Last week something happened for the first time: A doctor spoke about Lyra as an adult. Given, what he said was, “Even as adult, I don’t anticipate kidney failure being something we have to worry about.” But that is the first time a doctor has made any mention of Lyra’s life in the distant future. Heck, no one has even mentioned what we might need to prepare ourselves for once Lyra hits puberty. Mark and I don’t even think that far into the future. I guess it’s a really different way to keep us living in the present. The furthest out we plan anything is a year, all plane tickets are purchased with travel insurance, and we have learned the hard way to pay extra for guaranteed refunds on hotels.

So I guess this is why all of her birthday’s are a big deal. We don’t take any of them for granted and we are grateful for each one we celebrate with her. Every year, for about a month leading up to her birthday, I become very contemplative. I think about how far we have come, and how each of her birthdays has been marked. I think about all the milestones we have achieved. I think about all of the moments joy we’ve had with her. And it makes me that much more thankful. For us (and I include my extended family in this), it’s not about the graduations or high scores. It’s about the moments on the couch when Lyra rests her head on your shoulder. It’s about hearing her laugh when you stub your toe. It’s about watching her eat dinner at the family table, and out eating some of her cousins.

So here’s to another year with Lyra, who turns 8 years old in less than a month. You’ve come so far.

This year, for Lyra’s birthday, we are raising funds to buy her classroom a light table (hopefully 2 light tables). These tables help kids like her better engage with their learning material. If you would like to contribute, here is a link her Amazon Gift List. Simply click on the dog to add to the gift card we will use to purchase the table.

One thing parents like me don’t talk about with those outside of our community is the cycles of grief we go through. This may sound odd to those not inside our community, but it’s very real and sometimes hits us like a truck. Today is one of those days for me.

While checking Facebook today, a memory came up from 12 years ago. It was a video I had taken at one of my niece’s swim meets. It was fun to watch her race again, and I forgot how much I enjoy simply watching those races. Then I started to do the math. My niece is now 19. That means she is 7 years old in the video…. the same age Lyra is now. And it made me so sad. I am grieving the fact that I will never cheer Lyra on as she competes. I will never be able to share my love of competitive swimming with her. She will never have her daddy coach her from side of the mat in Ju Jitsu. We will never watch a dance recital, or sit in a choir performance. She’ll never climb a tree, or the big rock behind the cabin at Pinecrest. She will probably never even see the cabin at Pinecrest lake, where I remember sitting and having lunch with my Grandmother. She will never look at a medieval castle and marvel and the strength is took to build it with the technology of the time. She will never stand in an ancient place of worship and wonder what prayers have been offered by people centuries ago. I will never send her up skiing with her uncle, or scuba diving with her aunt. I will never watch her drive away from home to start her own adventures and start a life of her own.

Her world is so small, and I wish it could be so much bigger. I wish she didn’t have to struggle so much to do basic things for herself. I wish there was more for her beyond therapies, school, doctors appointments, medical tests, and small outings. I know that I am saying “I” a lot, and that will seem selfish to many people. But this is my honest experience. I’m sad for her, not because of her. I want to share the magic of the world with her, but I can’t for reasons I don’t need to explain. I know she is happy, because she laughs and smiles most of the time. I know she loves me, because she wants nothing more than to snuggle with me on the couch. I know that she feels wonder every time we watch My Little Pony, or Sing 2 for the millionth time. I know she has a great quality of life, I just wish I could share more with her. But that isn’t what she wants, or needs. By the time I pick her up to go to her next therapy appointment in a few hours, I will be fine. I won’t be grieving anymore. But these cycles happen, and they are normal for parents like me.

My junior year in high school, a friend asked me “where is swimming ever going to get you in life?” I trained six days a weeks for 2-3 hours, 11 months a year. I was often tiered and sore, and I didn’t exactly have a lot of time to go to parties or get into the mischief that many 17 year olds do. While I had a list back then of all the things swimming added to my life, it dawned on me today that I have an additional set of skills that I had never recognized:

I can do hard things without losing site of the positives.

