer session - her beloved preschool teacher was leaving. Miss Pam relieved so many of our fears and anxieties about sending Clare off to school (and Shawn always chuckles that I call her Miss Pam - "you can call her Pam, you know, since you're an adult"). There is so much nervousness about sending any 3-year old to school, especially when I've had her with me all day, every day since she was born. But there is so much more vulnerability in sending off your special needs child. In about a week, Miss Pam erased the worries I had about Clare going to school. Clare loved school right away, and I know Miss Pam was a big part of that. We've been preparing Clare over the last couple of weeks that, like Jamie, she would also be going to a new school with a new teacher. She was a little anxious about who her new teacher was going to be and asked repeatedly. Last Friday, after still not receiving any information about when Clare's first day of school was (not a good sign of things to come!), I called the new school. I talked to a wonderful secretary who gave me all the information I needed plus informed me that Clare's new teacher would be Miss Karin. Miss Karin was the paraprofessional in Clare's classroom, but she has recently graduated and is now a full-fledged special education teacher. So she is taking over the class. I told Clare, and we were both grinning. This has given me hope that maybe things won't be so different. At least the school department has given the class over to someone who knows these children, and the children will have a teacher they already know and love. So we are excited for Miss Karin!

Simon is quite the little comedian these days. He loves to tell knock-knock jokes (which never make any sense), make silly faces, say and do anything to get a laugh out of us. His imagination is developing rapidly, and I am reminded again and again of when Jamie was that age. We hear elephants and dinosaurs all over the house, his trucks have conversations with each other (way too cute to hear the 2-year old's perspective of a fascinating conversation!), and he loves to play dress-up. It's an interesting dynamic in our house that if all three of the older children are together, there is usually much squabbling. But if only two are together, they play so well. In the mornings, Simon and Clare come up with all sorts of ideas of what they want to do. At first, I thought it would be too quiet with Jamie at school, but they seem to enjoy having that time to do what they want (Jamie being the oldest and the loudest usually comes up with the schedule of events). It also gives us the chance to play "little kid" toys, such as counting and ABC board games. Clare and Simon are developmentally at the same age in many areas, so they have fun playing the same kind of games. Once Jamie comes home from school, though, Simon is all over him. Simon and Jamie are great buds (for the most part!). They wrestle, play super heroes, drive cars all over the house. Simon is finally at an age where he and Jamie can "be boys" together. I am not always thrilled with the craziness that ensues, but they sure have a good time!

I meant to post on Violet's 6-month birthday, but something always comes up. Now she is over 7 months old, and I can't believe how fast the time is flying by. It always does. In some ways, I think she may be my last baby, but then when I see how big she is getting, I don't know how she could ever be my last baby. That I will never have that adorable bundle of pudge again. Violet is at that stage of babyhood that I love best. She is so interactive - big gummy grins, "ba ba ba," and excited arms and legs whenever one of her siblings plays with her. She loves to sit and play with anything she can get her hands on and has started rocking back and forth on all fours. I am pretty sure she is going to be my earliest crawler. (To put it in perspective, Jamie crawled at 9 months, Simon at 12 months, and Clare not at all!) Violet is such a sweetie and has the biggest, brightest blue eyes. (Jamie, Clare, and Simon all have varying shades of brown and/or hazel, so to see those startling blue eyes is still a shock to me!) She is a big-time mama's girl. I may complain, but I really don't mind (even with an aching back). I know it won't be forever.

We are wrapping up our late summer vacations and ready for fall. We have two more trips planned before we officially close the door on summer. Then it's head-on into soccer season, swim classes, speech therapy, homework, baking, soup making, all the things I associate with the start of fall and cooler weather. My favorite time of year!

Sincerely, Outraged Mother

Dear Steve "Shecky" Perlman,

I wanted to write you a letter to inform you that you did not ruin my day with my family. (Almost, but we rise above such events.) We journeyed to historic Philadelphia today to learn more about our country's birth and experience a piece of our nation's history. Unfortunately, we received you as our tour guide through Independence Hall.

