Summer is here and I gotta update!

To say it's been slow and easy living here in Chandler AZ, I'd be lying. I wonder if I will ever get to say that about our lives. I used to say "I'm board" as a kid, all.the.time. I would call my mom at work in the summer just to tell her that and without fail the words I heard back was "well you must be a boring person." Au contrair mama, I haven't uttered that word in probably 9 years and 10 months and I actually look forward to the day I can say it again. And I hope to call my mom and say that to her and when she tells me I am boring I will say Amen!
But since those words I won't be able to mutter for at least another 15 years, I think I'll just go with what we got. Non boring lives.
I have had so many cute stories I wanted to share. I wanted to share an update on Lily. I have wanted to do a lot but I hate to blog on the ipad and my laptop is on it's way out and lately at work, well I have to work. Why is adulthood so annoying?
I am going to do a long wrap up and try to keep it as entertaining as possible, since I feel I am loosing my edge, I may have to throw in some quotes from 50 Shades to see if you're listening. Sex sales.
Most importantly is the Lily update. She is ok. Yes I said ok. She is happy when she isn't seizing. So that is good, but the seizures can be as many as up to 10 a day. And 3 of them being the long tonics that knock her out and ruin her day. So that sucks. She is now on summer break and we decided after two summers at home to put her in a summer camp. I hope it is the right decision. Andrew took her this morning and she was so excited to go! But then had a seizure in the parking lot right before drop off :(
They are going to go swimming today and she loves swimming so it is my hope she gets to sleep off the seizure and then gets to enjoy her swim. She has upcoming neuro and eye doctor this summer. Her van got pimped out after it hit the skids and daddy put the fear of God in the kids to keep it clean this summer. It'll prob make it thru June that way. I think that is a good catch up on Lily. Her disposition is happy. She is enjoying the Ipad more and more and since she got a new wonderful Speech therapist she is getting a communications eval and we hope she will get a new Ipad that no one else touches and we get it mounted on her chair and she can use it all the time. And except for the dang out of control seizures, she is good. She is still on 4 meds and we haven't been able to do any weaning like we had planned. That just made a whole lot of problems. So still on 4 meds and she is still uncontrollable seizing each day. Cheers CDKL5. Suck it.
Andi Jane. Andi has completed 1st grade. She got the caring award from her teacher and I can't imagine any other award being more fitting. Love that girl and her heart. This week her and Oliver are at VBS. So crazy Oliver can now go to VBS at church. (Vacation Bible School for you heathens).
Oliver's Speech therapy came to an end until the next school year. It is going well, he is so darn cute. He has to take his backpack with him each session for 30 min of speech. Cute kid. Sorry is that one of those it's only cute if it's my kid type of thing?
June 22nd Andrew and I are off to New Orleans! We are going to the National Rett Syndrome Conference (same one I attended 2 years ago in Colorado Springs)! I am so excited! On Sunday we are having our own CDKL5 conference within the Rett Conference! I have to do a little speaking thing with another board memeber and that makes me a bit nervous, but I cannot wait to meet other families. There is just nothing else like being around those who truly walk in your shoes. Plus this will be a nice little vaca for Andrew and me. We've never been to New Orleans and I imagine I may get a few beads after a few hurricane's if the night goes my way.
I kid. I kid.
(maybe)
I've changed my mind on continuing this post. Gonna break it up. Andrew's wonderful Grandma Gloria passed away and just Andrew, Andi and I got to make it back her her service and I'd like to go into detail about something that recently happened on my youtube channel. These are things I cannot share lightly and refuse to throw in a silly post. So I will end this update and will work on the other two sometime before Christmas.

Daddy Daughter Dance

I just wanted to share a cute picutre my friend Codi took of Andrew and Andi Jane before the Daddy/Daughter Dance at our church a couple weeks ago.

