Thursday, August 27, 2015

Good Bye Summer

I still can't believe summer is over!  It went by so darn fast.  I think I say the same thing every year, but this year it really did seem to fly by.  I always have good intentions of doing fun and exciting things with the kiddos, but I will admit a lot of that didn't happen.  It's just soooo hot here!  It's hard to do a lot of things outside when it's 105 degrees.  We did the usual things like museums, water parks, zoos and parks.  I tried to keep Carter entertained the best I could.  If we weren't doing something that day, he wasted no time in telling me how bored he was.  It didn't matter that we just went to the zoo the day before, the kid had to be constantly entertained.  By the time August came around, I was ready for him to go back to school just so he had something to do! 
We always try to take a summer vacation every year and this time we went to California.  We spent half the time in the southern part of the state and the rest up in San Francisco.  As excited as I was about this trip, I was terrified of the plane ride there.  I've always been scared of flying.  It makes me sick to my stomach, and I usually end up crying on the plane.  It's ugly.  I really don't have an explanation for it.  Having the kids was a nice distraction because I was constantly having to take care of them and it let me take my mind off my fears. I didn't cry, but I still felt sick.  It was the first time for the boys to fly and I must say they did great.  Carter only had issues during the descent which caused his ears to hurt.  I thought I was Super Mom and that I had it all under control, but everything I tried didn't help.  He cried for 30 minutes and all I could do was try to distract him.  This has made him scared of planes now, and he says he's never flying again.  Sigh. 
We spent a lot of the time hanging out around Long Beach.  We didn't want to pack our days full of something to do because we actually wanted it to be a relaxing vacation.  Downtown Long Beach has a really great area by the bay and there's restaurants, shops, an aquarium, and a boardwalk that you can walk on to get to everything.  The weather was lovely.  It was in the 70's pretty much every day.  The aquarium was one of the first things we did because a certain 5 year old insisted on it.  Carter has a love for sharks, whales and fish.  Camden enjoyed it, but I think he would have been happy no matter where we were.
We spent a couple of the evenings just hanging out on the boardwalk.  We would eat dinner and then go for a walk.  We checked out the cute little shops and tried on some fun hats.  We also took a boat tour and I think that was one of Carter's favorite activities.  He got so tickled seeing the sea lions lounging on the buoy.
We were only 30 minutes from Disneyland, so that was a must!  This would be the first trip to a Disney park for the boys, and we were so excited for them.  Camden loves everything Mickey Mouse and he was beyond excited to see Mickey in person!  Carter was excited to ride all the rides, but we only made it on a few of them.  I didn't realize how crowded it gets there! It was also their 60th anniversary, so it was even more crowded than usual.  Camden was not a fan of the heat and even though we tried our hardest to keep him cool, it wasn't helping.  He became very cranky toward the end of the day and we had to cut the visit a little short.  Camden did love the rides though, and he would just laugh and smile the entire time.
We decided to do a hop-on and hop-off tour from Santa Monica to Hollywood.  It was rainy that day, so we didn't get to do much.  We did walk around a bit and saw the stars on the Walk of Fame, the hand prints and footprints at the Chinese Theater, and the Hollywood sign.  The rain did not stop the tourists.  The streets were packed, and after about an hour we were ready to go.  We ran into Bumblebee and a Jedi Knight during our stroll!
We drove up to San Francisco for the second half of the trip.  Richard and I had been there before with his older two boys, and we really loved it.  I also have some good friends and Rockin' Moms that lived up that way, so we thought it would be fun to stay there for a few days.  I'm disappointed in myself for not getting more pictures in San Francisco.  I'm not the best picture taker.  We spent a day hanging out at Pier 39 which was a lot of fun.  There are street performers, restaurants, shops, sea lions, and much more.  We also spent a day meeting up with some beautiful mamas and their littles!
