It's Not Taboo It's Part Of You

 October is National Pregnancy Loss Awareness month. This includes loss during and after pregnancy, stillbirth, miscarriage, neonatal death and SIDS. Way too many people experience loss and often it's considered taboo to talk about it. It's time to break that belief and encourage woman (and men) to sure their experiences. Therefore I will share mine because my experiences are a part of me and deserve to be shared and not hidden within those that experience the loss or losses.

Yesterday our first born son turned 13 years old. It seems impossible that so much time has passed since that day. Our journey to being parents started long before that day though. It all started all the way back into October 2005 we made the decision to begin trying to get pregnant. We had been told that there was no set time when we would get pregnant. As each month passed we didn't get discouraged as we were sure our time would come soon enough. Then April 2006 I took a pregnancy test because I had a feeling something was different. Imagine the excitement when the test was positive. It was right before Easter so I knew I wanted to surprise Jim with the announcement. I woke up early Easter morning and set up a stuffed Easter bunny up with a sign 'You're Going To Be A Daddy.'  He was excited to though he refused to believe it until I took another pregnancy test. (sidenote: We had to drive around for more than an hour to find a pharmacy that was open to get a test). Our excitement only lasted a day before I began bleeding and experienced a miscarriage. It was such a hard experience going from such a great high to a great low in such a quick time. We were not discouraged though because I was only 5 weeks along and I soon learned that miscarriages like this are common around 4-5 weeks. Most woman never realize they were pregnant and just assume their period came late. I met with my general physician to discuss the loss and ask for advice on how to move forward. My doctor recommended to wait at least one month before trying again (to give my body time to return to normal) and suggested getting a OB/GYN doctor who could better advise our future pregnancy journey.  

Mid-June 2006 I once again was having some telltale signs and to no surprise I had another positive pregnancy test. Having learned from our previous experience we were a little more subdued with our excitement. I scheduled an appointment with my new OB/GYN and was informed that yes we were going to be parents. We waited until mid July before we began to share our news with family and it was great to start buying maternity items. Then early August Jim & I headed to a doctor appt with one of our doctors. The doctor was excited for let us hear our babies heartbeat for the first time. It wasn't meant to be though as we learned that our baby had no heartbreak and an ultrasound showed that our fetus had stopped developing around 6 weeks. One week later we headed to the hospital to have a D & C performed to remove tissue that would not pass on its own. For those who have asked what this experience was like I can only explain it as ' the worst feeling of emptiness I ever felt'. This loss was much harder as I was 13 weeks at the time and many more people knew that we had been expecting. It is so hard to have to repeatedly explain to people that we had lost the baby. Once again we were encouraged to wait a bit before trying to get pregnant again. Due to the need of the surgery the recovery time of the body was longer and the emotional toll was harder also.

By Thanksgiving that year we were still sharing the news of the loss to those that hadn't heard the news. What no one else knew was that once again I was pregnant. It was the weirdest experience to be sharing the news of a baby we had lost knowing that we had another on the way. Once again though it was not meant to be as I experienced another miscarriage the first week of December. That was one of the hardest holiday seasons for us and we were certainly feeling discouraged. 

Our doctor decided it was time to start looking into possible causes of the miscarriages. Since we had no problems getting pregnant he wanted to look closer at possible genetic issues. Both Jim and I went through genetic testing and waited for the results. We didn't have to wait long though as we were informed that all test came back normal. We scheduled another appointment to discuss what our next step would be. Imagine the doctor and my surprise that at that next appointment I was pregnant again. Now here it is years later and that baby I was pregnant with just turned 13. 😊

I would love to say that once we had our first baby carried to term we never had to face the sadness or worries again. Unfortunately that is not true - almost 3 years later we were trying to conceive again. We were so excited when we finally got a positive pregnancy test. I scheduled an appt with my doctor to confirm the pregnancy and have my yearly appt. Two days later while subbing I noticed some usual cramping and a bit of spotting. Knowing my past I called my doctor that afternoon to tell them what was going on. Since the cramping and spotting had subsided they told me to take it easy for a few days and call if any symptoms worsened or new ones appeared. I awoke the next day and I was spotting again and this time it was more reddish so I called the doctor. They scheduled an appointment for that afternoon and I was feeling very discouraged as I feared another miscarriage.