Here is a shot I got from my cell phone

Sister Act

I guess it is pretty safe to say I have lived a unique life. I have always stood a head above everyone else, literally, hitting 5’11” in the 9^th grade. My first paid job was at 14 years old during my summer stay in NYC modeling for a national magazine, only to be followed by many more. And while my friends were figuring out how to get the best tan on spring break, I was in NYC, in the snow, taking the subway getting to jobs at 15 years old. Those things made my childhood pretty different from the rest, definitely, but I also had another gem that put me even in a more unique situation, and that was my brother. My brother is one of a pair; he and my sister came into this world in October 1972 in a very small hospital that didn’t have a surgeon on campus to deliver him by a much needed caesarian section, after a normal delivery of my sister. Because of this devastating fact my brother was deprived of oxygen for nearly 30 minutes causing a severe traumatic brain injury. I joined the family 6 years later. My sister was a walking, talking, feisty ball of energy and my brother was a wheelchair bound boy with severe speech delay and the biggest smile life can offer. They were my normal. Wasn’t everybody’s brother in a wheelchair? As time moved on I started to realize maybe this wasn’t so normal. Then the birthday wishes were every year for him to walk. Or for my mom to have a new baby so I could have a “normal” brother. Then I stopped mentioning him to my friends. I only had a few and certain friends over to our house. It wasn’t that I was ashamed of him. I loved him. I just didn’t want to have to explain him to the other kids. I did a lot to help with my brother, he asked, I did. I remember being annoyed at times that I couldn’t go to friends after school because I had to be home to meet him off the bus, but for the most part “he wasn’t heavy, he was my brother”. My sister and brother had a far different relationship. They fought all the time. And they would fight to leave marks. Some would think it wasn’t fair because she was able bodied and he wasn’t, but in her defense he could be mean. And he had a powerful wheelchair and we joke about our permanent dents in our shins from years of his abuse. He has full mental capacity and is smart as a whip which was a double edge sword for him. He saw the people staring. He knew how hard each intentional move was to make and he also knew the embarrassment of each unintentional move that his spastic body would make. He had a right to be angry. We had a right to feel angry by our different family. We all were entitled to our feelings, but I look back at my old self and wish I handled it all differently. Maybe if I weren’t so tall and body conscious I would have stood up for my brother more often. You would have thought the modeling would have made me proud, helped me walk tall, but it wasn’t like that. I was still called “skinny”, “twigs”, “string bean”, “green giant”, “Kimmy long legs”…etc. The modeling at times actually made things worse.

I remember one day in high school making fun of the “short bus” and the minute the words came out of my mouth I felt sick. I hated myself for denying my life. I hated myself for denying my brother who rode that bus every day from the age of 3 to 21. I  sucked. I hated myself. But in that moment of self loathing I knew I had to change my position on my different family.  I decided to write a speech about cerebral palsy and my brother for speech and debate class. And when I spoke the class was silent. I got a 100% and my teacher told me it was the best speech she had heard. I was proud. I knew that I was special because we were different and different was good. It was awesome actually and my brother was worth me yelling off the rooftops BRYAN IS MY BROTHER AND I AM PROUD TO BE HIS SISTER! It just sucked it took me 18 years to finally get the courage to just be me.

(Jennifer, Kimberly and Bryan 1979)

Looking back my sister and I sit and talk about growing up in our different family and I ask her the difficult question. “Did you feel guilty for being “normal” and he had it so rough” “Yes” she says. She said from the very beginning of her life she felt guilty for the hand she got dealt and for the hand he got dealt. It made so much sense to me as an adult looking back. I looked up to her and I never understood the fight they had for each other. As a kid you see the fighting, as an adult you see why the fight. Hurt, guilt, jealousy, anger. My parents did all they could do to give us a “normal” childhood and I know they did their best, I don’t know what we could have all done differently. I think in life we are thrown head first in situations and have to figure out our best way of not drowning.

The crazy thing about my unique life is now I am the mom living with typical kids and a special needs child. My daughter is a far different from my brother, her disease affects her quality of life in different ways, but it is still very much the same situation.

I had to laugh the first day I drove our full size wheelchair van we bought for our daughter, the same looking van I grew up in and was embarrassed to be seen in as a kid. How did that happen? How did I become the mom? My mom? Don’t things like this skip generations? This isn’t even a genetic disorder they share. How unique do I really have to be?

