Thursday, October 13, 2011





Celebrations



I realized that time is slipping away and Quinn is already 15 months old. Oh, my, I guess time really does fly as you get older. I am afraid I am going to blink for too long and my home is going to be missing the all the giggles, little feet running around, the stickers on the windows and floors and of course, the whining... but I don't think I will miss that.

I find myself trying to remember each of the children at every milestone that Quinn is accomplishing. It really is wonderful having a baby with 4 years between the next oldest. Aliza, Trevor and Ella are each 2 1/5 years apart, but in a lot of ways they met their milestones together. Aliza and Trevor began talking about the same time. Ella and Aliza potty trained together. For every milestone Quinn achieves, she has 5 people to celebrate and cheer her on. I know how special this makes her feel and it is such a joy to see the older kids celebrate her accomplishments, without jealousy or regret, but with pure excitement. Now that is not to say that no one else ever has a celebration for an accomplishment! My kids know how to celebrate! Ever since Aliza was a baby we have celebrated every accomplishment, big and small for everyone! But there is one celebration that we have not had, and that is celebrating Alizas ability to read. For Trevor, reading has come fairly easily. He has had some struggles, but he enjoys the independence of reading and is really reading well for a 7 year old, which we have celebrated. Ella heard someone say once that as children loose their top front teeth, usually in 1st grade, they are magically able to read. So Ella, a very bright and determined 4 year old has decided that she is going to learn to read. She told me she really wants to learn to read to her self at night in bed, instead of just looking at the pictures. That is a great goal, which we celebrated, but the next thing I know she is hitting her front teeth into the kitchen table, trying to knock her teeth out so that she will be able to read. Ella will probably be our earliest reader, she is already sounding out words and knows some sight words. I am so proud of her desire to read! And then we have Aliza. In first grade Aliza still did not consistently know her colors, or letters. It was not until 2nd grade that she was able to tell us stories about her day and complete sentences. In 3rd grade I began to realize that Aliza was very delayed in school. I started understanding how much more her peers knew than her. Not only is she 2 feet shorter than most of her classmates, but she is also not near their maturity level in many things. Going into this fourth grade year, I started wondering if Aliza has achieved the highest educational ability that she could? Never would I suggest that we give up, or not encourage her further, but maybe we needed to stop battling her every night with homework and just accept her delays and that reading may be one celebration that we would not have with Aliza. We have a very good relationship with school and her teachers know her very well. We feel like she has all the support that she could possibly need, finally for the first time in 5 years! We stressed at our last meeting with the school that our goal for Aliza is that she be able to read. We have always kept our expectations high for Aliza, feeling that if we settled for less than what her siblings had/do, then we would be selling her short. So while getting out homework on Tuesday evening, Tom comes across a small photocopied book. Alizas teacher wrote across the top: "Good reading" Tom asked Aliza, " Can you read this to me?" Up until this day, Aliza has struggled with reading. Simple sight words, THE, IT, SHE, HE have been very challenging for her. She will know them one day, but not the next time you ask her. So of course Tom thought that with each word she would need help sounding the letters out, and so on...But no, Aliza did not need one bit of help! She read all three paragraphs of the book, without help or stopping. Tom came and asked me to come listen to Aliza read. The entire family was sitting around the table as Aliza read to us. Trevor and Ella were so proud of their big sister. I was in tears. And she was all smiles! A few years ago Aliza told me that she wanted to get big so that she could drive a pink car to her BFF Allisons house for a sleepover. I told her that you need to be able to read to have a drivers license. So after reading the book, she asked if now she could drive to Allisons house. The following day Aliza came home from school and without hesitation sat down to do her homework. She pulled out a story from her folder and asked if she could read it to me. Sure, go ahead... She read the entire story about a Mother, her child, with the words bread, chicken, little, he, she, boy, girl, etc. I was still a bit suspicious as to whether she has also memorized this story. I wrote down various words from the story, one at a time, and she rattled them off like it was something that she does everyday and as if I was belittling her. So I went to the bookshelf and picked out an early reader book... "Here," I said, "read this". And sure enough, she read it. The next day she was home sick from school. We were in the kitchen, I was doing dishes and she said, "Mom, can I do my homework?" Seriously, I could not make this up, I would not believe myself...She pulled out her math packet and did the entire weeks worth of homework. Who is this child I wondered? While getting ready for school this morning, I was in the shower and Aliza comes into the bathroom, and sits on the closed toilet and starts reading a book out loud. There is a celebration like none other going on in my heart! Words do not express the emotions that I feel. Being a reader is such an important accomplishment in life. It opens the doors to independence and jobs, it eliminates the differences between peers, reading provides entertainment and all of this helps to encourage Alizas self esteem and self worth! I will never again doubt that Aliza can not accomplish anything that she sets her mind to! One of the most beautiful parts of parenting is the humility that children bring into our lives!