You see, every day at swim practice I was given a challenge. As a teenager, I had a particularly “creative” coach who enjoyed creating new workouts to push us to our limits and basically torture us. I learned quickly that there were two ways I could react: I could whine and complain, or I could smile and embrace the challenge. Many days, it was a fake smile, but I tried to be positive nevertheless. I learned to focus on the next step, and not let the bigger obstacle overwhelm me. I would focus on why we were doing that specific workout, and what I could gain from it. I would try to make positive comments to my team mates, because hearing those comments out loud helped me finish the next thing. That’s not to say I didn’t sometimes cry, or lose my temper, or have a bad day. No one can be “on” every day. But in general, I tried to face every workout with a positive attitude.

Now, to present day:

I have heard others comment many times that my life is hard. My life is very structured, I have a lot things I have to remember to do every day (that are above and beyond what other parents do), and forgetting/missing something can have life altering consequences for Lyra. I left my career, and I have to focus all of my energy on what Lyra needs to stay healthy and have the best quality of life possible. But, I always flinch when people tell me that my life is hard. I totally get that they are recognizing the work that I do, but I just don’t view my life like that. I have hard moments. I have hard days/weeks/months. But if I got bogged down in all of the things in my life that are so different, I would miss the positives. I wouldn’t hear the giggles when Lyra is doing something she knows she isn’t supposed to. I wouldn’t enjoy the brief cuddles that are her way of saying “I love you.” I wouldn’t recognize the joy she gets from swimming in the pool. And I wouldn’t see the peace she feels when picking my flowers in my garden.

Are parts of my life hard? Yes. I manage 20+ providers for Lyra, and have special meetings for her school. I rarely go a day without needing to send an email or make a phone call. Even on weekends. I have had to face the reality that I don’t know when I will lose her. I have watched her almost die. I have listened to doctor after doctor tell me that some part of her is abnormal/not working correctly….. and they have no idea what it means because they have never seen a case like hers before. I have cleaned up more puke and poop than I care to think about it. I can’t travel like I used to, and international travel is off the table. Some places simply aren’t safe to take her, even if I’d love to share them with her. I basically never sleep through the night. I can be awake anywhere from a few minutes to a few hours, depending on what she needs. And even at 7 years old, I have to frequently life and carry Lyra.

All of this is true, but I don’t view my life as “hard”. It’s different, and not what how I envisioned parenthood. If I let myself get overwhelmed everyday by the challenges, I would miss everything good about my life. And there is a lot of good. I view my life, and the life of my children, as being full of joy, laughter, and love. On days that I don’t want to smile, I try to do it anyways. When others are having a tough day, I try to say something positive, because I need to hear myself say it our loud. I have hard days and hard times. I cry and yell and think about how unfair things can be for her. But I don’t let those things become my life. Because there is a lot of good. There is a lot of positive. I can do hard things, and life can still be good.

Also, just like at swim practice, I don’t do it alone.

***LYRA IS NOT CURRENTLY IN THE HOSPITAL***

This week I was talking to a mom while her children took swimming lessons from my brother. Not an uncommon scene in the summer at Grandpa’s pool. We were talking about the school year that is about to start and how disorganized things are. General griping. She mentioned how grateful she was for the mask mandate in our district because in December 2019 one of her sons went into lung failure after contracting a virus. He spent 5 days in the hospital. Since then her son has been terrified to even go to the dentist because he is afraid they are going to put a tube down his throat (breathing tube). I nodded and said that I understood. And I do. I explained how Lyra struggles with many things due to trauma. Trauma inflicted to save her life, but trauma none the less. I explain her resistance to masks and her panic with face shields. Her anxiety at appointments and her tears with some situations. I mentioned Lyra has had many stays at the hospital.

The mom stopped and looked at me. She said, “We spent 5 days in the hospital and it shook my whole family. How do you handle every hospitalization?”

I didn’t really answer and we were quickly distracted by something one of our children did. *Snap out of the moment and into active mom mode*

But this question has been rattling in my head for a few days. How do we deal with it? How do we deal with the fact that hospital stays are simply a fact of our lives? I think the best way to describe it is that they are never easy, but we just come prepared. What do I mean by this? Let me give three examples:

