Bittersweet Moments

Most of the time I have a fairly positive attitude towards Alex and his Cerebral Palsy, but every once in a while my emotions get the best of me and I have a moment where I have to cry to let all the bad thoughts and feelings out.

Over the weekend we got together with some friends who have a 3 year old and an 18 month old like Alex and Evan. It’s the first time we have gotten together with them since Evan started walking, and to my surprise he wasn’t shy about warming up to them and fitting right in. He was running around with them playing and screaming and having fun. I was really excited for him but at the same time my heart was breaking inside for Alex as he sat on my lap. That’s when it hit me like a ton of bricks. The reality of Alex’s Cerebral Palsy; the reality that he can’t sit independently, can’t crawl, can’t walk or chase his brother and friends around. It wasn’t like the kids ran around all night long, it only lasted a few minutes but I was so overcome by emotion in that moment that I couldn’t help but feel sad for him. I guess I am accustomed to my everyday life at home where Evan runs around to make Alex laugh, plays really well on his own and occasionally hugs and kisses his brother. Alex lies on the floor to play or sits up with me to play. I know things will change as Alex gets older, learns how to sit on his own and walks with a walker or on his own but as of now he is not going to be able to participate on his own.  No worries though because they all came into the next room and laid on the floor with Alex and cuddled. That is what actually made me feel better. I know I can’t let these moments make me sad or feel sorry for Alex. He has so much going for him. An infectious smile and laugh, beautiful dark brown eyes, strength like I have never seen and two parents and a twin brother who love him very much. I know in my heart once Evan has a better understanding of what is going with Alex, he will protect him and never leave him behind.

Moving on, let me tell you what Evan did last night. Eric, Alex and I were all sitting on the floor in the family room. Evan was running around as usual and got Alex laughing. Evan went and stood between the chair and couch and he would take a step or two to get Alex to laugh and then he would sprint toward him laughing which would get Alex laughing so hard he didn’t know when to stop. It was one of those moments that you never want to end.

Tonight, Evan would not go down. I checked on him a couple of times and he just kept continuing to scream. The 2^nd time I went in, he reached for me and I couldn’t resist. I scooped him up and took him into my room to cuddle with him. Evan isn’t a cuddler. He is on the move all the time, so when these moments occur like tonight, I can’t help but want to cuddle with him. He calmed right down and was asleep in my arms within 15 minutes. I didn’t want to put him to bed. I was in Heaven. Mr. Alex must have been jealous because about an hour later he woke up crying, Eric brought him down, he cuddled with me and was back to sleep within a few minutes. These moments are bittersweet for me and is what makes me love being a Mom.

BITS -N- PIECES VOL. 1

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Last Sunday we took the boys to the Circus for the first time. To be honest, we were both really dreading it because we knew that it would be exhausting and stressful. We took the stroller in thinking we could find a seat where we could keep them in it. That didn’t work out but surprisingly they did sit on our laps. When the lights went down, they were both mesmerized by the glowing lights around the arena. Just before the intermission, Evan was getting antsy so we let him walk around the concourse a couple of times and ended up leaving after that. Yes, I was still exhausted, but it went better than I thought it would.

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Alex’s PT is on vacation until February 1^st, so we are seeing the other PT while she is out. I was a bit worried that Alex wouldn’t do well with her because he sometimes gets upset with people he doesn’t know. Luckily that is not the case with Julie. He flirted with her right away which has now earned him the nickname “Ham” from her. He was in the gait trainer on Wednesday and she got his legs started at first and then she would only move the actual trainer and he moved his legs all on his own!! I was so proud of him!!

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Evan is now entering the temper tantrum stage of his life. So far, it’s been quite comical. He likes to throw himself on the floor if something doesn’t go his way or if he gets disciplined. We lay a blanket down on the floor for them to play on and he will rub his face into it and sometimes scream into it. I find myself laughing just typing this. I was informed this week from my husband that he used to do the same thing when he was little. Like Father, Like Son.

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Yesterday I took the boys to the Doctor for their 18 month check-up. I was a bit anxious because their appointment in November did not go well. They cried and were cranky the whole time which made it very hard on me since I was there alone. This time was a completely different story. They were super cute and very well behaved. Luckily they are caught up on their shots so it was strictly a well visit. Evan is already a whopping 25lb 10oz and Alex is 19lb 11oz. It’s a far cry from the 3.5 pounds there were at birth. Both are healthy and growing well. That’s all a Mother can ask for.

