Showing posts with label ainsleigh. Show all posts
Showing posts with label ainsleigh. Show all posts

Sunday, November 2, 2014

one!! // a first birthday bash

This is going to be a picture heavy post, but first I want to say this: I prayed (and I was prayed for) and this birthday was easier than any other. I felt so much peace. I didn't yell at my family for three days prior to the party. I didn't cry the night before the party. I didn't stress about getting things done, or cleaning every inch of the house. I felt grateful for every decoration, and all the small moments of prep, and for J who took a day off to make a wonderful cake. And, most of all, I felt thankful for Ainsleigh's life and fierce spirit. Sometimes we don't get what we want, and sometimes the force of the one who is missing knocks us sideways, but there are rare moments when everything feels okay even though the picture we imagined isn't the one we hold before us.

Ainsleigh received a lot of presents, but she was enamored with the baby doll.

J made the dairy free, gluten free, vegan cake with a macadamia nut frosting. He made the colors with carrot, blueberry, and raspberry juice. Yes, he is amazing.

Sharing with brother

My sister took a candid shot of me reacting to Ainsleigh opening her first baby doll. Sometimes a picture captures emotions perfectly. Happy birthday, baby girl.

Wednesday, October 29, 2014

happy birthday, ainsleigh hope!

We celebrated Ainsleigh all day today. This year has zipped by! It is a blessing to be mama to a girl who is so full of life and energy. I've been feeling really down, but this morning we spent time with Ainsleigh's almost birthday friend, and another good friend, and it lifted my spirits so much. Maybe because we all brought treats ... We gave the little girls pedicures and I felt better emotionally than I have in DAYS. We need our friends, sisters! 

Darling, darling Ainsleigh girl,

You are one!! What a fun year it's been! You like to sit in mama or daddy's lap while you play. You love your brother because he makes you laugh. You can walk a little bit, but you prefer crawling. You love food - oranges and grapes are your favorite. You talk and sing all the time. You are VERY, VERY loud. You love music - you clap and bounce when your brother turns it on. You like to put things on your head. You're developing a sense of humor. You call your people mama, dada, and bra (brother). You know how to wave and stack, and climb. You celebrated your birthday by climbing on the kid table with the toy bus. You fell off and hit the side of your eye. You might have a tiny shiner for your first birthday party!

We love you so much, and we are so happy you are ours. There is a part of me that needed you so much, baby girl. You won't understand until you yourself are a mama, but when I say you are my hope I mean you literally made it possible for me to breathe deeply after years of shallow gasping. You are the answer to so many prayers.

Love you, Ainsey girl!

Tuesday, October 21, 2014

on birthday grief

Celebrating birthdays with my living children is one of my biggest triggers.  It's the one time I hide my sadness from them because I don't want them to feel the weight of my sorrow on their special day. I want them to feel the sheer joy and heartfelt relief we experienced when they were born and we heard them cry for the first time.

After a nearly silent birth - or a completely silent birth - hearing a cry as you labor to bring a baby into the world is like birthing with a symphony in the background. That one cry lights up every nerve ending in your body and makes you so glad you held on through the trauma and fear that accompany pregnancy after loss.

It feels a little unfair that I am so overwhelmed and emotional about birthdays. Unfair to the kids that is. I asked a friend to make a tutu for Ainsleigh to wear on her first birthday. I asked for a pink tutu even though I remember the one that hugged Charlotte's cold feet for a photograph. I have to find a way to hold the image of Charlotte's feet next to the image of Ainsleigh in a tutu without falling apart. It's a hard balance. Just looking at the tutu makes tears come to my eyes, but I want to see Ainsleigh walking around looking gorgeous on her birthday, so I'll put aside the sadness for a day. I'll sit on it if I have to, if that's the only way. I'll pretend it doesn't exist just for a day. It's not a betrayal. It's not. It's coping.

When you wait so long for something getting it feels a little unreal. Looking at Bennett and Ainsleigh playing on the living room floor makes me pause sometimes because they are a dream come to life.

The other thing about waiting a long time for something, or someone, is that when you get to the place you've been dreaming about - a first birthday, a live birth, a year of growth and discovery - the achieving is weighty. And in this case it's tinged with sadness too.

There's a lot of, yay, a girl, we had a girl, and we've had her for a year, praise the Lord! and there's a lot of, but I want both my girls, but why couldn't Charlotte live, who would she be, how would we be ...