(Bryan with his niece LilyAnna)

So here I am a 33 year old mom with 3 kids. One typical daughter, one special needs daughter and a son. Talking to my husband I tell him I want our kids proud of their sister, stick up for her, I don’t want their sister the secret at home. What do I need to do to encourage them to have courage? How do I still make them feel special? Important? Compassionate? I think I am doing the right things, they are still all young, 9, 7 and 3 but I see qualities that make me proud. My daughter would move mountains for her sister and wants to have a job as a therapist when she grows up to help other kids. She wants to also be a singer/songwriter/actress but she is 7 and believes she can do it all and I love her for that. I love each of my kids dearly. So much it makes my heart hurt sometimes. I want them to be united and feel special for their unique family, not embarrassed or shameful.

(Andi Jane with her sister LilyAnna)

Recently on the CDKL5 facebook page we had a popular thread talking about our typical kids and how we handle them with their CDKL5 sibling and we had a lot of people sharing struggles and others sharing advice. It was a wonderful thread that left me wondering what the experts say. I would think I should be an expert, but I know how sadly mistaken I would be for thinking that. I know full well what it is like to be the sister of a kid who people stare at, talk loud to (as if he was hard of hearing), feel pity for and now I am the mom raising kids who experience it as well. I know what it feels like yes, what I don’t know is exactly the right way to do it from this angle. Luckily it dawned on me, why don’t you ask Jeanette Manley? This is her field! She was a wonderful support for us when our daughter was really young and thanks to the fabulous facebook we were still in contact and she was so wonderful to share her opinion and her resources with me and I am so excited to share all that she had to say. I can tell you I ate this article up and couldn’t wait to share it with other families. I just wanted to share who I was and the struggles I have had living this unique life and by sharing I hope I am helping others and myself.

Here is what Jeanette had to say:

Special Relationships:  Children with Special Needs and their Siblings:


Sibling relationships are often our longest ones, spanning over the course of our lifetimes.  Negotiating our relationships with our siblings is usually our first introduction into learning to relate to others.  It is no wonder then that our sibling relationships are frequently ambivalent and fraught with a mixture of love and hatred, jealousy and loyalty and many, many opportunities for both rupture and repair.   It is often our siblings who know us the best:  what we like, what really "pushes our buttons", or what really motivates us.  We "share" our parents, our childhood experiences, and are exposed to the same set of family values and belief systems.  Often this "shared history" bonds us closer together and other times seems to pull us apart.

As a therapist who has worked for over 20 years with families having children with special needs, these general observations of sibling relationships seem to hold true whether siblings are typically developing or whether they have special needs.  While talking with school age brothers and sisters of siblings with special needs, I have found that they often echo the same rivalries, joys, shared memories, and experiences as those with typically developing siblings. However, it is also my experience that sometimes those feelings may be expressed more intensely, less directly, or occasionally withheld in a protective manner from both parents and themselves for a variety of reasons (e.g., feelings of guilt, shame, or fear of reprisal).  My observation of toddlers and preschool children of siblings with special needs has been that they express their feelings more openly, less defensively, and most often through their behavior (e.g., aggression, or regression to an earlier stage of development).  


Characteristics of Siblings of Children with Special Needs


Donald Meyer and Patricia Vadasy summarize research as well as some common themes from their work with children who have brothers and sisters with special needs in their 2008 book, Sibshops: Workshops for Siblings of Children with Special Needs (Revised Edition).  Some of the things they mention are that siblings of children with special needs frequently relate:  1) worries that they will develop the same problems (e.g., seizures) as their sibling, 2) guilt about their own abilities (i.e., those that their sibling does not have) or about having negative feelings about their sibling, 3) resentment due to loss of parental attention or perceived unequal treatment, 4) feelings of shame or embarrassment (particularly true during the adolescent period when children may desire everything in their lives to appear "normal" to others), and 5) increased responsibilities for their siblings care.  On the other hand, they also report that siblings of children with special needs often demonstrate a greater capacity for: 1) maturity, 2) insight into the human condition including increased appreciation for their sibling's abilities as well as their families, 3) tolerance and compassion toward others, 4) loyalty to their siblings, and 5) advocacy on their sibling's behalf. 


