Size 2 Shoes

I've mentioned several times in the past how much it used to bother me when people constantly commented on how small Camden is or asked about what he was doing developmentally.  I always left the conversation feeling a bit sad and frustrated. These conversations and comments haven't stopped, but there are three things I've noticed lately:

1. I don't bother explaining why he's small or why he hasn't reached a certain "skill" yet.

2. I don't feel the need to blurt out "he has Down syndrome!" to every stranger I encounter.

3. I can smile (and sometimes laugh) about it instead of cry.

 

I always do my grocery shopping at Walmart because it's really the only place in town. I'm there probably 3-4 times a week because I seem to forget something from the previous trip.  I always do the self checkout no matter how many groceries I have because there's several available.  I like being in control of scanning and bagging my own goodies. I'm a little obsessive about some things.  Anyway, that's another topic. I see the same two ladies every time that work in the self checkout area.  They know me and my boys pretty well by now and are always excited to see Camden. I don't think they know he has Ds, or if they do they haven't mentioned it. Since Camden was very young they would always ask me the same question "How old is he?" I then answer and they give me the same response, "Oh... he's soooooo tiny! He's soooooo cute!" I would say thanks and smile but really wanted to scream "I get it lady...he's freaking small...I know!"  They really are the sweetest ladies and I know they were not trying to be rude.  I just got tired of it sometimes, you know? After Camden turned a year old the conversation changed a little, but not much. "How old is he? Really?! Oh he's sooooooo tiny! I bet he's walking all over the place!" I always reply with a simple "no...not yet." Then they tell me he probably will get up and start walking tomorrow.  I then say "it's possible, but I doubt it". Now at 18 months old we are still having the same conversation. It's part of my grocery shopping routine. I'm really waiting on the day they start asking me why he isn't walking yet.  I suppose our talks will be a little more interesting then. Lol.

 

 

The other day I was shopping in a children's store in the mall and Camden was reclined in the stroller passed out. I kept noticing a woman walking by us and she would glance down at Camden each time.  In my head I'm thinking that she must have a little one with Ds and that maybe she wants to approach me about it.  I haven't had that moment with a stranger that's also in this "club" and I thought this was it! I went about my business and she finally came up to me.  She asks "what size shoe does your son wear? He looks about the same age and size of my little boy (who was not with her) and I wanted to get him some shoes."  I kind of stood there for a second and then replied "he wears a size 2." She said that she thought her boy would be a size 2 as well. Then she says her son is 4 months old and asked if that's how old Camden is. I almost choked because I started to laugh. She looks at me like I'm nuts (probably because I busted out laughing).  I then told her that Camden is 18 months old. Her eyes got so big. You could tell she was in shock and that she also felt really bad.  She tried to apologize and make me feel better by saying her son was just so big for a 4 month old and so it's hard for her to tell with other babies. I tried to let her know that it was totally fine and that I was not offended a bit. That's the honest truth. She thanked me for my help and walked away and I went about my shopping.  It feels so good to be able to just smile and sometimes even giggle about these things now. 

 

 

I mean...really?!?! Does this kid look like a 4 month old?! Obviously he does when he's asleep!

 

 

 

Edit: I wrote this post yesterday. We were grocery shopping this morning and of course I ran into the same sweet ladies at the check out. The conversation actually changed a bit. "How old is he? Oh wow...he's sooooo little. Is he talking? Walking?" 

Now I'm going to have to explain the walking and talking thing. Blah.

 

Then and Now

Then:

 

I was scared.

I felt alone.

I was heartbroken.

I felt like I disappointed my husband and Carter.

I wanted to run away.

I cried constantly.

I was angry.

I thought life was unfair.

I hardly smiled.

I'm pretty sure I was depressed.

I couldn't see any positives in my life.

I dreaded the future.

I was stressed and exhausted.

I hated Down syndrome.

I loved my son with all my heart.

 

Now:

 

I am still scared.

I worry about the future.

I know that my husband and Carter are far from being disappointed.

I only cry every once in a while (it's not often).

I feel full of joy.

I smile all the time.

I am still stressed.

I am blessed more than I ever thought possible.

I have fun.

I am lucky.

I know I am not alone.

I have many new friends that are like family.

I love my life.

I embrace and accept Down syndrome.

I love my son with all my heart.

 

 

It's amazing how much has changed in 18 months. We've come a long way and I wouldn't change a thing.