When I arrived for the appointment I was immediately taken to the ultrasound room instead of an exam room. This made me even more nervous and I wished I had brought someone with me for support. The doctor and a nurse came in and they began the ultrasound. I remember staring at the screen hoping for some signs of encouragement but nothing was registering. The doctor switched to a new screen layout and asked me to look at the screen. Then he pointed to it and said 'do you see this? That's your baby's heartbeat." Not going to lie I immediately began to tear up in pure happiness to hear my baby was still okay and had a strong heartbeat. The doctor advised me that the spotting was due to the placenta position which was causing some irritation. I was told to take it easy for a few weeks (I was about 8 weeks at that point) and they would monitor me to ensure no further issues would arise. I was also told that if the placenta's position became problematic I may have to go on bedrest. I'm happy to say the issue resolved itself and the rest of the pregnancy went smoothly. Once again we were blessed with become a parent to another little boy.

Some may wonder why I share these stories. Some may feel that this is TMI and has no place out there. And there are those that think all this stuff is taboo and should not be shared. To those that say that let me say this:
    -  I tell my story because it's a part of my journey.
    -  I tell my story because when I felt no one else knew what I was feeling I learned there were others close to me that had shared similar experiences and never said anything. Having someone that knew what I was going through, knew that a loss doesn't have to control you, and knew that there was hope could make a huge difference.
    - I tell my story because it matters to me and I want others to know that if they need to talk I'm there for them.
    - I tell my story because I survived it with new understanding, insight, and belief that I can help others.

Our family was blessed with two amazing boys that we treasure. Still our family was also shown that not every story can be a happy ending. Every October I think about our babies that we never got to meet. I think of friends and family that have faced their own pregnancy losses. Some went through surgeries, fertility treatments, and various testing just to have a chance to have a baby. Some lost their babies early in the pregnancy like we did. Some carried their babies for months but then their babies were called home before they could make their earthly arrival. Some carried full term but due to complications never got to bring their babies home. And yes some even delivered their sweet babies and took them home only to lose them a short time later. 

Thank you for taking the time to read my story. Thank you for taking the time to understand that just because some feel things should be considered taboo doesn't mean it has to be. If you have a story, share it. If you have a heart, open it up to others that could use your support. If you have a child, hold them a little tighter because they are a blessing bestowed on you.    

Different Kind of Summer

 Been awhile since I've posted. This year's summer was certainly a different one from years in the past. Our summers are usually full of county fairs, auto racing, demolition derbies, and auctions. This year though many of these events had to be cancelled due to the COVID-19 pandemic. Not having our weekends booked with these events allowed us some extra opportunities for different adventures. Here are some of the adventures this summer allowed us to enjoy:

Walks at the Lake - We live a little over a block from the Lake but usually don't make it there much during the summer because we are always 'busy' doing other things. This year we stopped the excuses and have been averaging walks there at least twice a week. Usually it's just Charles and me that go since Jim is still working from home during the week and Johnathan has been sleeping in a lot. These times are a great bonding time for Charles and me. We talk, collect nature treasures (like feathers and rocks), and enjoy the peaceful walks. Charles enjoys creating kindness rocks and leaving them around the lake for others to find. 

A Trip to New Jersey - One of the bans during this time is dogs are not able to be shipped on planes. With my mom operating a kennel this has been an issue for her. Therefore us 'kids' have been helping out driving the puppies to their new homes. At the end of May we left our boys with my parents and Jim and I took a trip to New Jersey to meet a family from New York City that had bought a puppy. We left on a Friday afternoon headed to a location in Pennsylvania that allowed a place to sleep with our puppy passenger. The following morning we were back on the road to head to New Jersey for the planned meeting stop. This was an interesting trip for us because at this time many places were still shutdown. Simple things that we usually took for granted became very noticeable. The rest stops that offered food and bathrooms were the most noticeable difference. Most the bathrooms were limited in the number of stalls available to use. The food vendors were allowed to only have one business open. This vendor also closed by 8:00 in the evening to allow for substantial cleaning now required. We made the mistake of driving too long and could not find any food places still open to eat. We had packed snacks for the trip but nothing substantial enough for a good meal. By shortly after 10:30 that evening we were lucky enough to find a McDonald's drive through that stayed open to 11:00 that night. That was some of the best tasting McDonald's we every had - Perhaps the fact we were starving made it taste that much better. The following day we arrived at our chosen meeting spot in the middle of a downpour. We had chosen a Home Depot since it was right off the interstate and we knew that they were open. Obviously many were happy they were open because the parking lot was full with customers pouring in and out of the store. We were happy to drop off the dog and get out of there quickly. On the way home we stopped in Ohio for another overnight stay. That night we enjoy our first meal inside a restaurant in two months. The following day we continued our journey home in much better weather and a much slower paced drive. (We never guessed that two months later we would be making a similar drive)   