Friday the 13th

So I can’t really complain about the winter we’ve had this year. It’s already mid-January and we haven’t had any snow storms and it’s been unseasonably warm. I know I probably just jinxed it, but it figures that the year we are going to Florida, it’s actually nice. Don’t get me wrong, I am excited to go, but it would be more exciting to leave a ton of snow and cold behind. J

To some peoples’ surprise we are driving; I can’t imagine Evan on an airplane! Oh my goodness, I would be exhausted after a 2 ½ hour flight. Plus, people who know us know that we love to drive everywhere. We like seeing other states, being able to stop and we have to pack so much that it just makes more sense. I just hope the kids do well on the drive; it is their first long road trip. I am looking forward to some warm sunshine and seeing the ocean. I can’t wait for Evan to dig his feet in the sand and to dip Alex in the ocean. It’s going to be so much fun!

Before we get to the vacation, we still have a few weeks of daily therapy and appointments with the eye doctor and neurologist to contend with. We have been patching Alex’s eyes since his appointment in November. We alternate eyes with 2 hours each day. I do think it’s helped a little. His right eye still wanders a lot but the left one seems a little more stable. I am sure he will still need surgery next summer sometime. It scares me, but I know it’s very successful so I think he will be fine.

We haven’t seen the neurologist since July, so I am looking forward to that appointment. I am curious to see what he will have to say about Alex’s progress. He has been coming along so well. I hope the interruption of Physical Therapy (PT) won’t set him back at all. His therapist is on vacation until February 1^st, and even though she has set us up with the other therapist for the next 3 weeks, it worries me that he won’t get the same treatment he is used to. Plus, he is very comfortable with Kate and is at ease with her when she is with him. We’ll see how it goes.

Occupational Therapy (OT) has been going very well. We have been seeing Jennifer since November and Alex is starting to slowly use his right arm/hand a little more. He has a small splint for his right hand which helps keep his thumb out. He’s been opening his hand a lot more but still tends to keep his thumb tucked in, so the splint keeps it out and we are hoping it will encourage him to grab things with his right hand more. She has been working on putting small foods in his mouth on his own and playing mid-line more with his toys. One of his favorite toys in therapy is the fisher price farm. It’s an older toy and I am so excited that I was able to find it online for $5 for him! I can’t wait for it to come so he can play with it at home too. It should be here tomorrow!

Evan’s new thing is when he comes into the kitchen he goes straight for the pots and pans cabinet. He usually opens and slams the door a few times before reaching in and pulling them out. He loves getting his little paws on anything new. The family room is still not “Evan Proof” so that is something I would still like to conquer. I feel like I can’t keep up with that child! He is such a character though. He is funny and loves to make Alex laugh.

Tonight we went to dinner at Olive Garden, and we got seated in the large half circle booth near the bar. The boys were able to sit next to each other for a change and they LOVED it. They were touching each other’s arms and faces and Evan reached for Alex’s highchair to pull him closer!!

