Memory Lane

A friend of mine shared a video yesterday that took me on a little trip down memory lane. I had not seen this video in two and a half years. I first saw it on YouTube the same day that I found out Camden had Down syndrome. If you know me, or if you have followed my blog from the beginning, you know what those beginning days and months were like for me. I won't get into the whole journey, but I'll share what those first couple of days were like.

 

I remember it was a Monday and it was exactly one week after giving birth to Camden. I had already known that they had sent off testing to see if he had Down syndrome, but we were almost positive that he did not. Really, it was just a matter of playing the waiting game to get the results of what we thought we already knew. I remember the doctor telling me that morning that they should have the results back sometime during the day. I was there holding Camden during my visitation times just like I had been every day before that. I was about to leave when the results came back. The doctor walked over to me and I could tell by the look on her face that it wasn't the news that that we were expecting. She looked at me and simply said, "he does have it. I am so sorry."

 

That was the worst moment of my life at the time. I felt like somebody punched me as hard as they could in the gut and ripped out all my insides. I tried so hard to keep the tears in because I didn't want to appear weak, and I didn't want it to look like I didn't love my son. The doctor walked away and I just stood there not knowing what to do next. I looked at Camden, I gave him a kiss on the forehead, and I put him back in the isolette. I will always regret that moment because I wish I would have stayed and held my son just a little bit longer. I wish I would have told him that I loved him. Instead, I wanted to get away from there because I felt there was an emotional disconnect. I didn't feel that bond that I was supposed to feel anymore. I grabbed my purse and walked out of the NICU with my head down and crying. I could tell that everyone there didn't know what to say to me.

 

 My stepmother came to the hospital to pick me up and drive me back to my dad's house, which is where I was staying with Carter at the time. I remember telling her in the car and I was an emotional wreck. Richard was not with me at the time because he had to work and we live 2 hours away form the hospital. I picked up the phone and called him to tell him what I had just learned. His response was, "are you serious?" I don't think there were many words exchanged after that as we were both shocked and heartbroken. We hung up the phone and didn't talk much for the rest of the day. When I got back to my dad's house I went into the guest bedroom, picked up my iPad, and started my frantic search of anything and everything about Down syndrome. I got on YouTube to try and find any kind of video about Ds. I came across one video in particular and it was the first one I watched.

 

 I cried from beginning to end. This one video gave me a little bit of hope in a very dark time in my life. I watched it over and over again for so many days, sobbing my eyes out each time. Richard came to visit the next day and I showed it to him. I remember watching his face as he watched it, and I could see tears in his eyes. My mom had a very difficult time with the diagnosis as well. She didn't talk to me for several days, and that was extremely hard on me. She was grieving as well, and didn't understand what it all meant. I sent the video to her and I think that is what finally made things okay. Who knew that one little video could be so powerful for our family? 

 

Since that time I have not seen this video. When I saw my friend post a link to the video, I immediately knew what it was. It instantly brought back so many memories as I watched it for the first time in over 2 years. I still cried like a baby from beginning to end, but they were happy tears this time around. I can relate to every single thing that those parents said. I could have never imagined two years ago that my life would be what it is today. It was different watching it this time. I could see the beauty in it, and I can see the beauty in our lives.

 

 

 

Taking Care of Me

As parents, we tend to put everyone before ourselves. I think this is especially true as a mother. We need to take care of the kids, our spouse and our family. Then there's work, cleaning, cooking, laundry, errands, after school activities, etc. The list seems endless most days. We feel an overwhelming sense of responsibility to get it all done. Then we get even crazier and try to add more to our plate.

 

 

Being a mom of a child with special needs is hard sometimes. Heck, being a mom in general is hard sometimes. We strive to do the best we can for our children. If you're like me, you feel like a failure at times. I often feel like I'm not doing enough. I'm not sure what enough is, but I'm not accomplishing it. It's hard for me to accept that it's okay. We do the best we can, and that's has to be enough.