Almost Wordless Wednesday

Several months ago two amazing moms who have become dear friends started a project. They began collecting stories from moms like myself to put together into a book. I've come to know all of these moms very well over the past year and they are some of the most inspiring and incredible women I have ever met. Unexpected is a collection of real life stories about receiving a diagnosis of Down syndrome and all of the emotions and feelings that surround that journey. Unexpected is available as an ebook on Kindle here and you can also buy it in print from this site. You can also read all of the stories on the Unexpected website. This was truly a labor of love and I'm proud to be a part of it. Thank you to Jen and Joelle for making this happen!

 

And of course...pictures! 

 

 

 

New Things

I want to preface this post by saying that a lot of these things probably seem very small and trivial to most, but they are huge for us. We've been waiting months for Camden to do something as simple as clapping, so seeing him do it now makes us overjoyed! Besides getting into a sitting position, I feel like he hit a plateau for many months. There were not a lot of new skills happening and some were things I had long expected to see by this point. Well, after our much needed break the clever boy started showing us things that he has been hiding inside. It's been very exciting to see new accomplishments!

Gross motor:

There is really not a whole lot of new stuff going on in this department. This is still very much his weakness. He actually has pretty decent tone, so I still think it's a matter of him being an observer. He has found a way to move some by belly diving and then sitting up...belly diving and then sitting up...and so forth. He will do this over and over to get to something. He will not stay on his belly to attempt to crawl. He can't cover much area doing this, but he does get around. 

He is also trying desperately to pull himself to stand. He can do it if you set him up and support him, but he can't fully do it on his own. I think he will actually accomplish this one soon! 

We are doing a lot of bench/stool sitting to help strengthen his core. I couldn't find our little stool the other day, so we improvised with one of our many empty coffee cans. He actually enjoys this and will sit on it forever if you let him.

Social:

It has been fun to watch Camden grow in this area. He's always been a social baby and would interact with you through his facial features. Now he has started really engaging with others. He finally started clapping. He did this once or twice before several months ago, but then it stopped. Now he's doing it all the time. It's a small thing, but nice to see!

He also waves hi and bye now. Again, he did this a couple of times before but it stopped as well. He does it a lot now. He actually will say "hi" occasionally when he's waving too! I didn't know he could do this until we were in the grocery store and he started waving his hand and saying "hi" over and over again. I thought he was just making random noises and movements and then I noticed a lady behind me was waving at him. That was a proud moment for this mommy.

He also has recently found his love for the all time favorite game of "peek-a-boo". He gets very excited with this one. He doesn't want you to uncover your eyes yourself though, he prefers to move your hands for you. That's what makes him really happy!

 

 

This boy also loves music and dances all the time. He's developed a new little dance whenever he hears a song and it's super cute. Sometimes he rocks his body to the music but usually it's the arm dance.

 

Feeding:

We have progressed a lot in this area, but now there are some behavioral issues that are making feeding times stressful. We have been completely off bottles for a couple of months now. We only use straw cups and he rocks it in this department! However, he still wants you to hold the cup for him. Ugh. We are working on it. He has also started self feeding and even using his pincer grasp. We are not using utensils yet, but that's okay. Self feeding was a huge accomplishment for him! With all that said, I'm having troubles getting this child to eat now. He spits food out all the time. He covers his mouth and shakes his head "no". He throws up his arms saying "all done". It doesn't happen all the time, but it is a lot of the time. I think it's a phase and just typical toddler behavior (I hope) so we will just work though it.

Speech:

There has been little progress in speech, but any progress is good. Camden has about five words that he has verbalized appropriately which are "milk", "ma ma", "bu bu", "uh oh", and "hi". He does occasionally repeat words but then does not use them again. We are lacking a little in the signing department too. However, he really had no signs before, but now signs "milk", "all done", and "dog". He has found his pointer finger and loves to point to things and hear me tell him what it is. He knows the Korean word for nose (ko) and will point to it when you use the word. I have to give my mom credit for that one. 

All in all I'm so proud of my sweet little man! I know he will accomplish many more things and I can't wait to share those moments with him. He is turning into a toddler more and more each day. It's so hard to believe he's not a baby anymore. Sniff sniff. I have a feeling that Camden is going to keep this mama pretty busy!

 

A Nice Break

We've been on a nice little break from almost everything. I took a couple of weeks off from all social media because I felt like it was consuming me. I cancelled all therapy appointments the past month because I was either dreading them or getting depressed after. I mentioned I was in a funk in my last post and that funk went on longer than expected. That was when I decided I just needed to recharge and it absolutely helped. I think my boys were grateful too. 

We went to Fredericksburg (which is down in the hill country part of Texas) a couple of weeks ago for a few days. We usually try to go once a year. It's a cute little town with lots of wineries, shops, and beautiful scenery. This little vacation was much needed by the whole family. 

Here are a couple of the spring pictures we had done of the boys. The best pics were when they weren't looking. Carter does this weird fake smile now and Camden just stares at you like you're nuts when you are trying your hardest to make him smile.