For weeks, I researched exactly what we wanted to do to show our children about the United States of America in the city of Philadelphia. I knew immediately that I wanted us to tour Independence Hall - where such honored men as George Washington, Benjamin Franklin, and Thomas Jefferson walked its halls and made momentous decisions. The site of the signings of both the Declaration of Independence and the Constitution. The room where George Washington was appointed commander-in-chief of the Continental Army and where his "rising sun" chair still sits. Our family was excited to tour this historic building and arrived early to sign up for our timed tour. We waited patiently in line in the blazing sun and eagerly entered the building when our tour began. We settled our children in their seats (and, yes, with our nursing babies, a bathroom detour, and two strollers). Once your presentation began, however, everyone was quiet and ready to listen about the historic rooms we were about to view.

And then the fun ended. When you first shushed my two-year old and told me, "Keep it quiet over there," I admit I had my feathers ruffled by that comment. After all, Simon asking me "better, Mama?" because YOU had asked the audience of 50+ people "What was a BETTER sign that this is a painting of the signing of the Constitution?" was barely audible over the answers of the other people in the room. I personally did not think Simon was being disruptive. A 2-year old asking his mother a question in a crowded room? Come on, Shecky, imagine what he could have been doing - screaming at the top of his lungs that George Washington was a "bad boy", smearing Goldfish crumbs on the painting of the signing of the Constitution, running up and down the aisles and goosing the other tourists. But I wanted to be respectful, so I sat Simon on my lap next to Violet and asked him to be quiet.

Then you started telling jokes. When you asked the audience, "Where was George Washington during the signing of the Declaration of Independence?" and someone answered, "Fighting," I dutifully laughed at your quip - "What, fighting with Martha?" When you started to heckle a young man up front about "obviously not being married" because he looked confused by your humor, the rest of the audience started laughing and talking amongst themselves. Did you ask any of them to be quiet? Did you reprimand any of them for making a noise in the room? No, you did not. Instead, when Simon asked me what everyone was laughing about, you looked right at me and said, "You need to do something about him." The second time you told me to keep my child quiet, I could not keep MY mouth quiet. It was motherly-outrage that made me say back to you, "Could you please be patient? He is only two years old." But then you just glared at me. And refused to continue your presentation while I sat there and stared back at you. Part of me said to just sit there despite your obvious disapproval of me and my children, and part of me knew I had to get out of there before I said or did something I would regret.

So I walked out of your tour carrying my baby and holding my 2-year old's hand. And I was upset. Upset that you singled us out in a room full of people, simply because Simon was little. Upset that you forced us to leave the one place I had wanted to visit for weeks. Upset that Simon was now crying as well because he didn't understand how he had behaved "badly." (Which you did not, sweet Simon - you were so well-behaved in there. Better behaved than that rude man who was about 50 years older than you.) I vocally expressed my feelings outside to my family, took my time to cool off, then accepted the kind offer of another guide that my family, complete with children, could join his tour. I was proud of my husband when he confronted you. I don't believe a word you say when you told him that "five people thanked me" for what you did to us. And now I can laugh that you actually said to my husband that "your kid couldn't keep his mouth shut." Apparently he's not the only one.

Sincerely,
Outraged Mother

Overwhelmed

So you have all been so awesome in your responses (through comments, e-mails, FB messages, and phone calls) to my pity party. This is why I love keeping the blog. Part of me just needs to get some of this stuff off my chest and let it go, which writing it out does. And I admit I need the affirmation and support that keeps me trucking. So when I thanked God and Shawn for keeping me on this journey, I should have thanked all of you, too!

I wanted to share one response in particular from a fellow mom of a special needs child. All the responses touched my heart and made my burden a little lighter today, but this one really hit home. I am going to save it on my computer and re-read it on those days when I need it. (And to the writer - there is a book of essays I am reading called "A Cup of Comfort for Parents of Children with Special Needs" - you should submit something to an editor someday!)

