Mom holding her baby in the NICU

5 Things That May Help You Process Your Baby's Premature Birth

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Unfortunately, I cannot offer you one magical exercise or activity that will help you process all that has happened to you in the last few months.  

A premature birth can be a life-altering event — something that can change the person you are and the dynamic of your family.  

No matter how long your baby was in the NICU (neonatal intensive care unit), you might feel a series of emotions. Each preemie parent will process their emotions in different ways. Some will take longer than others to process their baby’s premature birth. I’d like to offer some advice on how to help yourself heal and move forward.

Here are things you can do that might help you process your baby’s premature birth:  

1. Talk about it. It’s not a bad idea to see a therapist after your baby’s premature birth. In fact, if you lost a baby or your preemie was discharged with extensive medical needs, I think it is a must. But even if neither of those situations applies to you, talking will still help.

You don’t have to talk to a therapist. Heck, most of us preemie parents don’t have a lot of time between the doctor appointments and intervention schedules. I get that. But modern technology and social media can help you out with this, too.  

Facebook is host to several private online support groups for parents of premature babies as well as full-term babies born with other afflictions that caused them to have a long NICU stay. You just need to request to join the group, and then only other members of the same group can see your posts if it’s a closed group. You can ask questions! You would be surprised at how many responses you’ll get, and in my experience, most of the responses are helpful. Or, you can just sit back and read what others have asked and answered. You will likely find that several questions you want to ask have already been discussed. It will make you feel as if you are part of a community that understands you — because they do.  

Another great option for talking about your experiences is through a NICU support group at your hospital. Many hospitals offer them, but if yours doesn’t, you can join other online non-Facebook support groups such as The Morgan Leary Vaughan Fund, Preemie World, Graham’s Foundation, NICU Helping Hands, Hailey’s Hope Foundation or The Tiny Miracles Foundation.  

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

2. Write about it in a diary or journal. I started a journal on a sheet of paper a nurse gave me the night my daughter was born. Days past before I could meet my baby. From my hospital bed, with intravenous lines and bags of blood being pushed into my veins, all I could think about was the fact that my daughter might die before I ever saw her face or felt her touch. This is because my daughter was born at 23 weeks gestation at 1 pound and 4 ounces. Her name is Joy.

Each day in the NICU (for 121 days), I wrote about Joy’s progress (or lack thereof), her medications, her medical procedures and her growth. I also wrote about the emotions surrounding my high-risk and life-threatening pregnancy. I wrote about my feelings and emotions as I stared at her through the incubator because I could not hold her for one month. I wrote about my three small children at home and what we did together and how they were reacting to Joy’s premature birth and time in the NICU. I kept her “NICU journal” going for a long time after she was discharged. My NICU journal became my weapon against misunderstanding, as well as a tool to help me heal. It helped me keep track of her hospital stay (in my own words) and I got to release some of my emotions at the same time. Expressive writing can be used as a therapeutic tool.   

Please read my blog post for The Mighty titled “3 Reasons a Journal Is Essential for Parents of Preemies.”   

3. Blog about it. Blogging can be an easy way to express your feelings without having to say them in person to anyone. You can type away and no one will talk back to you. And you will not be interrupted! Blogging is also an easy way for you to share updates on your baby with family and friends without having to call or email 50 different people.

You can share weight gain, changes in medical interventions and any other information with just a few clicks. You don’t have to make your personal story known to the world unless you want to. If you want to keep your blog private, you can add people to a mailing list and they will get notifications when you create a new post. You can also block certain people. WordPress explains how to change the privacy settings on a blog post here.  

I started to blog about one year after my daughter was released from the NICU. That’s when I realized I had so many feelings and worries built up inside me, and I wanted (and needed) to get them out. I also believed that no preemie parent should be left to feel like they are alone. My thoughts were that even if one other parent felt what I did, then maybe my blog posts would validate their feelings and allow them to feel understood.  

You can read my personal blog by visiting http://www.micropreemie.net/blog.  

I’ve also written several blog posts for The Mighty, and you can view them here.    

