Vacations mean a change of pace, a gentleness with ourselves, a time of rest and renewal, and a time to stretch ourselves and encounter new people, new places, new ways and new options.
Anne Wilson Schaef
Few moments in life can completely change you. You personally. You as a wife and a mother. Your marriage. We had that moment when we got Lainey’s diagnosis. From the outside looking in, you might not see that change. But my heart is different. My head is different. My eyes are different. And the same is true for Zach.
Not only did we have Lainey’s diagnosis to process, Zach had some big changes at work happening that brought a lot of stress. Our personalities are different. How we deal with things is different. So when you add that all together in one pot, shit boils over. I think the 1 piece of advice I could give a couple before they get married is this: Make sure you are with someone who loves you when you are at your best, and will still love you when you’re at your worst. Because we saw each other at our worst. I always knew we would get through it. But most days I just didn’t know how.
Fast forward a year and a half later, and here we are. Rocking life together.
We got through it. And are stronger. We understand each other better. And can navigate our bumps a little easier. What we greatly needed after having:
– a baby with down syndrome – a 2 month stay in the NICU – starting a new business in the midst of a pandemic – financial worry – and realizing that for almost 2 years we hadn’t spent 1 night alone
was a VACATION!
(I don’t count the nights we had alone in Sioux Falls at our apartment while Lainey was in the NICU. There is no rest, relaxation, rejuvenation or romance.)
We are beyond blessed to have great friends in our little town. Oddly enough, we hardly see each other while at home! So when they asked if anyone wanted to join them on a vacation for their 10 year wedding anniversary we were IN.
I also love traveling with my Sis and BIL so you can’t be that!
We headed to the Dominican Republic. We stayed at the Hard Rock Resort in Punta Cana. We had the BEST time. It was the perfect mix of drinks, food, fun, craziness, rest, relaxation, romance and sleep. Because who when they are a parent of young kiddos doesn’t crave sleep.
If you and your spouse have had some rough months (and honestly, who hasn’t this past year!?!) Take a trip. It doesn’t have to be as big as traveling to the Dominican. Travel to a neighboring town and spend the night at the hotel. Go out to eat. Just be. It’s not going to solve all the problems. But as the saying goes “You can’t pour from an empty cup.”
I think we each personally have a cup that needs to be filled but so do marriages.
We are approaching the 1 year anniversary of bringing Lainey home from the NICU. We were there 2 months. Prior to our experience in the NICU, I knew nothing about it. Both Landry and Cohen’s pregnancies (despite me feeling sick) and births went by the book. We were home within 2 days of them being born and never skipped a beat.
I recently came across a mother’s post on Instagram that sounded very familiar. She too had older kids and had gone through it all. She thought she was a pro at having babies. Until her daughter came early and was taken to the NICU. I believe they were on day 10 when she wrote her post. And she was in shock. Shock to now be in a world she did not even know existed. It sounded like they would be there for some time yet and she was trying to get her bearings for the long haul.
It brought back many familiar thoughts and feelings. So I decided to write a little “Guide” on how to navigate the world of being a NICU parent. I am by no means an expert. Being there 2 months was certainly long enough. But many have been there longer. And while the first few days of Lainey’s life were scary, after she healed from her surgery we never had to worry if she was going to make it home.
If you have followed me since Lainey was born, you already know her story. But if you haven’t, here is a little background information:
She was born at 34 weeks.
We tried to stop my labor but she was ready to be here.
I was in Sioux Falls for an appointment with our new team of Dr.’s at Sanford. We had a prenatal Down Syndrome Diagnosis and made the decision to leave Avera (I love my Dr. and everyone at Avera) because we knew we would have a NICU stay and Lainey would need a major surgery at only a day or 2 old. We felt Sanford Children’s Hospital was the best fit. I made the appointment to meet the new team on a Wednesday for that following Monday. I thank God I made that appointment and was already in Sioux Falls at the Dr.’s on that Monday. Dr. checked me at my appointment and I was in early stages of labor. Divine intervention right there!
When we realized she was going to be this early, we had a whole list of new possible complications we needed to be aware of. I am happy to say she came out crying, was 5lbs, and never needed oxygen. She was always on room air with the exception of her surgeries and during recovery.