Monday, April 11, 2011

Flowers from "A Boy"



The other day after preschool, Ella played outside the school with a few of her classmates. It was a nice spring day. The cherry trees were in bloom and the dandelions were everywhere. One little boy named Brady picked a dandelion and hide it behind his back for a little bit while chasing Ella around the field. Finally, he decided it was the time to give her his prize. He handed her the flower. And my heart skipped a beat...I had just witnessed my little girl get her first flower from a boy!!! Okay so maybe it meant more to me than it did to either of them, but it was one of the sweetest gestures that I have seen in a long time. Ella was very calm and collected, she said thank you and brought the flower over to me to hold. And off to play they went. So as they continued playing Brady started pulling stems off the cherry trees and giving them to Ella. It was kind of a game, how many flowers could he get for her. She started telling him which ones to pick for her. Now picture this, Ella is very tall for 4. Brady is an average size boy, but not yet 4. Ella has him jumping and streching and reaching to the point of exhaustion to get the flowers for her (all of which are well within her reach!) As a mom of a young boy, I can say that Brady likely had no idea the joy he was bringing to Ella each time he gave her a flower stem. He could just as well have been giving her blades of grass. But for Ella, this was a big deal. Ella is a girly girl. She dreams of being a princess. At 4 she is already talking about her wedding. She asks if she can wear my wedding dress and loves all things frilly, poofy, glittery and posh. To Ella, Brady was giving her flowers and they were going to get "MAwRIED" (with a slight 4 year old speech impediment) Thankfully Ella did not express this sentiment until we were home. I think Bradys mom might not have understood, being that she is the mom of 2 young boys. Once home Ellas asked if I could take her picture with her flowers from Brady. (see above) Then she asked to put them in a vase, and she took them right up to her room so that she could see them all night long. (oh my goodness, can you imagine her as a teenager???) She brought them downstairs at dinnertime so that they could be our centerpiece for the table and then back up they went to her bedroom at bedtime. She talked about Brady and his flowers all weekend.

Tuesday, March 1, 2011

Nightime

Oh how I love holding Quinn! It is my favorite time, when the house has gone to sleep and she is ready to fall asleep. I put her up on my shoulder, her right hand gently strokes my hair, she nuzzels her face into my neck and our breathing becomes one. Her little body so cuddly and warm. I could stay up all night holding her. I remember how precious these moments were with each of the older children too.

And then, FLASH-BANG, snap back into the reality of a house with 4 children. A late night thunderstorm has rolled in, the girls are both screaming bloody murder, running as fast as their little legs with take them into our room. I agree, thunderstorms are frightening! We are all awake, except Trevor who is a champion sleeper. We lay in bed and watch for the flashes and then count until we hear the claps of thunder. As the lightening is becoming less bright, the thunder is not as loud and the girls begin to relax and drift off back to sleep. I am thankful that we had the foresight to buy a King sized bed when we got married, but even with a King there is very little room left for the adults.

Friday, February 25, 2011

Aliza's Heart

Often as parents of a child with a heart defect we find ourselves waiting for the shoe to drop. We are always wondering if Aliza's heart defect is the cause for this problem or that. When she was 3 weeks old she had her heart defect repaired, however the surgery left her with a valve that does not function properly and may one day need to be repaired. She is on a daily heart medication to lower her blood pressure so that her heart does not pump as forcefully so that the malfunctioning valve does not pump blood as forcefully back into her lungs, causing lung problems and eventually heart failure.

We have always known that one day we will be looking at another heart surgery and we pray that this is years away. As Aliza is getting older, she is almost 9, she is getting smaller...No, she is not shrinking, but she is not growing. She is losing weight, but she still looks very healthy and is very active. Her siblings sure are gaining on her. Aliza is 47 inches tall, and has been for over 1 year, Trevor is 50 inches tall and sprouting fast, and Ella is 46 inches tall (she is a tall 4 year old) So you can understand our concerns that maybe Aliza's heart is not able to keep up with her hence the lack of growth. So yesterday was our visit to our wonderful, amazing, kind, I cant say enough good things about him, Cardiologist Dr. Michael McCulloch at Nemours Cardiac Center. We have checked in with him every 6 months for the past few years. We discussed our concerns with him...He is a dad of two young kids and I really feel he gets it! He does not think we are crazy or paranoid parents, how could you be when you have a child with a HEART defect... We are not talking about a broken limb, we are talking about her heart. There are many things in life we can live without... Aliza can not live without her heart and I can not live without her. And this love I have for her may cause me to worry and make a bigger deal out of some things that may seem trivial to others. I owe a huge thank you to Dr. McCulloch for understanding our love for Aliza and validating our concerns while at the same time easing our fears. According to the "Great Doctor" Aliza looks great! While she has lost weight and not gained height, we have can rest assured that her little ticker is ticking away. We charted her on a Down syndrome growth chart and she is on the same curve she has always been. She has dropped within her curve, but not dramatically. As her peers are shooting up around her she this makes her petite stature so much more evident, but who cares about what is essentially a cosmetic concern. And now we breathe, at least until the next issue...

