Monday, January 30, 2012

A Mother's Patience


the quality of being patient, as the bearing of provocation, annoyance, misfortune, or pain, without complaint, loss of temper, irritation, or the like.

I think all mothers have their own idea about what patience is. For some, it may be putting up with their son's terrible twos. And threes. And fours. Others find patience in the child that refuses to eat their food. Or use the potty. Or go to bed. But special needs mothers (or maybe just me, I don't know) know and live with a different kind of patience. The kind that is more raw, more organic, if you will. Because our patience is not for actions done, but for actions longed for. I long to hear my two year old say a word. ANY word. I long to see her take her first steps. I long for her to eat without throwing up. I have always thought of myself as a patient person (Cole is laughing at this. But when it comes to children, I really have always been patient!). When I was teaching preschool, I always tried to be slow to anger, quick to listen, loving always, and remember that they are, after all, just three year olds! Which was hard sometimes when there were 30 of them! But I learned so much from "my babies" about being a mommy- more than I ever realized at the time. Being patient when it comes to behaviour is one thing, a thing that *all* parents deal with and at times, struggle with. But patience in relation to your child's development and health is another thing entirely, I am learning.
My Angel Mommy Patience Lessons....

* Remembering that when someone says that "all two year olds do that." or "that medical procedure is no big deal.", they are just trying to be supportive and helpful and they really just don't get it at all.

* Knowing that the constant hair pulling and biting are signs of affection. (I think all Angel parents can agree 100% on this one!)

* Cleaning up vomit/spit up, for the 100th time that day, and reminding myself that it will eventually end. I pray. Can I get an AMEN!

* Remembering that people do not understand just how significant Angelman Syndrome is, nor can they understand the impact this has had and will have on our life.

* Not getting angry when people ask intrusive or hurtful questions, because they just want to understand.

* Keeping in mind that people who can't see how wonderful and glorious and amazing my daughter is are not intentionally ignorant. They have just never been taught otherwise.

* Reminding myself that doctors cannot go on the word of the mother alone. Even though I *told* her last week that Ava was getting an ear infection! Achem! Sorry. :)

* Remembering that Ava isn't the only patient needing to be seen at various clinics, and that is why we have to wait months. And months. And months.

*Understanding that someones child having something small wrong with them (in comparison to AS) doesn't mean that that parent is any less upset or worried about their child than I am about Ava.
 As another special needs mom- and fellow blogger- once told me: the worse thing that ever happens to a person's child is the worst thing that ever happens to them. Truer words have never been blogged, I think.

I try very, very hard to be patient with everyone. Because I understand that everyone is dealing with something in their lives, and not everyone is as open or vocal about their struggles as I am. I am and always have been an open person, and I find that talking about Ava and Angelman Syndrome is a great coping method for me. People always remark about how well I am doing, how I am handling everything in stride. And for the most part, that is true. But I am still extremely hurt. And beyond sad and angry. I still weep at times. I still ache for my sweet Angel's life and the struggles she will face. Oh how I wish I could carry those burdens for her. I still cry out to God and question His decision to not heal our daughter. And you want to know a secret? I am okay with feeling all of those things. Some people might think that I am turning from God because I say that. But on the contrary, I feel closer to the Lord than I ever have in my life. Because I rely on Him so much more to get through the day. God is BIG. Big enough that I can lay all of my feelings and emotions at His feet. Come to him broken and beaten, weary of this thing that I never wanted in my daughter's life. In my life. And he can take me and breathe new life into me, and give me what I need to make it through the day. And He does! And for that, I am so thankful.

And I am beyond thankful for this sweet Angel! 

Friday, January 27, 2012

My Favorite Room

I just love our new home. Have I mentioned that lately? Because I do. And I feel so very blessed and honored to live here, and I thank the Lord each day for a beautiful roof over our heads. I walk into each room at least once a day and just enjoy Our last home (which was our first) was a beautiful home-when we got done with it anyway- but it was just very dark, and because of that seemed much smaller than it really was. Although it was not huge- just over 1500sqft. Our new home is about 2400sqft, with an extra bedroom, an extra dining area, and a much larger, well, everything! Plus we have a very nice two level deck for entertaining, whereas our last home had a very small deck with about 25 stairs leading straight down to a dirty and steep yard. So just having an outdoor space to enjoy has really helped too!