She had surgery at 2 days old for Duodenal Atresia Repair.
The first month in the NICU was all about healing from the surgery and getting her guts to work correctly. The 2nd month’s focus was on her feeds; trying to get her to bottle more and correctly and get stronger.
She never reached the 80% mark (80% of her feeds needed to be from the bottle. She only reached 40%) so she had a Gastrostomy Tube (g-tube) placed.
Sometimes you know you are going to be in the NICU and other times it is a surprise. Sometimes you are there for weeks or months, and other times it’s for a couple days. No matter what your situation may be, it is not something you can fully prepare for. However, here are some tips that I think might help.
**The following come from our experience. Not everything below will pertain to all babies and families. Not every NICU is set up the same or has the same rules or policies. We were also there before COVID hit.
1. It can be scary Even if your baby is only admitted for a day or two, it can be scary. There is an overall sense of seriousness in the NICU. Everyone is on their A game. Which was reassuring. But you know if you’re there, it’s for a reason. And it can feel scary. Seeing the wires, tubes and machines is very difficult. The first time your baby desats and the monitors go off, you will jump out of your chair faster than you’ve ever moved before. And it is scary. You might feel like it isn’t your baby laying there. You might even feel a sense of disconnect. If your baby was taken right after they were born, chances are you haven’t had much time to bond. I definitely felt like that. In fact, the first time I really felt a strong connection with Lainey was when we were snuggling right before they took her for her surgery. I had a lump in my throat watching them wheel her down the hallway.
2. Ask questions Don’t be afraid to ask questions. Unless you have a medical background, everything is foreign (at least it was to me). I wanted to know what was happening at all times. It helped me make sense of things and feel more in control. I highly recommend trying to be there during rounds. If we couldn’t, they called and informed us of any changes or concerns.
3. Leave the room/hospital This was hard for me at first. We slept in the room with her the first night I was released. She also had surgery that day and was still on the vent so the thought of leaving the hospital was not an option. But, I also did not get ANY sleep. If you are going to be in the NICU for awhile, you need to take care of yourself. That means getting sleep, eating well, and taking a break from the room and hospital. We took breaks and ventured down to the cafeteria. We would leave the hospital for meals. One afternoon I just needed a mental break. Not only from the NICU, but also from the new world of Down Syndrome we were now in. So I went to a few cute shops in town to take my mind off of everything.
4. Keep a daily journal Every day after rounds the Neo’s would write up “goals for today” and stick it on the cupboards in Lainey’s room. I am so glad they did this. It included what they discussed during rounds, anything that was going to occur that day (blood draw, etc) and our goals (mostly % of feeds wanting to be bottled). I kept all the papers. I plan on taking pictures of them and making it into a book. I did not take too many videos and wish I would have done that more. At the time I didn’t think I’d want to look back on the videos. But now I would love to just to see how far she has come.
5. What you will want in the room – Our NICU did not allow food. Our drinks needed to have a lid. They had an area in the waiting room for families to keep food. We did not really use this as we ate at our apartment, down in the cafeteria or left the hospital to eat. But many families did.
– Zach had a back pack we used to haul things back and forth. We always had a phone charger, ipad, ipad charger, notebook, books to read, lotion (your hands will be horribly dry after washing them so much), deodorant, (I’d recommend bringing extra travel size toiletries like a toothbrush, etc, if you want. Some days you are there all day and it was nice to have those things), Tylenol and Ibuprofen (for me after having baby), and any other necessities after having a baby (women you know what I mean). We had a blanket and pillow we kept on the couch. We also had slippers we kept there. It was more comfortable to be on the couch or rocking her with our slippers on rather than shoes or just socks. Heck, we even got so would just wear them down to the cafeteria. ha! Also, make sure to wear clothes that are comfortable. I wore a lot of leggings and sweaters.
6. The NICU does not follow the same policies as a typical hospital. So you have a friend or relative that is admitted to the hospital. You want to visit them. You go to the hospital, ask for their room #, and head up the elevator to their room. You enter their room and stay until you decide you want to leave.
Not in the NICU.
