Angel Words: Volume 5

Well friends, today is LEAP day! A day that happens only once every four years. Pretty special day! And appropriately enough, the first year we celebrate Rare Disease (& Disorder) Day is also LEAP day! Angelman Syndrome is so rare that we don't have a specific day for AS- something that is on my list to change! So we just jump in on the Rare Disease Day, even though Angelman is a syndrome, not a disease. Which is why I call it Rare Disease & Disorder Day. Yes folks, I do march the the beat of my own drummer. His name is Fred. ;)

Anyway, we have a big doctors appointment today, and another coming up in April. Both appointments are for Ava's development, and she will be seen by several very highly regarded Developmental Pediatricians. When we first went to see the developmental pediatrician, I had a whole list of things that Ava couldn't do in comparison to her typical peers. But now, with her diagnosis and a whole new set of peers, along with a different outlook on things, we are ready to walk into the appointment with a list of things she can do, and I must say, that is a fabulous feeling!!!

So today, my Angel Word is INSPIRING! Ava is inspiring to me. The obstacles she has overcome, her happy and head first approach to seemingly unachievable tasks. Ava is only two, I know. And there may very well come a time when she protests against therapy, gets frustrated at the lack of progress, etc. But I have never seen a child so eager to work and willing to do things over and over again, despite being tired or hungry. We are usually early to therapy, and every day, I have to continuously keep her away from the door that leads into the therapy area from the lobby. Because every day, we arrive, I put her down, and she bolts to the therapy door and is banging on it like "I am here! I am ready! Let's do this!!!" Seeing how happy she is, seeing how she shows off for Daddy when he is there, watching her take a few wobbly and ataxic, yet independent, steps at a time and feeling the tight hug she gives me when she has done so....it just is inspiring. She never quits, never gives up. She always gives her therapists a work out!

I am so proud of my little Angel. She is amazing and her outlook on life, even if it is part of her disorder, is astounding.

Dreaming of a Mudroom

So I have been literally itching to do a home project. I am a glutton for punishment maybe. But I just love doing home improvement projects!!! I have a list, as you may recall, but there is one thing that isn't on that list, that I *think* will be an easy project for Cole and I to do. If I can talk him into it. And that is a big if.

Honestly, I am not even sure this is a good idea. But...

We have this little nook in our garage, that is currently cluttered with a lot of stuff:

It doesn't always look like this. Okay. Maybe it does. But lets just pretend. Mmmkay...

As you can see, it is a nice little nook. And no nook should go unused. That is one of my motto's for home decor. A good nook is a golden opportunity! So I was thinking that, since I really want a mud room, and my house circa 1997 wasn't built with one on the inside, why not make one in the garage nook?!

The idea is to use this leftover piece of bead board my sister gave me (projects run in the family):

and then add some trim moulding and hooks to the top. Then add a bench and baskets, similar to this one, and voila, instant(ish) mudroom!

So here are the potential problems:

1. Spiders. We don't have just a super buggy garage, but I am terrified of a spider being in a shoe, so I couldn't leave my shoes out there. Not sure I could really leave my coat and bags out there either. Gonna have to think about it.

2. Usage. Would we use it? I don't know. It isn't the type of project that would add any value to our home, therefore I don't want to spend a lot of money on it. So if we didn't use it, it's not worth it.

3. Cole. He is the type of guy that is happy with plain white walls and green counter tops. Which I appreciate about him. But sometimes projects like this take some convincing if I want his help. Now if I am going to do it by myself, he is just fine with it! HAHA!!!

So, what is your vote? Go for it? Or not?

Angel Words: Volume 4

Okay, I know. Last week I promised that today's word would be about Ava. And I had one planned that I will do next week that is about her. But today's word just fits this week, and I really feel like I need to share.

Life with an Angel is...

HECTIC.

Hectic. Busy. Chaotic. However you want to put it....it's crazy, y'all!!! Life in general is busy, I know. Kids have school and activities, adults have work. But life with an Angel is another level of busy. Or maybe just a different kind of busy. In addition to the activities that we would have if Ava were a typical two year old- errands, grocery shopping, playdates, park trips, etc., we also have a barrage of doctor appointments and therapy. Just February alone, we have/have had 6 specialist doctor appointments, a two year checkup, and, of course, therapy.

Therapy with Ava is fun, but time consuming and sometimes challenging to get to. Let me just give you guys a little sample of our life, this is our schedule this week.

Monday: OT makeup session in the morning, Developmental Therapy in the afternoon
Tuesday: CT scan and neurosurgery appointment
Wednesday: Physical Therapy in the morning
Thursday: OT and makeup Speech Therapy session in the morning
Friday: Speech Therapy in the morning

Tuesdays are usually our "busy" therapy days- we have OT, PT, and Speech on Tuesdays!