I've known these Rockin' Moms for over 2 years now, but it was the first time I would get to meet them in person.  I always feel so lucky when I get to hug them in real life!  We were also able to have a mom's only dinner that evening and it was a great way to end the last evening of our trip!
The boys and I went to Austin the week after we got back from vacation to meet up with more Rockin' Moms and littles.  There are so many of us that live in Texas and we were finally able to plan a meet up.  Some families I have met before, and some it was the first time.  It was fun to just hang out all weekend and visit.  If it weren't for Camden, I would have never known all these amazing women.  They have truly been a blessing to me!
School started this week and Carter is loving it!  He's been counting down the days for a couple of weeks now.  He's in Kindergarten this year and he is most excited about not having to take a nap.  I was a bad mom and didn't take any pictures.  By the time someone reminded me, I tried to snap one and it came out all blurry.  I'm telling ya, I'm terrible about taking photos! 
We have decided to take a break from doing Neurodevelopmental therapy with Camden.  I wasn't committing the time I should have been, and it just got exhausting.  I was really torn with the decision because I felt like he was doing really well on the program.  They said we could pick right back up if or when we are ready.  I didn't want to go back to ECI, so I decided to start private therapy.  He will get physical, occupational and speech therapy every week.  Even though we are still doing some type of therapy almost every day, it's not just me doing it.  It's nice to have someone else there now to help.  Once he turns 3 years old he can start PPCD (preschool program for children with disabilities.)  We have already met with the coordinators and therapists just to see how things work.  They will do an evaluation in a month to come up with an IEP (individualized education program.)  This will tell us what Camden's needs are, the services he will receive and how his progress will be measured.  I can't even wrap my brain around the fact that Camden can start school in November.  They said he could ride the bus to and from school and that just blew my mind!  He's still so tiny and I have a hard time being at ease with him on a bus.  They do have an aide and proper seat restraints which is a little more comforting.  The school is 25 minutes away.  I get anxious just thinking about it.  We could drive him, but then Carter would have to go to school 45 minutes early every day.  I don't know what the right decision is.  A few of our friends have already started this process and some of their kids ride the bus.  They seem to do just fine, so maybe it's something that I need to get over.  We have not decided for sure if Camden will go to PPCD.  A part of me wants to try it and see how he does.  I feel like he needs the social interaction and that maybe he would do good in a structured class setting.  Homeschooling is always an option for us, and if we need to do it, we will.  My ultimate goal is to have him in an inclusive classroom setting for kindergarten.  I want him to be able to go to school with his brother.  Carter is in a great school.  It's a small school though, and they don't have special education classes.  If Camden has to go to a separate school half an hour away for all of his school years, I will probably homeschool him.  Again, our goal is to have him in school with his brother in an inclusive setting.  I know we have a couple of years, but the next couple of years are so important in getting him ready. 
Camden is still not walking and I would be lying if I said it didn't bother me.  I don't shed tears over it, but it still gets to me.  I know he will do it.  I get that.  But when?  A few people have told me that they know of a child with Ds who didn't walk until they were 4.  I can't imaging going another year waiting for him to walk!  I'm glad he doesn't weigh much because carrying him around everywhere gets so tiring.  He will walk pushing a walking toy.  He will walk when holding my hand.  So, I feel like it's close, but yet it seems like it's so far away.  Sigh.  He did start getting into a standing position on his own and he does it for longer periods of time now.  He has taken one step, but that's it.  I will continue to wait patiently.
I have thought about giving up on this blog.  I can't seem to keep up with it, and when I try I always get distracted.  I have decided to continue to share our lives with you and I hope I can be more consistent in keeping it updated frequently.  Thanks for stopping by!