To enter the NICU you must check in at the front desk of the NICU area. You will be given a lanyard with your name and picture that you must wear. You cannot enter unless a parent has given permission for you to come in. Once you get buzzed through the locked doors you will have a 3 minute scrub (hands up to your elbows) you must do first. This is done anytime you leave the hospital and come back in.
There was a list of 4 people (people we picked) that could be in the room if Zach and I were not in there. I had several people say “If you need a break, I can stay and rock Lainey”. That was greatly appreciated, but unfortunately that cannot happen unless you are one of those 4 people. And that list cannot change.
Only 4 people can be in the room at a time. And they try to limit the amount of time guests stay.
7. Each baby had their own room. This is not how every NICU is set up. Some hospitals still share a room. I am grateful we did not need to do that! I cannot imagine being there 2 months and not having any personal space. I will also add that since families all had their own rooms, we did not get to know anybody who was also in the NICU. Everyone kept to themselves. In fact, you were not supposed to go into any other rooms.
8. They had a breast pump that stayed in the room. This was nice so I did not need to bring my personal one back and forth. They also gave me all the accessories I needed for the one at the hospital. Nursing was not possible for me with Lainey. 😦
9. Don’t be afraid to lean on the social workers We had a great social worker that routinely checked in on us. When we first got Lainey’s Down Syndrome Diagnosis, I needed to have answers for a lot of things; how Medicaid worked, receiving services, insurance questions, etc). And I thought I needed to figure out those answers myself. Having her to help guide me was a huge relief. That portion of it all is soooo stressful. If you don’t feel like you have someone like a social worker to rely on, request one!!
10. The NICU rollercoaster is a real thing Some days were easy, and some days were hard. Some days Lainey did great with her feeds, and then the next day it seemed like she took a huge step back. It could be exhausting and frustrating. The nurses told me “the NICU rollercoaster is a real thing”. When things go down, they always come back up.” It’s good to focus on the positives. Otherwise the negatives can eat you up. You WILL get home.
Being in the NICU opened my eyes to a whole new world I didn’t even know existed. I now look at neonatologist and NICU nurses completely different. They are angels on earth!!!!
I asked friends who had also been in the NICU if they had any “What I wish I knew before being in the NICU” comments. Here is what they said:
“The NICU will be the biggest and scariest roller coaster ride you will ever go on! However even in those scariest moments of your life you will come to realize that miracles also happen in NICUs. Also to take pictures of EVERYTHING for some day you or your child will want to look back at all the things that were in a NICU, as well as keep a journal!” – Jessica K.
I wish I knew… “What to expect to see when we first saw our girls. The cords were quite traumatic to see when you could hardly see your baby.” And “Things to do to stay “occupied.” I sat and watched our girls waiting for things to change so quickly. It was mentally exhausting when you just sit in their hospital room all day and/or night long.” – Lexi H.
“One of the top things I wish I knew going into the NICU was that for long-term stays you can request primary nurses. And if you do not see eye to eye with a particular person on your team speak up. It will make your stay that much easier. Another thing was that there are tons of programs in most hospitals that can help with your different needs while you are in the NICU, so if you are needing something please ask your nurse they can help you. Also if you have siblings of your new baby there are often times certain programs that certified counselors and therapists help with because it is definitely an adjustment for your other children to see their baby brother or sister hooked up to all sorts of things. So ask about resources for siblings.”
“Also note that it is incredibly hard to leave your family at home while you are in the facility. Do not disregard those feelings. They are true feelings and you are not alone in having them. Ask for help. Trade off with someone you trust and spend some time back at home as you can and as you feel comfortable. It is a relief for the siblings to have you back even for a day. And it can be very renewing for your own spirit as you head back to the hospital. I remember driving seven hours one-way back for a single day with my older children, turning around in bad December weather and heading back to Denver the next day. +14 hours or hard for my soul because it was so much thinking time but it was also good and renewing and my kids needed me and I needed my older kids as well.” – Justine K.
“I wish I would’ve known that it would be so difficult. We had quite a different experience than most, but surgical procedures and flights are just every day life in the NICU. I wish I could’ve been prepared for how truly hard it is. The exhaustion, mind racing, constantly questioning yourself hard parts. I also learned that you can ask for primary nurses to be with your child. Wish I would’ve known that before we came home.” – Taylor H.