Add to that all of our usual activities, like lunch and nap, and you have a very full week. Not that I am complaining at ALL! I am so thankful and blessed to be able to stay home with Ava and be able to attend therapy with her and do things with her. And I am also so thankful for therapy. It has been amazing to watch her grow and I just cannot express how wonderful her therapists are- they are amazing!

And as much as I get worn down running back and forth to therapy and doctor's appointments, I know that all that means that we are doing our very best for Ava, to help her be the best little Angel she can be!!! And I love that!!! I also love hearing her "sing" in the car with the radio- something she has started doing more and more!!! It is so funny!!!

Speaking of funny, yesterday was a BEAUTIFUL day so after nap, we decided it would be fun to get out on the trampoline! Daddy was home and we had a blast, as you can see...

Today, we are planning a walk after nap. I can't wait! I am loving this weather. Just hope we don't have to pay for it later... :/

A Skirt for a Party

I have been tirelessly working on getting Ava's birthday party put together, and I think it is coming along. Although I am sad that some precious lollypops I ordered may or may not be delivered in time. Oh well.

But one thing that has really been bothering me is the "main table." I am always a little envious of those beautiful party tables you see on pinterest, but I didn't know how I could manage a great backdrop since scooting the table back against the wall would result in a large light fixture hanging down for everyone to bump into. But then I had a stroke of genius insanity both? We will see. I will give you a hint. It involves three dozen balloons and a very sweet husband. :)

So once I got the table backdrop figured out, and got the layout of the tablescape itself set in my mind, I was bothered by the fact that you can see the underside of the table. Not that I don't love my table. But I really wanted a skirt to complete the look. Problem is that our table is large and awkwardly shaped, as the edges are scalloped. So as I was perusing Pinterest, I found this picture:

Source

And I just loved the fun look! So I started thinking, I could make that!!! In Ava's birthday colors! So...


First, I gathered my supplies: scissors, painters tape (I used painters tape so it wouldn't hurt my painted table), and $3 worth of paper streamers from Walmart.

Then, I got to work! I stretched out the tape in the corner of my kitchen, with the sticky side up so I could easily place my streamers. I would put the end of the roll on the tape, roll it down, then cut. That saved on a lot of pesky measuring! ;)

After I was done, I moved it and taped it just below the table top on the side of the table. I am not worried about the tape showing because of the table covering I have, but if you are, you could always tape it to the underside of the tabletop.

(please excuse all of the party mess on the table. and around the table. and everywhere in the picture!) I love the result! And it was so easy! I only did half the table because the other half will be covered with the backdrop. I am still trying to decide if I want to trim them or just let them be. And I did two strips of tape, and you can see where they overlap. Had I been thinking, I would have lined up the colors better, so that I wasn't missing a green right there in the middle of the picture. But I don't figure people will notice. Just me. And I will just pick my eyeballs out looking at it. Oh well.


What are your favorite party decor tricks?!?!

Angel Words: Volume 3

Thank you for all of the words of encouragement yesterday. I was having what we special needs moms simply refer to as "one of those days." If you are not a special needs mommy, then trust me on this: You have no idea what I am talking about and for that, I am thankful!!! I love my baby and think that she is absolutely perfect. But I would never wish the pain and heartbreak of a diagnosis like AS on anyone.
Something I struggle with, but know is so important, is contentment. I struggle with this in every aspect of my life- as Cole can attest! I have a hard time not worrying about the proverbial Jones' and just accepting my lot in life. (Not that it is a bad lot at all, and I am so thankful for what we have been given!!!) But one area I am really focusing being content on is Ava's life. Much like last weeks word, acceptance, contentment is one of those things that I have an internal battle waging between my heart and my head. My heart says that I shouldn't be content with her life and her struggles- because I can make them better and I need to find a way to do that! But my head says that she has AS, and being content is the first step to helping her deal with the struggles in her life.

I don't know which is right. Maybe both? Maybe neither? I don't know. The Bible talks a lot about contentment. Many verses speak about physical, earthly possessions. But I Cor 7:17 says "Only let each person lead the life that the Lord has assigned to him, and to which God has called him. This is my rule in all the churches."

This is the life that the Lord assigned to Ava. And to which God called her. And this is the life that Cole and I were assigned and called to lead. So while I keep pushing ahead and working to make my baby girl's life a better one, I know that I need to remember that this is the place God wanted me. And this is the life He wanted for Ava. I don't know why, but I do know that all things are for His glory.

My sweet friend and fellow special needs mommy "T" shared this story with me on facebook last night, and I thought that it was appropriate for this weeks word. I hope you enjoy...and I needed a box of tissues when I read it!!! And I promise next weeks word will be about Ava!!!

The Special Mother
by Erma Bombeck

 Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. She's used to profanity"
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice"

A little sad...