Now all that said, there is one room in this home that I am in LOVE with. And it really wasn't even on my wish list when we were looking at houses. Honestly, I never considered it all that important just because we didn't have one in our last house and we got on just fine without it! But now that we have this room, I am just in awe of how much we use it and wonder how we ever got by without one! That's right, folks! I am talking about our


In all honesty, when we looked at this house, I thought "oh cool! A pantry." and moved on. But from the moment we started moving all of our stuff in, I realized that this mystical room called a pantry would rapidly become one of the most used rooms in our house. And thus, one of the most cluttered. So I made it my goal, nay, my mission, to make sure that our pantry stay organized and remain the useful room that it was intended to be.

I do have dreams of making it a beautiful space. Pinterest has really spurred that desire along. But if you read this post, you know that the pantry is notably absent from my list of rooms to tackle this year. Hey, I have to have something to do in 2013!!! And besides, I need to have some time to either save up for all the wire baskets I will need, or wait for them to come down in price. (SHAZAM! Have you seen how much places like Tar-jay are charging for old looking wire and chicken wire baskets?!?! I.DON'T.THINK.SO!!!! And I am a basket freak!!!)

So while I do dream of pantries like this one (although I really doubt it looks like this all the time!):


And this one (with it's gorgeous dark shelving and wire baskets, oh be still my heart!):

 With fun features like this:

 And a beautiful stenciled background wall like this one:


 I am left to deal with this. This is my pantry, when it was empty.

And here is how it looked earlier today. Pretty bad, huh? I hadn't taken the time to reorganize in a few weeks, and it was starting to show! 

Here is the other side, to the left when you walk in (I am standing in the doorway). The can goods still look decent. Hey, that something!!! 

And here it is after I did a little reorganizing and cleaning. Much better!!! 

This is what you see when you walk in.

Bad picture I know. But this is one reason why I love my pantry: See the appliances down on the bottom shelf and my mixer on the floor??? Those LIVE there! So they are not on my counters or taking up cabinet space!!! Yes, I do love this room!!!

I will probably be working on a design plan for this space sometime soon. And who knows, I might just decide I need to add it into my 2012 goals. You just never know! ;) Thanks for stopping by!!!

Wednesday, January 25, 2012

A Few Goals

I wrote about my New Years Resolutions in this post. Although I don't really have any typical New Years Resolutions, I do have a few goals I would like to accomplish this year, most all of which have to do with our house. So I thought I would share a few of those today...

1. Redo the Laundry Room. Here is the laundry room before we bought the place:

As you can see, it also has a little desk area, which currently houses our computer and office. It functions okay, and honestly, we are probably not in the point in life where we could do a huge makeover and move the office somewhere else. SO the office will stay. But I really want to do something fun to this room. Take down the wallpaper, put up bead board, maybe paint some of the cabinets, replace the counter top. I doubt Cole will let me retile the floor (honestly he is probably stroking out just reading what I have in mind already!). I just really want to make this space a pretty place to sit and blog or facebook or load/unload laundry.

2. Add some more trim to the dining room and foyer. Here was the dining room and foyer when we moved in:

(Sorry, this was the best picture I took I guess)

And here is how it looked a few months ago:

Sorry I can't show you what it looks like today- Ava's birthday party planning has exploded all over that room. BUT I can tell you what I have already done: new entry table (this one), new rug, new curtains (which happened because of the new rug), and this new light fixture.

I really want to add a nice thick chair rail, and also add a small shoe moulding about 4 inches under the crown moulding, then paint it all the same trim color. These ceilings are really high, and that will give the appearance of a thicker crown without the expense or trouble of actually doing all new crown moulding. I also want to add some picture frame mouldings under the new chair rail and paint it all the trim color to give it the appearance of wainscoting. And we might have to repaint in here- not sure? When I was telling Cole about my ideas, and I asked him what he thought, his reply was "what does it matter? You have already decided to do it anyway." Smart, smart man. I am thinking about replacing the foyer light to match the dining room light, too. It would be this one. Shhh, don't tell Cole.

3. Ava's big girl room. Probably my most important project. And the one that will require the most help and money. Of course, we will need new bedding and a fresh coat of paint. Still thinking on that. But the big parts are an enclosed, full sized bed and a ball pit. A fellow Angel family graciously shared their drawings and instructions for an enclosed bed, and I have my daddy studying it and have made a few requests on the design. It will be painted white, and we are going to either use the white wicker furniture we have in the guest room or get her some used furniture and paint it white as well. Haven't decided yet.