"I just want you to know that I really believe that you are a better Mom to all of your children, because of the challenges with Clare. You are a better person and friend because of it too. In school, you will see the families with challenges like yours or mine, there is always someone better off than you, if you compare (which you should not do, but us Mom’s do quite a bit!!!) and someone struggling more than you. There will be a time you are jealous of other families because their disabled kid masters something quicker than Clare does. Then years later that family will struggle with something their disability serves up that humbles you immediately because at one time you thought their grass was greener, and you watched them today and counted your blessings! Being a Mom in your shoes changes your perspective completely, makes us more humble, more accepting of differences and more focused on what is important, more human. As your typical kids get older you will smile to yourself as typical parents of usually one or two children fret over stuff that seems so small to you. Not in a smug way. I mean in a freer, I am not burdened by that anymore type of way because I have given it to God. We watched our special needs children struggle to do what so many people take for granted, and been given the gift of appreciating the regular day, and we are constantly reminded that a regular day is a blessing."

Sadness

I completely lost my temper with Clare last night. In my defense, it had been a very long day, two of the kids were sick, Shawn has been gone all week, and, after all the kids had finally been put to bed, Clare did something that ranks about a 7 on my 1-to-10 naughtiness scale (with 10 being “blowing up the house”). However, she is also only 4 years old (and a delayed 4-year old at that) and I am… well, a few years older than that. Plus I am the parent and she is the child. I should be able to control my temper and not fly off the handle like that. I know I am only human, but it still makes me sad that it even happened.

These are the situations when I am muttering inside how much I hate the cards I have been dealt when it comes to Williams syndrome, the developmental delays, the heart defects, the Great Unknown labeled Clare’s Future. Sometimes I just don’t know how to parent Clare. I don’t know where to begin. I want to give up before I have even started. I even uttered the words to Clare tonight that if she did this again, it could hurt her and she could end up in the hospital. Her hospital stay is still so recent that this put her into more hysterical crying. And I admit I knew it would upset her, which is part of the reason why I said it. I am not proud of how I reacted, but I am honest about it. Whenever I feel as if I have been unreasonable in my handling of a situation involving Clare, I am filled with an overwhelming sense of guilt and sadness. Feelings so strong that I do not feel when dealing with Jamie or Simon. I think to myself, how could you treat her like this after all she has gone through? Hasn’t the poor child been through enough? What if this is the night she does not wake up in the morning? How would you feel then?

I know that some of these thoughts and feelings are irrational, but that does not make them go away. In fact, they remind me over and over to think twice, take a deep breath, count to ten, say a prayer, anything to help me handle a difficult situation with Clare. Clare faces enough challenges in her life without having this crazy mother to deal with as well. As I am sure all mothers do, I want Clare to know that I am always here for her. I don’t want her to be afraid of me (which I think she slightly was tonight). I don’t want us to be crying on the bathroom floor.

I did not put Clare back to bed on a bad note, though. (I try never to do that.) We cuddled on the floor, I apologized, she apologized, and she fell asleep at peace. I am not sure if I will, though. I think I will always be second-guessing whether or not I can handle this job. I know it is only through the grace of God and the support of my incredible husband that I have gotten as far as I have.

The Way We Are

I don't know if I will ever agree that my family of six is a "big" family, but the culture we live in certainly does. (I am blessed to be surrounded by friends of whom my family is one of the smaller ones, and our parish has many, many families of 6+ children.) It was not until I had four children that the words, "your hands are full," "you must be busy," and the incredulous "are they all yours?" became a daily occurrence in my life. Yes, truly, it is daily. I do not exaggerate. It then makes me chuckle when I hear this when I only have three of the kids with me (which is often lately since Clare has been in summer school and then Jamie had a week of Vacation Bible School).