“I had no idea how torn you’d feel about being away from your other kids but not wanting to leave the NICU. That was hard and I was only gone a short time!” – Emily B.
A couple weeks ago Cohen had his 4 year well check. It was quick and simple. He is healthy and it didn’t take the doctor long to give him a head to toe check. He ended up handling it well.
But when I first told him he had to go to the doctor he was upset. It’s not unusual for kids to dislike the doctor. I mean who really likes to go? Cohen asked if he was going to get another owie. I told him “yes”. He was going to get his flu shot but it would only sting for a second. Then he showed me the scar on his leg and said “No, like this owie.” Then memories of last year came flooding back.
Last October I noticed a few red dots scattered on his body. Nothing big. I figured it was an irritation of some sort and it wasn’t that big of a deal. But they lingered and he slowly got more and more.
Then Lainey was born. And mom was gone. All he knew was us being home together every day. And while he loves spending time with his grandmas and Cha Cha and Angie, that all of a sudden became his constant. And those spots…they blew up. He was covered in them. And they itched.
He went to several Doctor appointments. None of which I was at. They did allergy testing. They took 2 biopsies. One punch and one scrape. During that appointment I joined them on speaker phone. My heart broke as they took the biopsies and he screamed in the background for his mama. I needed to be with Lainey, but my boy needed me too. And I couldn’t be in two places at once. And while I knew I hadn’t actually done this, I felt like I abandoned him.
I love our family physician and trust him. At our first appointment he thought it was mono. In addition to the spots he was run down. I can immediately tell if my kids don’t feel well by their eyes. And he had droopy eyes. But every test they took came back negative.
Our doctor concluded that what we were seeing on his skin was Erythema Multiforme. But we didn’t know the cause. I understand doctors need to give you all the options. I appreciate that. I don’t want things sugar coated for me. I can handle the truth. But when he said it could be a reaction to anything from our laundry detergent, to a virus, all the way to lymphoma, my heart sank. No way this could be happening too.
Zach and I might have gone to Buffalo Wild Wings at `10am that morning and had a beer.
We never did end up figuring out the cause. But all 3 doctors concluded it was his reaction to a virus. Rather than a runny nose and scratchy throat, his skin reacted. And while I know none of them wanted to make me feel bad, the stress he was under made it worse. He never acted stressed. He had fun spending time with his grandmas and playing with his cousins. When they came to Sioux Falls we tried to have as good of a time as we could. But a – just 3 year old – can’t verbalize how they are feeling. I’m sure he felt like his world was turned upside down. And his body was showing us how he truly felt.
Kids are resilient right!?! “They can bounce back from anything. He won’t even remember when you were gone.” Well…he remembered when he got his owies a whole year ago. I found many articles that discuss the impact stress has on a child’s brain development. Some stresses are normal and good. All children need to learn how to deal with stress. It’s a part of growing up. Heck, all adults need to learn how to deal with stress. It’s life. But toxic stress can be harmful.
If you want to read a short but good little article from a reputable source about the affect of toxic stress on children, click the link below.
While our young kiddos can’t tell us how they are feeling, we need to be attentive to the other signs. These signs alone don’t necessarily mean your child is stressed. But seeing several of them could be indicative of some issues.
Fear of being alone
Excessive or unusual clinging
Hitting or scratching themselves when upset
Crying more often than usual
Regressing to wetting or soiling
Regressing to sucking their thumb
Change in eating patterns
Nightmares or odd sleep interruptions
Running into walls and furniture
Reluctance to meet new people or excessive shy behavior
We can’t think our little people are immune to big feelings just because they are little. We need to help them navigate their feelings just like we help them learn how to crawl and walk.
Our son Cohen turned 4. His current obsession…DINOSAURS. He loves everything about them. His cousins are at our house most of the week while my sister works and they play dinosaurs nonstop. We’ve had a mild November and December here in South Dakota and have been spoiled. They’ve continued to play outside without any snow on the ground.