A Trip to Pennsylvania - In July we agreed to haul another puppy to it's new owner. This trip offered a new opportunity for us. We knew Johnathan would enjoy the trip but Charles was not looking forward to a long car ride. He was excited when he found out he had been invited to spend the weekend with his Pa John & Mary. This was a new experience for Charles as he would be spending his first overnight visit somewhere without either Mom & Dad or even his brother. (In the pass both boys had spent nights over at my parents but it was always together) While there was some nervousness as the reality of this set in Charles did awesome and is already planning more visits by himself.
As for Johnathan and us we hit the road at 2:00 am on a Saturday morning headed for a spot in Pennsylvania to deliver another puppy to it's new home. This trip was different then our previous one since more places were back open and we had a more options for stops and food. Johnathan loved this trip as he got to experience most of it from the front seat. He loved sitting by his dad taking in all the scenery (though many times it was through closed eyelids). I enjoyed the backseat while reading a good book, enjoying the countryside, and catching some naps also. After the dog was delivered we found ourselves only a short distance from Pocono Speedway. We decided to drive by and were pleasantly surprised when we discovered a practice road test of some cars on the track. That evening we ended up back in Ohio to once again enjoy the indoor seating at Quaker Steak & Lube. Back at our hotel that evening we enjoyed a relaxing evening as Jim worked on catching up on his lost sleep. Good reports from Pa John on the great time Charles was having made for a nice day. When we got up the nice morning it was back on the road to head back to Indiana to pick Charles up. We enjoyed a nice meal while Charles shared all the adventures he had while we were gone. We returned home late that even with more memories made and another puppy delivery completed.

Stay tuned for posts about our Summer Vacation Trip out West!!!!!!     

We've Traveled Afar

People are amazed to find out how much we travel and how far we are able to travel with Johnathan with no issues. The secret to our great ability to travel is simple. We started him traveling early and always plan before we leave for the trip.
                       
At least once a year we take the 12-14 hour car ride back to Western part of New York to spend time with Jim's family. The first time Johnathan went on this trip he was 2 months old. I'm sure for a lot of moms of little babies would never have taken this trip. Remember I said that Johnathan was a good sleeper so that helped with the trip. Often when he slept in the car I slept too. When he cried we stopped for a bottle and diaper change. Yes that made the trip longer and the stops more frequent but it was worth it. As Johnathan got older we did have more issues that came about with travel but we have always found ways to work through them and never let our ability to go many places.

So here are some of the things that we have discovered about Johnathan and his traveling ability.

Johnathan loves to look out the window and see things. He can often be entertained by this so we don't need to plan as many activities for him to do in the car. The problems start when we travel when it is dark. Especially when we travel to New York we often end up driving the last couple of hours when it is dark. Since we are driving on the thruway there isn't many lights or things to see. This leads to Johnathan to get bored and wanting to get out of the car more. So we have learned a couple of strategies to help with this issue. When traveling we try to keep Johnathan awake as much as we can during the day. Especially since there are things to see and more to do then we want to keep him engaged in activities. That way when it starts to get dark he will likely be tired and will rest as we finish our drive in the dark. Other strategies we have done is leaving earlier in the morning, sometimes before the sun has even come up. Then Johnathan and Charles can finish sleeping while it's dark and most of our driving will happen during the daylight hours. We also bring electronics with us for those dark hours. Johnathan enjoys his tablet and it helps him keep his mind off of how long we've been in the car. Since he's usually distracted by looking out of the window during the day it also feels to him like he's being rewarded with tablet time since he hasn't had it most of the day.