 

 

What's the point in all this? It has taken me all my life to finally admit that something is wrong with me. I've been an overly anxious and stressed out person since I can remember. I get nervous about everything. I dwell on things longer than most people. I care too much about what other people think. If I've done something wrong, or have made a mistake, it will worry me for months. I get sick to my stomach with worry over the simplest of things. That's just me. After Camden was born my stress and anxiety multiplied by a thousand. I was sad everyday. I was always shaky and could feel my heart beating out of my chest. I felt like I was going to throw up everyday. I still feel like I'm going to throw up most days. I couldn't sleep. I ate all the time. It was miserable, but I also knew it was a normal reaction for the situation. Once I accepted the diagnosis and settled into this new life, it got better. Well, I thought it got better. I wasn't sad and crying all the time, but I think I was stressed over different things. I went on with life without really processing everything. I didn't open up to anyone. I put a huge smile on my face and acted like life was full of rainbows and unicorns. No one but me knew what was going on inside. Occasionally I have had emotional breakdowns, and I've shared them here on this blog and with friends. I then acted like it passed within a couple of days. The truth is, I think I've been having a breakdown for two years now and just didn't realize it until now.

 

 

I had a little health scare last weekend. I won't bore you with details, but everything turned out ok. The doctor said I had an anxiety attack. I still don't know if that's true because some of the symptoms don't really add up. However, when I started reading about it, a lot of the signs did apply to me. At first, I was in denial. Surely that was not true. I'm strong. There's no way I can just break like that, right? I didn't even feel anxious before it all started. Or maybe I did and just didn't realize it because it's my normal. I really don't know. So, I sat down the other day and listed all the things I was stressed out about.

 

 

I still get stressed over Camden's diagnosis. It's not so much that he has Down syndrome, but it's more related to the health issues that come along with it. I stress about doing therapy five days a week. Finding time to do therapy five days a week stresses me out more! I'm constantly worried about Camden's health. He gets sick a lot. I worry about his heart, even though the hole is getting smaller. I was stressed about his surgery to have his adenoids out. I worry about my kids' futures. I stress about being able to afford college. I am stressed about Cam starting school this fall. Should I put him in school, or home school him? I'm stressed that the boys may not be able to attend the same school. I worry about Carter while he's in school. I don't know why, but I do. I worry that I don't pay enough attention to Carter because Cam needs so much. Does Carter feel loved? I worry that Carter will resent Camden. I've had some vision issues and ringing in my ears that's causing wicked headaches, and that stresses me out. I worry that a tire is going to blow out while I'm driving. Every single time I'm driving. Does anyone else worry about that. Sounds crazy, right? I'm stressed that I have to drive an hour or more to doctor's appointments, work, etc. Work is so busy right now and that's stressful. I worry about money and bills. I worry about my husband because he worries about money and bills. I stress about running out of water at the house (long story). I get stressed over Carter's social anxiety. Gaaaaaaaaaaahhhhhh!!!!

 

 

Seriously, it's too much. This isn't even close to everything I worry about on a daily basis. I have realized that I'm extremely stressed and anxious. It's to the point that it's making me sad too. I have a great life. I know that. I love my family dearly. They will always come first. However, I know I can't continue to take care of them if I don't take care of me. I have found a physician and have an appointment set up. I haven't had a pcp in years. I thought I never needed one. Now I do. It has been incredibly embarrassing to admit all of this, but it has also been therapeutic to finally get it out. I also want anyone going through the same thing to know you are not alone! Man, that was hard.

 

 

Rockin' Moms

I'm sure many of you know by now that the Rockin' Moms has been my main support group since Camden was just a couple of months old. I thought I would explain further how this wonderful group came about, and what they have done for me these past two years!

 

Once I found out that Camden had Ds, I was lost. You all know that. I've been very honest about my feelings from the beginning. I had no information or any resources. I was left to learn everything on my own. I used Camden's time in the NICU to learn everything I could, but I couldn't bring myself to seek out any local or online support groups. I wasn't sure how to deal with my emotions, so I felt I wasn't ready to talk to anyone else. Once we got home from the hospital two months later, I decided I was ready to seek out support. The first website I went to was Babycenter.com. This website pretty much has it all. It covers conception through adulthood. There are a gazillion support groups for everything you could think of. I joined the Down syndrome group and started lurking. I read post after post, and then one day I decided to stop hiding and to contribute to the conversations. I quickly met friends, and some were even local which was awesome. Then one day, a mama posted a question asking if anyone would be interested in starting a private Facebook group for kids born in 2012-2013. I said sign me up. Day after day more moms were added to the group, including the friends I met through Babycenter. Soon we had about 150 moms and that's where it was cut off. We wanted to keep the group small so it would be more personable. The '12/'13 moms with kids rockin' the extra chromosome was up and ready to go!  