She also needs a ball pit. And I don't think there is room in the therapy room. And yes, it is a NEED!!! The girl is totally relaxed and chill in the ball pit at therapy, and we need that at home!!!! It needs to be big enough that I can get in with her, and the blowup ones are no good because they pop when an Angel bites them. Trust me on that one. So I think we are going to build it out of plywood boards covered in batting and fabric that matches her new bedding. I have the perfect place for it to go, too!!!!

4. I really need to rearrange the therapy room. This will cost zero money, but since Cole still refuses to get rid of his weight bench (even though he now has a gym membership!) I need to clean out the garage so I can put that darn weight bench in there, so we can have some more space in the therapy room.

This isn't exactly a project, but in our last house, Cole bought me roll out shelves for our pots and pans for Mother's Day. And I think that might be a good gift for me again this year. Achem. Cole.

I will keep you updated and take pictures as things get done. And they might not all get done this year!!! But Ava's room is a top priority and I am already thinking and making plans. :) Can't wait!!! It isn't going to be the "big girl" room I envisioned when I was pregnant (yes, I have been planning that long) but it is going to be adorable and fun and a great place for my Angel to rest and play and be her own space!!!!

Wednesday, January 18, 2012

Stepping Out

We had a great day at therapy today! Wednesdays are one of our "light" days, where we only have one therapy session, which happens to be Physical Therapy. Now I ***love*** all of Ava's therapists. They are just the sweetest four ladies I could have asked for, and they love Ava so much! And the feeling is mutual too! Her OT gets more hugs and kisses than I do! HA! But of all of the types of therapy, I think Physical Therapy, or PT, might be my favorite. I think because PT deals with the gross motor movements and coordination (basically walking, standing, etc). which are big and obvious things. So as Ava has improved in her gross motor skills, the changes have been obvious and noticeable not just to me, but to everyone who knows her.

Today, we hit another big milestone! I am not willing to say that she walked for the first time, because she didn't. But she did take an independent step today!!!! It was in pursuit of a goldfish cracker- sometimes it just takes the right motivation! It made my heart leap! So exciting! Now this event might not repeat itself again for many weeks or months, but it is a HUGE leap in the right direction and we are so very proud of our sweet girl!!!!

Here is my sweet Angel after therapy today. She was worn out! Ms. Angela worked her hard!!!
She is really good at standing and pulling up, and even does so using the wall. Which tells us that she really just needs something for balance and emotional support. She even stood in the ballpit at therapy two weeks ago all by herself. And yes, it was to get a goldfish cracker then too! HA!
Ava in her tripp trapp chair! She loves it, and she can push away from the table in it. So far, no worries on it tipping backwards, which was my fear. She just slides on back! It has extenders that I installed on the back legs to keep it from tipping, and they do a great job!

Sweet girl, who can now climb on the couch all by herself. It is her new favorite place to be, and I love playing with her and *not* sitting on the floor!

Helping mommy do the laundry! She is such a big "helper" and enjoys sitting in the basket of clothes and unfolding them about as fast as I can fold them!

Sweet mess! She loves to sit on the side table and play with the books!

Not long after Ava was diagnosed, I was talking to a sweet friend who has a special needs child, and I was asking her how she deals with strangers in public who stare or ask questions about your child. I know that right now Ava still looks enough like a baby that many people just assume she is tall for her age (which she is anyway!) but I also know that it won't be long before people start having those questions and wondering about her. And for me, personally, I would rather someone know the truth and not wonder and speculate. Plus, seeing Ava out in public, with people, and seeing how people are just drawn to her and how she engages people, it occurs to me that she, as an Angel, is the best awareness that Angelman Syndrome can have! To see her is to love her, and to love her is to love an Angel. And I want people to know that. So on the suggestion of my friend, I had these cards made. The top is the front, and the bottom is the back of the card. I ordered from this etsy shop, and they are very high quality, with all of the design and printing work included in the price! Since I got to have something on the back, I wanted it to express how amazing we believe our daughter is, and how rare an opportunity it is to meet a real, live Angel. :) So that is why I asked her to put the wings and the "Today, you crossed paths with an Angel."