But I know the snow will start to fly and cold temps will come at some point. And then playing outside will not be as easy. So I decided to make a dinosaur habitat for his room. I had a vision in my mind but wasn’t exactly sure how to make it. But, you never know until you try. So I gathered all the materials I thought I would need and with a little help from Zach to build the base, I fired up the glue gun and away I went.
The base is built out of MDF board. I measured the doorways to make sure we could get it from the garage to his room and also the space available in his room. Zach built the base and added sides. When looking at images of similar projects the sides were always much higher. But I didn’t think I needed that. I just needed something to glue the greenery to.
Next was the volcano. Cohen has been asking for a volcano. I found several plastic ones online I could buy but decided I didn’t want to spend the money and could make my own. Insert Paper Mache. I first cut strips of cardboard and glued them to the base.
* If I ever attempt something like this again I think a small tomato cage would work perfect.
Next I cut a newspaper up into several strips. The paper mache recipe I used was a 2:1 ratio of hot water to flour. I did 1 thin layer and let it dry.
After it dried I did another layer the same as above and let it dry. Then I did a third layer where I created the ridges.
After the third layer had dried I spray painted the whole volcano with a black spray paint.
I was in a hurry to get this done and was not good about continuing to take pictures during the building process. To finish the volcano I used light and dark gray spray paint to add dimension to the volcano. Then I used the hot glue gun to create the lava flowing down from the top. Once the glue dried I used red craft paint and painted the glue.
The materials I used for the rest of the board were:
Combination of rocks I previously bought to use for décor which I never ended up using and rocks I gathered from outside
An assortment of greenery pieces from hobby lobby. I used several different textures and colors
Left over wood pieces from our basement
LOTS hot glue gun sticks
Some fun birds from Hobby Lobby
Other random accessories I got at Hobby Lobby or ones that came with a tub of dinosaurs I bought
Thick brown cardstock (I would have used brown felt if they had any)
Green and blue felt sheets with a sticky back
I decided where I wanted the little lake to go and laid that down first. I glued the rocks around it. Then I glued down the brown cardstock and wood spools. Then I laid down the green felt. To finish it off I cut the greenery pieces apart into small pieces and glued them all around the edges, on the wood spools, between the cardstock, felt pieces, rocks, basically any empty space. Then I added all the little accessories.
I love how it turned out. I know there’s a chance it won’t stay in this great of condition forever. Let’s face it…little boys can be a little rough on the things they play with. But I hope it lasts for a long time and is something all the kids can enjoy for years to come!
My sweet boy turned 4 today. I will never forget the feeling when realizing our newborn baby was a boy. There is something about a mama and her little boy that is just a special connection. He was glued to my hip as a baby and toddler and still loves to sit on my lap. I will let him for as long as he wants! He has the kindest heart. One night while tucking him in to bed I gave him kisses on his cheek and he wiped them away. Or so I thought. When I gave him grief about it he said “Mom! I’m rubbing them IN!
He loves his sisters. Him and Landry are best buds and he will be the best big brother to Lainey. It’s adorable how attached he’s gotten to our golden retriever Desi. Ever since we moved rooms and he now has his own, Desi has to sleep with him. And let’s not forget the dinosaurs. He LOVES dinosaurs.
To say he is slightly obsessed would be an understatement. I am amazed at how knowledgeable he is. When we read his dino books I have to check the facts he rattles off to see if he’s right. He usually is. We had a pretty easy going birthday party with family. And it was, as you can guess, full of dinosaurs. I had an idea to create a dinosaur habitat for him to play with. So with a lot greenery from hobby lobby and many hot glue gun sticks, I was able to pull it off.
To end the day he got to be an archeologist and dig for dinosaur bones. Happy Birthday sweet boy!
We do Christmas big at our house. I have always loved Christmas. And Zach, well, let’s just say he REALLY LOVES Christmas. And I love that he loves it. Our house is decorated with two real Christmas Trees (one upstairs and one downstairs), new and old decor, the smells of the holidays in my diffuser, Christmas music in the background, and the fireplace going pretty much all day long and lots of Christmas movies watched before bedtime. It’s cozy. It’s homey, It’s family. It’s traditions. It’s love.