What Parents Can Do to Help 


Kate Strohm in her 2005 book, Being the Other One, cautions parents to remember that each child will react differently to his or her sibling with special needs based upon many other variables such as age, personality, temperament, etc.  Each child is unique so his or her needs will be unique.  What is most important is to pay attention to what your child is telling you that he or she needs.  Looking at the underlying meaning behind behavior is the key. Once a child's underlying needs are identified, then strategies to help support your children will become clearer.  This idea is echoed in Thomas Powell, ET AL., 2006 book, Brothers and Sisters:  A Special Part of Exceptional Families, Third Edition. The following "Ten Ideas to Help Special Siblings" are a melding of suggestions from both of the above books for parents to support siblings as well as my own observations of what has been helpful over the years in working with families of children with special needs.


Ten Ideas to Help Special Siblings


1) Facilitate an open dialogue of communication.  One of the most powerful and healing things that a parent can do is to encourage the open expression of feelings within the family.  When children feel that someone will acknowledge their feelings, even the ones the may be feeling guilty about having (e.g., jealousy about the amount of parent time the special needs child requires), they begin to feel supported, understood, and valued.  When children can verbally state their feelings and be heard, there is less likelihood that they will "act out" those feelings through their behavior or internalize those feelings and perhaps become depressed or anxious.


2) Hold regular family meetings to talk about how all are feeling, including "you" the parent. Parents can often serve as a model of what feelings can be shared and how.  They can demonstrate, for example, that is okay to have ambivalent feelings about the disability and how it affects everyone in the family without devaluing their child with special needs.  Parents are not encouraged to "let it all hang out" as you are entitled to your private feelings and do need to maintain boundaries and not overwhelm your children.  However, mentioning that you are "feeling tired of going to therapy appointments" and asking siblings how they feel about it, is perfectly fine to elicit more open and honest communication about the challenges within your family. 


3) Share information about your child's disability.  This is important to tailor to the developmental age level of the sibling.  For example, younger children (preschool and early school age children) may need to hear that their sibling's disability is "not catching" and to begin learning appropriate labels for their sibling's disability. When providing information it is important to ensure that the information is understandable.  You might want to consider providing some information and then ask, "Does that make sense?" is there anything else you are wondering about?" Children also need to hear balanced information about their siblings' disabilities - sometimes there is positive and encouraging information to be shared and, by all means, share that information as well.


4) Encourage siblings to ask questions.  This is particularly true about issues or concerns that they perceive as upsetting to parents.  Your permission to ask questions reduces the possibility that they will try to protect you at their own expense of needing to talk.   At times you may even elicit questions by asking such questions of your child such as, "Have you ever wondered what it might be like to be blind?"


5) Be Fair.  Of course, any parent will tell you that it is impossible to be completely fair with their time given to their children.  Sometimes individual children need a lot more attention given
their presenting needs at the time or due to their on-going dependence upon you. However, parents do need to be aware of not always assuming that the sibling of the child with special needs is to blame during disputes, mindfully scheduling special 1:1 time with all of their children, encouraging the special needs child in having family responsibilities/chores (whenever possible) and ensuring that the child with special needs is not given more gifts than his or her siblings. 


6) Acknowledge the care given by siblings to their brother or sister with special needs.  As long as parents are careful not to overburden siblings, they can learn a lot from being a helper and friend to their brother of sister with special needs.  What is important is to allow the sibling to have some choice in how much responsibility he or she takes on, otherwise, this can lead to resentment later on.


7)  Help siblings build some space and independence.  A healthy relationship between siblings involves allowing each to feel comfortable in doing things with other adults and peers that does not always involve their brothers and sisters. Encouraging special 1:1 time with other important adults or family members also helps with that extra attention that you may not be able to give at times. Finally, in addition to being able to share with their siblings, they may also need to have space for their own personal things that they value. 


8) Help siblings feel valued for who they are---their own individual talents, interests and achievements.  Recognize, encourage and cultivate interest in activities outside of the family.  All children learn self-esteem through experiencing a sense of mastery of new skills.  While it is true that arranging time for sports, music, or dance lessons, etc. is truly challenging with competing commitments for doctor's appointments, therapies, etc., sometimes enlisting the help of a relative or other parents can help reduce the stress of additional time demands.  Likewise, there is certainly nothing wrong with limiting your child's participation to one activity at a time --- most parents find themselves having to make these choices all the time, whether the child has a sibling with special needs or not.