 

Who was this mama that started it all? That would happen to be my dear friend Jen Jacob. She created the very first Rockin' Mom group. I don't know how this woman does it. She is truly a rock star! Jen then went on to create more Rockin' Mom groups because more moms wanted to be a part of this amazing thing. I don't know how many groups there are now, but there are several, and there will continue to be more as more babies are born.

 

It didn't take long for me to feel comfortable with these mamas. I quickly learned that this was my safe place to go. We could let our emotions out without judgement, and the best thing was that we all understood each other. It was hard for me, and still is, to let others know how I'm truly feeling. I don't want the pity look and I don't want to make others feel uncomfortable. I don't even talk to my hubby about it. Only my closest friends truly know what I go through, and I even hide a lot of things from them. With my Rockin' Moms it's different. I can spill it all, and they are there for me. It's hard for anyone to know what you're going through unless they are going through it too. These moms "get it". I laugh and cry with these moms. I celebrate their children with them. I get angry with them when others have wronged them. I'm an only child so I don't know what it's like to have siblings, but I imagine it's close to this. I feel like I have gained 150 sisters, nieces and nephews. I truly love these mamas and their children. They are fierce, smart, funny and resourceful. I don't how I got so lucky to end up in this group. These women have done amazing things and are the best advocates I know. A group of these Rockin' Moms created the Down Syndrome Diagnosis Network. This non-profit organization provides support to new and expecting mothers who have received a diagnosis of Ds. They provide real and up to date information, along with real life accounts from other families. This organization has become a huge and amazing resource for others. Kuddos to you ladies!

 

This year DSDN is putting on the first Rockin' Moms retreat in Minnesota this September. This will be for all Rockin' Moms in all the groups. It's only for moms and I couldn't be more excited because I'm going!!! I will get to see moms I've met before, and meet many other moms in person for the first time. I've been lucky to meet many of these lovely ladies, and several live in here in Texas. I know these are bonds that will continue for life. My friend Janessa said the other day, "Rockin' Moms pretty much stick together like the Goonies."

 

If you are just starting out on this journey and haven't found yourself in a support group, I encourage you to contact DSDN so they can get you in a Rockin' Moms group!

 

To all of my Rockin' Moms:

Thank you for always being there no matter what. You are so important to me and I feel very blessed to know you all. I love you, and I love your children. XO

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Turning 2!

I really wanted to write this post when Camden turned 2 years old, but here we are 2 months later. I had all these thoughts and emotions and started to put them into words, but it never came about. This little thing called life just got in the way. Once the holidays started to approach, I knew I would never get it done. So, now I have some catching up to do! 

For some reason I was quite emotional with Camden's second birthday. I think I cried off and on for a month before he actually turned two. Most were happy tears, but I must admit that some were shed due to sadness and fear. I couldn't believe that two years had already gone by. I thought the first year went by fast...well the second flew by in the blink of an eye. I look back on those first few days of Cam's life, and I'm amazed at how far we've come. Well, really how far I've come. I thought my life was over back then. I thought my life was going to be miserable. Hah! I couldn't have been more wrong! We are in such a great place right now. We have our bad days of course, but I'd like to meet a family who hasn't. This boy has brought our family so much joy and love. I could not have imagined how great our lives would be back then. That's why there were many happy tears.

Now for the sad. Camden has taught me patience like no other. I've learned to accept that he will do things in his own time. I've actually enjoyed having him as a baby longer. We are not the pushy type of family. With that said, I may have thrown myself a tiny pity party when he turned two. I started thinking of all the things he isn't doing. I have a 2 year old who isn't walking. Hell, he's not anywhere close to walking. He can't stand on his own. He is barely cruising. He only has about 5 words that he verbalizes. Blah blah blah. I could go on forever. I think the walking thing bothered me the most. I remember when he turned a year old that it didn't bother me that he couldn't walk. I kept saying he'll walk when he turns two. Now I say that I hope he walks when he turns 3. It's really not that big of a deal. I know that. He'll walk when he's ready. It just kind of gets to me sometimes. I'm over it now. 