Sunday, June 21, 2015

"Car Go"

 I've been trying to write this post for a few weeks now, but I always seem to get distracted. I realized that I haven't posted any updates on Camden's health, therapy, and just life in general. I'm going to try and squeeze it all in, so it may be a bit long.
We have finally had a break from all the rain! Texas saw record rainfall totals for the month of May, and there were times I thought we were going to float away. There were several areas with flooding and damage. It felt like it would never stop. We have spent the past 5 years praying for rain, and we finally got it! Lakes that were 20 feet low are now full, and some lakes are even 10-20 feet above normal. The great thing is that our ponds are full for the first time in 5 years, and our wheat crop is the best it's ever been.
Carter finished up his year of Pre-K and really loved it. I know it's only Pre-K, but he went every day with the rest of the school. It will definitely make Kindergarten a lot easier for him and me. We live in a very small town, and the school is small as well. I'm talking Pre-K through 12th grade in the same building kind of small. This was very strange for me at because I always lived in the big city. I will admit that I was hesitant at first to send him, but I really love this school. Really really love it. I'm hoping and praying that Camden will be able to attend this school with Carter. I get much anxiety thinking about Camden being somewhere else. (I'll save all that for another day.) Carter also played T-ball for the first time this year. I have to say it's pretty fun watching the little kids chasing butterflies and playing with bugs during the games.
Camden had a cardiology appointment back in January, and it went very well. All of the previous appointments the doctor always said "I don't think he will need surgery." This time was the first time that he said "I'm confident that he won't need surgery." This was music to my ears!!!! He does still have the hole in his heart (VSD), but it's restrictive and is not causing any problems. The hole has gotten a bit smaller, and we will continue to follow every 9 months.
Camden had his adenoids out and got a new set of ear tubes in February. It was just a day surgery, and he did very well. He did end up getting sick a couple of days after, which was a bummer. Hopefully he won't need his tonsils out, but it's a possibility.
He also had a GI appointment recently and he weighed a whopping 22 pounds! I know it doesn't seem like much, but it was huge for us! Camden has always had difficulty gaining weight, but the doc was pleased. We have also weaned him off of his reflux medication. He is currently taking no meds. Yay!
The boys have been able to spend a lot of time with their big bubbas.
We have been lucky enough to visit with some Rockin' Moms and their littles. One mom recently moved back to Texas which means we will get to see more of them! I love our little family!
We own a fireworks business, and the month of June is spent getting ready for that. Richard has been working hard on building two new stands. A couple of our fireworks stands were blown over and ruined by the storms that came through last month. We start selling June 24th and sell every day until July 4th. It's a long and brutal 11 days, but luckily we have had an awesome couple that has been running our stands for the past several years. With all the rain, it should be a good year.
We've been spending time outside when we can. With it being close to 100 degrees every day and the humidity being out of control, it doesn't happen often. 
  We took a little 4 day vacation down to Kerrville, TX with one of my hubby's good friends a couple of weeks ago. The kids had a blast and it was Carter's first time to fish by himself. He was so proud of all the little perch he caught. The only thing he wouldn't do is bait the hook with the worms. He said it was too yucky. We did learn that Camden is not a fan of live fish! We may or may not have thrown the fish at him a few times. I know...we're bad parents.
We are still doing Neurodevelopmental therapy with Camden. I do like it, but it can be time consuming. I haven't been consistent with it the past couple of months, but I'm working hard on getting back on track. Honestly, it's nice to take a break from it all every once in a while. We are going to start private physical therapy because he is lacking in that area. We will probably start in a couple of weeks. Camden is still not walking or even standing independently. He is getting stronger and cruises everywhere and will hold our hands to walk. I'm not concerned since he is progressing, but it's just been such a slow process. I know he will do all of those things. I don't doubt that. It's just hard to know that you have a 2 1/2 year old who can't do those things yet. I would be lying if I said it didn't bother me. I hate that it has to be so hard for him. I hate having to explain why he isn't walking yet. Sigh. It will happen.
Speech has been improving a lot lately. I feel like he is verbalizing a new word almost every day. They don't always come out properly, but you can tell what he's trying to say. We have been doing sign language with him since he was a baby. Correction...Rachel Coleman with "Baby Signing Time" has been teaching him how to sign. That is his favorite show to watch and he could watch them all day if you let him. He easily knows over 100 signs, and even knows ones that I don't know. That makes for a very frustrating conversation between the two of us. He now tries to verbalize a lot of the words that he signs. He recently said his first two word sentence. He kept saying and signing "car go" over and over again when we were at the grocery store. I didn't really think anything of it until he wouldn't stop saying it. He was not happy being in the store and was trying to tell me that he wanted to get in the car and go. Silly boy. I don't like grocery shopping either!
One of the exercises that we do on his therapy program is Auditory Direction. It works on getting him to follow commands and direction. He has always loved this activity and we both have fun doing it.
Sheesh. Sorry for the long post. I could write more updates, but I'll save that for another day. The summer has started off crazy busy, but we're enjoying it. Once fireworks ends, we will go to California for 9 days. We are all looking forward to this trip. Disneyland, the San Diego Zoo, San Francisco, and Long Beach are just a few things that are on the agenda! We'll also get to meet some more Rockin' Moms in person. Hopefully we'll survive the heat and craziness before it's time to go!

Tuesday, May 5, 2015

Conquering the Pig may seem silly to write a blog post about a toy pig. This isn't just any pig though. This particular pig has been in my life for over a year now, and it has been my nemesis from the beginning.
This toy was recommended to us by Camden's occupational therapist a while back. The pig is supposed to be great for working on fine motor skills. I think almost every friend I have that has a child with Ds either has or had this lovely pig at one point in time. I don't even know where we got the thing because I never see it in stores. I'm sure it was one of many purchases from Planet Amazon. I bought the pig with excitement and was ready to see what all the hype was about.

I have disliked this pig since day one. It looks like lots of fun, but it's deceiving. You put the coins in the little piggy's back while it plays fun music. Easy, right? Hah! Sure, it may be easy for a lot of your kids. Just put the coin in and enjoy. Nope. Not at our house. For those of you who have the pig, and have struggled with the pig, know what I'm talking about. Camden tried one time on his own in the beginning. He was pretty young, so he couldn't quite get that blasted coin in. I would guide his little hand to the slot and help him put it in. After about two times, he got frustrated and gave up. He would then just throw the coins. All 10 coins thrown all over the room. Coins under the bed. Coins in the trash. Coins in the laundry. There were plastic coins everywhere. I wasn't going to give up though. I was determined to beat that pig. We worked on it frequently, and each time he still couldn't get it. There was that little smirk on that piggy's face, and it was like he was laughing at me each time.

