As long as it’s healthy

“Do you have a preference for a boy or a girl?”

The pregnant woman pauses. Considers her belly and gives the typical answer.

“I don’t mind, as long as it’s healthy.”

It’s the standard response. I know I gave it myself many months ago before I knew the Peanut was a girl. There’s not a lot of thought in it, and when I said it I was trying to reassure the asker that I didn’t have a preference and my hopes weren’t set on one or the other.

But what does it actually mean?

As long as it’s healthy.

You’ll love it… as long as it’s healthy?

You’ll take it home.. as long as it’s healthy?

You’ll be happy… as long as it’s healthy?

The implication is that as long as your baby is healthy, you don’t mind the smaller stuff. But whenever I hear someone utter that phrase now I wince. I know they don’t mean they wouldn’t love an unhealthy baby. I think it’s just the assumption that that won’t be something they will have to worry about. And for most pregnant mothers, that turns out to be the case.

When the Peanut was in her second stay at the hospital, I popped out of her room quickly to grab a Coke from the vending machine and saw an ante-natal group getting on the elevator, on their hospital tour. A few months earlier I was on that same tour. I wrote about it here. Even then I knew my pregnancy, and my experience of motherhood, would be outside the realm of what most mothers experience. But I was still hopeful and excited, and didn’t know what was really to come.

I watched the group. The women in varying stages of their third trimesters, waddling slightly and holding their partners’ hands. I remembered that feeling of excitement and anxiety as we saw a birthing suite. Each couple thinking about how they would be there soon, and finding it hard to really imagine what it was going to be like.

Now, I’m on the other side and I look at those mothers and wonder if any of them already knows that their baby might not be one of the ones that’s healthy. Did any of them get hard news from their scans? Will any of them discover something unexpected at the birth of their child? Or in the days and weeks that follow?

It’s not that I wish these scenarios on anyone. I just remember, and envy, that not knowing. That feeling that you don’t even need to consider the thought of whether your child might not be healthy, because you assume it won’t be you. That your labour will be hard, maybe very hard, but that at the end of it you will get to go home with a healthy baby and complain about the normal parental complaints. Sleeplessness. Breastfeeding. Colic. Don’t get me wrong, I’m not down playing any of these things. They are challenging hurdles. Every new mother and parent has a huge adjustment to make.

It’s just when I see pregnant women, full of hope and excitement, I can’t help but whisper under my breath that the “as long as it’s healthy” might not apply to them. And that realising this will be hard. So hard.

I looked back at a few old posts today and hardly recognised the person who was writing about birthing plans and epidurals and not minding how the birth went “as long as she’s healthy”. I thought the biggest issue the Peanut and I faced was her eye. And that seemed like a huge thing at the time.

At one of my last ante-natal classes our instructor briefly talked to us about “expectations” and what could happen if our baby wasn’t quite what we expected. She mentioned birth marks and minor abnormalities. She even equated her daughter being a red head as being one of these “expectations” being blown away (I sat with eyebrows raised, knowing that my little girl might have no left eye, and she was saying we should prepare ourselves for the possibility of a red-head, like it was an abnormality and one serious enough to worry about!)

After the indignation subsided I remember feeling almost smug, like I had already come to terms with the unexpected in my daughter. Like I knew the worst that was to come and had dealt with it. I wasn’t going to be surprised when I met my daughter.

It goes without saying that I had a lot more to come to terms with.

I know that if someone had responded to my, “as long as it’s healthy” with, “but what if she isn’t?” I would have automatically responded, “of course, I’ll love her.” But I don’t think I would have really thought about what that meant. While it might be a good exercise for soon to be parents, I don’t think you can really play that kind of mental experiment with yourself and come up with an honest answer. You really can’t know until you are in that situation. And why take that hope and excitement away when for most parents it will never have to be questioned.

Now, while I feel so much happier and more comfortable with who the Peanut is, and who I am becoming, I can still appreciate a sense of loss for what I had expected. Not just for who the Peanut would be, but for what kind of Mum I would be, and the life I thought I would have. I’m ok with life, and I’ve come to accept the path I’m on, but it’s tempting sometimes to try and see down the other path. See what might have been if your expectations had been correct. If “as long as it’s healthy” was just a turn of phrase to be forgotten once you brought your baby home.