Any parent will tell you it's important to keep kids entertained or they will get bored. We have found several activities that keep the boys from getting bored on long car rides. We keep a supply of books, crayons, and paper in the vans. That way they have things in the car no matter where we are going. We also have small games that we keep in the cars such as car bingo and magnet play sets. Most of these can be found in the dollar spot section of Target or at a dollar store (especially this time of year).

When the boys were younger we found a great hack that helped them with activities and eating in the car. We went to the dollar store and bought two baking sheets and got some magnets. We drilled holes in the top of the pans and got chains that contacted them to the headrests in front of their seats. Then we put magnets on the bottom of pencil cases, food containers, and a mirror. We filled the pencil case with magnet letters, pencils, and crayons. When we were driving the boys could place the pan on their laps, take out a piece of paper, and put the pencil case on top of the paper and the pan. Then they were able to write or color on the paper without the crayons and pencils rolling away or the paper moving. When we had snacks or meals the boys could put they food in the food containers and stick it to the pan. Then their food wasn't moving around or spilling on their laps and the floor. The mirror was a blessing for Johnathan because he loves mirrors. He would often play with the reflection in it and experiment with moving light around with it too. Since then we have found many more great hacks to use when traveling on Pinterest (I highly recommend this site if you are looking for ideas).  **Disclaimer: The pan was a great help to us while traveling but there is 1 thing you have to be careful about. Obviously a metal pan kept in a hot car will get hot. We often removed the pan when not in use & also made sure the boys had a blanket/towel on their laps under the pan when using it)

As the boys have grown we have found the importance of planning ahead before we leave on a trip. No matter where we are going we always over plan activities that we can do at the location. This way we aren't just wondering around trying to find things to do. (This tends to cause Johnathan to get frustrated) We also plan what to do in case Johnathan is having an off day that could interrupt an activity. Such as when we went to the zoo in St Louis. Johnathan wasn't feeling well and needed to take lots of breaks. We had other activities planned for that day but due to the breaks we were not able to get to the other activities. We readjusted and tried to not become frustrated ourselves when things didn;t go as planned. We also make sure we research suggested activities. Again with our St Louis trip many people suggested the City Museum and the Magic House. As soon I researched these places I knew they were not the right places for us: large crowds, climbing areas that adults can't get to, and large overwhelming layouts are never ideal for an autistic child that may easily shut down if overstimulated. Last year was a great learning experience for us as we traveled to Branson, Missouri 3 times throughout the year. Each trip we took time to plan and each trip was different. We did some of the same things while there but we also discovered many hidden treasures too. 

Even packing for a trip takes extra planning. Most times a person would pack an outfit for each day and maybe an extra just in case. When we pack we have to pack several extra outfits though because of so many unknowns. One of the side effects of the medication Johnathan takes is he has a harder time regulating his body temperature. Therefore he can get too cold or too warm easily. Therefore we have to pack an outfit for the weather forecast for that day but then we have to have alternative outfits to. Sometimes we have Johnathan dressed in layers and can spend the day adding layers and then taking layers off. Also there are many extras that we also have to pack for our trips. In Johnathan's bag we need to make sure that he always has his headphones. We also pack some comfort items for him so no matter where we are he has things that remind him of home. We usually travel with one or two of our fuzzy blankets because we have found he sleeps better when he has one of them. Each of the boys also pack a personal backpack that includes special items for them. These can include favorite books, mini games, or blank notebooks for making pictures or writing. Jim and I usually take a surprise bag with us that has some special trinkets in it to give the boys during our trips. Usually we give these to the boys during the long drives or after a long day of activity that we've made it through without meltdowns. Usually this are small items that we've picked up at a dollar store or sometimes a special item that the boys have been wanting. On top of all this we also pack a snack bag and a cooler (or two) of drinks for our trips. Between long periods of time in the car and getting back to our hotel late at night it's nice to always have a little snack or drink on hand.