My Angel Mommy Cards

Saturday, January 14, 2012

The Line

If you read my previous post, then you know all about Amelia Rivera and her battle to get a kidney transplant done at Children's Hospital of Philadelphia, or CHOP. In case you didn't read it, here is the short version: Amelia was born with a condition called Wolf-Hirschhorn Syndrome, and she is mentally disabled. A few days ago, her parents met with a physician from the CHOP transplant team as well as a social worker, and were informed that their precious daughter would not be eligible for a kidney transplant, despite the fact that their large family were all willing to donate. This decision was based solely on the fact that little Amelia is mentally and developmentally disabled.

As the mother of a child who is, to the medical community, considered mentally disabled, I am so very angered by this! How can they say that this child's life is less than any other child. Because she cannot walk or read or count to 10, she is automatically disqualified from receiving a vital organ transplant? What makes her less worthy of this kidney than say, the school bully? Or a convicted felon? If we are going to offer medical services based on what is going on inside of someones head, wouldn't they be disqualified, too?

This is a dangerous and deadly practice that happens more than I would like to consider. And not just at CHOP! And it should be a concern for ALL parents, even those of typically developing children! And here are some reasons why EVERYONE should be against this deplorable attitude:

  • Where is the line drawn? Take my sweet Ava, as an example. Angelman Syndrome has a varied spectrum of severity, but all Angels, including Ava, are nonverbal and it is very difficult to measure intelligence. However, if you spend any time around Ava, you *know* she is intelligent, despite her delays and limitations. She follows directions (and sometimes disobeys them- just to laugh at your reactions!), has an AMAZING visual memory (even for her typical peers!), and is very inquisitive- always looking under things and trying to take things apart. But it would be impossible to measure her IQ or what she really knows because of her AS. So which side of the line would she fall?
  • What about Autistic children? Talk about a spectrum! There are so many children with Autism, at what point would they say sorry, your child is TOO Autistic to be saved.
  • What if a typical child is in an accident and has brain damage? There is no way to know what that child (or really any child with mental disability)  will be able to accomplish or do! Would they be denied a vital organ transplant?
  • Is this going to be limited to organ transplants? What if a child has cancer, and also happens to be mentally disabled? Will they decide that child is not worth treating?
  • Will the line be drawn at mental disabilities??? What about people who are physically disabled? Should they be concerned that one day, a doctor might deem them "unworthy" of a life saving operation based solely on their disability???
Typical parents should be concerned about this just as much as the special needs community. Why? Because in an instant, your life can change and YOU might be a special needs parent. I never thought I would have a special needs child. No one really ever thinks that something like this can happen to you. But these things CAN and DO happen. And in that instant, your life is changed. Having a different set of medical "rules" and "standards" should be the ONE thing that does NOT change for your child in that instant. PLEASE, for my Ava and all of the other precious, amazing, worthy special needs children out there- FIGHT THIS!!!!!!!


Friday, January 13, 2012

Honk Honk

I have always tried to do the "right" thing, and I expect that of others too. When I drive, I am a honker! If someone is doing 45 on the interstate, I honk!!! Not only because I am annoyed (which I am, I admit) but also because it is dangerous, it could hurt someone, and it is wrong! My mom has always told me that I can't right the world's wrongs. And my reply has always been that I can right the ones I see!

Since I have been immersed in this world of Special Needs the last few months, I have become much more sensitive to things. The word "retarded" has *always* bothered me, but now that my child has a syndrome that has an intellectual disability attached to it, I am much more angered and appalled when that word is used, especially by people who should know better.

I am also much more aware of things that I never really thought about. Like "quality of life" and "patients rights" and the American's with Disabilities Act. Which is why, when this blog popped up on my facebook newsfeed, shared by another Angel mom, it caught my eye. I vaguely remembered, in the early days of our diagnosis, hearing of a child who was denied an organ transplant based on their disability. Honestly at the time, I was so overwhelmed that I didn't give it much thought. But now, having read this (and I don't know if this is the same child or not- I am guessing no, which is even scarier!) I am OUTRAGED by this hospital's decision. Not only did they decide that this precious little girl, who has a condition called Wolf-Hirschhorn Syndrome, was not deserving of a life saving kidney transplant, but they obviously have decided that they should be the ones to decide if children are "worthy" of services. Yes, this is an important, life saving operation that is desperately needed for sweet Amelia. BUT, is that where it ends? What if she needed another operation? Would they refuse because she isn't able to count to 10? Will they next refuse her treatment because she can't tie her shoes? Are typical children the only ones worth treating and saving? And if the answer is no, where is the line drawn? Is Amelia less human, less beautiful than other children because of her disability?

