I'm sorry

Camden turned 5 months old this month. Seriously?! Wow, time has flown by. I remember thinking back in November when I was on bed rest that time had stood still. The events leading up to his birth and after seem like so long ago now. I have been thinking a lot about all the emotions I have been through in the past 5 months and I think I have experienced them all. I feel like I can finally say that I'm in a good place. Wait...did I really just say that? In the beginning I didn't know if I would ever feel that way. I still won't say that life is all rainbows and unicorns, but it's a heck of a lot better than it was. Slowly I have been trying to let go of all the negative. I have been harboring a lot of guilty feelings lately and it has been keeping me from moving forward in my relationship with my son. I look back on all of the things that I felt and said at the beginning and I'm so ashamed. It's killing me and I want to let it go. So, I want to tell Camden all the things that I'm sorry for so I can get them off my chest and move on. Here we go.

I'm sorry that for a second I thought I didn't want you.
This one pains me the most. I can't even type this without a dry eye. No mother should ever feel this way. It disgusts me and I'm so ashamed of myself. I know I will be judged by this statement alone. Please know that I was wrong. I did want you...I just didn't know it. Camden, I WANT you more than anything I have ever wanted in my entire life. Please believe that. Please forgive me.

I'm sorry I didn't hold you tighter and longer when I found out you came with a little something extra.
I can't have this time back. If I could I would have sat down and pulled you into my chest and just rock you as long as I could. I remember kissing you, telling you that I love you, and then putting you back inside your isolette. I was numb and in shock. I felt as if someone took a hammer and shattered my heart into a gazillion pieces. I had no idea at that moment that everything would be okay. In fact, it would be more than okay.

I'm sorry that I spent the first few months of your life crying almost everyday.
I still cry, but it's definitely not everyday. Sometimes it's not even once a week. When I do cry it's not because you have Ds. It's because I get scared of the future. It's because I hurt when you have to face a new challenge. I hurt when you and your friends are sick. I just want to protect you the best way I know how.

I'm sorry I spent some days researching more than I spent with you.
I felt I needed to know everything possible thing there was to know about Ds. If I thought it wasn't enough...I researched more. I can't even estimate how many hours I have spent on the Internet. It's sad really. I'm obsessed with wanting to know it all. Though I am now informed, it has also scared me many times. I know I will always continue to be on the Internet because I get my support through my cyber sisters. '12-'13 moms...I love you all. You have saved my life and I look forward to lifelong friendships with all of you. I will say that I will cut back on my crazed research and will spend more time soaking up your smiles than being on my IPad. I guess that means less Candy Crush too. ;)

I'm sorry I thought you weren't the ideal brother for Carter.
Boy was I so wrong on this one! Carter adores you! His eyes light up when he walks over to hug you. He tells you he loves you every day. He can't wait until you get a bit bigger so he can teach you all that he knows. You are the best brother that Carter, Ryan and Rylie could possibly have. You will teach them things no one else can. They will develop a compassion towards others that most people lack.

Last of all, I'm sorry I thought you weren't perfect.
You ARE perfect in every way. I know not too long ago I wrote that I would take the Ds away. I don't know anymore. I can't imagine you any other way. You are Camden. You were perfectly made for this family. The way your almond shaped eyes curl up when you smile is perfect. The big gap between your big and second toe is perfect. You have brought our family closer. My marriage is stronger. You are an absolute joy and blessing to us, and you are shaping us into better people. Thank you.

Now, I want to put all of these feelings in a box and lock it up. I want to put the box away and move forward. I know the road will remain bumpy, but we will ride it together. The good far outweighs the bad and that's what I want to focus on. I don't want the rest of the year to be a blur like the past few months have. I want to cherish each moment with my family. Like I always say...I'm a work in progress. I think I'm finally progressing.

Lake Time

Every year we take 2-3 mini trips to Lake Tawakoni during fishing season. My hubby has a friend who lives up there and is a fishing guide so he always takes Richard out fishing. This past weekend was our first trip there for the year and I must admit I did not want to go. It sounded good in my head when it was planned, but the closer it got to going the more I dreaded it. We were meeting Richard's good friend from Abilene and his two sons plus we had some other friends that were going too. A few days before leaving I tried to get out of it by telling Richard that I didn't mind if he wanted to go by himself and spend time with his friends. He was not liking that plan. He wanted his family there and I don't blame him. I don't know why I was dreading it. I guess I thought it would be such a hassle to take the trip. It turned out that it really wasn't at all. It took some extra packing and an extra stop on the way to feed Camden and that was it. I really am so glad we went because we needed to get away from everything and just chill out! Okay...maybe I just needed to chill out. I actually relaxed, did NO research, only got on the Internet for a bit, and just enjoyed my family. It was a much needed time off!