One of my goals on my bucket list is to make it to all 50 states. I have decided I'm going to help the boys to make to as many as I can for them to. Here are some of the states they have traveled to:
- Illinois                               - Iowa                                          - Missouri                             - Indiana
- Florida                               - New York                                 - New Hampshire                 - Vermont
- Pennsylvania                     - Ohio                                          -Wisconsin                           - Tennessee
- Michigan
This year we have trips planned to the Dakotas and Virginia so we will hopefully get them added to the list. People are surprised that all our trips are done with us driving to all locations. There is a good reasons why we drive to all of our destinations.
- So many of the greatest parts of our trips is all the great experiences along the way. It was on our Florida trip that we discovered how much we enjoyed the beauty of Tennessee. Many great food stops had lead to our favorite food spots to eat.   
- I have a great fear of flying and truly make myself sick just thinking about having to get on a plane. While I know we will have to fly to some places in the future and happy that most of our travel continues to be from driving to the locations.
- We have not tried to fly with Johnathan. This is a big unknown as to how this experience would go with him. Knowing that my nervousness might affect him, figuring out how he'll deal with his ears popping, and being in the closed in space are all things we need to take into account. Our plan is to do a small flight to 'try out' flying so we can see how he does with a flight. Until then we are sticking to driving.

Even when we are not going on big trips we love being able to just jump in the van and drive for a day trip. Sometimes we have an idea where we are going and have a set location we want to get to. Often though we'll just get in the van and drive with no real idea where we will end up. Of course we don't do this without knowing that Johnathan might get frustrated. There has certainly been times when this has happened. Usually when he gets the most frustrated will happen when he gets hungry. Johnathan is pretty set in his schedule at what times he eats during the day. When that schedule gets thrown off it can be tough for him. When this happens we try to stop somewhere to eat. Sometimes this happens quickly and we find hidden treasure places to eat. Sometimes there's nowhere to eat and Johnathan can get so escalated and that our goal will become just finding somewhere to eat. We believe that when we travel it is nice to enjoy food from that area. Therefore we try to avoid fast food and chain restaurants if we can.

  

This has been a difficult time for our family not being able to travel or even go for our day trips we like to do during this time of year. I know that in the future we will be able to do these trips again but until we wait and dream of all the places we will discover.

Our Own Dr Dolittle

While Johnathan loves people he loves animals even more. Ever since he was little he has always loved to be around animals. Anyone that knows us knows it's not a problem to have animals on  hand to fill this need. Growing up we always had an endless supply of animals to keep us busy. From livestock, to wildlife, to family pets our home was never empty and I am determined to give my children the same experiences.

First and foremost on Johnathan's list of animals are dogs. Johnathan has always loved having a dog around to cuddle with, pet, or just to keep him company. From the time he was born he loved being with a dog no matter it's size. His dog pals have ranged from newborn puppies to full grown adults and from tiny little poodles all the way up to huge great danes. Johnathan loves spending hours at grandma's house out in her kennel helping socialize dogs. At home he had a boston terrier who was his best friend for 10 years. Now we have a golden retriever who has become a kind of a therapy dog for all of us. I have found that if she is laying by Johnathan he will constantly hug or pet her.

 

If I had to choose Johnathan's second favorite animal it would be a monkey. Every time we go to a zoo Johnathan insist on spending the most time at the monkey exhibits. He can sit for long stretches of time and just watch them play. One of his favorite experiences was at Niabi Zoo when he was little. We had been sitting watching the monkeys for about 20 minutes. All of sudden a monkey jumped off the branches and sat on the ledge by the window. Johnathan who was sitting right on the ground and reached over like he was petting the monkey. The monkey sat there for the longest time and when we left it followed us all the way to the end of it's enclosure. 

 

While Johnathan loves the dogs at grandmas he has a special spot in his heart for cats too. Luckily most the cats are very accepting of his love. I often him called him the cat whisper because he'd sit by the window at my grandma's house. It would seem every time I'd turn around there would be another cat at the window staring at him. At home our past cats loved cuddling with Johnathan and their happy purrs would be heard across the room. Even now with our cat that is not as nice Johnathan will sit on the floor by her pen to be near her.

