Magnolia Munson

So Matt and I temporarily lost our sanity and decided to get a puppy! An English Bulldog puppy to be exact and we are all completely in love with her. She is all white (with some black spots on her ears, but all the fur is white) and just as cute as she can be. Right?!

We decided we would go ahead and name her because if we let the kids name her she would be either "Dog!" (Aaron) or "Woofy" (Jacob) or something to that effect. So Matt and I settled on Magnolia (for the beautiful flowers/trees in our home state of Georgia) and Munson (for the late, great Larry Munson - longtime Georgia Bulldog football radio announcer) and we'll call her Maggie for short because it's such a cute name!
Since she's so cute, here's another picture.

 Rather than telling the kids before we brought her home, we made it a surprise. We took her to the vet to have her checked out before introducing her to them because we didn't want any broken hearts if there was something seriously wrong with her (Matt and I have been through that with a puppy before and really didn't want our kids to experience that too). Luckily, the vet checked her out and said she looks great. Perfectly healthy and ready for her new home.

So when I brought her home, she was in a box (without the top on it - I'm not inhumane) but the kids couldn't see her. Matt told Jacob we had a new family member and he got a really confused look on his face. When I showed him what was in the box his jaw dropped and his face lit up. Aaron started doing the sign for dog (which is patting the side of your leg) and yelling "Dah!" "Dah!".

So, Friday will make one week since Maggie joined our family and so far things are going great. She isn't so sure about Jacob yet (the feeling is mutual though) and she likes to play with Aaron (again, the feeling is definitely mutual). She likes to eat, sleep and chew on things. Crazy, I know. For the most part, she uses the puppy pads and she has fit in with our family pretty seamlessly. We all love her and hope she lives a long, happy life with us.

Aaron is especially fond of her and I have been astounded at his instinctive calmness with her. As wound up as he gets, I thought he would be really rough with her. But once she was comfortable in our house and he had calmed down enough to stop yelling "Dah!" at her every time he saw her, he has been nothing but gentle. He sits down when she is out playing with him, he pets her gently, he gives her hugs (without squeezing her) and he holds his hand out so she can sniff him. It appears they already have a kinship which I hope will be good for both of them for years to come.

So, I hope you have enjoyed the pictures of our new furry family member. Welcome home, Maggie!

Craft Time

Although I am not very "artistic", I do have a creative streak and a love of making things that most definitely came from my mother. Being the only female in the house, I am pretty much on my own when I want to take on a craft project, but that's alright. Trying to find a big enough chunk of time to actually get something done is always a challenge, but every once in a while the stars align and I manage to finish one of my many projects.

Since no one in my house really cares about any of the things I make (what can I say, they are boys) I figured I would share them here!

Most of these ideas came from Pinterest, or were inspired by things I found there. I love that site! Makes me feel crafty even when I'm not. :-)

I saw a similar sign on Pinterest that was made by someone that was selling it on Etsy for about $40. I LOVE the saying, but didn't want to shell out the money for it, so I thought I would try to make one myself. I found a piece of plywood and a decorative dowel at Michael's and painted them both white. Cut the letters out of scrapbook paper using my Cricut machine and glued them down with Mod Podge. I added a picture hanger to the back and voila! I love that I was able to make it my own, with the colors I wanted and only spent about 10 bucks.

I came up with this one on my own! The door hanger cost 99 cents and I had everything else. White craft paint, black paint pen, green Sharpie and the Cricut machine to cut out the monkey and vine. I think it's cute, but Aaron likes to take it off the door and throw it. Of course.

I actually made this several months ago and have been using it with much success! I got the inspiration for this from Pinterest as well. Each child has a pocket with "technology tickets". I cut up pieces of scrapbook paper and tied ribbons to the ends. Each ticket is worth 30 minutes of technology time (tv, video games, computer, etc). Jacob gets 14 tickets per week and can use them as he pleases but once they are gone, they are gone for the week. Occasionally, we take away a few tickets when he gets in trouble as well. There are limitations, he can't use any until his homework is done and he can't use them all at once. Mom and Dad always have the right to overrule his decision on when/how to use them. For the most part it has worked great. Makes it easier (for both of us) to see how much time he has spent in front of a screen.

Thanks for taking the time to see what I have made over the past few months! 

Overcoming the Exhaustion

I love my son but taking care of him is exhausting. I like to think that my friends whose children don't have special needs are also tired, and I'm sure they are, but not like this. It's not complete mental, physical and emotional exhaustion every single day. I feel like I am constantly running a marathon and the finish line is nowhere in sight. In reality, there is no finish line.

I don't like to complain about being Aaron's mom. I am so thankful that he is my son and that God decided he belonged in our family. He has changed our lives in unbelievable ways and I really don't want to change it. But it isn't easy.