I don't want my kids to spend their birthdays competing with someone who isn't here, so I smile and sing 'Happy Birthday' with tears in my eyes and the understanding that in a few years they'll see the tears so I'll have to sing the song without the tears. And every time I wrap birthday presents I cry because it makes me realize how gone Charlotte is. How she never had time to be. How I'll never know what she would have loved to receive as a gift.

Ainsleigh is nine days shy of her first birthday. And I am glad - so incredibly glad - that she is here. That she climbs on furniture and falls off chairs and stands up in the shopping cart after escaping her buckle and generally leaves me feeling exhausted and like I can't keep up.

But I wish there were two pink tutus sitting on the back of the striped chair in the living room waiting for party day. I wish there was a four year old here. I wish I had my C, the missing piece to my B and A. I wish I had them all because then life would be purely sweet, and there wouldn't be that bitter tinge of grief that rings every celebration with shadows and guilt and that mean spirited thought: you should be happier.

Friday, August 29, 2014

seven months with a hearing aid {an update}

I've been struggling with Ainsleigh's hearing loss. Well, not so much the loss as the caring of the loss. Ainsleigh went through a phase where she absolutely would not leave her hearing aid on. I would spend one hour in the morning and one hour in the afternoon sitting on the floor with her and putting it in over and over and over. Then life happened, we got busy, we weren't at home as often, and I stopped putting it in.

For three weeks or so I didn't put Ainsleigh's hearing aid in at all. I thought about doing it, and I worried about the long term consequences, but I couldn't find the energy and patience to sit with her and force the issue. Plus the person who conducts our in-home visits was off in August (no funding) so I didn't have anyone calling to ask me how things were going.

Ainsleigh is doing so well I forget she can't hear. Then J calls her name from the doorway in the living room and I watch her swing her head frantically from side to side trying to find him and it hits me all over again what inability to localize actually means. It's not just a line on a form, or an explanation in her medical records. It's gently leaning forward, getting Ainsleigh's attention and showing her where to look. It's worry that she will be hit by a car someday because she's looking the wrong direction when she hears something before crossing a street. It is understanding, as our in-home counselor says, that just because we can't see Ainsleigh's disability doesn't mean it doesn't exist.

I forget that sometimes.

I am so overjoyed Ainsleigh is alive I forget to worry about her hearing loss. Who cares about an ear that fails to perform when her lungs, heart, kidneys and other major organs function as they should? And unilateral hearing loss is so tricky because speech delays don't show up until 18 months. Sometimes delays in other areas crop up, but so far Ainsleigh is hitting all of her milestones without issue.

First step three days shy of ten months!! 

Our in-home counselor said something the other day that hit me really hard, "I hope Ainsleigh's disability is never obvious or apparent, but if it becomes obvious you will want to ensure you've done everything you can for her."

The next day I put Ainsleigh's hearing aid in as soon as she woke up. And she left it in. Ainsleigh has been wearing her hearing aid most of the time she is awake and she's only taking it out two or three times a day.

And you can praise me for sticking with it, or her for being a little older, but the truth is that I've been leaning on Jesus for this one because I can't do it alone. It's too frustrating, overwhelming, and hard. I can't sit with Ainsleigh for an hour twice a day right now. There's too many other things going on.

It's early days, I'm not sure how tomorrow will go, or the next day, but right now Ainsleigh is wearing her hearing aid, which means I can stop worrying all. the. time. about how I'll feel if she shows delays in eight months.

In some ways I feel like we're starting over, but three weeks off really isn't that long. And thankfully life (and Jesus) leaves plenty of room for second (and third and fourth and fifth ...) chances.

Tuesday, July 22, 2014

thank you ... woman! {update on the kids}

Bennett is in an intensely adorable phase of language development. Everything is "handsome" and "fancy" right now. As in, "check out my handsome dance!" Or, "that's a fancy shirt!" The day he stops calling helicopters "hopper coppers" I will cry. Bennett uses "cool" and "awesome" a lot too, only his "cool" comes out as "kewl." He's struggling with his double 'o words right now, but the result is really cute.

We've been on the road a lot this summer. On one trip through the Burgerville drive-thru (what would we do without Burgerville?!) J placed our order to which the server said, "Your total is ----, thank you!" And then Bennett's little voice piped up from the backseat, "thank you! ........ woman!" J and I laughed so hard at Bennett's attempt to be kind.

This morning Bennett asked me if I like the color red. I said yes, then asked if he likes it. (His favorite questions right now are, "what's your favorite color?" and "how was your day?" so we answer those two things five thousand times a day.) "I like red." Bennett responded, then he paused and reconsidered. "In fact, I like purple," he said.