Even though I despised that little pig, we kept doing it. I just knew he would get it very soon. Each time Camden would try one coin. He still couldn't get it in, so the throwing commenced. Sometimes he would throw the coins at the pig. He would bang the coins against the pig, and sometimes would toss the pig across the room. I must admit that I got some sick pleasure out of him beating up the pig. Take that, you pink little plastic pig!

We put the pig away for a couple of months. He didn't seem interested in it, and we all know how I felt about the thing. Well, the other day I decided to let the pig come out and play. I'm happy to report that Camden has FINALLY mastered that stinkin' pig!!! He can get those coins in like nobody's business! I must say that the pig and I are now besties. We play together almost every single day. Oh, and I'm so proud of you, Camden!


Sunday, May 3, 2015

He Is Who He Is

I believe that all children, and adults, have their own strengths and weaknesses. When Carter was a baby, gross motor activities were definitely his weakness. He was not the baby that sat up early. He was not an early walker. I remember my friends had babies that walked at 10 months, but not Carter. I don't even think he was crawling at 10 months. It was more around a year old. He finally took his first steps around 15 months, and became a full time walker at 16 months. It wasn't abnormal, but it was later than most. When he wasn't saying many words at 2 years old, people expressed their concerns to us many times. We had him evaluated for speech therapy twice, and he did not qualify either time. His receptive language was always off the charts, but his expressive language was lacking. We let it go and decided he would get there eventually. He didn't say much at 2 years old, but he knew his colors, shapes, abc's, and numbers. That was his strength. He now talks NON STOP at five years old. His coordination, however, is not the best. Apparently he still struggles with gross motor skills. That's just him.
When Camden came along it was a little different. We knew that he would have delays in motor skills and language skills. There's a wide age range of what's considered 'normal' for kids with Ds. For example, standing alone can happen anywhere from 1-3.25 years. Children with Ds can say their first word or walk alone anywhere from 1-4 years. It's a big range. The term 'high-functioning' and 'low-functioning' gets thrown around a lot with kids with special needs. I wouldn't say that I hate those labels, but I don't particularly care for them either. We don't go around measuring the functioning of our typical peers. Heck, I'm barely functioning most days, but my friends don't say "Diane is low-functioning."
I bring this up because we had a couple of different experiences in the past couple of months. Camden had his adenoids out in February, and it was the first time anyone mentioned his 'functioning.' We were in the pre-op room getting him all prepped and I turned on the TV for him. I found Mickey Mouse Clubhouse (which happens to be his favorite) and he instantly smiled and started clapping. He raises his arms and says "key", which is his word for Mickey. The nurse looks over at Camden smiling and says, "He's high-functioning, isn't he?!" She was being very complimentary and sweet, but I wasn't sure what to say. I just smiled back and left it at that. It was interesting to see what her perspective of  'high-functioning' was.
In March I had an appointment with a new PCP and I took Camden along with me. He gets a little impatient when I keep him strapped in his stroller, so I have to find ways to entertain him. I sat my phone on the chair in front of his stroller and turned on Mickey. The doc was asking questions about the stressors in my life and we started going into Camden's birth and the diagnosis of Ds. She asked me if Camden was 'high or low functioning.' I was kind of in a moment of shock by the question. Do people really just ask that? I told her I didn't know what she meant. She then says " he walking yet?"  I told her he wasn't and said that I don't really consider that a measure of his functioning. She kind of gave me that look of pity and said, "oh ok." Then she gave me a little condescending pat on the shoulder. It was a bit awkward after that and I left feeling a little disappointed with this new doctor that I chose. Really, I was pissed.
Within a month we had two different opinions of what was considered 'high and low functioning.' I don't put a label on Camden. He has his strengths and weaknesses just like any other kid. He doesn't crawl on his hands and knees. He can't walk. He doesn't stand independently. He still struggles with using a fork and spoon. His fine motor skills are still lacking. He doesn't know his shapes and colors. He does know how to bring the TV remote to us and ask for "key" or "Peppa."  He can read about 15 sight words. He knows around 60-70 signs. He can verbalize about 20 words appropriately. He gives the best kisses and hugs. His smile lights up a room. I could go on and on about what Camden can and can't do. All I can say is that he is who he is...and he's pretty perfect!

Wednesday, April 29, 2015

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.

Thursday, February 12, 2015

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.

Thursday, January 22, 2015

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 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