I find it ironic that, on the Children's Hospital of Philadelphia home page, they proudly (and by law) display that they are an Equal Opportunity Employer. It states that "The Children's Hospital of Philadelphia is an equal opportunity employer. We do not discriminate on the basis of race, color, gender, sexual orientation, age, religion, national or ethnic origin, disability or veteran status." So apparently they will hire you if you have a disability, just don't need a life saving operation (she, by the way, has a large family willing to donate the kidney for her!) or you will be out of luck!!!

This is an important and vital issue to me. I do not know this mother. I am praying for her and angered by this situation. But I would be lying if I didn't see the implications for my child in this as well. Ava is, thankfully, a very healthy child. But we could be in a terrible accident tomorrow and she could need a transplant. What would our doctors tell us? That she will never live a "normal" life, so she is not worthy of the operation??? (by the way, if I am ever told that, they need to have several large security guards ready. with tasers. and pepper spray. and cuffs. because momma bear would be out claws first on that one!) I cannot see how this is legal under the American's with Disabilities Act. Honestly, I know little about the ADA at this point. But I am certain that this mom and dad are doing everything they can legally to get their daughter the operation she needs.

But we can help! I know how important public image and media relations are to large hospitals. So please, take a few moments and contact the media in Philadelphia. Tell them how you feel. Tell them it is for Amelia. Here are the links to the network affiliates contact pages. Speak out. It doesn't matter that you don't live there. This has much wider and broader implications. For ALL children. Not just the disabled ones!

NBC  (at the bottom, under the "follow us" block, there is a link to send news ideas and tips)

And while you are in a sharing mood, feel free to share your thoughts on the Children's Hospital of Philadelphia Facebook page- hundreds (including me!) already have!!!

Thursday, January 12, 2012


I am so blessed. I have really be thinking about the many blessings that are in my life recently, and I just can't express how thankful I am for all that the Lord has given to me and my family. Do we have challenges? Yes, of course. Everyone has challenges. And some of ours have been whoppers lately for sure! But I truly believe that the challenges we have been given only serve to highlight our blessings.

When you read about having a special needs child, all the books address the mourning process. And it is just that- a mourning process. You go through the stages of grief that you would had you lost a loved one. In fact, this has been harder to accept and I have experienced more sadness and grief than when I have lost loved ones in the past. I have even heard it compared to loosing a child. I am not sure I would go that far. I have never lost a child- so that is not a sorrow that my heart knows. But I do have friends who have lost children. And I see their sadness and their grief and I am so thankful that, despite my daughters challenges and limitations that her condition places on her, she is here, with me on Earth! I can hug her, kiss her, love on her. My friends cannot.

I was at Bunko tonight, and I was talking to my dear sweet Bunko friends (I just love them all so much- talk about a blessing to my heart!) and someone asked how Ava was doing. Then they asked how I was doing. For some reason that question always catches me off guard. I guess because I don't really think about how I am doing that much. I am just doing what I have to do for my daughter- what any mother would do for her child in the same situation. And the truth is, I really am doing okay. There are still times when I see a typical child doing something, and my heart is just hurts, knowing my baby girl will never be able to do that. But overall, I have accepted it and am moving forward on this new path that has been set before us. I always try to remember that, just as we are not promised so many days on Earth, we are also not promised that those days we do have will be easy or that we will be "typical" without suffering or sickness. We are just promised that all things will work for the good of those that love Him and are called to His purpose. And Ava's condition will, in some way, work for good. And I know that the Lord loves Ava. She has been made in His image. She has this terrible condition that prevents her little body and mind from working together and reaching their full potential. BUT she is STILL fearfully and wonderfully made. Psalm 139 13-16 says:

 13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
That is not any less true for Ava because she has Angelman Syndrome. I painted part of verses 13 and 14 on her name canvas for her room while I was pregnant. And I remember thinking then how awesome it was that, even though I had yet to see, hold, smell, kiss my child, GOD had! He knew everything about her before she was ever conceived. And He loved her and sent His only child to die for her.

