Friday, May 27, 2011

End of another school year

At the end of this school year, after the graduations, ceremonies and awards - my girls will be another "year" older. It's really weird to think about that!  Bella will be graduating into Kindergarten! AHH!!! Seriously - I'm FREAKING OUT! When did that happen?  Just the past few weeks we had her "transition" IEP meeting and honestly - I cried.  Not because they were "covering" things that I didn't know or they were criticizing things.  They weren't telling me that she was drowning or struggling or had concerns - it was actually the opposite.  They told me that Bella is a joy and smart and funny. They don't have alot of concerns for her and they all think she will do VERY well in kindergarten. They increased her "pull out" services to help her with her handwriting and some other very basic OT things - but other than that - she's great!  But my BABY is going into KINDERGARTEN!! OMG?!! I'm gonna need drugs for her "graduation".

And BEAR!! My heart - my baby! (And I know that sounds bad - but Bear has been a mama's girl since birth and she's MY baby!) She's graduating into 1st grade. I am having a hard time with this and I won't lie. It is breaking my heart to think of her growing up and moving on into 1st grade!  I don't want her to grow up! I want her to stay little and be safe and protected and everything. The older she gets the harder it's going to be for me to protect her and keep her safe. And yes - i know it's just 1st grade but still!!! At her yearly review meeting they kept pointing out how well she's doing and how compassionate she is. How she's reading above grade level and how much she loves her classmates and takes alot of pride in her art projects. They're going to have a little "cap and gown" graduation ceremony and really - they're getting little diploma's!! I'm really, truly going to cry my eyes out when she has her graduation!

My biggest baby - Roo is going into 3rd (THIRD) grade!! AGGHH!! (insert frantically panicky mother here!)  I won't even get into her transition meeting because it was horribly uncoordinated and too long - but needless to say her 3rd grade year is going to be stressful for this mama and daddy. With E.O.G. tests (if they don't pass their end of grade asssesments - they don't move onto the next year) and faster paced classes - it's going to be interesting.  BUT - for this year - my girl did so great! She's getting an award for her A.R. accomplishments (accelerated reader) and having a breakfast with the school folks (and parents) to recognize her overall accomplishments. I'm one proud mama!  I'm not sure if her class is having a graduation yet or not - but she's on her end of year field trip to the Aquarium today. Here's hoping that she's having alot of fun and enjoying her day!

So I'll post some pictures after all this is done and said. I'm so proud of my girls and excited for them to have a summer vacation. This mama is excited to not have to iron uniforms and rush out the doors with them every morning!

Tuesday, May 3, 2011

the knowing

So life has been pretty crazy lately and I've had a hard time figuring out how to keep telling our story from the past to the present. It's not that I don't want to share the details or that I find it too "close to the bone". It's more that I really don't remember alot of the day to day that we've gone through. There are some things that I vividly remember down to the color shirts the girls wore or the way the phone rang. I remember walking through the new classroom that the girls were transferred to and the absolute rage that I had when they continued to make changes to the classroom after the kids started.

I remember the "graduation" that they had when they finished the school year. I remember the smiles the girls had when they got their certificates for finishing the school year and the relief I felt when the school board said they would be replacing the "lead teacher" with a more qualified and compassionate woman. I remember all of that crystal clear. But I don't remember noticing the differences that the girls had as they grew. I don't remember the moments when things clicked and I "knew" that something was wrong. I do remember the day that Bella stuck her hand in a floorboard heater and gave herself a second degree burn - but she didn't cry.

I remember the alarm bells going off in my head that my "baby" wasn't ok. I remember breaking down in tears on the living room floor. I remember shaking and sobbing and feeling like I was going to vomit. I remember the feeling of not being able to breathe and wanting my heart to stop racing. I remember knowing that those feelings weren't going to get any better. I remember sobbing at all those "not going to happen" thoughts that were running through my mind and my heart.

Even today, after another appointment with the girls' psychiatrist and discussions about changing medications and "stumping" the doctor with behaviors and indicators. I have gotten used to hearing that we "stumped" the doctor and that she would "talk to a few other doctors" to get some "ideas" on what we can do to make Bear stop eating her fingers. Or what we can do to get Bella to stop running into the street with no care of oncoming traffic. And it's so frustrating to sit there and spout off all of the things that we've already done to try and help them. All of the sage ideas that are well meaning but unsuccessful.