4. Give back. Sometimes small gestures of donating your preemie’s old blankets or preemie-sized clothing to your NICU can help you process and heal. Some people will collect coloring books or other items to donate to the NICU so that visiting siblings have something to keep them occupied. Other parents are crafty and knit or sew items to give to NICU parents.  

My mother-in-law is an excellent quilter, and she and her group quilt isolette (incubator) sized blankets. I bring them to the NICU a few times a year. It’s one of my favorite things to do! The NICU nurses get so excited when I come with the bag of mini quilts, and they argue over who gets which designs based on their patients. I always feel great after I leave, like I’m paying it forward.  

5. Volunteer to be a preemie parent mentor. This might be best to do after your baby has been home for at least two years. There are several reasons to wait. First, parents of newly released preemies will be busy with various doctors’ appointments and interventions that they will not have enough time to commit. Second, the first year after a preemie is taken home from the NICU is a time where us parents need to keep their baby away from as many germs as possible. You would not want to leave your baby in a daycare center while you mentor, or bring your baby to the hospital either. And you wouldn’t want to bring any germs home from the hospital to your baby.

Besides time and germs, there is another reason why becoming a preemie parent mentor should wait two years. You, as a preemie parent yourself, need to be emotionally disconnected from the NICU so you can be a great listener and not the person who needs to talk. A seasoned preemie parent mentor knows what questions to ask and how to listen and only shares the minimum amount of their own story (at least at first) because the parent you are mentoring needs to be doing the talking — even if they’re talking about sports or what’s for dinner. Once relationships are established, this can and should change.

Becoming a preemie or NICU parent mentor might help you process what happened to you. It’s a wonderful thing to do, if you can. It’s not the right choice for every parent. But who better to understand a scared or grieving preemie parent than someone who has walked in his or her shoes?

What else can I add to this list?  

What helped you process your post-NICU experience and feel as if you have healed?  

By the way, my former 1 pound 23 week preemie is now 4.5 years old and amazing. While she still has some complications caused by her premature birth, she is thriving!

Mother and daughter outdoors

November is National Prematurity Awareness Month, and November 17 is World Prematurity Day!

How will you help spread awareness?  

To see our story and how you can help families with premature babies, view www.micropreemie.net.

We want to hear your story. Become a Mighty contributor here.

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Why I'm Thankful for My Fellow Preemie Mamas

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Having a preemie baby can change the way you look at life. It can change the methods by which you prioritize everything from household tasks and work to relationships with family and friends, as well as the focus you place on yourself.

Spending any amount of time in a NICU can make an impact on your heart. Parents of preemies learn fast that we need to be amazingly strong. And if there are times we don’t have the strength for ourselves, we also quickly realize how comforting it can be to be able to pick up the phone, send a text or an email, and reach out to someone who has been exactly where we are.

Some people will understand the change and the new person you’ve morphed into since becoming a preemie mom, while others won’t ever grasp the change, and that’s OK. Hang on tight to anyone who makes an effort to help you get through the NICU experience, and who wants to be there for you and your preemie(s).

I am so thankful to have two close friends who experienced a NICU journey similar to mine with premature twin boys. Almost three years later, I still reach out to them every few weeks for advice about minor medical-related issues that arise, advice on the different toddler stages and struggles, and even for reassurance when I feel like I am doing motherhood all wrong.

Here’s why I am thankful for my fellow preemie mamas:

We understand the complex emotions. It’s been two and half years since my twin boys were born premature at 28 weeks, and I still think to myself, “What did I do wrong? Why wasn’t my body strong enough to carry them longer?” I don’t think I will ever “get over” their premature birth; it’ll always stay with me. It’s comforting knowing other preemie moms can relate to the emotions I will likely always feel about their NICU days.

Some preemie moms also understand why I cringe when I hear my friends say they “can’t wait” to have their full-term baby, or when they do things to kickstart their labor. I am not trying to be judgmental. I am still experiencing sadness about my pregnancy that was cut short, and I really just want you to enjoy yours until baby says its time.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

We praise every milestone. In our eyes, our babies will always be worthy of praise, no matter how old they are.