I met with our very sweet Children's Minister from our church today. Emily is so kind- you can really see her sweet spirit and her love for children. We talked about how to move forward now that Ava is getting older, and she had some great ideas and was very enthusiastic about not only ministering to Ava and our family, but to other families that have special needs children and who, for that very reason, feel that there is not a place for them at church. And I love that we have a church that is willing to do all they can to help meet the needs of their members. What a blessing and a testament to the heart and mission of our church. (here is their website, by the way, in case you are looking for a church in central AR!)

Speaking of blessings, I am going to go enjoy a movie on the couch with the hubs, but I leave you with a precious picture of my precocious Angel, who now enjoys sitting on the side table when I am not looking! Stinker!!!

Thursday, January 5, 2012

Ava's Therapy Room

***If you are here from Kelly's Korner, WELCOME! My husband (see his handsome face at the top???) is CW3 Cole Brewer. He is in the Arkansas Army National Guard. He is a blackhawk helicopter pilot, and flies medevac missions. He has served for 12 months in Bosnia, 18 months in Iraq, and most recently 12 months in Kosovo. We have one child, a daughter named Ava. She has a condition called Angelman Syndrome, which is a rare neuro genetic disorder. It is the same disorder that Colin Farrell's son James has. You can learn more about it by reading my blog or by looking here or here. Thanks for stopping by, and if you would like to keep up with our crazy lives, I always welcome new followers!!!***

When we first learned of Ava's Angelman Syndrome, I became focused on making our home safe, inclusive, and therapeutic for her. But I also still wanted our home to be beautiful and inviting for us and our guests. Our back bedroom that had been claimed as my craft room took on a whole new identity and purpose. My craft supplies are still there, as is Cole's workout bench- which has long been a point of good natured teasing and "arguing" in our marriage (I hate it and would love nothing more than to sell it...he is still sure that he might use it one day! HA!).

This is what the room looked like after we moved in. Not very pretty at all, but very functional for it's purpose...

Like I said, not pretty, but it got the job done! It is a very large room with a HUGE walk in closet.

This carpet was here when we moved in, and we decided to leave it because of the "utility" function of this room. Now that it is a full-time therapy room and only part-time craft area, we are revisiting the idea of flooring in here. Maybe some sort of cork floor? Or we might just put down matching carpet like we have in the rest of the house. We will see...

 And here is the after shots....

Play area right as you enter the room. This place filled up after Christmas!!!

Another shot of the swing/toy area

On the wall opposite from the play area is her chalkboard tree, where friends and family write encouraging messages to her.

My parents old computer armoire serves as my craft area now. It is great because I can open it up and work, and then just close the doors and have it out of reach for a curious Angel. :)

I found this little shelf at an estate sale, and painted it pink. We use it to store yet even more toys!

Inside of her tent. She LOVES her tent! Not bad considering Santa bought it as an afterthought! HA!

We have a little owl theme going on in the room...

This guy is a chalkboard owl.

It is a big room and we love having the different textures on the floor. Makes for one happy sensory baby!

This was about as good of an overview shot as I could get...sorry! I am a terrible photographer!!!

And while we are looking at before and afters, I am not sure I ever posted B&As of the kitchen! I am loving my granite, and am so pleased with the results! Sorry the "after" pictures are dark!!

The kitchen BEFORE...with ugly green counter tops and a white plain back splash.

And after! Love love love it!!!
Before, the "cooking" side of the kitchen.
And After (sorry it is from a different angle!)
Here is the back splash above the sink. We thought it needed a little something extra! We also replaced the faucet and got a new undermount, extra deep sink! I love that I can just wipe the crumbs from the counter top right into the sink! It is awesome!

 I will try to take some better "after" shots of the kitchen soon and post them, as well as some detailed shots of the back splash. You might notice I also changed out the hardware to be oil rubbed bronze. Slowly but surely, I am getting rid of all the brushed nickle and brass in this house!!!