Other than my big emotional breakdown over his birthday, everything has been good here the past couple of months. We spent Thanksgiving at the deer lease up in the Texas panhandle which was different for sure. It was nice to switch it up for a change, and the boys had a great time. We went to Fredericksburg  the first week of December because they always have a fabulous parade and celebration going on that we try not to miss. Apparently everyone had the same idea because it was crazy crowded. Nonetheless, we had a blast! Cam had his neurodevelopmental therapy evaluation last month and it went better than expected! I'll write more about that in another post because it's too much to explain. We've taken a break from therapy over the holidays, but we are ready to jump back in. At Cam's 2 year check up we finally got some good news. He has reached 20 pounds! Woot woot! I never thought I would be so excited to have a 20 pound two year old. Lol. He's still not gaining a lot,  but we're not worried. He's just a tiny squirt. Christmas didn't go exactly as planned because poor Cam decided to be sick. I wasn't able to get many pics because I was trying to take care of Camden. All of that did not bother Carter. He was happy as a tick opening his presents! Then the new year came and I got the flu. Man, was I miserable! I finally feel better and now it's time to get my booty in gear! 

Camden has an ENT and cardiology appt this month and hopefully we'll get some good news. I'm trying to keep him in a little bubble so he doesn't get too sick. It's been a yucky winter so far! So many of his friends have been hospitalized already, and we are praying there aren't any others.

Sorry for the quick update, and I promise to blog more often so I don't try and cram everything into one post! 

 We hope everyone enjoyed the holidays and are having a good start to the new year! 

Out of the Closet

In almost two years we have never had someone approach us and ask if Camden has Ds or mention anything about it. I always wondered when that first moment would come. I'm sure people have noticed or assumed, but probably just never said anything. Last month we were finally "spotted" at the grocery store while searching for milk. An older gentleman came up to Camden and just starting smiling and telling him how wonderful he is. He asked me how old he was and kept saying how "special" he was. I knew right then that he probably knew. The gentleman went on the tell me that he and his wife had fostered many children several years ago and how they all had special needs. He kept talking about this one child in particular and how she had a hole in her heart, and that it closed up without surgery. He then asked me about Camden's heart and at that moment there was no doubt that he new that Cam has Ds. He ended the conversation by giving me a hug and telling me how blessed I was. There was no mention of Down syndrome during the conversation, but there was that connection. My friends and I always say it's like a secret club. It was nice to finally by approached by someone in that "club".

 

Then just a few days later it happened again, and it was another older gentleman. I was eating breakfast out with the boys and this man walked up to Camden and started talking to him. He said that Camden kept staring at him while he was eating, so he had to come over and say hi. He also asked how old he was and then continued to play with him. Then he said, "I'm glad your mommy let you out of the closet so I could see you." At this moment I really had no idea what this guy was talking about. It was a bit awkward and I just smiled and said "Yep, I let him out." Then he went on to say that back in the day parents locked them up in the closet and never let them out in public. After that I realized that he knew. I suppose he wasn't saying anything bad, he was just very blunt. He then praised Camden for how well he was doing. Before he walked off he told me that he's doing so great and to keep up the good work. Hmmm. Thanks...I guess? I suppose he thought he was doing so great because he could actually eat pancakes? Or maybe it was because he would laugh and smile and interact? Or perhaps it was because he would scream and throw food across the table? It was interesting that he said that because it made me realize that there are many people out there who have certain perceptions about our kids. That is why I want to try and change how the world views Down syndrome. I want to squash the stereotypes.

 

I'm glad I let you out of the closet too, my sweet boy!

Photo Catch Up

I have some major catching up to do from the past two months! It's been crazy busy around here, but I think it's probably the same for everyone this time of year. We've had a lot of illnesses in this house, mainly Camden, but it hasn't been anything too serious. We've also been having some much needed fun!