We are each other’s best sounding boards. I am so grateful to know when I talk to fellow preemie moms, they don’t judge me. Instead, they understand my deepest emotions about everything related to my prematurity experience. I feel like I can tell another preemie mom (even a mom I just met) anything, and almost instantaneously they relate and know exactly how I am feeling. The premature baby and mommy community is a strong one, and it’s a great comfort to know there are others who are always willing to listen and be a friend.

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When You're Haunted by Memories of the NICU

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Neonatal intensive care unit post-traumatic stress disorder. NICU PTSD.

Has this been coined before? Has it already been given a shorter, fancier definition? Have eager therapists met the troubled gazes of their clients and breathed life into the acronyms: “I think you’re suffering from NICU PTSD.” Perhaps there is already some name for this thing that is as much a part of me as the blue of my eyes and the South in my voice. If there is, I haven’t heard it. But I know I struggle with it. Every day of my life, everywhere I look there are constant reminders of a life lived in a bubble. Those days when we were scared to breathe. Memories of when time stood still.

a mom and her preemie son in the nicu
Stephanie and her son in the NICU.

My son Avery spent 111 days in the NICU. He went from one pound and three ounces to five pounds, ten ounces the day he was released. From cocoon to butterfly. He struggled, and we struggled. I’ll spare you the details though, because honestly, this time, they don’t matter. What matters are the everyday reminders of those months. Of the time of his metamorphosis.

Sometimes I’ll be washing my hands and I’ll pause. I look down, and the sink becomes that deep basin just beyond the NICU doors. That hot water and antimicrobial soap that destroyed my hands within a week of using it 10-plus times per day. I almost cannot wash my hands away from home without tasting fragments of those memories — especially if the soap is antibacterial or the water is extra hot. Or if there is a line behind me, as there often was in the NICU when it opened back up following shift change. Soap and water. And memories.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

Certain alarms will still make my heart skip a beat as well. For so long, we relied on machines to tell us how our son was doing. His nurses, and we along with them, would jump at any sound indicating trouble. And there was trouble. He stopped breathing a few times. He turned blue and gray and lifeless. That screeching oxygen saturation alarm is ingrained in my memory. And for added traumatization, Avery came home on oxygen and with an oxygen alarm of his own. I still wake up from a dead sleep thinking it is going off. Something so necessary became something so scarring.

My son has scars. The one just under his left shoulder blade from when the surgeon placed a tiny clamp in his heart, correcting his patent ductus arteriosus (PDA). The tiny, twin incision marks on each side of his lower belly where his protruding inguinal hernias were repaired. He has numerous IV scars and a patch of saggy, stretched-out skin on his upper arm where a central line was placed. Oh, and his belly button. He doesn’t really have one. What he does have is a massive scar that resembles a burn. I see these marks every day. Each time I change him. When I bathe him and clean his little hands. In every moment of every day, my son bears scars. And because of this, I do, too.

Have you ever been scrolling through Facebook or Instagram and been struck motionless by an image? For some people it may be a political post of some sort. For others it may be a work of art or their favorite actor with the chiseled jawline. For me, it’s babies. It’s small, fragile babies in incubators with tubes everywhere — as mine was. It’s the rosy-cheeked, chubby-legged cherubs, too. Both a dream and a reality. My mind will never be washed of the images of the red, pencil-legged child who was born to me. So while my breath catches at those pictures, and for those families, it can also pang with jealousy. A picture is worth a thousand words, right? Not every time. Sometimes it can all be said in far fewer.