1. Earlier this week Lyra’s eye swelled shut and we weren’t sure why. I ended up taking her to a local Children’s Hospital ER (not the main hospital) because I was confident she just needed some antibiotics. However, I took the time to grab a phone charger, snack, water bottle, kindle, ipad (for Lyra), bunny, and a pair of my sweat pants. Why? We might be in the ER for awhile, and on the off chance she was admitted, sweat pants are much more comfortable to sleep in.
2. In July 2020 Lyra went in to have a brain MRI and have the tubes in her ears checked. This is routine stuff for her, but does require putting her under anesthesia. The expectation was that she would be under for about an hour, then we would go home after Lyra wakes up. No biggie. What did I bring with me? All of the things listed for the ER visit plus a pillow, a full change of cloths, and a tooth brush. Why? Sometimes weird things happen when Lyra goes under anesthesia. Sure enough, we ended up in the hospital for 4 days. Why? Turns out Lyra had a UTI and decided to start having weird symptoms while coming out of anesthesia. Were the two events related? No. But weird things happen, so I come prepared.
3. When Lyra was under a year, and we were really in the thick of things, I took her to the ER because she couldn’t keep any fluids down. She needed an IV and I knew she was doing to be hospitalized. Upon arriving at the hospital I used my pillow and favorite blanket to prop her up in a wagon I found in the parking lot (they are all over the hospital). I then added the bag holding my trusty blow up bed, a small grocery bag of snacks, and a few of her toys. I then wheeled the wagon and my small suitcase (carry on size) into the ER. Upon getting into the room in the ER the nurse looked at my stuff and said “this is a little dramatic for an ER visit.” I informed her we were going to be admitted and she rolled her eyes. I didn’t get offended. She hadn’t had a chance to really look at Lyra’s chart. Later she helped me transport our stuff into the room we stayed in for the next 20ish days.

Where all of these events stressful? Yes… to varying degrees. But I also knew what to prepare for, because I’d been there before. Do I still get upset? Oh yes. I’m always sad when I arrive in one of the rooms on the 8th floor. I always set Lyra up in her bed and make sure she is safe. I get her IV pole set up on the correct side of the bed, and rearrange my chair so that I can sit with her easily and still see the TV. Then I take out my chargers and set them up in the locations that are easiest to access. I put my toiletries in the bathroom, and stack my cloths on the bench by the window. I set any snacks on the desk, then tuck any bags underneath so they aren’t taking up space in the small room. Typically I will send a text to a few family members to let them know what room I’m in, then I will call my husband with an update. He’s typically on his way in with more supplies and things I forgot. He hangs back and gets things set up at home for us to be gone. I normally shed a few tears while my back is to Lyra, because I never want to be there. But the hospital is part of my life. Part of her life. I know what to expect. And now, I come prepared.

So how do I handle each hospitalization? One at a time. I take a deep breath and settle in, because it’s what Lyra needs. Is it easy? No. Does it get easier, not totally. But I also don’t do it alone. My husband holds the household together and comes every day. My mom visits (typically with food so I actually eat) and sometimes even spends the night. My whole family plays different roles that keep the pieces of my life together while Lyra gets the care she needs. You just do it. You just deal with it (and that does include crying when you need to).

It’s been 13 months since our last hospital stay…. not that I’m counting.

These pictures are hard for me to post, but I am posting them because I think there is an important conversation to be had here. To be honest, I wasn’t going to ever let them see the internet….. where they will live….. probably forever, but then I remembered a conversation my husband and I had a few nights ago. And another thought I had a few months ago.

A few nights ago I mentioned to my husband that my family was considering doing some more family pictures around Christmas. I was excited to get pictures that included Ranen (our last photos were done just after Lyra’s first birthday), but I also was scared to get them. I told him that I looked at out last family photos and felt sad. Sad about me and how I looked. I didn’t want to be sad about the new ones. I knew that I would feel the same way looking like I do now. I told him that I didn’t want photos of who I am today. And my husband said, “but what if I do?”

A few months ago I was ordering photos to put on our walls and, while picking out a number of great ones on my husband and the kids, I realized there were none of me. I thought back to a beloved picture of my mom carrying me in a backpack, and I wondered “what if my children look back and they don’t have a single picture like that of me?” It would make me sad, and yet, I never keep pictures of myself.

I’ve never been confident about my looks, even as an athlete. On top of having a slow metabolism, I have struggled with anxiety, and I am a stress eater. While I was able to keep some of that in check while I remained active, having a medically fragile/high needs child has sent me spiraling. Between a lack of available time to exercise, stress, anxiety, trauma, and a genuine love for good food and cooking…… I don’t always make the best nutritional choices.

So, this is where I am.