In fact? Where did he learn that phrase?!

Bennett's speech and language is advanced for his age. Our audiologist commented on how well she can hear and understand him (she is deaf in one ear). His grasp of words and the complex sentences he strings together surprise me every day.

Remember when he looked just like Ainsleigh?

Ainsleigh is busy and loud. I think that is what I will remember most about her babyhood. Was she ever a newborn? I feel like she's been scooting around for months. And isn't it weird how difficult it is to remember a time before they existed? I remember last summer, of course, when the anxiety of Ainsleigh's pregnancy sat heavily on my shoulders, but now the memories are hazy and indistinct. It seems like she's always been here - exploring and squawking.

I took the kids to story time at the library last week. There were a lot of kids Ainsleigh's age, but she was the loudest by far. Other parents were staring. Her hearing loss has nothing to do with it. She's just really loud. Queen Squawkers. Our sweet, sweet girl.

The hearing aid is still a daily battle. I put it in. Ainsleigh rips it out. I put it in. She tolerates it, which gives me a little hope, then rips it out. I have to outlast her, which is really hard because she is so stubborn and determined. My motivation lies in knowing we aren't hurting her, and sticking with it now may help her language develop.

Ainsleigh has her first tooth coming in at eight months, just like her brother. She is slowly starting to hands and knees crawl, but she prefers army crawling because she can move so fast. Ainsleigh likes to stand, walk with assistance, and is just starting to cruise along the furniture a little. She'll be nine months in a week!

Next up for Ainsleigh: walking.

Next up for Bennett: toilet training, which I know is not going to be an easy process because he too has a stubborn streak. I'm going to try and refrain from sharing too much about the journey because I want him to like me when he's 15, but I'm a little nervous about it all!

Friday, June 27, 2014

I hope you always love the simple days

My house is a mess - keeping it real!

I can't believe (of course) that Ainsleigh will be eight months in two days. She is busy, curious, and sporting her first black eye. She loves to stand, army crawl and play with Bennett. Ainsleigh just learned how to sit from a lying down position. Lately she's been doing it in her sleep, which wakes her up, which makes her grumpy. If she wakes up too much she pulls herself to a stand and jettisons whatever is on the changing table next to her crib. My constant refrain: "Ains, sweetie, what did you do?!"

Today I took the kids on a day trip to McMinnville. And now I am in a lot of pain. I felt like I was on the mend, but I think I overextended myself today. We went to the bookstore, then an indoor play place, then Bennett and I ate a picnic lunch in the back of the Subaru. We read our new books and ate cold pizza and freshly picked berries while Ainsleigh slept.

As Bennett and I have more fraught moments (toddlers are tough!) I'm trying to create more simple days where we do fun stuff that is low key. (Okay, that play place was not low key, but I thought of it at the last minute so ...) I'm trying to put my phone down, set aside my laptop and just hang out with him. He said his favorite thing about today was our car picnic. And I understand why. It was just us, reading, chatting and eating. It's amazing how much focused time kids need. The pace of life makes it difficult to move in a slower stream, but I'm trying to spend more time in the shallows. There will be time for rapids later, if I want to engage them.

Wednesday, May 21, 2014

ainsleigh girl

We are one week into life with Ainsleigh and her hearing aid. There are subtle differences in her behavior. She is more attentive. She interacts and follows conversations a little better. Some things haven't changed. Anytime Ainsleigh hears a noise she turns to the right. That won't change. She'll never be able to localize a sound, or noise, or voice properly.

Last week I went to the ear, nose, throat doctor we initially saw three months ago. It was a very frustrating appointment. The first thing he said was, "Oh, you decided to aid her." And I heard it as being a negative, but it was the day after Charlotte's birthday and my mood was wonky so maybe he didn't mean it that way. He also mentioned wanting to do an MRI at 18 months, even though we had shelved the idea of an MRI (or so I thought) at our initial consult.

On Monday afternoon our teacher, or therapist, or whatever she is called (I don't actually know her title) from the ESD that we are working with came by for a home visit. We are working with the ESD audiologist so we get home visits and early intervention care as well. Title aside it's nice to have someone I can talk to about Ainsleigh's hearing loss and medical care who is knowledgeable and available. And she works with Ainsleigh on her developmental milestones which is important and may be neccessary.

When I told her how upset I was about the appointment, and how I was questioning our decision to "aid" Ainsleigh she presented me with two questions.

1. If you take the hearing aid off - which is fine, it's your choice - and she has delays in the future how will you feel?