Camden's personality has really blossomed over the past couple of weeks and it has been so fun to watch. He started smiling a month ago but it was very sporadic and we had to work really hard to get them. Capturing a smile on camera was next to impossible! Now days he smiles much more often and is starting to giggle a bit. He was definitely happy to be somewhere else besides home and the doctors office I think!

 

 

Between all the guys they probably caught about 70-100 fish over the weekend. Richard didn't go out with the guide because he wanted to do trot lines instead. One of the boys caught a 10.5 pound black bass which is supposed to be big for that particular fish and I guess that was pretty exciting. Can you tell that I don't know much about fishing?! All I know is that we have more catfish now to put in the freezer with the others. I suppose you can't have too much fish! Carter really wanted to go with Richard to bait and check the trot lines but we forgot his life jacket. So he settled for holding the fish instead. He probably had the best time out of everyone and that alone made the trip totally worth it! I'm looking forward to going back in a couple of months!

Richard and Bill with the catch of the day

 

 

Carter claims he caught this fish :)

 

 

.

Richard and Drew pulling in the flat bottom. The

lake was so low cause we have had no rain.

 

 

 

 

The weather was perfect! It was in the 70's all weekend.

 

 

I am not happy ALL the time!

 

 

Fish, fish, and more fish!

 

 

Carter decided he wanted to run around in the water

with his socks and shoes on.

 

 

 

Carter wanted to do everything the big kids were doing.

 

 

Peek-a-boo!

 

 

Looking for frogs.

 

 

He really didn't want his picture taken with me!

 

 

I know...I know...this is not the best position for

his hips and legs. Just wanted to try something different.

 

 

Yes...he wears that dang hat 95% of the time!

 

 

 

Sweet Baby Cayden

God called home one of his children yesterday. Sweet baby boy Cayden lost his battle with life after a long and strong fight since his birth. The pain and grief that the family is enduring is unimaginable. These are the times when we may ask "why"? These are also the times when we cannot lose faith and to try and remember that even if it is not our plan, it is His plan. I sit here holding Camden extra tight as I type this not ever wanting to let him go. I want him to know how much he has blessed our family in just the short amount of time since his birth. Children are the ultimate gift. My heart aches for Cayden's family. Please keep them in your prayers.

But Jesus said, "Let the children come to me and do not hinder them, for to such belongs the kingdom of heaven."   Matthew 19:14

Getting Closer To Closure

I feel like it has been so long since my last post. Every time I sit down to blog, I get interrupted. It's just been a busy week! I think Camden is finally getting better and he just has a lingering mucousy cough. I hope this weather change today doesn't aggravate his (or my) breathing. I wish it would decide to stay one temperature...but it's Texas. We did have our first therapy session Tuesday...at least that's what I think it was. Cindy (our SST) came out and I guess it was mainly to evaluate where Camden is at right now developmentally. They base his skills on a 2.5 month old since that's what his adjusted age is. It's crazy because I never know when to expect him to reach milestones since children with Ds are developmentally delayed and because he's a preemie. Patience...patience...patience! It's a quality that I'm slowly acquiring these days. So, for a 2.5 month old she thought he was pretty much on track and was very impressed. Of course, I don't think a 2.5 month old "typical" baby does much, so I don't know if that's saying a lot. He did show her how he could hold his head up some...but he definitely can't do it for long periods of time. Tummy time will be our biggest thing to help develop these muscles. He did roll over front to back and she thought that he looked like he was using the right muscles to do so...so that's good news! The whole session lasted for about 30 minutes because Camden quickly let us know he was done. I asked her what I could work on to help him open his hands more (he still keeps them fisted a lot) and just in general what we should be doing. She responded by saying that that would be something to ask our PT about. Uh...okay. So...what exactly was this session all about? Supposedly the SST works on overall development, but...I don't even know how to finish that statement because I don't understand what they do still. The PT finally called me to set up an appointment for next week and informed me that she is the only PT for 2 counties and only works part time, so her schedule is limited. I still have not heard from the OT. This is becoming so frustrating. I'll give it a few more months and if it continues going this way I may look in to private therapy.

Ms Cindy helping Camden roll over  from back to front

Trying real hard to hold his head up!

 

 

Really mom...really!

 

 

 

Carter wanted to take a picture when we were done.

He did a good job!

 

I did buy this book because it comes highly recommended from a lot of parents in the Ds community. They also make one for fine motor skills and speech. I haven't looked at it yet, but am excited to get started!