There seems to be two different ways of thinking about Down Syndrome out there. Many parents look at it as a blessing and wouldn't change a single thing about their child even if they could. If there were somehow a "cure" (which is kind of ridiculous - you can't change someone's DNA), they wouldn't want it because it might alter their child's unique and wonderful qualities. I get that, I really do. I'm not sure I'm squarely on that side of the fence, but I can understand the thoughts behind it.

Then there are the parents that look at it as a terrible disease. The parents who will do anything and everything out there to try to minimize the effects that this extra gene has on our children. There are nutritional supplements, rigorous therapy schedules (as if our five hours a week aren't enough!) and dietary protocols that are aimed at improving the child's chances of living a more "normal" life. I know I'm not on this side of the fence, but I can see this perspective as well.

Honestly, I think I fall somewhere in the middle of these two views of Down Syndrome. Either that, or I still haven't quite figured out how I feel about it. I have a feeling I'm not the only one who is stuck somewhere between "I love DS" and "I love my child, but I hate the syndrome". I have always hated the stuck in the middle feeling. It's not a good place to be. But I suppose part of my journey is to learn to accept that. It doesn't have to be all or nothing. If a miracle drug is developed someday that will effectively eliminate all of the effects of Down Syndrome in my child, I will have to decide then if it is the right thing for him. I'm not holding my breath, but you never know what the future might hold.

For now, I'm just trying to get through each day. Running through the never-ending race that is my life. Doctor's appointments, therapy visits, trying desperately to figure out how to communicate with my son, studying every label of every food that might go into his mouth to make sure it isn't going to make him sick, running after him or trying to hold onto him every minute that we are outside of the house, beating myself up about not doing enough for him, trying to make sure I give Jacob everything he needs while constantly worrying about his brother, struggling just to make dinner for my family because I'm so tired and stressed out by the end of the day and wishing I had time to even think about doing something for myself. There is so much more that goes into every single day of my life, but that is just a sampling of the thoughts that I have on a daily basis. I want to update this blog more frequently. When I actually do get a few minutes to think clearly, I have to decide whether writing for my paying job, cleaning the house, attempting to relax or one of the dozens of other things I need to accomplish will be the priority that day. Unfortunately, this blog doesn't top the list very often. It's therapeutic for me to write here, but there are just so many other things that need to get done, that it doesn't happen very often. And it's really hard to form a complete thought when I have a three year old tugging on my arm and screaming at me to turn on Blue's Clues...

The Value of a Life

I had to take Aaron to the doctor today because he has been hysterical for the past three days and I had no idea why. It turns out he has an ear infection and it looks like his tubes are gone, so we are probably on the fast track for our fourth set of ear tubes.

Life has been really stressful lately and I often feel like I am not doing enough for Aaron or I get frustrated because I just want to be able to understand what he needs. The communication is getting better, but it is still exhausting.

But tonight, in the midst of my stress and frustration with my own situation, I came across this post about another family's struggle.

Brick Walls

Appalled isn't a strong enough word to describe what I felt after reading this. I found this story posted on a Facebook friend's wall. This Facebook friend has a son with Down Syndrome and horrifyingly (is that a word?!) was told the same thing about her son.

To summarize what happened, this family has a little girl with a chromosomal disorder and she has kidney failure. She will need a kidney transplant sometime in the next six months. Her parents take her to the Children's Hospital of Philadelphia (CHOP) which has an excellent reputation as one of the best children's hospitals in the world. A few days ago, they went to discuss her medical needs with the Nephrologist and were told that she was not eligible for a kidney transplant because she is mentally retarded. They had written it down on a piece of paper and highlighted it. When the parents said they would find a family donor and didn't need to be placed on a donor list, they were told that the surgery still wouldn't be done at CHOP because of their daughter's disabilities. They told her mother that her daughter's life wasn't worth saving. TO. HER. FACE. If you haven't read the blog post, you need to. I can't adequately express what happened here because it didn't happen to me.

But the panic is rising inside me. Just because this little girl doesn't have Down Syndrome doesn't mean it  hasn't happened to children who do. I have already read multiple accounts of this happening to kids with DS. And it shouldn't be happening to ANYONE, regardless of their disability. If someone ever dared to tell me that my son's life wasn't worth saving, that his life is less valuable because he has DS, they had better say it as they run in the other direction. As far as our society has come to improve the lives of people with disabilities, we clearly still have much farther to go. No doctor should have the right to tell a parent that their child isn't worth saving because they might not be as smart as other kids.

I don't know what I can do about this, but I can't do nothing. It's not right. I can't stand that this is happening and something has to be done to make it stop.