Wednesday, January 4, 2012

My Life as a Special Needs Mommy

2011 was a year of learning, growth, maturing, and evolving for me, personally. My family has been deemed a "special needs" family for less than three months (although I know we were that at the moment Ava was conceived), but in a way I feel like this has been my life forever. Maybe that is just me coping. Maybe it is because I have been being prepared by the Lord for this my whole life. Whatever the reason, I see things so differently now. With so much more perspective, I think. Over the last two and a half months, I have learned things I never wanted to learn, experienced things I never wanted to experience, and have had my feelings unintentionally (and a few times, I think, intentionally) hurt more times than I can count. And it is through these eyes, and with those experiences, that I write this post.
My life has changed dramatically since the day we learned of Ava's diagnosis. Which, in a way, I find funny. Because really, *nothing* has changed! We still love our daughter, have the highest of expectations for her life, and think that she is the best thing that has ever happened to our family. But I now see everything in the shadow of this disorder, and sometimes that shadow is darker than others. But I choose to do my best to see the positive side of things, with the Lord's help. I have always tried to be an optimist. Life is just happier and more fun that way! And it isn't easy. Being happy and positive is work! But, especially in my new role of special needs mommy, it is a survival technique that I have learned and cling to each and every day!

In the instant I learned that Ava had AS, my life was turned upside down. I went from having a relatively simple life to one filled with doctors, specialists, genetics counselors, paperwork, books, listservs, facebook groups, foundations- all geared toward AS support, awareness, and treatment. Thank the Lord for these things, but they were and still are at times overwhelming, and sometimes I just have to walk away from it for a bit. Dealing with Ava is a handful, and anything that adds to that gets placed on the back burner often. I hope to learn to juggle those things better. Included are things like my crafts, my love for home decor (Cole isn't too sad that my focus isn't on that these days), and my love for thinking of and doing for others. Things I miss and I consider part of what makes me who I am, and I look forward to the day I can do those things at full speed again AND be the kind of Angel-mommy Ava needs me to be.

Without spending time with Ava, it is hard to describe our daily life. Life with an Angel is nonstop movement, heart stopping moments, and lots of love and kisses and laughter. Basically, it is life with a typical toddler with 1000x the energy- typical moms reading this will roll their eyes and think "she hasn't met my child"...but everyone from her doctors to the specialists to the strangers in grocery stores can assure you, her energy level is beyond that of typical human ability!!!! Angels are known for their hyperactivity, and Ava is no exception! She is constant movement, and her movements are fast! And she is, a bit atypically for AS, incredibly strong. Not yet two years old, she is able to pull herself up using only her arms and hands (off of her feet, like an adult would do a fingertip pull up). Her abs are insane, and she can dangle in a balled up position (something she does when we are trying to work on walking and she refuses) much longer than I can hold her weight!

Life as a special needs mother means little time to do things I want or need to do. Sometimes just getting time to sit down and pay the bills or make appointments is a challenge, and my sweet friends have learned that they sometimes just have to talk to me with Ava grabbing the phone and yelling in the background! Each week, I think of places I would like to go, and more and more often, I think "oh I can't take Ava in there!" I know the typical moms reading this are thinking "hey! That just sounds like having a toddler!" And that is true. But the fact is, a typical child will grow out of that, and being the mother of a typical child, you will eventually get to a point where your child is self sufficient and able to go places and do things and you are too. I will never reach that point with Ava. She will *always* need to be cared for and looked after. My life is just different.

A dear friend who is also the mother of a special needs child commented to me on Facebook the other day that she hated that I was in that world with her, but at the same time she loved that I was in that world with her. And I totally understand that. While it is a life that you would have never pictured for yourself, the wonderful people and the amazing amounts of hope and love and generosity are astounding. When I first learned about Ava, I read the poem Welcome to Holland and just cried and cried. I was still focused on loosing my trip to Italy. But each day I wake up, I see more and more the glories of being in Holland. I cry less, hope more, love always, and guard carefully those that are in my life.

I have felt the need to write this post for a while, but wasn't sure how best to approach it. Mentally, I have been writing this post for a few weeks. But I figured now is the time to put my thoughts to the virtual page, and just write it out. I would first like to start by just saying that this post is not directed at *anyone* and is not meant in the spirit of ill will or malice. Quite the opposite, actually. The purpose is to help my friends and readers alike know what to say and how to approach not only me, but perhaps others that have special needs children. Some things may sound a little harsh to you, some things may not make sense. And that is fine...these are things from my perspective in my role as a "special needs mommy."