I am trying to learn to not make value judgements about myself based on my weight and my eating (“I was bad today because I ate _________.” “I am not a good mom because I look so unhealthy.” etc). I don’t make those judgements about other people, and I’m not sure why I struggle so much to not make them about myself. I can see a large woman and think “wow, she looks beautiful”, but when I see a smiling photo of myself I feel embarrassed and think “this isn’t worth keeping.”

But if my photo isn’t worth keeping, then what am I teaching my children? And what if I don’t leave any of those memories behind for them, or for me? What am I teaching my nieces? If I talk to myself that way, how am I teaching other people to talk to me? And what if my husband wants those moments? And wants me present as I am now? Why am I the one rejecting who I am now? Why can’t I view myself as a good person now, and not wait to label myself as a “better” person once I lose some weight? Why not give myself some grace and recognize that I have a lot going on? That doesn’t mean that I can’t try to exercise or try to eat smaller portions. That doesn’t mean that I shouldn’t try to work on my mental health and my internal talk. But those things take time, and I shouldn’t delete who I am now, because a lot of people are happy to have who I am now, here.

So. Here I am now. Well…. earlier today.

Pictures taken with the kids separately because it’s impossible to get them both to hold still at the same time*

Lyra is turning in turning 5 in a week.  Every year her birthday makes me very reflective, and this year feels like a major milestone.  I think sometimes people are confused about why I make such a big deal out of Lyra’s birthday.  I mean, kids have birthdays.  They grow up, they move forward.  That is what happens.  Well, that is what happens for most people.  I think I can explain it best with a story:

It was March 2016.  Lyra was 10 months old.  We had spent 2 weeks in the hospital trying to get her to keep enough fluids down to be at home.  Finally, we got her there and went home thinking we had figured it out. About 24 hours later she had been re-admitted because of uncontrollable vomiting.  On an IV, with anti-nausea medication, and nothing going into her stomach, she was throwing up every 5-15 minutes.  Occasionally we would get an hour or two break.  This went on for 2-3 days and the doctors didn’t know what was wrong.  At one point I stood out in the hallway with the attending physician and one of the residents.  I said to them in a choked up voice,

“the hardest part about Lyra being the only known case to have both of her genetic disorders is the fact that no one can tell us how long we get to keep her.” 

Part of me had hoped that they would say something comforting.  But these were/are good doctors.  They weren’t going to lie to me.  Instead, they looked at their shoes and shuffled their feet a little.  We all stood there in awkward silence for a few moments, and I honestly don’t remember anything about the conversation after.  What I do remember is really realizing and accepting that every day/week/month/year that I get to keep her is important.

Eventually Lyra did get better.  Turned out she had caught a particularly nasty GI virus, and after two more weeks in the hospital we took her home again.  This wasn’t our last hospitalization.  We were back about 6 weeks for another stay.  That one we celebrated her first birthday in cafeteria at Children’s Hospital.  She was healthy enough to go downstairs in her wagon to see everyone.  She was back again 26 months after that for the longest and scariest stay yet.

While we have been lucky so far, we don’t know how long we get to keep her. So, every birthday is a big deal.  We try to make every birthday meaningful.  We celebrate her, and those who have helped make her life richer.  In 7 days Lyra turns 5 years old, and I am going to make a big deal out of it, because I got to keep her for one more year.

We always raise money for an organization for Lyra’s birthday. This year we are raising money for Children’s Hospital of Colorado.  Please click here if you would like to contribute in her name.

 

We have all seen the “I see you” articles written in the acknowledgement of the struggles someone else is going through.  The ones I have seen the most are parent-to-parent.  They mean a lot, but I still sometimes feel like I’m yelling into a void or am invisible to people who should recognize I need help.  I get tons of help and support from family and friends.  However, there are times I need help from professionals.  Finding those professionals has been nearly impossible, but today I felt seen.

Today I was at an appointment for Lyra and I was just chit chatting with the provider working with her. Somehow we got on the topic of support for parents (or lack there of). This woman got worked up and said, “THIS! THIS IS WHAT I AM TRYING TO GET THE SYSTEM TO UNDERSTAND!”  And then she said the one thing that showed me she really sees us:

“We give these parents a diagnosis for their child that alters their whole world and what that world will look like in the future.  Then we (the doctors/therapists/etc) just expect these parents to pick up and charge forward.  We give them no room to grieve the loss of the child that might have been.  We make them feel ashamed of that grief.  We don’t acknowledge the parents can love that child desperately, and absolutely step up to the plate, but also grieve the loss.”