To have to recount all the nights, weeks, months of "odd behaviors" or "problem behaviors" or "typical disorder" behaviors. And while I know that the doctors need to know what they girls have done over the years  and that in some way I'm sure it's beneficial for them to know - it breaks my heart to remember my daughters chewing on furniture like dogs. And the hours upon hours of scraping dried poop off the walls and furniture. And the hours of washing dried poop out of sheets and blankets and pillows. Throwing out stuffed animals that just couldn't be cleaned.

I know that I'm not alone in all this. I know there are countless other parents that have gone through this. I know that the "lost memories" are still in my head somewhere and that they'll come back at some point. I know they'll flash into my head someday and I'll smile when I can remember my daughters first steps and the first time they fed themselves.

Knowing all this now - doesn't make the "not going to happens" and lost memories any easier to live with. 

Monday, March 28, 2011!

Change and military life are supposed to go hand in hand right? Well, not so much in our family. I expected us to move at some point to another base in another state if not another country. And we were fortunate (sort of) not to have to do that during my husbands' military career. He deployed and trained and did his job day in and day out. Shortly before Ella's first birthday, he deployed again - this time to Incirlik Air Base in Turkey. This time for 6 months. That 6 months was some of the worst and best in my life. I learned very quickly what I was actually capable of handling. I moved us into a house that I fell in love with. 3 bedrooms, 2 bathrooms with a HUGE backyard and terrific neighbors. The girls were happy in that house. I was happy in that house.

A few doors down from our house I met an amazing lady who was on the journey that I was on. She had 3 children as well. Her middle child was also diagnosed on the spectrum and while we weren't able to talk as much as we wanted to, we shared alot of glances and brief conversations that meant more to me than she'll ever know. And, we ended up being allies together when the schools decided to uproot our children and switch schools on them.  Neither of us were prepared or eager for that change. There were many caffeine fueled conversations, discussions, pro/con lists and shared emails about that misadventure.

Given that we lived on military bases, the school populations were always changing. And, given that our children were bused from one military base to another, our children were considered "Out of Boundary" students. Even though our base didn't offer the early intervention preschools that our kids needed, we were still considered "out of boundary". At the time that they announced they were making this change, neither myself or my friends were ready to tackle this argument. We didn't understand what the school administrators were thinking! Uprooting these children, mid-semester to a new school with teachers they didn't know, to a classroom without adequate facilities - a virtual nightmare for us parents.

And it was a NIGHTMARE! The school playground wasn't fenced in, the classroom didn't have a bathroom, the teacher wasn't trained to handle special kids, the school wasn't equipped, the staff wasn't prepared to have these high need children in their school. All of us were truly terrified of what our children were going to walk into. The school did do what it could, and that was great, but there wasn't anything that they could do that would have made this transition any easier or acceptable to me. I stepped up as did several other parents to go into the classroom to help get it ready for our children. Childproofing things, trying to fix things up so that it would be as adaptable as possible. That wasn't going to be easy. The classroom was located in the 4th and 5th grade building. The school had never had a classroom full of high-need preschool age children.

The teaching staff in that classroom truly wanted to make it work out in that classroom. Most understood that this transition was going to be beyond challenging and terrifying for these kids. I was angry that the school district felt it was appropriate to reshuffle our already fragile kids around like a deck of cards. I won't forget the look on Maggie's face the day that she didn't go to her "school" and she went to "the scary school". The big kids were there and the school had too many different buildings. The whole situation was different and scary for her. Thankfully, she did have one familiar face with her. My friend from down the street, her middle child was in the same class with her.

The first few weeks of the class was terrible. The "lead teacher" became the assistant teacher when she realized she wasn't capable of teaching the class. One of the assistant teachers took over and she was amazing. Lisa was a remarkable teacher and the perfect fit for the kids in the class. In March of 2009, Ella started preschool in the same class as Maggie. The two of them were inseparable. With Lisa as the lead teacher, Cheryl and Jeanie as terrific assistants and a safe and functioning classroom - Maggie and Ella were doing great.