I am feeling a little sad tonight. Usually Valentine's Day is one of my favorite days of the year. There is pink EVERYWHERE, my sweet hubs always gets me gorgeous flowers, and eating candy is not only okay, it's expected!

But this year is different. While I read about and see all of Ava's typical peers exchanging valentines and making cookies for their friends, I am once again confronted with a life I will never have with my daughter. My baby will never do those things (at least not until they find a cure). I have those moments just about every day. When the checker at Kroger brags on her two year old grandson for being potty trained already (which happened today too- double whammy!). When a tired but well meaning friend laments about her toddler who "won't shut up." When I tell another mother about Ava's condition and I see the pity and sadness in their eyes as they gaze on Ava, and the relief and thankfulness as they look back to their own child. Those are the moments I just want to scream! And cry. And be just down right ANGRY for my life and my daughter's lost future.

I don't know if this will ever get better. My AS friends say it will. But I don't know if it gets better or if you just become accustomed to the "slaps" as I call them. As in "slaps in the face." Maybe a little of both?

Most of the time, I feel like I do really well at just focusing on Ava. How wonderful she is. The things she can do. But there are times that that is really difficult to do. Not that she isn't wonderful. And not that I am not proud of her for all that she is able to do. But I want so badly for her to be typical! I don't want her to struggle. I don't want her to miss out on all of the wonders of a typical life.

Sorry to be such a downer on Valentines Day. Some days are harder than others, and this one just happens to be hard. But tomorrow is a new day, and with it brings new hope and a renewed strength. And at the end of the day, I know that one day, my baby WILL speak and WILL do all of the things her condition will not allow. I don't know if that will be on this Earth or in our Heavenly home. But I cannot wait for that day to come!!!

Big Day

Today was a big day in the world of Angelman Syndrome families and a big day for science! Today, it was announced that the clinical trial of the common antibiotic, Minocycline, as a therapeutic treatment for Angelman Syndrome will soon begin! You can read all about it here.

This man....

 Dr. Edwin Weeber, has been working with the Foundation for Angelman Syndrome Therapeutics to cure Angelman Syndrome. And he has in mice!!!! Now the clinical trials for HUMANS is about to start.

Most of you probably cannot imagine the joy, excitement, nervousness, happiness, and just gratefulness that the parents of AS individuals are feeling tonight. Many of us have cried together over long facebook conversations about the possibilities of what this could mean. I remain cautious. Guarded. But still overwhelmingly filled with hope.

So I ask two things of you....

First, please, please PRAY!!!!! Pray that this works. Pray for Dr. Weeber and his team. Pray for FAST and ASF. Pray for the Angels that are in the first round of the trial, for their safety. Pray for those parents like me that want so badly for this to work and to be a part of the next trial. And most of all, pray for all of our Angels that NEED this to happen.

And secondly, please go watch the Hope for a Cure video about it on the FAST Website. It is on the home page, first video. Watch Finn and Sophie's stories. Hear what Dr. Weeber has to say. Educate yourself. This would be a HUGE breakthrough for medical science!!!! A CURE for a GENETIC DISORDER! If this works, the possibility to cure everything genetic is that much closer! History is being made, and it is being made with Angels and Dr. Weeber leading the way.

Oh I could just kiss that man!!!! (Shhhh, don't tell Cole I said that! HAHA!)

Angel Words: Volume 2

This post will be short and sweet. :) Mostly because my poor angel has Hand, Foot, & Mouth virus, and it has spread to everywhere on her body! So we are back to the doctor again today!

Poor sick angel...

Today's word about Angelman Syndrome is ACCEPTANCE. I cannot tell you how many nights, last night included, that I have laid in bed and thought about what my life is now. What the life of my daughter will always be. And how that one little gene missing on that one little chromosome has turned our whole world upside down! But if that is all I thought about, I couldn't move on, couldn't live, couldn't enjoy my daughter for the blessing and the amazing person that she is!

Acceptance of something like this is hard. Harder than anything I could have imagined. And I still struggle with it. I think because somewhere in me, when I think about accepting Ava's condition, I think that it means that I am giving up. Not hoping and praying for a change, a miracle, or a cure. But I know logically that isn't the case at all. We can accept a reality in front of us but still have hope that it isn't a permanent reality. And the truth is, AS will very likely be cured or at least great therapeutic drugs that suppress the condition will be discovered in Ava's lifetime. I pray that that also happens within Cole and I's lifetime. Because we would love nothing more than to hear Ava's sweet little voice talk to us. But we also know that if that doesn't happen on Earth, that our permanent reality of Heaven will not include Angelman Syndrome!

So I choose to accept my daughter's condition, but not resign to it.

I need to get my day going (we had a rough night and Ava and daddy are still snoozing away) but I wanted to leave you with some sweet pictures that I took- and mind you this child was running 102.5 fever at the time. Not much can slow an angel down!!!