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Wordless Wednesday

 

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Rocking the patch

The Peanut sporting one of her new fashion eye patches. And me with a long awaited haircut and colour. We are both feeling very good.

The Peanut sporting one of her new fashion eye patches. And me with a long awaited haircut and colour. We are both feeling very good.

In time to step out with her newly coiffed mother, the Peanut’s eye patches arrived. We’ve only tried the leopard print so far, but I’m already a fan.

Cute. And a chance to accessorize. If babies with no hair can justify wearing hair clips and head bands, this little pirate can rock an eye patch.

She’s looking more put together than her mother, who realised she had not plucked her eyebrows in more than 6 months. Thank goodness the new haircut came with an eye-brow covering fringe (bangs to you North American folk).

As you can see, we like stripes.

The tug of expectations

Today is a good day. A great day, even.

Today we had the Peanut’s Visiting Neuro Developmental Therapist (VNDT) over to see us. She has been over the last two weeks but the Peanut has chosen that exact day and time to nap the morning away. She is normally a very speedy napper, but for the last two weeks has slept for more than two hours during our VNDT’s visit.

But today she was awake, fed and ready to show off her skills. I had tried to tell the VNDT last week that the Peanut has been rolling onto her side on both sides. She heard me but I don’t think she believed me. Maybe some parents see a smile, and presuppose a clever thought. See a twitch and call it a roll.

I so wanted to be able to show her how far the Peanut has come since we got out of hospital. I needed someone else to see it and validate her progress.

Her VNDT didn’t hide her enthusiasm when the Peanut rolled onto either side using her head as a guide, rather than letting her head turn last. She put her into the tummy position and the Peanut obliged and lifted her head up, not far, but more than she has in the past.

I got the Peanut to lie on my chest face down as I leaned back on the coach, and like she has been doing all week, the Peanut lifted her head and looked at me. There was none of the head to shoulder thumping she used to do, none of the rearing back uncontrollably and having to be caught by me. She was lifting her head, very intentionally and with control. When she got tired she started to tilt to one side, but for an extended period of time, she was holding her head up. Her VNDT was thrilled and confirmed what I had been thinking all week. The Peanut is making really great progress.

The Peanut practicing her head control. Two weeks ago she couldn't do this. Even a week ago, she would thunk her head repeatedly on my shoulder instead of holding it still.

The Peanut practicing her head control. Two weeks ago she couldn’t do this. Even a week ago, she would thunk her head repeatedly on my shoulder instead of holding it still.

Then her VNDT put the Peanut on her back and then on her side and put some wind chimes in front of the Peanut’s hands. Tentatively, the Peanut reached out and grabbed at the cold metal, clinking them together to create music. I’m not so naive to think the Peanut knew she was making music, or that she understood what she was doing, but just seeing her reaching, batting and playing was amazing. Seeing her trying to interact with the world around her made me light up inside.

wind chimes

I felt a smile creep across my face and just felt this warm wave of pride coarse through me. I am so proud of this little girl. She has spent a month in hospital, but since she got out she has made so much progress. She gets poked and prodded, injected and scanned, and yet she still likes to be touched, still enjoys contact and play.

I couldn’t have felt any happier in that moment than if she had sat up and crawled across the room. I silently thanked myself for making the decision to take her back and knew again that there was never any other way for us to have gone forward. It doesn’t matter if she learns to talk, or walk, or even crawl. This little Peanut is trying her hardest. And I will be there when each and every milestone is accomplished. No matter how many or few there are.

I was talking to a friend, Maggie, at her blog Yo Soy La Lay. Maggie had written a post on Unintentional Ableism where she mused on her daughter Tessa’s potential and abilities and the difficulty of having to drop certain expectations but also wanting the absolute best within the realm of possibilities open to her daughter. Tessa has down syndrome, and is about one of the cutest little critters I have ever laid eyes on. Her mother Maggie, is fantastic at accepting Tessa for who she is and who she will become, and wonders about where her daughter’s future lies. Like her, I feel this tug between having no expectations and having low expectations caused by not knowing where your child will end up. What your expectations should be.

I feel this acutely. Since I have accepted that the Peanut is not going to live the same kind of life as me I have felt so much freer and happier. I have dropped and let go of a lot of my expectations of what I thought she would be like, or what she would be able to do. But that’s not to say I have low expectations. I expect her to try hard and do her best and be the best she can be, whatever that is. And I expect that I will be there by her side helping her try.