Now, parents in my community talk about this with other parents.  We give each other permission to feel that grief, but it feels like the system doesn’t.  It doesn’t even want to believe that the grief and trauma exists.

I told this provider about my frustrations.  That I can get therapy for Lyra, but I have no way of getting it for me.  And when I have tried, the people in the mental health field I have spoken to seem to be completely unequipped to handle me.  You see, the system knows how to handle and counsel someone who has lost a child.  And the system knows how approach someone with PTSD after they have been removed from a situation and they are away from the trauma.  But for those of us who live in the middle? The system seems clueless.  You see, the events that have traumatized me aren’t necessarily in the past.  The most traumatic ones have a decent chance of happening again.  So my anxiety isn’t unfounded.  And my flashbacks could also be foresight. The system doesn’t know how to deal with that.  I have been told by mental health professionals to:

• “only focus on the positive things”  – if I could do that I wouldn’t have sought professional help
• “just be more grateful”
• “just let others do more of the work” – I have quite a bit of help and support, plus I still want to be her mom and take care of her
• “I bet your hormones are off”
• “You just need to take a multivitamin”
• “Go see this doctor, he will put you on drugs” – I am NOT against medication (I have taken it in the past with very beneficial results), but I also need other tools for coping.

There were other comments, but you get my point.

All this being said, I am okay most days.  Could I be better? Yes.  Do I think I would be better with help from a mental health professional?  Absolutely.  But I am lucky and have lots of support.  I have family and friends I can call.  I have family and friends who help.  And I know that I am not alone, even if it feels like that sometimes. And today, the system saw me.  Or at least, someone in the system did.  And that person is waving a red flag and shouting for us.  Because she knows that healthy parents make happy homes for kids who just need lots of love.  And us parents, love those kids more than we can truly express, even if we grieve for them sometimes.

 

One of those moms.

Oh how I hate that phrase.  But, you know what I am talking about.  The mom who is always calling to complain about why her child didn’t receive something.  That mom who is always asking for something, but not always willing to volunteer. The one who is always sending emails, requesting meetings, and ……. dare I say it…… asking to speak to your manager/supervisor/etc.  The mom who posts nasty things on social media and tags everyone they can think of.  They yell and make a scene in public places.  You know, those high maintenance demanding moms.

I hate those moms.

I hate that some days I have be one of those moms.

I know a lot of special needs parents get labeled as “one of those moms.” I can understand how, from the outside, we can seem short fused and unreasonable. To be honest, there are some that are short fused and unreasonable (just like in the general population of people).  However, many of us don’t want to play this roll.  We just feel like we haven’t been given another choice.

So why am I short fused and unreasonable?  I’m frustrated most of the time.  I spend more time making phone calls, sending emails, filling out paperwork, going to meetings, and scheduling things than I ever did as a working professional.  Now, I like to think of myself as a smart and capable person.  I have a master’s degree and have worked in a few jobs that require understanding complex material (like laws).  However, becoming a special needs parent and having to navigate a whole new system came with no training, no manual, and no one seems to know the answer to your questions.  It’s maddening.

Need access to a service?  Here fill out these 10 pages of paperwork and get letters from a few of your child’s doctors.  Once that is done, you will be denied on day 85 because you didn’t call this other office first to make sure your paperwork was processed by the right people.  Okay, after 5 days of phone calls the right people have the paperwork now, but there is an 11th page that was never given to you that needs to be signed.  Since it has been over 90 days since this process was started, you need to start from the beginning.

Could a certain type of therapy help your child?  Great!  Bring them to a 2 hour evaluation.  Listen to all of the short comings your child has (yes, I know, that is why they are here).  Then a scheduler will call you to book some appointments…..  You wait two weeks…..  Maybe the office is really busy….. Suddenly it’s been a month and you realize you still haven’t heard back.  Finally you start calling to try to book something, but the schedulers don’t have the right information from the evaluators.  You call back a week later to find out there aren’t any open appointments that fit into the times you have available. Suddenly a few months go by and they finally have a spot for you, but it’s been so long that now you have to do another evaluation.