*"So, what is Angelman Syndrome?" Okay, there is absolutely nothing wrong with this question at all. And I am happy to answer anyone who asks it as best as I can. In fact, I would rather answer it and other questions for someone than have them run off to Wikipedia and become "experts" and then try to tell me how to help my child. But I always have to pause to answer. Because I never know what the question means! Technically, AS is a deletion or mutation of the ube3A gene on the 15th maternal chromosome. But I doubt that is the answer people are looking for since, if you happen to have a PhD in genetics, you wouldn't be asking the question. On the other hand, how do I sum up my bright, happy, loving, amazing daughter at the checkout stand or in the middle of Lowes? Do I give them the hard answer- seizures, lack of speech, lack of motor skills, severe developmental and intellectual delays. Or do I give them the sugarcoated answer- "She will always have severe delays but she will also always be happy- which is part of AS too!" Cole says that is what people want to hear. But it is hard for me, because I have such a desire to educate people about AS and want everyone to know- and care- as much as I do.

*"Oh, my sister's roommate's brother's friend's cousin's neighbor's stepbrother's son has something too. So I know it must be so hard for you!" Okay. I know that you might just be trying to empathize with me. But you telling me that you know of someone else with a special needs child (which is a broad and varied world) doesn't, in any way, help me. Unless that mother has had similar experiences and wants to talk to me about how to handle things, you knowing someone else isn't really all that helpful. To oversimplify, it is like you getting a bad haircut and me telling you that some random person I know also got a bad haircut. Doesn't really make fixing your hair any easier! Same principle although infinitely more important.

*"Oh, all toddlers are like that!" All toddlers may very well be messy eaters, or play in the toilet given the chance, or put everything in their mouths, or whatever. But "all toddlers" will eventually grow out of those things, my child will not. So knowing that she is on task with her peers only serves to highlight how quickly they will leave her behind. Something that hurts me and cuts me to the bone, and that I get very upset over. This is one that, as much as I try, I still cannot always stifle my emotions when someone says something to that effect.

*Comparing my child to yours. OH MY WORD. Probably one of the worst things to me. Ava isn't typical, but even if she were, children are individuals and each develop and grow at their own pace. Having Ava compared, in any way really, to typical children is so hurtful to me. Do not use my child to feel better about your own.

*Being advised on having more children. We have talked to our immediate families and a very few trusted friends about this topic, as well as doctors, specialists, and genetic counselors. And it is our decision to make. One misconception is that all genetic disorders are inherited. They are not. Ava's is not. Her's is a completely random event that happened at the moment she was conceived. It was nothing I did, nothing I ate, not the flu that I had, nor the medicine I took. I could not have prevented her from being born with Angelman Syndrome. Our next child will only have a 1-2% greater chance of having AS than the average child born each day, and that increase is a "theoretical increase" based on several variables, which we do not know even exist in my body.

*"My child has mild developmental delays, so I understand how you feel." I know how hard it is to think something is wrong with your child- remember, when we started down this road, we were told that Ava had general global delays and would grow out of it. And when I thought that was what was going on, I remember thinking about my few friends at the time with special needs children who have lifelong disabilities and challenges, and just hurting for them, because I was so upset over just delays! Which seems so silly now. I guess because I am on the other side of that "special needs" line. And the person I was before could not comprehend, or understand how much I couldn't comprehend, what it is like to be the person I am today.

*Telling me what I can do to help my child. I have spent hours reading, talking to therapists, specialists, doctors, and other AS parents, learning about ways I can help Ava achieve more and be the best little Angel she can be. And overall, I appreciate friends letting me know about new and different therapies and treatments that they hear about. But every once in a while, I get a "you really need to be doing this for her." or "if you would just do this, she would be getting better." These mostly come from people that have spent little to no time with my daughter, and just as typical mommies are annoyed by unsolicited advice, special needs mommies are annoyed too. And offended...because hello? Do you think there is a website or book or magazine article about our child's condition that we haven't read?!?! All of the special needs parents that I know, and Cole and I, pretty much live and breathe our child's disorder. And if it is out there, we have tried it, want to try it but can't get a doctor on board, or have ruled it out for good reason.

I certainly don't want people to hesitate to talk to me, afraid that they might hurt my feelings or step on my toes. I don't want to be that mom. Like I said, I almost always am able to look at and take in the spirit of what is being said, regardless of the words. But I hope that this list helps people without special needs children to approach a world that is unknown and unique in it's own right. And I hope that it gives you a bit more insight into my life with a very special, amazing, perfect Angel. She is a light in this world, and shines so brightly to everyone who meets her!