Accepting she may not go to university, or may not even learn to walk, doesn’t mean I’m putting any less value on the things she can learn to do. Watching her interact with the wind chimes and seeing her reach out to take part in the world around her just reinforced that for me. I will celebrate and enjoy everything that the Peanut is. And let her decide what is expected.

When are you an adult?

When do you feel like an adult?

I’ve always considered myself a late bloomer. My first kiss was at 16, where lots of my friends crossed that threshold at 12. I’ve been undecided on my adulthood and leap frogged around careers and gone from writer to public relations to teaching in the space of 10 years.

Having a baby should really be a pretty good signal that you’ve reached adulthood, but somehow, sometimes I still don’t feel like it.

Taking out life insurance. That was the moment. Sitting at dinner with my sister and her partner (who works in a bank and knows the insurance game in and out) and my house mates, who have their own 10 month old to think about, the topic of life insurance came up. We all realised none of us had it, and I could tell we were all going through the same mental calculations.

Who would take our babies if something happened to us? How would they be supported? What happens if I get sick?

Now, two days later, I am waiting for a quote to get the ball rolling. And there’s no denying it. When you take out life insurance, you are an adult.

Then again, I followed that activity up with a bit of dancing round the lounge, Peanut in tow, to Taylor Swift’s “Shake it off”. So who knows.

Ignoring the whirring of the blades

I remember hearing about parents who didn’t have a break from their baby until they were many months old. They didn’t trust a baby sitter, or their baby was a bad sleeper, or they were exclusively breast fed, or the parents just weren’t ready. I thought to myself, bugger that.

I told myself when I had a baby I would make time for myself. I would get a good babysitter and be happy leaving my baby with other people. I didn’t imagine that when I left for a night out it would feel like a struggle. That even when your baby is away from you they are occupying a part of your brain.

My Peanut is not a typical baby. To take care of her, even for an afternoon, you need to be taught how to feed her which means learning to use her feeding pump, and learning how to aspirate her NG tube to ensure it’s in the right place. You need to learn a list of touch cues like what to do before picking her up, and how to introduce yourself to her. You need to give her medicine multiple times a day through her NG tube and once or twice a day clean out her left eye and put ointment on it. These tasks are not difficult, but they do need to be taught.

Like every baby, the Peanut also has a list of requirements that apply just to her. How to hold her when she’s upset. What stroke makes her smile, and which one makes her giggle. The technique to stop her startling when you put her in the bath. The best way to get her to sleep. I have learnt these things over time with her and I am getting to know her cues well. I realise now it’s these things the parents are thinking of when they are reluctant to leave their baby with someone else. Will they be able to figure out how to get her to nap during the day? Will they be able to tell that her squawk that looks like talking is actually a big sign she’s getting tired?

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We’re getting pretty tight, the Peanut and me.

I think breaks from parenting are so important. For any parent. But for me, they feel like an absolute must. So while dropping the Peanut off today with one of the many people who love her I felt a twang, but I tried to ignore it. That elastic band between us has gotten thicker since she has been back with me. Our month together, in and out of hospital has made that band stronger, less brittle. So when it stretches I feel it in my chest. It aches.

Before she was back with me I was more accustomed to saying goodbye to her. I got used to it in her first six weeks which she spent in the hospital where I had to leave each night. We hardly knew each other, so I wasn’t the expert on her, the nurses were. Then she was with me, but I knew it might not be for long, so while I got to know some of her cues I also knew that knowledge was new to me and would be learnt by her foster mother quickly. Then the visits while she was in foster care. They were hard. So hard. Harder in fact because I knew at that point there was someone else who knew the Peanut better than I did. Instead of giving advice, I had to smile and nod as I was told how to soothe my daughter. This time she’s my little girl and I am definitely the one who knows her best. This time I know she knows who I am. She can tell when it’s me holding her, and for the first time I’m worried about whether she realises I’m not there and if she feels bad about that.

I have spent my day off taking two luxurious naps and eating. That’s it. Tonight I will watch a movie and know that when I go to bed after 10pm I am going to sleep without being woken by my alarm telling me to feed the Peanut, or by the Peanut herself, crying.  I will feel better for this sleep. When the Peanut comes back tomorrow evening I will be refreshed. I won’t have done anything exciting, but I will feel brighter and fresher. I will have thought about the Peanut off and on every hour I have been awake. Worried occasionally, but trusting that if there were any issues I would be contacted.