This makes me want a new side by side double stroller even more now. I bought one last summer at a garage sale, but it isn’t too comfortable on our hands so I like using it for walks around the neighborhood and that’s it. I want something a little nicer for everyday use. I need for it to be comfortable for them and me since we use it so much. I think the boys are at the age now where they enjoy being next to each other and this way no one gets stuck in the back seat. Hopefully we’ll be able to find something before the trip.

~~~~~~~~~~~~~~~~~Happy Friday the 13th!!~~~~~~~~~~~~~~~~

                   

Week in Review

Since it's been awhile since I have posted, I thought I would give a quick overview of the past week instead of doing one long post. Here's our week in review:

December 24

Christmas Eve was the just the beginning of festivities for the holiday season and was by far the most exhausting for us. My Aunt cooked dinner – which was delicious – but everything else was just crazy. Evan was non-stop and all over the place and into everything. Alex wouldn’t let anyone but Eric and I hold him which was super annoying because there were 15 other people there willing to help. We did manage to restrain them in their high chairs for a short amount of time. I thought they might be into opening presents, but they weren’t – so that was a little disappointing. They got a lot of wonderful things and are very spoiled and loved. Needless to say, by the end of the night all 4 of us were cranky and tired.

December 25

Christmas Day was a little more laid back. I made breakfast and we opened our gifts. We went over to my in-laws for dinner and even though it was still tiring, Grandma held Alex and Evan didn’t get into as much trouble.

December 27

Today we visited the Physiatrist. The appointment was nice and quick after a lovely hour and a half wait in the waiting room. That is not the best of times when you have 2 toddlers. We made the best of it by carrying Alex around, letting Evan walk around and then taking them for fast stroller rides up and down the hall! Hey, you gotta do something to pass the time! Neither Eric or myself were overly impressed with what the Doctor had to say. He gave us some ideas on the exercise ball to use on Alex and suggested Ultrasound Heat Therapy for his hamstrings (which our PT has since shot down) and night splints to stretch out his leg muscles. According to his PT, Ultrasound Heat Therapy hasn’t been clinically proven to be safe and can cause damage to the growth plates in his legs. We decided against it since we can either use heat packs or massage to warm the muscles. He did say that he seems to be sitting better – which he is – and wants to see him again in 3 months.

December 28

Today we celebrated Christmas with Eric’s family. It was nice to have a few days in between. Alex and Evan got to eat their favorite meal – Lasagna! Evan had a ball roaming around Aunt Sharon and Uncle Ed’s house and even played a few notes on the piano at the end of the night! Alex did awesome at sitting up today. He loves his new Crawl Ball that he got for Christmas. Grandma got him laughing pretty good too! It was a really nice day.

December 29

 Today’s therapy was only supposed to be OT, but Kate his PT had an available appointment right after so we took it. Alex wasn’t very pleased, but he still did well. During OT he practiced putting cheerios in his mouth. This is going to be a long process for him as he doesn’t understand how to pick them up and transfer them to his mouth. That connection just isn’t there and I wish more than anything that it was. He will pick things up that are on his tray but he just brings his hand back and drops it. He actually seemed to pinch the cheerios with his right hand better than his left which is surprising. I just have to be patient with the process and sometimes that’s hard for me.

December 31

No big New Year’s plans for us. We went to an early dinner, walked around the mall and called it a night. I have been really sick with sinus stuff so I just laid around after the boys went to bed. I really only stayed up till midnight so I could kiss my husband!  

A lot has happened this year with Alex and Evan. They have grown and changed so much. I am very pleased with Alex’s progress in the 6 months he’s been in therapy. I am looking forward to this coming year and hope that it holds just as much promise and good as 2011 did. Evan is soaring along and becoming such a big boy. I am so proud of both of my boys and can’t wait to see where life will take them this year.

Happy 2012!

Evan Almighty

I don’t know if I am fully prepared for the next stage that I am about to enter into with Evan. I think it is referred to as the “terrible twos.” He just turned 17 months (15 months adjusted) and it’s starting. The little tantrums he throws when he can’t stack 2 blocks, or when he gets disciplined or when something doesn’t go his way. Oh, it’s starting.

Today was a rough day. We hang out mostly downstairs in the family room. It’s a large room, so I have the area where the boys play kind of barricaded. Outside of the barricade is the dog’s cage, the computer desk and of course the stairs. All of these areas Evan wanted to be a part of – big surprise. For over an hour this morning he kept breaking out of the barricade which became beyond frustrating to me. Not only was I not able to spend any time with Alex, but I was sweating like crazy and was ready to call it a day at 9:00 am. (I am able to laugh at the sweating part now as I read it back) I yelled at him a lot and I felt really bad. Not that this is the first time I have had to discipline Evan, it just seemed like a lot all at once. I was finally able to keep him in the play area and give Alex some attention but it didn’t stop Evan from crying about nothing.

It’s these moments that wear me down as a mother of twins. It’s these moments when I realize how much work it is and days like today that make me feel like a failure. But I can’t give up and I won’t give up. I take a few moments to myself, get it together and continue on with my day because that is my job as a Mother and I can’t quit.

The afternoon was much better for all of us. We all went to Alex’s therapy appointment which went really well and then came home and played. I apologized to Evan for yelling at him even though I know he doesn’t fully understand. I made sure to give him lots of hugs and kisses. Then, this evening while I was sitting on the floor with Alex, Evan came up to me, put his arms around my neck and gave me a super wet kiss on the cheek and then one on the lips. It’s more like he just opens his mouth and slobbers spit on me, but I will take it. It made all of my feelings of being a failure disappear because somewhere along the way I have taught my boys love and that’s something that can't be beat.