At the end of that academic year, Riley "Graduated" kindergarten and Maggie and Ella finished their preschool year with another year of preschool yet to go. That summer we moved into a 4 bedroom house. I wasn't as in love with it as I was our 3bedroom house, but I had another great neighbor across the street and the girls each had their own rooms. (Which was MUCH needed since Maggie and Ella were together 24/7) That upcoming year was going to be really challenging. In 2009-2010, our entire lives would turn upside down.

Thursday, March 24, 2011

Takes a village

A phrase I got used to hearing alot over the years was "let's just wait and see". Telling that to a mother who wanted nothing more than to give her children everything and anything they needed to achieve their fullest potential was one of the most frustrating things I had ever been through. I hated hearing that with a passion. I'm not a wait and see mother. Did I understand that some "diagnosis" couldn't be made until the girls were older - absolutely! I understood that because I heard it often enough. But it didn't make it any easier to wait.

For weeks upon weeks and months upon months, I would load the girls up in the van and drive almost 45minutes away to therapy in Puyallup Washington. It could have been 3 hours away and I still would have made that drive on a daily basis. The therapists the girls had at Children's Therapy Unit made it worth it time and time again. Over the 4 years that the girls were seen there - we met truly amazing individuals who loved my daughters as though they were their own.  For roughly 8 hours a week, the girls were treated there and given undivided attention to help them achieve their goals. If the girls were sick, they called to see how they were. If the girls had a bad day, they were there helping them and loving them. When the girls met a goal or had a wonderful session - they celebrated right along with us.

The people at Children's Therapy Unit truly were the best of the best (in my opinion). Not only did CTU offer OT, PT, Speech and Psychiatry in one building - they also had social skills groups, family support, orthotics - truly EVERYTHING in one place. It was a gift to go there. When the girls would go off with their therapists, I had an opportunity to talk with other parents who were in similar situations. When we were there for hours at a time when one girl had therapy, and the others didn't start for an hour there were things for the kids to do. Books to read, games to play, other kids to play with - in a SAFE place where I didn't have to worry about the "weird looks" or ignorance of other parents. Any other parent that has gone through the "unknowns" knows how truly amazing it was to have a place like that.

Shortly after we started therapies at CTU - I was introduced to another form of hell on earth. IEP's. (Individualized Education Plans)  Don't get me wrong - I appreciate the intent of what IEP's are supposed to do. But the meetings and evaluations and egos that get involved make the process exhausting. Throughout the time that we were in Washington, I had another wonderful person come into my life, and the lives of my daughters. She was the Speech and Language Pathologist that was in charge of my girls IEP's and also saw the girls for speech services.  Angela was probably one of my closest friends in Washington. As the girls aged into the system of public education and EC Preschool, Angela opened her arms even more and took over their IEP's and therapies.

It started with Riley in preschool starting in December of 2005. She had just turned 3 and to say that I was scared would be putting it mildly. I don't remember alot of the first year of her in preschool - but I do remember being nervous and not wanting her to ride the bus. She wasn't going to the school on base because they didn't have the EC Preschool, so she would have been bused to the army base and go to school there. Yeah - that wasn't going to happen. So, eventually I pulled her from the army base school and sent her to a preschool off base and she was really happy there. When it was time for Maggie to start preschool, I sent her to that school as well.

When it was time for Riley to start kindergarten, things became harder. In Washington they didn't have "all day kindergarten". We started Riley at the school on the army base because we were told that that would be a better situation for her. We quickly discovered that we were very wrong. (Damn hindsight!) So, we transferred Riley to the elementary school on base where she quickly started to drown so we tried another class and eventually she settled in and finished out her Kindergarten year. Angela walked just about all of that with me and tried to help me figure out a good balance for Riley.  In addition to attending school Riley also had her therapies at CTU every week. Which now, it doesn't seem like it was that much, but at the time, it was.

When Riley was starting 1st grade, it was time to start Maggie in her EC Preschool. Thankfully Angela was there with me through that as well. It started off pretty well, Maggie was going to be in the same class that Riley had been in. I was comfortable with the teacher and knew that Maggie would be happy there. Riley was excited about starting her 1st grade year and going to school all day like the "big kids". The first day of school was great for Riley. She was really excited and quickly made a few friends.  Maggie started in her class and was happy too. I was really surprised to see how they transitioned and how comfortable they both seemed.