9) Build your child's capacity to deal with questions, etc., from the outside world.  Siblings of children with special needs need a simple way of explaining their brother or sister's disability to their friends.  They also need to develop a repertoire of successful comebacks to possible teasing from their peers.  As a parent you can rehearse some simple comebacks to teasing that will likely be very effective in reducing the behavior of peers.  For some great ideas about this topic, you and your child might read, How to Handle Bullies, Teasers, and Other Meanies   (Kate Cohen-Posey, 1995).  If the teasing is prolonged or turns into bullying behavior, you may also need to contact your child's school to ensure that they are aware and providing support for your child.  You may also want to have your child attend a sibling support group or Sibshop to gather support of ideas from other siblings of children with special needs.


10)  Know when to seek outside help for your family.  Sometimes your child presents with symptoms or behaviors that may indicate that he or she may benefit from additional counseling to identify and process feelings and concerns.  Some symptoms to look for include: increased aggression, withdrawal, increased nervousness/anxiety, physical complaints without medical explanation, poor sleep and appetite, destructive or other worrisome behavior.  Both individual and family counseling may be helpful. Be sure to look for a therapist who has experience working with families who have children with special needs. 

Jeanette Manley, M.A., L.P.C. is a professional therapist having 26 years of experience working with children and families, with over 20 of those years working exclusively with families who have children with special needs.  She is currently working as a clinical supervisor for mental health consultants serving children birth to five.

My Team Triumph

I know I am so over due for a post! Short and sweet, Lily is having really bad seizures. She is currently having 2-3 tonic clonics a day lasting over a minimum of a minute long each. She is also having her clusters and drops through out the day. We are still tweaking some things and relying on God and trusting that we are doing the right things.
We had a follow up sleep study to check on her apnea and she went from 10 spells and hour to none! That was a blessing to hear that her awful surgery was a success. Although she still has sleep issues, like it took her 225 minutes to get into REM sleep, the good news is she has no de sats, no apnea and has much healthier sleeping.
I wanted to post tonight to share about an awesome opportunity we had to have Lily enter a 5k! She was the team captain and had a team of "angels" running and pushing her. I didn't know much about it, but we were offered and I said sure. It was a beautiful night and I took Oli and Lily out a few miles out of town to a beautiful golf course and we met up with My Team Triumph. The race was benefiting Down Syndrome and it was a beautiful evening, the run was called Glow Run because it was dusk and there were candles and glow sticks everywhere. Lily was teamed up with a great group and we cheered for them along the way. What a wonderful experience! Next time I want to be a part of her team and push her!
She did very well the whole race, totally relaxed and happy. Then when it was over she cried. And cried. And cried. They promised her she can do a 10k next time. It reminded me of the time in Sea World she loved a ride so much they just let us go on it over and over again. Our girl loves wind in her face.
It was an awesome experience and it was even cooler to hear one of the "angel" runners when being thanked by a parent, he said "my pleasure, it was a blessing to be a part of this". How awesome is that?!

?

Thank you God for special people taking part in making our kids lives lived to the fullest!