So, despite the stress and struggles we have been dealing with lately, reading something like this suddenly puts it into perspective. All of the work is worth it. My son may not be able to talk to me yet, but he will. And his life will ALWAYS be every bit as valuable as anyone else's.

Christmas in Arizona

We have tried hard over the years to spend the holidays with our families. Since we got married 9 1/2 years ago, we have lived in four different states and had numerous types of work schedules to contend with but most years we have managed to get back to Georgia for Christmas. This year, even though we live on the other side of the country from our families, we decided it was best to stay home for Christmas.

Turns out it was a great decision. It was so much easier for us to be at home on Christmas morning. I was able to get the kids everything I wanted to get them without worrying about how big it was or how we were going to get it home.

We love our families and we missed being with them all over the holidays, but this is what works for us right now. I know I'm a couple of weeks late with this, but Merry Christmas everyone!

Not Going Home for the Holidays

After our horrendous plane trips last summer, we made the difficult decision to stay here in Arizona for Christmas this year, rather than flying back to Georgia to spend it with our families. While we are sad not to spend the holidays with all of our extended friends and family, it was really the only choice for us at this point. Regardless of the difficulties of getting Christmas gifts across the country twice, the high cost of airfare and the logistics involved, we would have done it if Aaron could travel a little easier. As it is, he can't.

His sensory processing problems make traveling a complete nightmare for all involved (including the 100+ other passengers on the plane), but mostly for him. When your body doesn't know how to process new sights, sounds and motions, being strapped into a car seat where you can't move for four hours on a plane full of strange people, sounds, sights, smells and motions is pretty horrible. I dislike flying for many of those reasons and I don't have any sensory problems. I can only imagine how terrible it is for him.

Luckily we have a very understanding family. Matt's parents were able to come visit over Thanksgiving and my parents will be here on Christmas. We will miss seeing our siblings, grandparents, aunts, uncles, cousins and friends but we are lucky that our parents have the ability to come spend the holidays with us. I know many families who aren't as lucky. Either because their families can't travel or they don't "get" why the child with special needs can't travel.

So, as I'm counting my blessings this year (and there are many, even though it has been a difficult year), at the top of my list will be the blessing of a loving, understanding family who has always been there to support us no matter how bumpy the road has been or how far away we are. It is not lost on me how much you mean to all of us.

Right after that will be the blessing of caring, supportive friends who are always there for me when I need to talk or vent. Even if you don't completely understand what I'm going through, it means the world to me that you will take the time to listen to me and try to sympathize.

I think I will save the rest of my blessings for another post, but this deserved a post of its own. And if you are reading this, you are probably one of those people, so thank you, we love you all!

Let's Hear it For Respite Care!

We finally started respite care last week. I hired two different respite care workers from the same agency (actually the same clinic where Aaron goes for OT, speech and feeding therapy). One of the girls came on Monday morning. It couldn't have worked out better, I was so pleased with her. She sat down and started playing with Aaron right away. I gave her some basic instructions about where things were, what I was going to be doing and she seemed quite comfortable. I decided to stay home since she hadn't ever watched him before and I want us all to be totally comfortable before I actually leave him home "alone". But I was able to stay in my room and write and get a few other things around the house accomplished. I heard Natasha (the respite provider) playing with Aaron, talking about colors and shapes, all sorts of things. He didn't fuss or look for me the whole time and he seemed very happy all morning. I am just so happy that it worked out so well. Hopefully the trend will continue!

The other girl I hired came for the first time yesterday and I was equally pleased with her. The whole morning went smoothly and both she and Aaron seemed comfortable. I was able to get a lot of work done and definitely felt more relaxed than I do on a normal day.

Both of them have already needed to cancel once on days they were supposed to come, but they both had significant and legitimate reasons. Hopefully it was just a fluke that they both happened within a week of each other and things will go more smoothly from here on out. Time will tell I suppose.

I am so glad it has worked out so well thus far. I don't want to get too excited, because I know as soon as I get comfortable something is going to come up and throw our routine out of whack again, but having this time is such a blessing to me. I can already tell that I am happier and so is Aaron when we aren't together 24/7/365. Having just a few hours on a regular basis makes such a difference. I can concentrate on other things I need to do without him pulling on my arm every 30 seconds and he gets undivided attention from the respite providers. I feel like I am able to devote more attention to him when we are together too because I'm not constantly trying to do everything else that needs to be done. Everyone told me I would say this, so I'll go ahead and say it : I should have done this sooner!

I don't know if I really believe that though. I think I did it now because I felt like we were both at a point where it was going to be good for us. And I don't think I could have said that six months ago. But there is no point looking back and thinking about decision that we could have made, all we can do is plan for the future and go with the decisions we did make.