In order to be her mum and do a good job, I need for other people to know the Peanut as well as me and feel confident taking care of her. I need to know when I drop her off that she is getting the same level of care as me. But to do that, I need to give up control and give people the chance to know her as well as I do. She requires a level of care above and beyond most babies, but it’s not impossible to learn. It just takes time.

I can’t be the only one who can take care of her. This is going to be a long and bumpy road, and I need to have other people on it with me.

So I will put up with the stretched taut band around my chest, knowing that both the Peanut and I will benefit from there being multiple people who can care for her confidently. She is a lucky girl in that she has many people who love her and want to care for her. She has extended family on both sides lining up to look after her.

I’m ignoring the helicopter mum tendencies which are hard to resist with a special kid, talking and going about my day as if I can’t hear the whirring of the blades all the time, and promising myself that the next weekend I get off I’ll make more of a plan. I’ll organise more than just naps to take my mind off the absence and enjoy my time off. I’ll see my friends and drink a beer, maybe go shopping (window shopping that is) knowing that the Peanut is well taken care of, and thanks to her family, so am I.

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One thing at a time

Twelve days and counting! We’ve been hospital free for 12 days, with the Peanut’s health getting better each day.

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The Peanut enjoying a new toy and showing of her ability to put things in her mouth.

For the first couple of days she still seemed unsettled and cried in the breathless way that makes me panicky to calm her down. In my head an imaginary oxygen saturation machine is guessing at numbers as she gasps and I try to jiggle her into serenity.

But for a whole week now she has been back to her normal self. She is smiling, and talking and rolling on her side. She is crying only occasionally and when she does it’s her normal cry, not a breathy, gaspy cry that is alarming to everyone.

I have finally got back to my own room without having to worry about every squeak and murmur through the monitor.

She is still insistent on waking pretty early, but I am working on training her out of that. And she is still a big fan of pulling her NG tube out. Since that first go I have done it half a dozen more times and each time I get quicker and less hesitant.

The days are getting warmer, and I can only hope that as the weather improves, the Peanut will be less likely to catch another bug. Bring on a long hot summer (I laugh a little as I write this, being in the windy capital of New Zealand).

It is going to be a busy few months. Next week the Peanut will go under general anaesthetic for an MRI and CT Scan. They want to look closely at her ears, specifically her hearing nerves, to see if cochlear implants have a chance of working. They will also use the opportunity to have another look at her eyes and maybe finally settle the question of whether it’s hemangioma vs cyst in her left eye.

In the next few weeks she’s due to have a PH study done which will look at when and how much she is refluxing. The doctors putting in her mickey button (which will replace her NG tube) will want to do this before she has her operation to know if they should be tightening the top of her stomach to help the reflux at the same time.

Then in late November we have her cochlear assessment in Christchurch.

Thankfully the orthopaedic surgeon has said that although her left hip does seem to be dislocated, they won’t do anything about it until she is one. So at least that’s one less thing to worry about before Christmas.

I am due to go back to work in the new year, and while it’s stressful for the Peanut and me to have so much on now, I think it will be good to get some of the major things out of the way before I am back at work.

I try avoid listing off the specialists she is seeing and the surgeries she will have in one go, because it seems overwhelming, but let’s give it a go.

  • Opthalmology
  • Cardiology
  • Audiology
  • Two different ENT doctors – ears and nose
  • Paediatrician
  • Home care nurse
  • Speech language therapist
  • Physio
  • Advisor for deaf children
  • Neurology
  • Orthopaedics
  • Gastroenterology
  • Genetics

 

  • Heart surgery (before she is 4 or 5)
  • Hip surgery (around 1 year)
  • Surgery to put in the mickey button and tighten her stomach (before the end of the year)
  • Cochlear implant surgery (hopefully before February next year)
  • Eye surgery to sort out her left eye and fit a conformer

Thankfully I’m a highly organised person and have always kept a diary for appointments and meetings. So this level of scheduling, while in a new arena, isn’t totally foreign for me. As the months pass this list will get shorter, and I am excited about the prospect of getting rid of some of those doctors completely. But in the mean time if I just look at what comes next and figure that out first it is much more manageable.