Easter was great despite the gloomy weather. The egg hunt ended just before the storm hit. We got to see Rylie, but Ryan couldn't come this time. Carter loves spending time with his big bubbas. It's nice to watch their relationship grow as he gets older. The boys got to spend time with their Uncle Tommy and soon to be Aunt Amy too. 

We have been able to spend a lot of time outside lately and I'm loving it! This time of year is perfect. Once June hits we start with the 100+ degree temperatures and it's steamy hot.

The great thing about this little break was that Camden's skills really started to come on like crazy. He's done more new things these past few weeks than he's done in months. A lot of them were little things that we've been waiting forever for him to do. He did this before a while back. Once I backed off and took a break from things, he would bust out a new skill. I think he can feel the stress and frustration from me at times. I promise to write all about it in my next post. I will say that he definitely moves now. He's not crawling or scooting, but he has his own crazy way of getting around. There is no more of sitting him down somewhere and expecting him to stay there! 

It was a good break!

Brothers

I've been in a bit of a funk lately. Every time I sat down to write, I couldn't think of anything positive to say. My posts aren't always rainbows and sunshine, but I just really didn't want to write another negative post on the same subject matter. I have been able to accept that Camden will do things on his own time, but some days it just gets to me. When I see that he isn't reaching certain milestones yet, it stings a bit. You've heard me harp on this subject before and that's why I didn't want to write about it again. So, I've been trying to shift my mind to positive things these past couple of weeks and just couldn't seem to do it...until the other day.

I was watching Carter and Camden playing together the other night and it brought tears to my eyes. They play together every day so this wasn't something new. I got a little emotional because I started thinking back to Camden's birth and about all the crazy thoughts that swirled through my mind. I've said before that I was devastated at first. I wasn't just devastated for me though, I was hurting for Carter as well. I felt like I let him down. I thought I messed up and didn't give him the perfect brother that he deserved. I worried constantly about what kind of life Carter would have. He has his two older brothers and he adores them both, but the age gap is so wide and he doesn't get to see them much. I was so excited that he was going to have a little brother that he could play with, wrestle with, argue with, laugh with, and do all of the other things that siblings get to do together. After Camden was born I thought that dream had died. I really thought Camden would be a burden to his older brother. I thought that they would not get to play like brothers do. I didn't want Carter to resent Camden. I only wanted him to love Camden with his whole heart. I know now that these thoughts are silly and even a bit crazy, but that's honestly what I felt for a very long time. From the beginning Carter has been very protective of Camden. He would always check on him and comfort him if needed. Carter came to every doctor's appointment without complaints. Sure he got a little jealous at times, but I think all siblings probably go through that. As Camden has gotten a little older, the bond continues to grow stronger between these two boys. They get mad at each other like siblings do. Carter takes Camden's toys and makes him scream until he gets it back. Camden makes Carter mad when he pulls his hair. They laugh together every day. No one can make Camden laugh so loud as much as Carter can. They make each other smile. Carter holds Camden on his lap every evening and bounces him until they both get tired. Carter teaches Camden sign language and reads to him. The bond between these two is indescribable and it brings my heart so much joy. Carter does not see him as different. He doesn't understand that he has Down syndrome. We have tried to talk about it and his response is always "he's just a baby, that's why he can't do that yet." He thinks all babies have Ds. I know this will change one day as they both get older, but the unconditional love between these two brothers will remain the same.

    

 

 

 

Why I Do It

Since Camden was born I have tried to advocate and spread awareness when I can. All of my friends with little ones with Ds try to do this. Many of them have said that friends and family members get annoyed or tired of all the "Ds posts" on Facebook or wherever. I have had a couple of people hint at that to me as well. I know my friends and family have accepted Camden right from the start. They love him and support him no matter what. They do not see him as different. He has been accepted and included in all things. They don't need to see all of my posts on social media because they get it and I love them for that. Not everyone out there feels this way though. There are still misconceptions, ignorance and hate. Camden will not be accepted by everyone. People may (probably will) make fun of him, call him names, not include him, and see him as different. That is like a knife to my heart. This is the problem. A problem that myself and many others are trying to change. This is why you may see lots of posts on Ds. This is why I ask you to sign and share things that are important to me such as the ABLE act. This is why I ask you to stop using the "r" word. It's not because I'm too sensitive, it's because it's offensive and hateful. I am passionate about advocating. That will never change. In fact, I want to do more (and I will) but I just haven't had the time. So, I will continue to promote awareness and to advocate every single day of my life until Camden has a voice and can do these things for himself. Simply put, this is why I do it.