28 March 2014

Am I Messing it all UP?

 
BEAUTIFUL <3

Well today I hit a wall, not literally, although that is something that I would do. The day started off just fine, I chatted with my dear friend Cat, she informed me that everything is all set up at the PLC for Adele's Over the Rainbow Baskets. She spoke with the manager of Labour and Delivery/Postpartum and the manager told Cat that she would embrace the idea of the baskets. Cat was so excited that she was crying on the phone with me. She has been such a supportive and kind friend throughout our journey. <3


Taking a nap on daddy :)

The girls and I have a routine that we try to follow every weekday. We get up, Brinley gets her milk, we all hang out, Adele gets her bottle and Brinley has breakfast, then it's nap time at around 11:00am for Brinley. I usually have their outfits picked out the night before, so we can get dressed and out the door. I didn't do that last night. I decided to put Brinley in her crib and pick out some clothes for the girls. I should have known better. When I went to leave Brinley's room, she went into the ugly cry. I picked her up, had some snuggles, and tried again. Nope. At that moment, I started to feel a bit overwhelmed. I don't know if it was  because our schedule was thrown off or that I knew that Brinley would not get a nap today since we had Music Therapy in the afternoon? I brought her into our room, Adele was already napping and Brinley sat on the bed and played Endless Alphabet while I showered. Then I had a thought, I don't follow the 'nap rules'.....I don't put Brinley down at 1:00pm which is normal for her age. I put her down in the morning because we have so many things going on in the afternoon. Am I totally messing her up? I should be following the 'nap rules.' I'm sure that all my friends do what the books say to do and I'm the only one screwing with my child's sleep schedule. Brinley needs a morning nap still. She's tired. She would also take an afternoon nap if we weren't so busy. AHHHHHHH!!!!!


So HAPPY!

When I got out of the shower, I felt I hit a wall. I was standing in front of the mirror and I had tears in my eyes. At that moment, I let too many thoughts rush in. I had two hours to get ready, get the girls ready, feed them lunch, out the door and on our way to music. Yes, I realize that two hours is enough time to get it done, but I felt that I needed more time. I needed to make sure that Adele got her cereal and Brinley needed lunch. Then I had another moment. I feel that James and I aren't doing enough for Adele. I feel that we need to be doing more exercises. I feel that we need to feed her more solids. I feel that we need to focus more on Adele. I felt lost. I feel that we need to be more consistent. I feel that we need to set up a schedule. We need to do exercises at certain times and if we write them down, we will do them, we will get them done.


NO MORE SNOW!!

I feel so lost sometimes when it comes to Down syndrome. It's not that I forget that she has Down syndrome, it's that we had it one way with Brinley, where we just loved her and fed her and changed her. It was 'normal.' It's not 'normal' with Adele. It's a whole new world. I feel that sometimes we don't know what we're doing. Our lives are consumed with writing her feedings down, what she ate, how much, what time, a pee, a poo, a spit up. Oh no, her poop is solid again since we started cereal, so do we up her prune nectar? Is she stronger? Is she less floppy? Is her breathing sounding better? The hearing clinic isn't calling me back. I've called them three times. Don't forget to call for her next vision appointment. Don't forget that she has her respiratory appointment next month and that they need to give us all the forms for the flight to Disneyland. Don't forget to call Medigas and get the cylinder that we need for the flight. Don't forget the tegaderm for her cheeks.




Why haven't we watched all of the DVDs for Signing Times? We need to learn more signs. Wait, there's another thing, the OT said that although Adele is extremely strong, like surprisingly strong, we need to work on strengthening other parts of her body. The OT mentioned that she didn't want to deflate my bubble.....deflate my bubble? I don't have a bubble to deflate. We just work on things, we work and worry. We need to work more on her core. Adele is going to end up realizing that she can move around while she's on her back and she'll think that it's ok to crawl and move around that way. She needs to be on her tummy and get those arms up front.
I sometimes feel that I need somebody to take my hand and guide me through all of this. I need somebody to call me every day and tell me what to do. Are we missing stuff? Should we be doing more? Are we giving her every opportunity to succeed? Are we doing all that we can now? Are we messing it all up now and she won't walk until she's 5? I DON'T KNOW!!!!

Sigh

I need to know that others are in the same boat as us. I need to know if you feel that you just don't know sometimes. I need to know if you feel overwhelmed by appointments and making sure that you stay on top of blood work and tests. I try so hard to take things day by day, but it's impossible. I think about the next appointment, the next test, the future.