We are haunted by memories of the NICU. For those of us who live with these memories, it can be a curse. They’re a constant reminder of those traumatic days in the neonatal intensive care unit. But would I wish them away if I could? Probably not. I wouldn’t — because they are also a blessing. My son is almost 3 now, and he’s beautiful and smart and just so much trouble. I look at him and almost can’t picture him as the child of those memories. I know he was, because we lived that hell with every fiber of our beings. I’ve learned to take my days one breath at a time, especially the more difficult ones. I step back and give myself a chance to have my moment. Usually I’m snapped out of it quickly by a whiny toddler. By reality. So these days, I wear it like a badge of honor and take every chance I have to talk about it with other NICU mothers. I warn them this can happen and tell them how normal it is, how normal they are. And I listen to them. I earned this title. Post-NICU Neurotic Mom. This may be something I have to live with, but I can’t let it stall my happiness and leave me less than thankful.

After all, I do have so much to be thankful for.

Lead image via Thinkstock.

Follow this journey on 25 Weeks to Perfection.

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Dealing With the Sadness That Can Come After Your Baby’s Premature Birth

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A feeling of sadness can be a normal response to trauma, loss, or an unexpected event. It can also be experienced by the loss of expectation of what you thought something was going to be like.

For some parents, our birth stories were rewritten due to our baby being born prematurely. Instead of hearing our baby cry and having him or her placed on our chest to experience skin-on-skin contact, we watched as they were immediately whisked away to the NICU. What we expected to be a beautiful and glorious moment was overshadowed by fear, uncertainty, anxiety and so much more. 

People may say, “Well your baby made it and is fighting, so why are you sad?” This is such a complex answer, and unless one walks through the NICU experience, it may be hard to understand. Here are a few things to consider:

A man holding a baby born prematurely on his chest

The Birth Experience

My birth experience was very different than I had imagined. Once my premature labor began and could no longer be controlled, I went through 10 hours of painful contractions. My son Jaxson’s head was in position as my bag was bulging, and I was leaking amniotic fluid. At the tenth hour, the pain became unbearable and I was given an epidural. A few minutes after it was administered, he flipped into a breech position and started getting distressed. For the best chance of saving him, I was rushed down the hall to the operating room for an emergency C-section. This definitely was not my ideal plan. I did tell my OB to do whatever it took to save my son. I just didn’t know how quickly our condition would change and cause for an emergency intervention.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

NICU Life

I didn’t know too much about the NICU prior to my son being admitted there. I knew the basics, but experiencing it firsthand was something I could have never imagined I would go through. What I experienced was the constant struggle of “feeling like a mom” and being able to perform motherly duties. Jaxson was critical, and we weren’t able to hold him for 28 days. I felt robbed of being able to immediately bond with him and comfort him. I had to ask permission to touch my own son. 

My options were limited in regards to what I could do for him. My role as a parent was limited. I pumped around the clock, prayed and showed up every day to be by his bedside — sometimes just staring, other times assisting with his cares that took place every three hours. There were times I felt guilty and wished I could trade places. My heart hurt seeing him in his isolette with tubes and wires. For the first four months of his life, I could not rock him to sleep every night or see his face first thing in the morning.

Life After Giving Birth

I gave birth to Jaxson on a Saturday, and I was discharged on Wednesday. By far one of the hardest things I had to do was leave my baby at the hospital while I went home to recover. We didn’t get the opportunity to come home as a family right away. My heart hurt. I’d carried this precious baby, and I had to trust that he was being taken care of by someone else while I wasn’t there. To say this was hard is putting it lightly.

It would take 119 days before we were able to leave the hospital as a family of three. There were days I would leave the hospital and see a new father running to get the car while the mother of his child waited patiently in a wheelchair holding their new bundle of joy. The pain was indescribable.

A man holding a baby born prematurely on his chest, the baby wrapped in a white blanket with "Jaxson" written on it in various fonts

Home Sweet Home

We finally had the opportunity to bring our son home. Unfortunately, not all babies come home from the NICU. Adjusting to life after the NICU can be a unique experience. The baby may have endured many medical challenges, and some are often sent home with medical equipment. Jaxson was discharged with oxygen, a pulse ox and four medications. So our “home sweet home” definitely looked different than what we had imagined.

My sadness came in different waves; certain things could trigger it, like seeing a pregnant woman or if I came across a pregnant woman complaining about being pregnant for so long and wishing her baby would hurry up and come. With time, prayer and focusing on my baby and all of the goodness that did come with him helped me to change my perspective and really deal with what I felt. I combated the sadness head on and refused to wallow in it. I am grateful for what I have gained.