I Can Handle The Truth

I can handle the truth. I prefer to handle the truth. This is why I have some struggles with my sweet precious Andi, likes to tell stories, Jane.
We really went through this in Kindergarten. I am pretty sure I told these stories already, one instance my friend asks me "when can we come see these birds at your house my girls keep talking about?" "What birds" I reply. "The ones that had eggs that hatched." "Yeah... no birds. I despise birds. There are no birds in our house"
Another fun instance was when one of Andi's classmates parents said to me "so you're from Canada?" "Ummm no" I know my face was on fire as my ears felt like they used to on my first day in the sun as a kid sans sunblock of course.
But after many talks, many talks, I thought these days were behind us. Andi went from story telling to killing me with embarrassment with her true stories. Until recently.
Andi kept telling me that she is going to move up to the other reading group. One step higher is the CATs reading program. Like super smart kids. I was like, wow, really? She kept saying after spring break. Then it was the first day back for spring break and I said "did you move into the new reading group" "yes" "how was it?" "fun, not too hard" "Let's call Grandma and tell her" "Ok" so we call Grandma, I am so proud at this moment. Thinking all this time I put into her every single night reading has really paid off. Then the next day she shows me her report card. It's good. It's AVERAGE. Not above grade level. Not above grade level in reading. Hmmm weird. I imagine a kid has an above grade level grade who is in advanced reading..... Gah! "Andi freaking Jane!" "what?" "Did you really start the new reading class?" "nooooo..... I thought I was going to move up, my teacher always tells me I am a good reader" "Yes but did your teacher ever say you were going to move up?" "Not exactly...." So this was long and drawn out. It included a call to Grandma to apologize. It included a we love you if you are in the lowest reading group or the highest, but you can't lie. It ends with my famous words, no truth is worse than your lie.
I was disappointed and upset. Not that she is didn't move up in reading. Disappointed in her lying. It's not like we are one of those families that say we only expect the best. Quite the opposite. I think she really wanted it to be true and she must have thought she could wish it into fruition. Or that I would forget all about it. Sigh. This kid....
But it is hard to stay mad long with her because she is so sweet and her heart is so big and it is in the right place. So all I can do is continue to praise her for being her, keep telling her the turth will set her free and keep praying God keeps her close and guides her since I can't always be there.
This was a sweet moment I captured on video the other night. Andi Jane was just interacting with Lily so sweetly I had to record it. The setting was in sepia tone (I have no clue why) so it looks a little weird, but Andi Jane asks Lily for a kiss and Lily lays one on her. Love this.

"Continue being Awesome"

I’ll be an old lady in my death bed and still remember him saying to Lily, touching her face and saying “continue being awesome”. It was a heart breaking goodbye said to a very special family who touched our lives in ways I could never express and those were the final moments I remember of that goodbye. “Continue being awesome.” A memory I have tucked in my heart that makes me cry at the very though of because it’s really awesome when you see someone who “gets it”.
Not too long ago I was talking after church with a friend whom we know each other through church but haven’t spoken a whole ton, but I really like her and after church while Andi Jane and Oliver played with her kids, I stood by Lily and we talked. We talked a lot. They are a very cool family willing to pack up their lives and move to Haiti. Haiti! Talk about sacrifice! Talk about making a difference in this world. So yes I wanted to talk to her, how amazing are their lives!? And while we are talking the conversation sways to Lily, as it often does, and I mention how we have a caregiver who comes in several evenings a week that helps with feeding and bathing Lily. While I talk I am thinking in my mind, am I being judged? I am supposed to be Lily’s caregiver, I am her mom. What is she thinking? We don’t know each other that well maybe I should be quiet. And that is when she says “that’s wonderful, that way you can be her mom and not just her caregiver” I agree and continue to talk, but my heart was at ease. We talked some more and when we said our goodbyes I walked away feeling a peaceful feeling. Then in typical over thinking me fashion I thought more and more on it and what she said and what a relief if was hearing coming from someone again who doesn’t necessarily “gets it” but “got it”.
There are no “normals” when dealing with a special needs child. If caring for your child in a way that each day you do things that keep them alive than there are no “normals”. And yes I understand the basics of life, making sure they don’t run in the street, not letting them around a pool, feeding them food, yes those keep your kids alive as well, but I am talking diets, medications, oxygen, surgeries, tubes, etc. Special needs. When that is your life, there is no “normal”. Sometimes you just want to fit in a world you just never feel like you fit. So you lower your expectations for some people. Not with ill intentions, just knowing when they don’t walk in your shoes, they just don’t understand the sting of the word retard. How could they, they never read it on their child’s medical record and felt like they were just stabbed in the gut. I know that if they did read those words they would have never said that word.
I am fortunate to have two other kids that laugh, fight, play, speak, feed themselves, and having them lets me in on this other world of parenting. The one where we can laugh about what they say, complain about what they do, brag about their skills and accomplishments, but having those other two will never replace the things my daughter can’t do. So it puts me at and odds. A place of wondering where do I really belong?
There are a few days a year that feel like the puzzle is all together like recently we just had one of those days, a day at the park that is for Special Kids and their families. What a breath of fresh air that is every year. Seeing Lily’s friends and their parents who walk in the same cute special shoes we walk in day after day, what a relief it is to see them. It is where I do feel I belong, I feel comfortable and welcome. But every day can’t be like that so I have to say how wonderful it feels to come across those who don't “get it” but do “get it”. People who have typical kids who run amuck and are healthy, yet somehow “get it” and when I come across those people I don’t want them to leave my side. Which is why the close friends I have are the close friends I have. It’s whom I lean towards.
I watch people, I watch them how they watch us. I dislike those who stare and love those who smile. I like those who touch and make a point to talk to Lily. I like those who will lean against her chair when standing by it. And I love those who come over and see her on the floor and lay down next to her and those not afraid to give her a big fat kiss or a nice warm back massage. Those who say I want to help you, what do you need? Those who ask specifically how she is, how her diet was going, how the medication is helping? How are her seizures?
I know not everyone is so comfortable going out of their way. I know some people aren’t so keen to touch, or some may worry I am not going to like you touching her and if you are a complete stranger I am probably not going to like you to touch her. And some don’t want to feel nosy or pushy. I don’t hate you for not asking, for not touching, I am just saying I appreciate those who do. And I get it, we are all different. I can’t expect everything from everyone. Of course I can’t. That is silly. I just want others to be aware that kids with special needs are kids. They are just as important, just as cute, and just as funny as all the other kids and deserve your time. And so do their parents. Sometimes we just want to know that even if you don’t “get it” you “get it”.
It’s hard trying to fit in worlds you just don’t feel you fit in. And maybe I don’t need to fit in everywhere. I don’t have to. I just am saying it sure feels pretty great when you are understood and feel like you do belong. And who doesn’t like that?