The immediate goals, getting the Peanut’s face tape free and having clear images of her brain, ears and eyes for the doctors to get more conclusive ideas. That’s enough for now!

And in the mean time I am seriously enjoying having this little legume at home.

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She comes from a long line of pirates

The Peanut has doctors confused on a number of levels. A key disagreement is between Plastics and Opthalmology over her left eye.

The Plastics doctors think it’s a hemangioma (a kind of birth mark) and the Opthalmologists think it’s a cyst. Both doctors know what the other thinks, but neither are prepared to concede and admit defeat.

Each condition requires a different form of treatment, but as the Peanut will have no vision out of her left eye either way, there is no rush to attempt to solve the issue. The hope is that eventually she will have a prosthetic eye there, but before that can happen they will need to reduce the swelling in the area.

Since she was born the swelling has gotten bigger and then stabilised. It’s hard to assess if it’s bigger day to day.

When I look at the Peanut I don’t even see it anymore. I see her. Her smile. Her face animated in whatever mood takes her. But I know for strangers it’s the first thing they see. That and the NG tube taped down to her cheek. As mentioned in earlier posts, I have always been hyper aware of sideways glances and other people’s moods and dynamics. When we are out in public I can see people do a double take when they see the Peanut. I can feel them watching her, so I too watch her and refuse to look up and catch them out. Part of that is that I understand why they are looking at her and don’t want them to hastily look away when I catch them, as if there is something wrong with looking at her.

When little kids see the Peanut they will stop and take her in. I see a curious look cross their faces and they immediately ask, “what’s wrong with her eye?” I don’t mind explaining it to a child, although I am yet to figure out a concise and simple way to do so. Kids are curious, and you can see there is no bad feeling behind the question, they just want to know. Then there are the adults who ask. Lining up waiting for the bank to open the other day a woman looked over my shoulder at the Peanut.

“Oh dear, what’s wrong with her eye?” I looked up from where I was crouched next to her carryer.

“She has CHARGE Syndrome, that’s a birthmark,” I said thinking that might be enough.

“What’s CHARGE Syndrome? It looks like it hurts.”

My instinct is to tell them to Google it. But I don’t. I briefly say it’s a complex chromosomal disorder. When they look at me confused, which is the typical response, I refer to Downs Syndrome (even though they are very different), because that is something most people have heard of.

I don’t mind explaining the Peanut’s health issues and what CHARGE Syndrome is to people who know us. I will happily explain what the NG tube does and show how sensitive she is to touch. But I am getting tired already of having to explain her very complex medical history with absolute strangers. I probably should feel like it’s a chance to educate people, but I don’t. I don’t want every social outing we go on to be about educating the public. The Peanut is a baby girl, not a tool for social change.

Even some nurses have commented on her eye in a way that rubs me up the wrong way. One nurse when starting her shift just outright asked, “what’s wrong with her eye?” I should have said, “it’s in her notes. Read them.” But I’m too polite.

So I’ve bought the Peanut some eye patches. The patches are from a great website called Patch Pals and are designed for children and babies who have lazy eyes, amblyopia or strabismus, and for after eye surgeries. I’ve bought a couple and figure I can use the design to make (or enlist the help of my more talented sisters) more with different materials.

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Patch Pals eye patches for kiddos.

I feel slightly conflicted about this, as if I’m embarrassed of the Peanut and want to hide her. I remind myself of the other positives, like keeping her eye moist as it tends to dry out and cause infections, but really it comes down to me wanting to go out with my gorgeous daughter and not have to answer questions or feel people’s stares and wonder what is going through their heads. I realise within the special needs community I may be pulling some kind of major faux pas. Maybe I am supposed to be a proud advocate of special needs 24 hours a day? I don’t know. I’m new to this. I’m not ready for that yet. I want to be able to go out and just feel like any old mum and her baby running an errand.

I know a baby with an eyepatch may draw some attention as well. But at least we have control of that. We can match her eye patch to her outfit. Fashion patches. I can come up with a quick retort when people ask why she’s wearing an eye patch. “She’s bringing them back into fashion.” Or. “She comes from a long line of pirates.”

When she does get her conformer fitted for her eye in preparation for her prosthetic it will be more medically necessary, but in the meantime we can rock the eye patch for purely cosmetic reasons.