Dropped her paci...because she was being naughty!

She loves to get into her changing table goodies!

And next weekend is Ava's birthday party! Don't worry, I have a professional photographer coming to take the pictures, but here is a sneak peek. It is taking over my dining room!!!! Ahhhh!!!!!

Angel Siblings...

***PLEASE NOTE: WE ARE NOT PREGNANT!***

I think the only thing being more special than being an Angel parent is perhaps being an Angel sibling. I have a close network of online "angel parent" friends, and many of them have several children. And I just love when they share things that their typical children have done, said, or written about their angel brother or sister! One of my favorites was an older angel playing with her younger typical brother. And the mom overheard the typical brother say something to the effect of "I know you have that 'angel' thing, but that doesn't mean that you can pull my hair!" I just rolled!

I have asked my fellow angel parents several times about what it is like to have an older angel child and younger typical children. And the response I get is always the same. They all say that it is the best thing that they ever did for their entire family, and that their children are all so wonderful and precious.

I know that having another child or two will be hard. Harder than usual because of the challenges we face and will face with Ava. But Cole and I both are committed to having more children (although we somewhat disagree on how many more to have) and knowing that Ava's AS is a random event gives us the "green light" to have more children. We have our genetics appointment this week, and I think after that appointment we will really be able to seriously evaluate when, how many, etc.

The idea of having more children both excites and scares me. There is an article going around the facebook world about how having one child is so hard, but that having more children gets easier. I pray that holds true for me. Because having Ava is hard. And sometimes, mostly in the hardest times, I question my sanity in wanting more children. But at the end of the day, I know it is what I want, and what my heart needs to help heal from the pain and mourning that we continue to experience in the wake of Ava's diagnosis.

If I am being perfectly honest, I must admit that I am somewhat fearful of typical children. This sounds strange, probably. But an Angel is all I know. And looking back, knowing that all of the smiles and happy-go-lucky nature was mostly the AS, I worry about what our future (and Lord willing typical) children will be like. I know that I will love our next child/children as much as I love our Ava. But a small part of me is also fearful that I won't care about them as much. I know this really won't be true. But I just cannot fathom loving or caring for anyone as much as I do Ava. I was snuggling on the couch with her last night before bed, and I just prayed that the Lord would allow me to love our other children and dote on them and nurture them as much as I do Ava. I think this fear is a result of how much I know Ava needs me and relies on me- even more than typical children.

I love our future children- or at least the idea of them- so much already. And as we begin to explore the idea of adding to our family, I pray that the Lord gives us the wisdom and courage to do His will.

Angel Words: Volume 1

When you read about Angelman Syndrome, you read words like "intellectual disability", "seizures", "nonverbal." But reading about AS doesn't really give you the full and complete picture of Angels. Does my child have an intellectual disability? Maybe, we don't really know yet. Does she have seizures? Not yet, but she probably will. Is she nonverbal? So far, yes. But we have hope!

Reading those words, you might not understand what Ava is like. How she communicates (because she does- much clearer than many of the three year olds I have worked with in the past!), what she is able to do. Many bloggers do a "Wordless Wednesdays" every week, but I have decided to do "Word Wednesdays", and each week I am going to (at least try) to pick one word that describes AS, my Angel, or our lives dealing with Angelman Syndrome. This weeks word is...

ABLE.

Able. Ava is ABLE. There are so many websites that talk about what individuals with Angelman are not able to do, that I find it important to point out what Ava is IS able to do! Because she can do so many wonderful, special, magnificent, and amazing things, in spite of her diagnosis. And those are accomplishments to be celebrated. Because the things she is able to do take her 10 times longer and she works 10 times harder for them than a typical child, and they are major milestones that many individuals with AS may never achieve, and she has done so by the age of two!!!

Ava is ABLE to:

• Sit up unassisted, and has done so since she was 10 months old!
• Feed herself, something some AS individuals never accomplish! She has been doing this since about 10 months old as well.
• Crawl. She has been crawling in some form since about 8 months, and now crawls almost as fast as I can run!
• Pull up on things! This started around 12 months and hasn't stopped since!
• Cruise around furniture! She started this about 14 months and now will let go for a few seconds at a time.
• Plays games like peek-a-boo and hide & seek (with objects)!
• Gives kisses- something she has done since she was about 4 months old, well before most of her typical peers!
• Turns pages in a book- if she is in the mood!
• Climbs on the furniture- not my favorite achievement, admittedly. But one none the less!
• Can take steps with minimal assistance and has even stood for a few seconds and taken one independent step!!!

My sweet Ava, mommy and daddy love you more than words can express, and we are so very proud of you for all of the things you have accomplished in your less than two years on this Earth! And we know that you will break the mold for Angelman Syndrome and do things that blow everyone away!