A week to recover

Oh. My. Lord. Six little 7 year olds was biting off way more than I could chew. And I can chew a lot. By midnight I was a nutty mama threatening to send everyone home. They took my threat and raised it. By 12:30am I took Andi aside and put the fear of God in her and guess what... they quieted up. But my goodness sakes. It was a long night. But came the sunlight they were all adorable again. I had to wonder how the other girls days ended up. Because this is how Andi's did.

This is her at her birthday lunch choice, Rainforest Cafe. Overpriced, nasty food, fun place I guess for kids? I am not too sure because when the thunder storm came Oliver dropped his fork, looked at me incredibly seriously and said "let's get out of here" then when we didn't, he cried and sat on my lap the rest of the time. I'm guessing that won't be his birthday lunch place choice.

The rest of her day went well. We were all dragging, but it went well. I'm pretty sure she had the best birthday ever and that's pretty cool. You have to say that like the SNL spoof on Mylie Cyrus if you are gonna say it at all. It's pretty cool.

I'd say her birthday weekend was a success. 7. How is that possible? 7?!

Lily has been ok. On Andi's birthday she had 3 grand mals. On the next day, none. No rhyme or reason. We took her to a natural path Doctor to try some more natural ideas. I'll discuss further when those go into play.

We still have a few days left of spring break. We have 2 weeks and a day here in Chandler, AZ. I feel bad at the vast boringness of it all. On the days I didn't work we have been to the dentist, to the doctor and have cleaned. I have done nothing fun. Nada. We are going to take the kids to the park on Saturday for Special Day for Special Kids that we do every year which is fun, but not even a trip to the zoo. This mom sucks. It's hard working and having a house to take care of and three kids. Fun sometimes seems to get lost ... that sucks. I so so so badly want to just pack the family up and drive to San Diego and have a weekend to remember, but it is so expensive, it just can't happen right now. So our weekends will have to be what AZ can offer. And you'd think oh sunshine for sure right?! Nope! We had to cancel our family party for Andi and Skylar because it was in the 50's and raining on Sunday! It hailed so much it looked like it snowed. Party got moved to Peter Piper Pizza, which is fine, but we had intended for a big water slide and sunshine. That's what you get for planning. Can't complain, pretty certain that is the last cold day til November. Just be ready for the complaints about the heat in a month or so. Just warning you.

Well that is my rambly updated post for now.. Oh some exciting news from IFCR!

"IFCR proudly announces its the 2012 Grant program: The International Foundation for CDKL5 Research (www.cdkl5.com) has committed $150,000 in grants for clinical research projects to begin studying seizures, gastrointestinal and cardiovascular issues as they relate to CDKL5. In addition, IFCR is pledging an additional $200,000 in research support for ongoing projects. These are your dollars at work! Thank you for supporting IFCR, we cannot do this without you!"