I have never been a confrontational person (my mom can vouch for that). Growing up, I was always the peacemaker in my family. I still do not like confrontations, but I am quickly learning not to take anything from people who make comments. Especially those who make comments in front of my children. Never do I want my children to feel that there is something "wrong" with our family or that there is something bad about having a large family. I am currently working on my repertoire of short replies (suggestions welcome!). I do not want to be rude or set a negative example in front of my children, but at the same time, there has to be a rebuttal to the negativity that is implied when someone makes a comment.

I have also come to realize that our family operates under different "values" than other families. We live in such a consumer-focused, materialistic society. Sometimes I find myself falling into that trap, but remind myself again and again of what is important. Part is due to necessity (we cannot afford to buy everyone their own motorized Barbie jeep), but the majority is that I don't want my kids to grow up like that. To think they are entitled to everything they see. That if they want something, it's theirs.

After coming home from the hospital, Shawn and I discussed buying Clare a little car like the one she drove around almost nonstop during her stay. She is working hard on learning how to ride her tricycle, but she does not have the muscle strength to pedal for very long. And if there is even a little incline, forget it. This car, however, allowed Clare to zoom wherever she wanted to go, by using her foot power and without having the coordination a tricycle requires. We had decided that we really didn't have room in our budget to buy the car when my mother-in-law told us that they had that exact style of car sitting in their backyard from when my nieces were little. She offered that my father-in-law could clean it up and it would be Clare's. Even better - free! The car came to our house, and both Clare and Simon now fight over it daily. Even Jamie wants a turn sometimes. So we now share the car. And, yes, I have to referee many times over whose turn it is to drive the car. I have broken up numerous fights and, some days, the car sits on the porch because everyone has lost the privilege of driving the car.

One day, after witnessing such an argument, my neighbor said that they had the same car in their shed that her two children no longer played with (incidentally, her 3-year old son was one of the children fighting over who got to drive the car - the same 3-year old who supposedly had no interest in said car anymore - the same 3-year old who was ignoring his mother's order to get out of the car because he did not want to give Clare her turn). She offered to bring the car down to our house - by her reasoning, we would be doing her a favor by taking a big "unwanted" toy off her hands and she would be doing us a favor with VOILA - two cars and no more fights. I itched to point out that maybe she should bring the car out for her own children to play with and then they would stop taking my kids' turn, but I held my tongue. Instead I thanked her for the offer, but that one car was more than enough for my children. They were fine sharing the car. It obviously was going to take some work, but what kind of message does that send - you can't share something? That's okay, we'll just get another one! I wanted to ask my neighbor what lesson I would be teaching my children by providing another car? How was that going to help them in the "real world?" The neighbor looked at me like I had two heads - she had supplied the perfect solution to my "problem" and I was turning her down. But that's just not the way we work in our family.

I'm not perfect, and my parenting isn't perfect, but I like to think that I am raising my children to be better than what our society believes they can be. That the bottom line is not about always being happy, doing what feels best for us, and having whatever we want. That it's not breaking any child labor laws to have an older child help out with the care of a younger child. That when we cross the street, Jamie is responsible for holding Simon's hand, while I take Clare's and push Violet in the stroller. That we pitch in, help out, and, yes, even share - that's the way we are a family.

Follow-Up

Clare had her follow-up ultrasound scan with the Big Cahuna yesterday at Children's. The glue is holding and doing its job. Her blood flow through the radial artery looks great and completely normal, and she has plenty of flow down to her hand and fingers. The aneurysm is still there, but it's only been a couple weeks since Clare's procedure. She will come back to have another scan in a year to do another check of the aneurysm, unless it becomes a problem beforehand. The doctor does not feel it will be a problem and that it will eventually clear up on its own now that the fistula is repaired.

As for me, my CT scan showed that I have some structural abnormalities in my right kidney that is causing my pain and discomfort. I am going into the hospital tomorrow for a more invasive test, and if the test confirms the urologist's diagnosis, then I will need kidney surgery. I am trying not to freak out about surgery yet until I know for sure. I won't know the results of my test for another couple of weeks, so my biggest concern right now is that I have to stop breastfeeding Violet for 24-48 hours post-test. Lots of pumping and bottle-washing, here we come!