                     

                     

I really think Johnathan is meant to be on farm. He loves farm animals. Be it goats, chickens, ducks or even llamas he has a bond with them and has since he was little. He loves talking to them  

 

As I've said before Johnathan loves water so it doesn't surprise me that he loves animals that enjoy water to. We spend a lot of time out at the lake in town watching the ducks and geese out on the water. When we go to the zoo or an aquarium Johnathan is sure to find the otters to watch. (I'll admit I enjoy finding and watching them too) Oh course one of Johnathan's favorite water animals is any kind of fish. You will often find Johnathan sitting by the tanks in Bass Pro Shop, talking to the blue fish at the aquarium, or trying to grab the Koi fish out of the ponds.   

Johnathan is intrigued by the reptiles and amphibians when we go to their buildings at the different zoos. I'm not quite sure he'd do well with them since he was trying to grab this lizards face. Luckily it was in an enclosure. I'm looking forward to taking Johnathan tadpole hunting this summer though. It was one of my favorite things when I was a kid and I think he'll love seeing the tadpoles in all their various stages.  

Oh birds and Johnathan have been an interesting experience. The first time we went into one of the bird enclosure and the birds flew by him he wasn't impressed. He's gotten a little more accepting of them and has even held the food sticks for them. As long as the birds stayed on their perch or the stick he was good. Now if they ventured onto his hand though he's was not as happy about the situation. His favorite bird is a parrot and he'll happily do his parrot imitation for you.

 

Johnathan's love of animals is one of my favorite things about him. Watching his face light up when he sees an animal. Trying to be as close as he can get to them and having no fear what kind of animal it is (expect for those birds that insist on walking on his arm). I will continue to make sure Johnathan gets to have new experiences with animals. While we can't have many animals in town we are blessed to have plenty of space out at mom's to accommodate various animals.  

People Who Matter

It's interesting the things that go through your mind when you find out your child has autism. I remember thinking about how it would change our lives and wanting to give my child the best life we could. I didn't want Johnathan's diagnosis to overpower how people treated him. As you can imagine when Johnathan is having a rough day we get those judging looks from those that don't understand. I've come to expect them and for the most part I don't even pay attention anymore. Their opinions don't matter to us.

There was those whose opinions did matter to us though. Our families. We both come from families that are close. My family all live in the same town and we get together several times a month and talk almost daily. Jim's family is spread out but the bonds are strong among them also. When we realized that our families were going to have to learn about autism and what it meant for Johnathan we didn't know what to expect.

It didn't take long though for our families to let us know they were going to be an active part of Johnathan's journey. It's hard to put into words what it's been like to see our families embrace Johnathan for the unique person he is. There was never a doubt that they would love him because it's impossible not to love that boy. At the same time it's hard sometimes to see Johnathan in full meltdown. The happy go lucky boy gets lost in that cloudy abyss and we don't know how long until he'll make the journey back to his happy place. Their willingness to be a part of the journey no matter what reminded us how blessed we were.

 

Some of our family did research to learn more about autism. As a parent it meant a lot that they did this. It meant even more when they came to us to ask some question about exactly what it meant for Johnathan. Knowing that they realized that each child with autism is unique in their own ways was a blessing also. We had to learn about the different qualities that Johnathan had that defined who he was. We had to learn his triggers, his warning signs, and what worked best for him. It took time but we mapped out a picture of the ins and outs of Johnathan. Seeing members of our family taking time to do the same, sometimes hands on and sometimes just asking questions, reminded us how lucky we are.

 

The amount of support they have given when we were faced with tough decisions is unbelievable. When every choice you must make can impact your child's whole life you don't take those decisions lightly. I'm thankful that we had family that were willing to listen. Often we weren't looking for others opinions, we just needed someone to listen as we talked it out. I know there was times they wanted to speak up and give their opinion yet held their tongues because they knew we had to make our own decisions. 

The greatest thing was the amount of love they gave Johnathan no matter if it was a good day or a bad day. There were days when Johnathan's autism overwhelmed him and he just needed held. Family was there. There were days of  great success and accomplishments that caused our joy to overflow. Family was there too. No experience was too small, no feeling was overlooked, and no moment was downplayed.

It has been a blessing to watch Johnathan build bonds with members of our families. Johnathan loves his family and he shows his love in many ways. Be it great big hugs, fist bumps, or climbing onto their backs there is no denying those bonds. It's been great to hear Johnathan begin to use his voice to call people by their names. The bonds of family are forever and I'm thankful those bonds are growing each day for Johnathan.