We had our monthly cardiology appt today with an echocardiogram. For those of you who don't know, Camden has a large VSD. It was originally thought to be moderate, but after a couple of echos that does not seem to be the case. A large VSD almost always requires surgery, but Camden's situation is a bit different. He has this random tissue growth over part of the hole making it a restrictive VSD. This prevents the large shunting of blood between the two ventricles...which is a good thing. Dr. Case has always felt confident that this tissue will continue to grow as Camden grows, eventually covering the hole. Today's echo showed a little more tissue growth over the hole which is what we were hoping for. The shunting of blood is even more restricted now and he still believes that the tissue will continue to grow. I love Dr. Case because he has sat in on every echo we have had showing and explaining everything to us. Not many cardiologists do the same. He told us to come back in 2 months and we will do another echo. Yay!!!! Two whole months! That's exciting considering we were going every 2 weeks and then every month. I take stretching out the appointments as a good sign! We also weighed our boy today and he is now 12 pounds 8 ounces! Apparently being sick for two weeks did not slow him down. I can tell my baby boy is growing up because during the echo he was so active and smiling making it hard to get good pictures. Before he would just lay there and kind of fuss. It was cute for all to see!

They don't allow pictures at the cardiology office...but

I had to sneak one in!

I'm so blessed to have such a loving and forgiving 3 year old son. I have been so high strung this past week and on a short fuse. I'm just tired and worn out and sometimes I take it out on him by raising my voice or getting impatient. He will just look at me and say "momma, you don't have to get mad...it's okay." I love that sweet boy so much and he can brighten my day in less than a second. I'm so glad that we are taking a mini vacay to Lake Tawakoni for the weekend because our family needs the rest and relaxation!

Our thoughts and prayers go out to the victims and families from the Boston bombing and the West, Texas explosion. Two tragic events only within days of each other and both with unimaginable loss.

He loves his baby bubba!

 

 

Carter decided he wanted to sit in the rock n play.

 

 

 

We really didn't buy all that dog food!

 

 

 

Camden will watch Carter all day long.

 

 

 

He was naked a lot for a couple of days cause we

were too cheap to turn the AC on when it was 90

degrees outside!

 

 

I just love watching him when he sleeps...so sweet!

 

 

 

Carter walking in his daddy's shoes.

What Day Is It?

Really...what is today? Wednesday or Thursday? All the days have been running together this last week. I wouldn't really say we have been busy, but just sick. Poor Camden has been sick since Easter Sunday. It started with a stuffy nose (he's always stuffy but more so now) and an occasional cough. All of our allergies had started acting up so I figured he just had a little cold. Finally last Thursday I went ahead and took him to a walk in pedi office close to our house. Dr. Marsh is our regular pedi but his office is 50 minutes away and I didn't want to drive that far since the weather was kind of yucky. There is a new pedi that just came to town and was taking walk ins until the practice becomes established. I saw this as an opportunity to see if maybe it was worth switching pedis so we wouldn't have to drive so far. Eh...not really impressed. It wasn't bad, but I didn't really feel like it was a good fit so we will continue to see Dr M who we really like. Anyhow, this doc said that Camden had a cold and there wasn't much else to do. Okay...I accept that. No problem. So we went home and continued to do the same things to make him comfortable. Every once in a while he would seem like he was doing better, but then the next day it was back to square one. He was eating okay and was just super stuffy with a really junky cough. He would also wheeze every now and then, but in general seemed happy. He then started throwing up a little bit after some of his feeds. I think it's due to the mucus he's got in there. The other day I decided to take him to Cook's urgent care in Southlake since I was staying at my dad's and he just wasn't getting better. They thought he had RSV when they first assessed him but the test came back negative. His oxygen saturation was around 95% which was great, so no worries there. They suctioned his nose twice (like way back in there) and got A Lot of snot out. I'm sure that had to make him feel a little bit better. They did a chest x-ray which showed a little bit of yucky stuff in there, but nothing that indicated pneumonia. Yay! He got an Albuterol breathing treatment which seemed to help some and that was pretty much all that could be done. They diagnosed him with bronchiolitis which is just a fancy shmancy term for a respiratory virus. That and RSV usually go hand in hand and I've seen it land a lot of young babies in the hospital, so I'm glad we can manage it at home. We were sent home with a nebulizer and a prescription for albuterol and steroids. I'm hesitant to use the albuterol since it does make your heart race and can make you jittery. I just don't want to do anything to aggravate his VSD. I think I'll just use it if he really needs it. Last night and today he seems worse. He's throwing up more and sounds soooo yucky! He's also pretty fussy...which he never is. I feel so helpless because I don't know what to do to help him. I think it's just going to take a little bit longer for him to get over illnesses. It doesn't help that this momma is sick too. I'm just hoping Carter can stay well.