 

Last month was the DSPNT Buddy Walk and we had a blast. It was a bit drizzly and cold, but it didn't stop the kiddos from having a good time! Buddy walks are held all over the country and it is a way to raise money for local organizations, to celebrate our loved ones with Ds, and to help spread awareness/acceptance. I get excited when this time comes around because I know I will get to see some of my Rockin' Moms and their littles from out of town! I didn't create a team for Camden this year because I was still uncomfortable with the whole thing. I really don't know why, but I felt bad for asking people to donate money or to walk with us. I need to get over it. A couple of my close friends found out about it and decided to walk with us anyway. It really did make my heart happy because I realized that so many people love Cam. So, next year there will be a Team Camden!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We made a trip to the pumpkin patch with our friends. It was Camden's first time and he definitely loved the pumpkins. He tried to throw all the ones he could pick up. I'm ready for the throwing phase to be over! It was pretty hot for October, but we still had a good time!

 

 

 

 

 

 

 

 

 

 

 

 

Every year we go the State Fair, and this year was no exception. I was really looking forward to this year because Camden was a little bigger and would enjoy it more than last year. The fair is one of Carter's favorite places to go during the year. He loves the rides and playing the games and throws a little fit if we are doing anything else. He is also a fan of turkey legs just like his daddy. He insisted on having his own even after me telling him multiple times that he couldn't finish it. "But I'm five now, and I'm big."  We got him his own turkey leg...and he didn't come close to finishing it. Daddy was happy to eat it for him. Camden loved riding the little rides. He used to have a fear of motion, but I guess he has gotten over it because he just laughed and smiled the whole time! I'm already looking forward to next year!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Camden had a GI appointment recently to check up on his weight, reflux and constipation issues. He gained a few ounces and still weighs 19 pounds. Yep, I have an almost two year old that only weighs 19 pounds. I want to hit that magic number 20! It just sounds better. The doc gave us samples of some dairy free supplement drinks to try. Camden is NOT a fan! He liked one of the juices okay, but it costs over a $100 for a case. Ummm, no thank you. We will just keep trying. He is on Prilosec still for his reflux. He doesn't spit up a ton, but it comes up and then goes right back down causing pain and sometimes aspiration. The constipation is still a problem and we have tried without medication to fix this, but it's not working. I've given in and decided to do Miralax. I'm not excited about it, but we will try and see what happens.

 

 

 

 

Halloween was a lot of fun this year too! It was Carter's idea to be Batman and he wanted Camden to be Robin. I thought that was very sweet and cute. Camden isn't walking yet, so I pulled him in the wagon and he had a blast! He was babbling, smiling, and laughing the whole time. Carter on the other hand, was done after only 30 minutes. He kept saying that he was ready to go home. I made him tough it out a little longer despite all his complaining. I'm such a mean mommy!

 

 

 

 

 

 

 

We tried to spend a lot of time outside before it got too cold.

 

 

 

 

 

 

 

 

 

 

 

 

 

Camden has been in full blown toddler mode. He is a master at destroying the house and will even look at you and smile before and after he does it. Little turkey!

 

 

 

We got to go to Kennedy's birthday party last month. Her mommy is a Rockin' Mom that I met online only a couple of months after Camden was born. We try to get together every couple of months since we are not that far away form each other. We also got to see sweet Allie and her Rockin' mom too!

 

 

 

 

 

 

We have been to see Santa already. We get a little excited around here during this time of year!

 

 

 

  Camden has really made some big strides in the development area. I walked in to a little surprise a couple of months ago while he was supposed to be napping. He was standing in his crib! It was the first time ever that he had pulled to stand all on his own. He then started pulling up in his crib almost every time you put him in it, but he still couldn't pull up anywhere else. A couple of weeks ago he started pulling up on everything! He pops up like he's been doing it forever. It seems crazy to say that my 23 month old just started pulling to stand, but we couldn't be more proud! He has also picked up about 10 more signs and he's now using them without me prompting him. He will point to his shoes and sign "shoes". He will now sign "more" when he actually wants more of something. He signs "bath" when I'm running his bath water. You get the point. It's exciting to see him put it all together and communicate with us! He has also verbalized a couple of new words such as "car" and "yes". Every time we walk by the men's department in a store he always signs "daddy". It's so sweet. He is starting to actually play with his toys appropriately now. Most of the time he would throw them, bang on them, or just not play with them at all. We're making progress!

 

 

 

 

 

 

 

 

 

 

 

My wonderful friends at DSDN are doing this great holiday card campaign again this year. When you send out your holiday cards, consider including your medical providers and other professionals too. We will be doing this again this year and I encourage you to join!