Things to Know

  • Sadness is such a tricky emotion and can look like so many different things. It can hit you out of nowhere and almost stop you in your tracks.
  • Everyone has a different experience, and each journey carries its own struggles.
  • There isn’t one way to feel sad. But allow yourself to express the emotion instead of holding onto it or neglecting it. Also, everyone’s feelings are valid, whether or not we can connect to them or relate. I just hope that at the end of the day, we extend compassion and grace to one another, for no one truly knows what it’s like to walk in the other person’s shoes.
  • Surrounding yourself with positive people with good intentions can help you. Healing does happen. It won’t happen overnight, and this may take time. Seeking professional help may be the answer.
  • Feeling sad doesn’t make you weak.

How do you cope with any overwhelming feelings you might experience?

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To the New Mom of a Baby in the NICU

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First, I want to tell you congratulations on your precious baby. This is not how anyone expects the whole “having a baby” thing to go. When we get pregnant for the first time, it does not occur to us that we might have a baby way too early. We don’t plan for it.

I would like to tell you so much, but for now, I want you to know a few things.

You are a wonderful mother. 
When my daughter was born at 26 weeks, I felt incredibly guilty. I had done everything in my power to keep her healthy and inside as long as possible, but even though I tried so desperately hard, she still came early. Just because your baby came early does not mean you did something wrong. You are a wonderful mother.

You are your baby’s advocate. Sometimes it will not be easy, but please remember to speak up if you are not comfortable with something. Ask the doctor or nurse to explain what is going on and why. Stay informed. If you feel like something is wrong with your baby, bring it up. This is your baby, and honestly, no one knows your baby better than you do.

It may be a long, difficult road. A lot of people describe the NICU as a rollercoaster because there are so many ups and downs. Celebrate the “ups” no matter how small they are. Find the “ups” whenever you can. When the “downs” come around, and they will, lean on your friends and family. You don’t always have to be strong. The best advice I received while my daughter Ellie was in the NICU was from my mom. It was the day I was discharged from the hospital. I was distraught about leaving Ellie and going home. I didn’t want to leave with empty arms. I just could not figure out how we were going to do it. How were we possibly going to get through the next several months with Ellie in the NICU? Here is what my mom said:  “We will get through this. One day at a time.”

Take a lot of pictures. There were days we were not allowed to take pictures of Ellie because they were afraid the flash and having her isolette uncovered would be too much for her. So, whenever we could, we made sure to take pictures. Take pictures the first time you get to hold her. Even if you have to insist on having someone right there with you to take the picture, have the picture taken. I almost did not get a picture of my first time holding Ellie because my first time holding her was skin to skin. They did not want anyone else in the little closed-off space I was in; they thought it should be a “private moment.” I will never regret having those pictures taken. I treasure those pictures. Take pictures of the first time your baby gets to wear clothes. Take pictures of your baby when she is wearing her mask for the bili lights. Take pictures of the tiny diapers she is wearing. Have pictures taken of you doing diaper changes and temperature checks. Have pictures taken of you just sitting by her isolette. I don’t believe you will ever look back and think you took too many pictures.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

Life will never be the same. Having a baby in the NICU will change you forever. There is not a day that goes by that I do not think about the advanced medical technology that helped save my 1-pound, 12-ounce baby girl. I think about all of the days I spent sitting by and staring at her completely covered isolette. She was so early and required so much oxygen assistance that the cover had to stay on. Those were hard days, but we did what was best for Ellie. I think about all of the tests she underwent, all of the heel pricks, brain scans, chest x-rays, intubations, hearing tests, eye exams, bradycardia episodes and so much more.  I think about and can still hear in my mind all of the beeping from the machines that were keeping her alive. I think about how terrified I was each time I left the hospital, afraid that it would be the last time I would get to see her alive. Above all, I think about how it was totally worth it all and how blessed we are to have our now, nearly 4-year-old, healthy and active little girl.