I will now move on to our therapy update. Oh wait...there isn't one. We have now had 4 lovely young ladies come out to the house and have yet to have one single therapy session. Last Friday our service coordinator and SST (which is another name for a developmental therapist) came out. I rushed to clean the house again...and even mopped AND vacuumed. Please don't think I don't ever clean, I just don't do it as meticulously or frequently like I used to. I'm hoping I'll become more comfortable with these therapists eventually and won't feel the need to scrub my house each time they come. Camden was still feeling a little sick, but I really didn't want to cancel since we are so behind with starting all this. So I was ready. I moved the coffee table out of the way, put a blanket down on the carpet, and we were going to show these ladies what Camden could do. Well...all we did was talk. We talked about what our goals are for Camden and what types of therapists would be working with him. Seriously?! It was like deja vu only with 2 different women. I know I'm a tad bit crazy these days, but I'm pretty sure we did this at the first meeting. It's a good thing his daddy and I try to work with him daily. Maybe one of these days I can tell you how his therapy sessions went.

Since Camden and I have been sick Carter has been spending lots of time with Daddy. He's been "helping" him at work and the two are connected at the hip. The other day Richard and Carter were sitting out by the stock tank shooting turtles. Apparently the turtles eat the fish so you have to get rid of them. You can't live out here and be a major animal lover! Carter is crying in one of the pictures because I interfered with his time with daddy. Sheesh.

To Change Or Not To Change: Part 2

First of all, the answer to the question, " To change or not to change part 2" ?  My answer is simple : "how dare me"? How dare me to stare into my son's eyes {like I did yesterday all day} and question what God has given us. How dare people to question God's work in a critical way. Just because a package is different doesn't mean the present inside isn't just as special - some more so!

We have posted all over our home Proverbs 3: 5- 6 . Incidentally, the man who wrote this when asked from God himself what he would like? "Ask anything, and I will give it"! states God. He asked for Wisdom - he is considered the wisest man to have ever lived - King Solomon.

The verse says : " Lean not on your own understanding but in all things trust in God and he will lay your paths in front of you!". As for me, I would not change a THING!

Sincerely,

A Proud Dad!

Heavy Heart

I don't think I have ever posted twice in one day, mostly because I don't have that much to say. Today is a different day. My heart has been heavy today. I'm not throwing myself my usual pity party...it's others that are on my mind. If you read my last post, you already know about sweet Evan. That little boy has been through more in his three months of life than some people will go through ever. Evan is being put back on the ventilator tonight and will have major heart surgery again next week. His sweet mom thought they were getting closer to going home, but God has other plans. That boy is a fighter!

There is another mom on my mind whose son's name is Eli. They found out today that sweet Eli is having Infantile Spasms. This is obviously something you don't want to deal with if you don't have to. My heart goes out to Eli and his family. The good news is that they caught it early and can begin treatment right away!

The main reason my heart is heavy is because of my boss and friend...Jodie. This is a woman who has been through more than anyone should have to. Oh man, where do I start. Jodie lost her sweet four year old baby girl about two years ago. I'm not going to go into details about Lilly's passing because there is no need to. Losing a child is the most devastating thing that can happen to a person. It was beyond heartbreaking. There was nothing you could say or do to comfort Jodie. The best we could do was just to be there. This was hard on all of us that work together. As if that were not enough, Jodie and her husband then separated. It doesn't end there though. Several months ago Jodie was diagnosed with colon cancer. It had already spread when she received the diagnosis and she has been receiving aggressive treatment ever since. Each round of chemo has basically failed. With every new scan, she receives unfavorable news. Does she give up? No. Jodie is a woman of faith and believes that our Father has a purpose for her. She pushes on and fights even when she is sill grieving the loss of a child. She continues to come to work because she has to. She praises and believes in the Lord even when she is in extreme pain, exhausted, losing her hair and just feeling like crap. She recently started a new investigational study to see if this was the answer. These days she feels even worse and doesn't believe it is working. Yet, she continues to press on. Why does one person have to bear so much? I admire Jodie's strength and perseverance. She never loses faith. Jodie is a selfless person. She has given me words of comfort many times since finding out about Camden's diagnosis. She told me she was thinking of us and praying for us all while dealing with much bigger problems of her own. She gave me permission to write this because what I really wanted to do is ask you all for prayers. I don't know what the future holds for Jodie and her family, but I do believe in the power of prayer. Please, if you have a moment say a prayer for Jodie. Jodie...we love you.

"Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings." - Psalm 91:1-2

To Change Or Not To Change: Part 1

Richard and I were sitting around visiting with some friends a few weeks ago and we started talking about Camden and Down syndrome. My husband made a statement that he would not change a thing. I then asked if he knew when I was pregnant that Camden would have Ds if he would still be singing the same tune. "Absolutely not...I would change nothing" he replied. I could see the pride and unconditional love that my husband has for our son. I knew at that moment that he has 100% accepted our son and that something "extra" that comes along with him. It got me thinking and I had to take a closer look at myself. My husband and I are not in the same boat. The one thing that we can agree on and that we have in common on this subject is that we LOVE Camden with every fiber of our being. My heart could burst with all the love I have for my two sons. However, if someone asked me right at this moment if I would take away the Ds if I could, my answer would be yes. Every once in a while I look at Camden and wonder if I had known about the diagnosis ahead of time, would he still be here? I would like to think he would, but I could not say for sure. If you read my birth story you know that I opted out of all prenatal testing. I still think there was a reason for that, and that reason is that Camden is here with me today. When I was asked if I wanted to do testing I said "No, because regardless of the results, it wouldn't change the outcome". I think almost every mom says something similar. I have never believed in abortion, but I often wonder what I would have done if I had known. I hope that I would have been brave enough to be super mom and continue on no matter what. What if I didn't though, and he was not here? I shudder at the thought. I can't even talk about it without crying because I can't imagine my precious boy not with me today. So, since it's pointless I won't indulge in the "what if" anymore. I still would take the Ds away if I could. Does this mean I have not fully accepted the diagnosis? I know I haven't. I'm a work in progress and I know each day I accept it a little more. The sick feeling I used to get in my stomach daily since finding out has gone away. It only appears every now and again. I wouldn't take it away because I'm shallow and I worry about him being different. I don't care about that. I would take it away because of every complication, worry and fear that comes along with it. He would not have all the health issues he has now if it weren't for that extra chromosome. I know typical kids have health issues too, but usually not so many at one time. I still hate that it's so hard for him to even hold his head up because he has low tone. I don't want things to be difficult for him. I read many stories from moms saying that they would not take away the Ds or change anything about their child. I hope I can say that one day, and I think I will be able to. It's still so early and the emotions are still so raw. The future terrifies me. I constantly hear the words seizures, autism, leukemia, etc because kids with Ds are at at a higher risk for these health issues. "One day at a time"...that's what others always say. Easier said than done. I envy my husband for his acceptance. He has the ability to enjoy each moment with Camden without sadness or fear. Does he still worry about his health issues? Sure. Does he lie awake at night researching and thinking about it instead of sleeping? No. As I'm typing this I received a text from a friend that I met because her son has Ds as well. He is 3 months old and has spent his whole life in a hospital so far now with no end in sight because his mom received bad news today...again. He has already had open heart surgery at such a young age and now needs another. I know...typical kids have problems too, but it still doesn't make it easier. I'll end this post by asking for prayers for sweet Evan. Him and his family need them.

 

 

I can't even put in to words how much I love this boy!

"He Has Risen"

I decided to take a break from Down syndrome, obsessive research and Internet in general for the weekend. I wanted to put all my focus on my family and the reason why we celebrate Easter...Jesus' resurrection. We had a great weekend filled with friends, family, egg hunts, and church. Instead of going into detail about everything we did, I thought I would share pictures instead. I hope everyone had a Happy Easter!

Saturday we colored eggs and had an egg hunt

at the Glover's house.

 

 

 

This was Carter's first time to dye eggs.

I think he liked it!

 

 

 

Camden patiently watched.

 

 

 

Some trampoline fun with Keetin and Jaicey

before hunting eggs.

 

 

 

 

Ooh mom...there's one!

 

 

Be careful Carter, the dog is going to get your eggs!

 

 

 

 

Daddy and Camden on the sidelines enjoying

the sun.

 

 

Look what the Easter Bunny brought me!

 

 

 

 

About to head out for Easter Sunday service.

 

 

We attended another egg hunt and had Easter lunch

with the Medlins. This is big bubba Rylie.

 

 

Rylie about to take Carter egg hunting...again.

 

 

 

I'm too lazy to carry my own basket!

 

 

 

Carter teaching big bubba how to play air hockey.

Rylie looks real excited, huh?!

 

 

Great...now I'm going to have to get him one

of these soon. He LOVED it!

 

 

 

The Hill family minus the biggest bubba. We

missed you Ryan!!!

 

 

This was the first time Camden started to swat

at his toys! I was so proud!

 

 

 

Worn out from the weekend's festivities!