Milestones

Milestones are a big deal, especially when an infant is growing and developing. As a parent you get excited when something huge happens and you feel like the proudest parent in the world. I remember the first time Evan rolled over; we were at my Aunt’s house and it just happened out of nowhere. Only myself, my Grandma and my Aunt Susie saw it and you would have thought someone won the lottery we were so excited! From there he crawled, pulled himself into the sitting position, then standing and eventually walking. Right now he has his own little language going on but last week clear as could be he said “Mama” for the first time. I still have a smile on my face.

Alex hasn’t had the milestones Evan has had but that is to be expected. There was a time when I would get really sad about this as he would lie on his back on the floor while Evan roamed the room. But then I think about the things he HAS done and I couldn’t be more proud. Recently he has reached for the spoon or fork while we are feeding him because he wants to do it himself. So I let him do it every time he reaches! Today, he was holding his sippy cup with his left hand – which is also his dominant hand -  and out of nowhere he grabbed on with his right hand and held it with both hands for a couple of seconds. He's never done that before and I think my excitement may have startled him, that’s why he let go! My favorite moment this week was at therapy on Monday. He has been using the gait trainer towards the end of his session (for those of you who aren’t familiar with a gait trainer, it’s a fancy walker for kids his age) and he does a great job of holding himself up and standing on his own. His Therapist Kate has been assisting him in moving his legs while he is in it, but he decided that he was going to pick up his left leg and do it all by himself before she could get to him. I freaked out – in a good way of course; I just couldn’t believe my eyes. Then she just had to touch his right leg to get him to move it on his own. My excitement made him super happy and he was smiling and moving his legs. It took everything in me not to cry.

It’s these small moments that keep me going. It takes some of the sadness away and gives me hope for his future. It’s also not fair to Evan for me to be sad because he is doing things Alex can’t. His milestones and accomplishments need to be celebrated just as much as Alex’s. They are both so strong and determined at 17 months old – each in their own way – how can I not be proud?

I love when they make each other laugh. Evan cracks up whenever Alex sneezes and Alex cracks up whenever Evan crawls around really fast in front of him. They give each other hugs and kisses and when one gets in trouble, the other gets upset too. I love having twins and even though things are a little harder for Alex, I know things could be much worse. His Cerebral Palsy isn’t gonna go away, so we can either let it control our lives or we can control it by making the most out of what he CAN do and focus on teaching him new things every day. I refuse to let him down.

Reflecting

Many people praised me on my initial post for being so positive. Let me just say that it’s taken me a long time to get where I am today. It’s been a rollercoaster of emotions from the day I found out I was pregnant. I think if anything, parenthood and parenting a special needs child have given me more perspective of what life is all about and they have made me who I am today.

Before I was pregnant, I didn’t have anyone to worry about but myself. No one depended on me and I was a very selfish person. That was one of my main concerns with starting a family. I knew that once I had kids, I wouldn’t be able to do whatever I wanted when I wanted. I was very accustomed to that lifestyle. Eric and I had been together for 9 years and for 9 years we came and went as we pleased. No restrictions. People had been asking us well before we even got married when we were going to have kids. To be honest, kids kind of annoyed me and that scared me to death because I didn’t think I had it in me to be a Mom.  

Everyone kept telling me that it is different when they are your own kids. Blah Blah Blah is what I would think in my head. But I’ll be damned, they were right. So right that I am telling people I know without kids the same thing now. It is TOTALLY different. Never in my life did I think I could love 2 little people as much as I love Alex and Evan. My selfish lifestyle went right out the door and my world now revolves around them.

There are so many times when Eric and I reflect on where we have been with Alex and Evan. I think parents of premature babies and more importantly, parents who have spent a substantial amount of time in the NICU tend to do this. I knew that carrying twins had its risks, including preterm labor. I figured I would easily make it to 36 weeks since my pregnancy was going so smoothly. I never imagined I would deliver in an emergency C-section, have 3 ½ pound babies, leave the hospital after 4 days without them and travel back and forth every day for 48 days. But I did and that’s how it was supposed to be. Why? Well I don’t have the answer to that, but I can tell you that it has made me a better and stronger  Mother.

Going back and forth to the NICU was tiring both physically and emotionally as a parent of two newborns. I wanted more than anything for my boys to be at home in their own cribs, not hooked up to any monitors and available for me to cuddle with them anytime I wanted. But I also wanted them to be healthy and well and that’s what the time in the NICU was for.  We learned a lot while we were there and when it was finally time to bring them home, I felt more than ready; more so than I would have been if I had brought them home after 4 days. Bringing a baby home can be overwhelming but bringing twins’ home is downright terrifying. So I am thankful for our time spent in the NICU, I just wish it didn’t have to be so long.

Tonight as we were feeding the boys’ dinner, we were reflecting back to when they couldn’t even eat from a bottle and had to be fed through a feeding tube. Those days seem so long ago as they are eating what we refer to as “human food”, drinking from their sippy cups and are no longer taking a bottle.

Then it hits me, I don’t have babies anymore. I have two toddlers!