Last year our Christmas was less than traditional. Zach tried hard to keep things the same the best he could. We had a tree. We greatly appreciated a neighbor who hung up our greenery for us. I came home on the 24th and went to our Christmas Eve service (my favorite). I slept in my bed for the first time in over a month (it was heaven), and we woke up to Christmas presents under the tree. I spent most of the day at home and then headed back to Sioux Falls to be with Lainey. On my way back I realized Christmas was over and I didn’t get to watch any of our favorite movies with the kids, or read our books, or bake any goodies, or help Landry wrap presents. I may have shed a tear or two. I love traditions so it was hard to let those go. But I am also a realist, and know that just because it was “off” that year, doesn’t mean it’s always going to be that way. So this year, we are going to do all…the…things. We’ve already got 3 movies crossed off our list. I got our Christmas books sorted out. Landry and I are going to plan out the cookies and goodies we want to make. And I’ve already had Point of Grace and Michael Bublé Christmas albums on many times.
When we put up our Christmas tree up this year it got me thinking, why do we even put up a tree? I mean I love them, but what is the meaning behind it? So I had to look it up. Here is what I found.
” Bringing evergreen trees indoors has traditionally been used to celebrate winter festivals — both by Pagans and Christians — for thousands of years. Pagans would decorate their homes during the winter solstice with tree branches as a symbol to think of spring that was just around the corner.
Germany is also heavily credited with starting the Christmas tree tradition, as many Christians began decorating trees brought in from outside. Those who didn’t have trees — or couldn’t afford them — would make their own clever alternatives using wooden pyramids instead.
The 16th century preacher, Martin Luther, was recorded as one of the first people to bring a Christmas tree into his home – and one of the first to add lights on the tree, too. According to tradition, one night before Christmas, Martin was seen walking through the forest and looked up to see the brightly shining stars glistening through the tree branches.
To recapture this scene for his family, he placed a tree in his living room and wired its branches with beautiful lights.”
Taken from “Why Do We Have Christmas Trees?” by Lisa Walden
Being a Lutheran, I find that very interesting!
Have you ever paid attention to the lyrics in the song “Oh Christmas Tree”?
O Christmas tree, o Christmas tree Thy leaves are so unchanging O Christmas tree, o Christmas tree Thy leaves are so unchanging Not only green when summer’s here But also when it’s cold and drear O Christmas tree, o Christmas tree Thy leaves are so unchanging
O Christmas tree, o Christmas tree Such pleasure do you bring me O Christmas tree, o Christmas tree Such pleasure do you bring me For every year this Christmas tree Brings to us such joy and glee O Christmas tree, o Christmas tree Such pleasure do you bring me
O Christmas tree, o Christmas tree You’ll ever be unchanging A symbol of goodwill and love You’ll ever be unchanging Each shining light, each silver bell No one alive spreads cheer so well O Christmas tree, o Christmas tree You’ll ever be unchanging
O Christmas Tree, o Christmas Tree How steadfast are your branches! Your boughs are green in summer’s clime And through the snows of wintertime O Christmas Tree, o Christmas Tree How steadfast are your branches!
O Christmas Tree, o Christmas Tree What happiness befalls me When oft at joyous Christmas-time Your form inspires my song and rhyme O Christmas Tree, o Christmas Tree What happiness befalls me
O Christmas Tree, o Christmas Tree Your boughs can teach a lesson That constant faith and hope sublime Lend strength and comfort through all time O Christmas Tree, o Christmas Tree Your boughs can teach a lesson
The last verse is my favorite. And I think with the way the world feels right now, it’s quite important. Things in our lives do not feel constant. And keeping the faith can be hard. But just because this year’s Christmas might not be traditional in your homes, it doesn’t mean it will always be that way. We are proof of that. Things might even be a little different from now on, but remember traditions all started at one point as a new idea.
Our baby girl turned 1 year old. And what a year it has been. An absolute whirlwind. If you would have told me 2 years ago that we would have a baby with Down Syndrome, be in the NICU 2 months, and during that time my mom would have hip surgery, we would almost lose my grandma, Cohen would have a strange allergic reaction that we would never really figure out, I would hemorrhage 16 days after having Lainey, Landry would have hernia surgery, we would go home and have to isolate ourselves to stay away from RSV and Influenza, and then a Pandemic would hit, and Zach would leave his job and start his own…I would have looked at you and said f-off. But here we are!