I'm trying so freakin hard with these kids to give them all the love, encouragement, support and joy that I possibly can give but I sometimes feel that I'm messing up. I could do more. I should be doing this....that....going here...going there....saying this....saying that...
And then the added stress of having a little one with special needs. I don't ever regret having Adele, she has made our lives complete. She has made this family complete. Being a parent is hard work. Being a parent to a child with Down syndrome really tugs at your heart strings. It's not the 'normal' that we are used to. It's a journey. A journey filled with a lot of questions. A journey filled with so many unknown paths. I want to be on the path that will allow Adele to flourish. I want to be on the path where I am smiling and breathing and taking in all of the wonderful moments. I want life to be easy for Adele. I want her to shine. I want her heart to be full. I want her journey to be one of beauty and love and hope.



3 comments :

  1. Actually teared up just now reading this one because I remember how all this felt.

    Let's start with this first. You do nap time when it works best for you and your child! Period. I don't do afternoon naps with the boys either, they go down before lunch at around 11am. We like to use our afternoons for playing not sleeping, an earlier nap also means they go to bed easier. If Russell naps in the afternoon he is up all damn night! And I don't like hanging out with him at night. So do what works for you.

    Now when it comes to Adele...I know exactly what you are feeling. I remember crying many tears over the fact that five babies later I had to do things a different way because Russell needed more help. For a long time I let his therapies and thoughts of what we should be doing, and what we should be working on next overwhelm me. It is the one thing I would go back and change if I could. I would have worried less and enjoyed him more. But at the point where you are right now I know that is easier said than done.

    Our Early Intervention worker had us do this. Write down all the things you need to work on with Adele right now. Whether it's strengthening her arms, working on her core, trying new foods...Anything. Make a chart Monday through Friday. On each day pick two things you want to work on and write them down. For that day you only focus working on those two things. Of course the other things will just naturally be done during the day also, but you would mainly focus on the two things charted out for that day.
    This way you look at the calendar, you know what you are working on, and you do not feel overwhelmed. Give the kid (and yourself) the weekend off. She needs a break too. She needs to just be a baby. And you need to be able to enjoy her without worrying every second about what you should be doing.

    And Krista, you're doing an amazing job. You love your daughter, so nothing you do or don't do is going to screw her up. She's going to be just fine :)

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  2. You always know exactly what to say! This is one piece of advice and feedback that I am going to read many times over. After I read your schedule idea, I actually felt a whole lot better. I need to write it down, and choose only a couple things a day. I know that if we do this, we will feel less stressed. I am a teacher, I write things down and when I do, life is better. I write what I am feeling in the moment and at that moment last night, that's how I felt. There's been a lot of feedback from friends, who support and who are awesome, but they don't have a child with Ds. The feedback from the parents with a little one with Ds can relate and give advice that makes sense. You have been there. It is stressful and you worry. It's different with our kiddies. There are more worries. Thank you Jenny. You made me feel a whole lot better. When you want to start charging me for our therapy sessions, please feel free to send a bill. :) <3

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  3. Spend More Time With Your Children http://www.nightart.org/fundus.
    It does not matter if you work full time or part time. Maybe you stay at home with your children but you are working from home. Even if you stay home with your children, you are busy trying to get everything done. No matter who you are, you probably think that you are not spending enough time with your children. Quality time, that is. There are many ways to spend more time with your children.
    Your children do not need to play every sport or do every extracurricular activity out there. You could spend all of your time running your children from one practice to another. Pick just one or two activities that your children love and stick with them.
    Plan family dinners where everyone sits at the table, eats, and talks about their day.
    Make dinners special so everyone likes to spend time together while eating.
    Let your children help when you are working on things.
    They can help fix dinner, clean, and fix things. Children learn by watching and doing. Chores can turn into time together so that they are much more enjoyable.
    Do things that your children want to do.
    It is hard when the house is a mess but get on the floor and play with your children. Play games that they enjoy. Have a movie night and watch their favorite movie.
    Find things that you enjoy doing together.
    Arts and crafts can be a big hit. NightArt is helping bring parents and children together. You can design a drawing and watch it light up together.
    No one feels like they spend enough time with their children. However, you need to make the most of time spent together, instead of worrying if you are spending enough time together. Find things that you enjoy doing together, like NightArt. Check it out at http://www.nightart.org/fundus. It will bring out the artist in everyone, bringing families together.

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