The first two stories are not mine, but the next one is:

Lyra needs a new walker.  We have had to her old one for over 2 years and she has outgrown both the style and the size.  So, I did what any responsible parent would do and called my durable medical supply company (you can’t buy from the manufacturer or online).  I started this process around the beginning of June.  They couldn’t send out a sales person to meet with us until August.  When they said who they were sending, we will call her Nancy, I was hesitant.  You see, we have worked with Nancy before and last time she showed up without any materials (not even a brochure to show us sample walkers) and then forgot to order some of the parts needed.  However, I was desperate and I didn’t want to be a pain.  Plus, everyone has a bad day.  I was willing to give Nancy another chance.  Well, Nancy came to visit in August, and we really just weren’t sure what would be the best fit for Lyra.  We decided to wait until Lyra started working with her new physical therapist because the PT clinic had a bunch of walkers Lyra could trial.  Her first appointment was soon and Nancy told me she loved Lyra’s new PT and had worked with her for years.  The new PT would just need to send an email detailing what walker we decided on and Nancy would start the process.

So, the first week of September we meet with the new PT and we pick out a walker.  Lyra’s physical therapist sends an email to Nancy to which Nancy replies, “Mom (me) decided not to get a new walker, so I will wait for her to contact me and tell me differently.”  The physical therapist forwards me this email.  While I am upset that I have to take extra steps, I try to be understanding.  Maybe it’s a miscommunication? Maybe it’s a misunderstanding?  Those things happen.

I

will

be

patient

I reply to Nancy and keep the PT in the thread.  I explain that she must have misunderstood.  That we do want a walker, we just needed to pick out the right one.  We have picked it out! Please, Nancy, start the process of ordering this walker.  Nancy’s response……. nothing.  I wait two weeks and reach out again.  Still radio silence.  After another week has done by I start making phone calls.  At this point we are in October. I spend hours getting passed from person to person and leaving messages with no one calling me back.  I am furious.  I am frustrated.  I don’t have any other options to get this walker.  This is the only durable medical company that services my area. Finally I get ahold of the regional manager in charge of my area.  I am officially “Karen who needs to speak to your manager.”  I hate being Karen.

Luckily the regional manager was WONDERFUL.  She set me up with a new sales person and we finally got the ball rolling.  We are now in the first week of December and I am happy to report that I will be picking up Lyra’s new walker in a few days.  But this took six months.  It shouldn’t have taken six months.  It took appointments, emails, phone calls, and plenty of paperwork.  And this wasn’t the only project I have been working on for Lyra.  In fact, I now have a white board to help me track projects.

So, next time you see “one of those moms”, try to hear the whole story.  They might be more reasonable than you initially thought.

There are some topics in the special needs community that are very controversial.  While I tend to keep my opinions to myself on these topics, there are a few that I am okay talking about in a public forum.  One of them came up again today, and has been sitting with me.  Some people in my community get really upset when they hear a pregnant woman comment that they “just hope the baby is healthy.” That comment has never bothered me, and never will.

Why do some get so upset when they hear that comment?  Some assume that the person saying it would reject a child that is not healthy, or somehow love it less.  Sometimes the parent with the special needs child feels judged or pitied for the situation that they are in.  While there are other reasons I have come across, those are the two main ones.

Here is how I feel:  OF COURSE THEY WANT A HEALTHY CHILD!  WE ALL DO!

When someone says “I just hope the baby is healthy”, it is as simple at that.  They hope that it is healthy.  I hoped that my second child was healthy.  In no way did that mean I was rejecting Lyra for not being healthy.  In no way did it imply that I loved her any less, or that I would love the new baby less if he wasn’t healthy.  Heck, if I could wave a magic wand and make Lyra healthy, I would!  I wouldn’t do it because it would make my life easier, or because it would somehow make me love her more.  I would do it because it would make HER life easier.

Of course people want to have a healthy baby.  No one gets pregnant and thinks, “it would be really great if my child had to be in a hospital all of the time.  I just hope that they have complications that require emergency surgeries due to life threatening complications.  It would be amazing if I had to see the fear in their eyes when they are held down when someone places an IV.  They won’t understand that the IV will help make them better, but that’s okay.”  Or, “I would love to have a child who struggles to interact with their peers, and the world around them in general.  It would be really nice to have a child who can’t seem to find a way to tell me the simplest things they need.”  If they did think that, they shouldn’t be a parent.