At home she can just be the Peanut. No frills. No patches. And when we go out I’m going to try not to feel guilty for covering a little bit of her up.

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Not the way you figured

“Life’s not gonna go the way you figured.”

I’m 31 years old and I feel pretty priviledged to only just be figuring this one out. I heard this gem while watching Third Watch, a 90s emergency services drama featuring ridiculously good looking New York firemen, cops and paramedics.

During the episode the characters sat and talked about the moment when this had dawned on them. That life wasn’t a story written for them. That it wouldn’t always go the way you had imagined. That you weren’t necessarily the protagonist.

I have had sad and hard things happen in my life. Break ups. Family issues. Grandparents dying. Friends in car accidents. While these events were all hard, when they were over and the grief process had been worked through I was still me, and my life was relatively similar to how it had been before the event. My options for the future were unchanged and while it might have taken a while to work through the emotions attached, I knew that my life could still be the way I envisioned it.

I didn’t expect a 90s TV show to give me pause to reflect, but hearing the character say this made me realise everyone does have that point. Some people will go through most of their life without realizing this, and others will be unlucky enough to discover it at an age where they should be innocent to the realities of the world.

I have led a fairly sheltered life. I have a loving family. I have never wanted for anything and have had food, a warm home, a good education and a future full of possibilities open to me. I have fantastic friends and have had some great relationships.

But at 30, my eyes were opened and I discovered that while we make our own choices and can plan as much as we like, life has a way of turning our best laid plans on their head. Life doesn’t care about your career goals or plans to have however many kids. Things happen. People get sick. People die. And while we can plan, we can’t control everything. Anyone who thinks they can is in for a rude awakening.

It’s not that I thought I could control my life. It’s just that I never thought that certain things wouldn’t eventuate for me. I thought I would get married and have a couple of kids. I imagined having a long career in either writing or teaching, and maybe writing a book one day. I saw myself living to an old age, and when I pictured that I saw my friends and family living alongside me.

I didn’t picture being a solo mum with a special needs child. I didn’t picture hospital stays and operations and a realization that my daughter’s life would not follow the same path as mine. I certainly didn’t imagine that if I did write a book, my daughter would be the inspiration.

But I’ve realized we can’t ever expect that ideal life. There is no ideal. We can’t expect anything. I say this not in defeat, but in acceptance. In the last few months I have seen a few good friends get worrying medical news that could change the course of their lives. I have watched other friends go through emotionally crippling divorce and still others have their parents die too soon from cancer. Adulthood is hard. And at a certain point, just like the Third Watch characters, we realise that life isn’t a story written for us.

Then I see the blissfully unaware who have managed to scrape through so far unscathed. While it’s easy to think they are the lucky ones, I’ve come to realise everyone has their tough times. No one is untouchable. Some are just able to get through more years before they figure it out.

I consider myself to be one of the lucky ones. I know life’s not done with me yet. I’ve got through one hurdle but there will be others. Some will be related to the Peanut, but many will not. But having experienced this jolt in my best laid plans I feel like I am more prepared to appreciate what I’ve got. It sounds cliché’d but I feel like I can find more joy in the little things.

I always thought that seemed like a misnomer. I thought that the people who said they could appreciate the little things did so because they didn’t have the excitement of the big things. They made themselves feel better by finding enjoyment in the little things. They had to. Otherwise life would be miserable.

But I was wrong.

Since the Peanut has been back with me I find myself looking at the world differently. I see a beautiful view and just feel awestruck. I watch the Peanut smile and feel a warmth and happiness I haven’t experienced before. It’s not that I see that view or that smile and think, “this is as good as it gets, I better enjoy it”, it’s that suddenly those things are not small things anymore. There are no small things.

The stunning view I see each day.

Life is not about waiting for the big things to happen. We don’t know how our lives are going to pan out and only the most fortunate will win the lottery and never have tragedy or grief befall them. I don’t think that’s even possible unless you live your life without loving anyone or anything.

I know these revelations are not new or revolutionary. Countless people must have had the same realizations that I’m having after life changing events. I guess what I’m feeling most fortunate about is that instead of feeling bitter that life isn’t what I thought it would be, I just feel thankful for what it is.

I may not have the picture I imagined in my head growing up, but I have a lot. And I’m lucky.

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