2. If you leave the hearing aid on and continue working with her and there are delays in the future how will you feel?

Well when she put it that way I remembered why we chose to get a hearing aid for Ainsleigh in the first place. We are trying to be proactive about her hearing even though we can't know or predict if it will have a negative impact on her life - speech, development, learning etc. That's pretty hard to do. Babies with unilateral hearing loss don't show delays until 18 months or later. And if Ainsleigh starts struggling at age five I want to look back and know I did everything possible for her now.

It is a bit of a struggle. Ainsleigh doesn't want to leave her hearing aid on. It tastes yummy, she likes the texture, so she pops it out and puts it in her mouth. It's very stressful to discover an expensive medical device on the floor, or in Ainsleigh's mouth ten times a day an hour so we've started putting a hat on her. The hat allows her to roll around and play without the hearing aid slipping off her ear and thunking the floor over and over, and it gives me a little break from putting it back in and reminding her not to touch it.

The hat was recommended to us by our teacher and it's worked really well. Unfortunately it's warming up outside and a hat, even a thin cotton one, can make Ainsleigh too hot. (If you see Ainsleigh in an aviator cap and onesie in 95 degree weather this summer assume we haven't convinced her to leave the hearing aid alone.) We ordered a sweet girly hat a few days ago, but for now Ainsleigh is swanning around in one I pulled out of Bennett's keepsake box.

I feel like we're making the best decision for Ainsleigh. As best we can with the limited knowledge and information we have. I'm learning how to manage her hearing aid and the intricacies and annoyances of it. Ainsleigh is on track with language and speech development. I hope she continues to do well and thrive, of course, and I think having a hearing aid could help. It certainly doesn't hurt.

Monday, May 12, 2014

tired, overwhelmed and weary // ainsleigh's first hearing aid

This mama needs some prayers tonight. I was not a kind mama today. I was not kind, or patient, or my usual self.

I forget how hard the stretch from Mother's Day through her birthday is. I know it's hard, I remember I don't like it, but the details always escape me.

My stomach hurts. I feel nervous all the time, like I'm waiting for something bad to happen, like something is coming and it's going to hurt. I haven't thrown up from the stress of it this year. Yet. Progress!

My jaw hurts because I clench it and press my teeth together. All day. I don't want the kids to see me cry. I think there are times when it is healthy. More often I have to keep it together so I don't upset or scare B.

This was not a good week to have Ainsleigh's hearing aid placed, but we didn't have much say in the matter. I was trying to learn about her hearing aid and our responsibilities with it this afternoon, but I know I wasn't all there. I'm really overwhelmed by everything right now.

Ainsleigh had a horrible day. Asking her to go through the fitting and tuning process was really too much. She is picking up on my stress and throwing it back at me. It's a terrible cycle, one that is entirely my fault.

We're all exhausted and wrung out.

Today was a big milestone for Ainsleigh. We'll see if her hearing aid makes any noticeable difference.

Stop touching me!

The therapist who works with us at home tried so hard to keep Ainsleigh distracted and happy


A brief break

Daddy makes everything better

Ainsleigh is my driven, determined, strong, busy girl. This afternoon I placed Ainsleigh in the car seat, but didn't buckle her in. When I left the room she somehow got herself out of the seat and down on the floor with Bennett.

AND! On Mother's Day she started calling me mama. Over and over and over. I'm so proud of her for getting through today. Now we just have to get through tomorrow and Wednesday. Hopefully by Thursday we'll all be on a more even keel.

Sunday, May 4, 2014

the beginning of a beautiful friendship

Since Ainsleigh will not be denied I've reluctantly started giving her food. I cannot explain how vocal this child is. You just have to experience it.

Since Bennett didn't really get going with food until 8 months this is new territory for me. I'm doing baby led weaning, but I'm not quite sure what I'm doing. And it's not strict baby led weaning because I am making some of her food into a fairly chunky puree.

Maybe we should coin a new phrase: instinctual feeding. I bet if I google that phrase it already exists (so I'm just not going to do that).

This evening I caught myself thinking I haven't fed her in a while! I'm supposed to feed her breastmilk before solids. Oh no! I'm not introducing one food at a time either.

Reminder: there aren't baby police, or mom police, who will enforce these rules that are really just guidelines.

This evening I put a bits of pureed sweet potato on Ainsleigh's tray and let her explore. She had a great time.

Ainsleigh has tried avocado, sweet potato and homemade chicken broth. She liked all of them but chicken broth is definitely her favorite.

How is she already this big?


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