Wednesday, February 16, 2011

What a Day!



I have been a bit caught up in parenting to think about posting on the blog. Quinn is now almost 7 months old. I am truly cherishing every moment with her. She got her first tooth the other day. I cried! It was so bitter-sweet for me. This was my last "first tooth" moment. She is growing so quickly, I just want to slow life down a bit and keep her an infant forever. She is such a good baby. She laughs and giggles and really enjoys everything that her brother and sister do.

Today was a day that I want to remember, thus the reason I created this blog, so that we would have a journal of our family journey.

This morning, after Tom left for work, Trevor said that his front tooth was loose. I looked at it and told him that I did not think it was ready to come out just yet. He disagreed and insisted that his tooth was on its way out! I told him to take a bit of an apple, which he did without the desired result. I turned around to do something and then look back to him and he is biting on a fork. Are you kidding me, a fork Trevor, I said to him. No, do not bite on a fork. He says I need to get this tooth out. Okay, so bite the apple, which he does again, without a result. Next I see him in the family room punching his mouth with his fist. He is seriously punching himself in the face. This is a child determined to go to school with one less tooth. I told him to wiggle it from side to side. He starts wiggling, biting the apple, punching, wiggling, biting, punching when all of a sudden the tooth goes flying across the room. I am not sure which movement worked, but finally the tooth was out. We all move into the kitchen to celebrate and Aliza says to me, "Mommy, that makes me cry." I looked at her and she was very pale. I kinda giggled to myself because Aliza is a very intense person. When Aliza has a boo-boo it is a big deal. The world must stop and everyone must know that Aliza has a boo-boo, no matter how big or small. She shows her feelings without restraint. Her feelings and emotions are always very close to the surface, no matter what the situation. Aliza gets upset over very small things, for example she does not want anyone to touch anything if their hands are wet, she gets upset if I reach in to the shower to adjust the water because my clothes may get wet, she needs band aids for invisible boo-boos and sometimes cant walk, talk, move when she has a boo-boo. So I guess she was really internalizing Trevors lost tooth and it was making her uncomfortable. She was so uncomfortable that she fainted. I have had many firsts with my children, but I did not think that this would be one of them. Immediately after she told me "that makes me cry" I thought she was looking kind of pale, her eyes were a bit glazed and she was very still. Her gaze drifted toward the right, then I said "Aliza, its okay." She did not have any tears and did not say anything. I was standing at the sink making a glass of warm salt water for Trevor to gargle. I looked back over to her and she lost her balance and fell into the refrigerator and then went down to the floor. I caught her before she hit the floor, it was really in slow motion. She went limp in my arms. I started shaking her and telling her to get up. On one hand I thought it was a bit funny that she was so bothered by Trevors tooth and on the other I was praying that she was okay. It took her a few minutes to really "wake up". She was really out of it for a bit. I helped her to stand up and we both took a deep breath. She sat down, I gave her something to drink, and we began our day. I called Tom, and then her Pediatrician and emailed her Cardiologist. Everyone agreed that this was likely not a seizure, but a response to something that she perceived as gross and this was how her body was dealing with it. Little did she know that I had planned to keep her home from school this morning and take her to get blood drawn for her thyroid and hemoglobin. I started wondering how she was going to handle seeing her own blood.
While we were walking into the hospital to have her test done, she looked at me and said, "Mommy, I am going to be brave. I am not going to cry!" I said "Great Aliza! Do you want to go back by yourself?" thinking of course there was no way that she was going to be able to do this without a huge battle. She said, "Yes mommy, you stay here, I can do this, I am brave!" The technician called her name, she looked at me, stood up and went back with the technician. I said, "should I come with you", she said "no, sit down." Five minutes later, Aliza came back into the waiting room. I stood up and prepared myself for the battle of trying to get her back into the lab area. Then I noticed that she had a sticker in her hand. The technician looked at me and said "she did great!" I was stunned. Aliza said, "I was brave Mommy. I did it all by myself." As I am writing this there are tears streaming down my face. I can not believe that she did it. Of all the times I have had to hold her down, legs wrapped around her little body, someone else holding her arm and someone else holding her head, Aliza screaming and terrified, and I am equally tortured at her perception of to pain that I am a part of inflicting upon her. And today she did it all by herself. No one had to hold her down, she was a big kid. I am not sure which one of us was happier... What makes this day even better is that it started out with her fainting at the idea of her brother losing his tooth, and yet she was so brave and strong when it came time for her to give blood. Next week she is having a tooth extracted... Are we pushing the limits of Braveness???