……..

Really people?  Let’s be honest.  When we all were pregnant, we hoped the baby was healthy.  When they baby wasn’t, when we were thrust into this world, it didn’t change how we felt about that baby.  We didn’t love that baby any less.  We love that baby with everything we have.  We fight for them, celebrate them, cry for them, and care for them. We do this because they are our baby.  Do we STILL wish they were healthy?  Yes.  Life would be easier for them if they were.  In the end, don’t we all want that for our children?

So, if you are pregnant how, or become pregnant in the future, don’t be afraid to tell me that you “hope the baby is healthy.”  Also, don’t feel guilty for thinking it. I hope that your baby is healthy, too.

 

Those who have known me long enough know that I am a relatively private person.  In fact, I think many were surprised when I started to write this blog.  At first it was something very few people knew about, and over time I have slowly expanded my audience.  However, many of you have noted and commented that I have not really written in the last year.  To be honest, a number of big events have happened in the last year (including the birth of my son).  Some of those events have impacted my mental health, and while I have struggled with anxiety since I was a teenager, the last year has put me to the test.  When I do struggle with my anxiety, I tend to close my world to all but a few close friends and family.  While I fully intend to write at some point about my struggles with mental health as a special needs parent, that is not what this post is about.  This post is about how, despite everything I have been struggling with, I have learned the importance of expanding the world around myself and (more importantly) around Lyra.

As we near the one year anniversary of Lyra’s scare last year (please see my previous post), I often reflect at how far she has come.  Yes, I still deal with the trauma of that event, but it honestly isn’t where my mind goes first.  What I think about most is how big her world is has become.

You have to understand, when you have a medically complex/fragile child, your world is quite small the first three years.  All therapists came to us.  We rarely traveled outside of the state.  Oh, and forget things like daycare.  Her little body couldn’t handle exposure to all those people germs. Since Lyra is also very delayed physically, she couldn’t participate in any sort of toddler dance classes or gymnastics or anything.  We had this small little world of family, a few close friends, doctors/nurses, therapists, and a case manager to hold our hand.  When Lyra turned 3, that all changed.  She was no longer in early intervention and many of the services that help guide us were no longer there.  Getting access to many new services meant entering the public school system.  It was honestly terrifying.

Little did I know what was in store for her…. and me.  Because of Lyra’s health issues she started preschool a month late, in October.  I was terrified to leave my baby with people she didn’t know, hooked to her feeding pump, and exposed to 15 other children in her classroom.  She couldn’t communicate to them what she needed, if she was scared, if she was sad.  What happened over the next 7-8 months was nothing short of astounding.  Lyra went from almost never using her walker, to it being her primary mode of transportation.  She went from barely eating anything, to being interested in food and developing new oral skills.  Before she primarily ate yogurt, purees, and things that easily melted her mouth.  Now she eats cut up fruit and pieces of peanut butter and jelly sandwiches (she still eats only very small amounts and gets about 95% of her calories through her tube).  Most dramatic is her cognitive change regarding language/communication.  Before preschool it didn’t seem like Lyra understood the point of language.  She didn’t seem to have any motivation to learn how to communicate with us.  She was happy and easy going and didn’t seem to be interested in what objects were or in asking for things.  Now, she gets it!  She wants to communicate.  We still haven’t figured out how to do it, but we are working on it.

Lyra’s world has become so much bigger.  She has meant so many more people and developed skills at a rate we have not previously experienced. She has developed bonds with adults outside of our little circle, and they have bonded with her.  It makes me smile to see how much she has embraced.

I have also learned to embrace a bigger world.

What I have learned in the last year is that there are more people than you know who are ready to support you.  It can be a stranger holding your hand while you cry in a hall at the hospital in the middle of the night, to a mom in your child’s class who makes you feel like you’re just a normal mom too. Not only have I made new friends in the past year, but I have opened my life to old ones I haven’t spoken to in over a decade.  While I have spoken before about my willingness to let go of those who are unable to go on this journey with me, I have learned this past year that more people may be willing to walk with me than I had imagined. I simply had to open the door to give them the opportunity.

So, as we go along into this next year of Lyra’s life (how is she already 4?) I have to keep in mind what having a bigger world has done for her.  Even if it is scary for me, it’s better for her now.  And she can handle it…… And so can I.