Find ways that make you feel like you are contributing. When my daughter was in the NICU, I felt as if she was not my own. I tried to do everything I possibly could to feel like I was contributing to her care. I lived for the diaper changes and temperature checks. When I was unable to have her isolette cover off, I would read her books with the cover on. There were days they told me not to talk because it would be too much stimulation, so I just sat there and silently prayed. When she finally hit the weight that she could wear clothes, I made sure I was there to pick out her clothes. I even wrote notes to different nurses that would come on duty later on to tell them a little bit about Ellie. We rarely had the same nurse, so it made me feel better to leave a note for the nurse who would be taking care of her while I was sleeping.

Having a baby in the NICU is not easy, but you will get through this — one day at a time.

Love,
Your friend and the mother of a NICU baby

Image via Thinkstock Images

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4 Reasons I'm Glad We Braved the NICU Reunion

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Not long after our son was discharged from the hospital after his short NICU stay, I received a little card in the mail inviting us to attend an annual NICU reunion. I didn’t give it too much thought in the middle of our busy life and quickly scribbled off a yes and slipped the RSVP back in the mail. I jotted a note on my calendar and didn’t think about it again.

Then over the course of the next few months, life with our son changed a little bit. We had reached a new point, and I felt like we had gotten past all of those “preemie problems.”

Except apparently we hadn’t. Feeding became a big issue, we started seeing some specialists we hadn’t even needed in the NICU, and it became apparent that a more medically involved path was going to be our reality. I felt like we were going backwards and the rest of the world was moving in an entirely different dimension than I was. Rare diseases and lifelong struggles were brandished around, discussed, discounted, and returned to.

We still don’t really know, but the point is the NICU reunion went from a fun way to show off what a perfect big boy my son has gotten to be to one more reason to visit the hospital. One more appointment. One more thing that reminded me our baby experience was anything other than “normal.”

The day arrived, and I literally crawled in my bed fully dressed almost in tears not knowing what to do. I had this feeling like I needed to go, like it was somehow an important thing to do, but I didn’t want to be in a big crowd of people. I didn’t want to spend more time at the hospital. We had been running for weeks, and I just wanted a break.

And then we went anyway, and I could not be more grateful we did. Here are four reasons I’m glad we braved the NICU reunion:

1. Validation. Sometimes I can hardly even believe the rough start my son had in life, how much he has gone through and how hard we have all worked to get where we are. As I walked down the table and picked up each of the beads that my son earned during his NICU stay, I felt a strange awareness of it. This was real, and we survived it. I need to hear that, particularly when I’m wondering at times if we will survive the new challenges we face.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

2. Camaraderie. In 13 years of parenting, I have never had as many dirty looks and comments about feeding my babies as I have in the time since I started bottle feeding my son. It seems everyone has an opinion or answer to solve our breastfeeding failures. And yet, I have come to see our breastfeeding story as one of success. We made it a long time battling some really complicated stuff. When people give me looks or make comments about my cart full of expensive hypoallergenic formula I am reminded our story is not deemed successful by traditional standards. But at the NICU reunion? No one cared. Babies were breastfed, babies were bottle fed, babies were tube fed, babies had central lines. Conversations continued around the feeding of babies in a variety of ways. We discussed follow up appointments, developmental milestones, and favorite specialists. No comparing, no judging. No one asked about his size or if he was (talking, walking, etc.) yet. Just understanding.

3. Memories. We did an art project, played with instruments, and more. It was kind of like a baby and me class  he’d never been able to go to before. Sometimes it is easy to leave out the fun stuff in the midst of all the hectic, but making good memories is important even during challenging times.

4. Hope. According to the first invitation we received, we will continue to receive a new invitation for each of the next five years. Looking around, I found myself humbled to be surrounded by a courtyard full of kids who had hard starts like my son. They were laughing, playing children just like any other. Even those who clearly have continued to have struggles. I needed to see that. I needed to know we are going to figure all of this out and that our son’s future is bright.

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