We have been celebrating our sweet Lainey Dee turning 1 for several days. We had an official birthday party this weekend at our house. And we will celebrate with Zach’s family tomorrow.
Landry was my party planner (she designated that duty herself) and we had a simple night at our house with my family. When Landry turned 1, I thought I had to have a whole big shindig. Funny how things change by the time the third baby turns 1. I used the same streamer on the high chair I made for Landry. And we got balloons. And that was it. We always look forward to the best cake ever on birthdays but she unfortunately was sick, so we made our own. And the kids loved that they got to make her cake.
Happy Birthday my sweet girl. I am so blessed to be your mama. You have changed my life.
A mile out of town sits a little farmhouse on my family’s farm. I grew up in that farmhouse just like my dad and his siblings. My parents built a new house and moved when I was a sophomore in college. My cousin and his wife and their kids moved into the farmhouse. Then a few years later my sister and her family moved in and are now raising their 3 little babes there. Inside that farmhouse is a door to a closet. And on the inside of that door are close to 100 names. That door holds the names, dates, and heights of family and friends. Ranging all the way from when my dad was young to today. I love that door.
When Landry was around 1 year old we got a large wooden ruler to put in our hallway. It’s sole purpose is to hold the names, dates and heights or our family and our kid’s friends names. I’m not sure it can hold as many as it’s not as big. But we will find a spot for them. When Cohen turned 1 we started putting his measurements on that ruler. We recently measured Lainey for the first time when she turned one. We looked at how much Landry and Cohen have grown this past year. Landry, 2 inches and Cohen, 3. I was quickly reminded that while the chaos, messes and constant need for sippy cups to be refilled feels like all my life consists of most days, it will be over sooner than I’m ready for.
Lainey is our last baby. (Thank God, I can’t handle another pregnancy) While I am 100% good with our decision to be done, it doesn’t mean I won’t miss the baby stage. The day Cohen doesn’t let me pick him up and hold him and hug and kiss him will be a horribly sad day for me. I think about who these little people will grow up to be. I am excited to see who they become. It also brings me a lot of worry. I worry we will make mistakes as parents that will cause them to go down the wrong road. I worry we won’t find the right balance between helping them experience all the world has to offer while hoping to keep them away from all the ugly there is out there too. And I worry about Lainey. There is so much about her future that’s unknown. Will she be able to live independently? Get married? Have a job? We had two full days of appointments for her last week. One was with a geneticists. We talked about a lot. But one thing she said stuck with me the most. When we were discussing all her therapies and things we can do to help her be successful, she said that while those things are all very important, the most important thing we can do is love her. And interact with her. And read with her. And do all the things we would do with our other two kids. I think the most important thing we can do for any of our kids is believe in them. And make sure they know it.
Children are likely to live up to what you believe of them.
Today I have found myself back at a very familiar place. Sanford Children’s Hospital. Lainey has appointments today and tomorrow. And I can…not…believe…it has been a year already. One year since she blessed our lives. One year since our lives changed. One year of having felt every emotion there is. One year of growth.
When you find yourself going through trials in life, I think you end up putting your head down and plowing through. You do what you need to do because you have no choice. And it’s not until you have gotten through it all and can look up and take a breathe that you reflect on what all happened. I have lately found myself reflecting a lot on this past year. And it wasn’t until looking at some pictures and video clips that I thought, “wow”. Did that all really happen? I mean, yes, it was a crazy time while going through it all and we felt it. The first night I got to go out and spending time with my friends I found myself in the bathroom crying because it all just sort of hit me. So it’s not like this is the first time I’ve looked back. But one year is a big deal. Especially when I remember feeling like we were living in 1 – 1/2 hour increments and crossing our fingers her next bottling would go better. A year away seemed impossible. But here we are. I put those pictures and videos clips into one video. I hope to look back on this video 5, 10 years down the road, still proud of how we plowed through. And I hope to show the video to Lainey someday and tell her how strong of a little girl she is.