Part of me was waiting for the other shoe to drop. Things were going too well and I couldn't shake that feeling of "something bad is coming." I wish I hadn't been right. About half way through the first quarter of school - we got a phone call that the school district was going to start an EC Preschool on our base and they were going to transfer all the "off army base" kids to that school. Here we are so content and happy that Maggie is comfortable and happy to go to school and excited to see her friends everyday. And now - the school district wants to change all that? Insert mother rage right here!!!

Wednesday, March 23, 2011

Hurry up and wait!

One of the many things you never expect when you're a parent is to have to wait to find out what's wrong with your child. Most of the time it's pretty simple when something is wrong. Ear infection, strep throat, sinus infection, bronchitis, broken arm, sprained ankle - all relatively simple problems that you get an answer to pretty quickly. Even when a woman thinks she's pregnant - it's pretty simple. Pee on a stick or go to the doctor for a blood test or a glorified pee stick. At most you have to wait a few hours and you know.

When something isn't as simple - the waiting is terrible. I admit - I am one of the least patient women on the planet. If something is wrong with my child - I want to know what it is, what is the plan of action and what do I need to do? That does not happen when it comes to "developmental concerns." There aren't any simple answers. All the paperwork in the world that is filled out still doesn't bring a simple answer. When the appointments finally came for the girls to see the developmental pediatrician - I did expect to walk out with an idea of what was wrong. I expected these long awaited appointments to yield some form of an answer. And I was wrong. WAY wrong.

After waiting for what seemed to be hours, all three of the girls get called back to see the "developmental specialist".  I half expected someone that looked like Dr. Freud or Dr. Spock even to come into the room with this arrogant personality and sense of self assurance that would make me instanteously better about the situation. I expected someone to walk in and already have an idea of what was wrong because of the copious amounts of paperwork I filled out would have given some answers. Nope. Wrong again.  The doctor that walked in was young, intelligent looking but young. And of course he wasn't the actual "specialist" - he was the "fellow" (aka glorified student that's still learning and has to run everything by someone else who then presents to the actual specialists) but he was a doctor so that made me feel a little better. (not by much) 

He had a name that made me want to laugh because he obviously wasn't a Flake, but he name was Flake. He was the first of several developmental pediatricians that the girls would see. But, he did make me feel somewhat better because he had alot of patience and the girls all seemed to like him. He asked ALOT of questions, took a very detailed family history and then let me know what his actual job was. Which, at the time, didn't seem all that different from a regular pediatrician. But, he had one power that I had yet to hear of and would later find out to be a golden ticket to a magical service that I would need - alot. He had the power of the "referral". Referral would become something that I loved and hated all at the same time. Without referrals, the girls didn't get what they needed. Without the right referrals - the girls didn't get what they needed. Without the perfectly worded, sent to the right people, dated with the right dates - the girls didn't get what they needed. And Dr.Flake was the ultimate provider of those referrals.

After 4 hours in a small exam room being asked lots and lots of questions and feeling like anything I ate, drank or smelled was wrong - we were done with that appointment. I left feeling overwhelmed, confused and insufficient. The girls didn't have a definite diagnosis. I didn't have any answers. I didn't know what to do or which way to turn. I had a 3 pieces of paper with lists of appointments and dates on them. 1 piece of paper for each of my girls with appointments for all sorts of tests and exams and lab orders. How could their little bodies handle all of those tests. Even though they weren't alot by any means, how could they handle all of it? Why did they need them all? What did Dr. Flake plan on getting from all of these tests? What did he think was wrong with my kids?

I remember sitting in that room before we left asking him what he thought was wrong with my girls. He tried to give me the "vague" answer that was completely nonspecific and didn't give me any direction to look in. I told him that I wouldn't hold him to anything, but I needed to know what it wasn't so I could start to accept what it could be. He spouted off all these things that it "couldn't be" and I remember looking him in the eyes and saying "well that's great, but what could it be?" He talked about "Borderline Mental Retardation", "Pervasive Developmental Disorders" and "Non-Specific Global Developmental Delays". He talked about how Occupational, Speech and Physical Therapies could help the girls gain some of the skills that they were lacking and to help them catch up to their "same age peers". (Which he had put referrals in for evaluations and therapy sessions)

I still don't remember leaving that appointment. I don't remember driving home. I don't remember much about the rest of that day. I do remember looking at the 3 sheets of paper seeing dates and times and places that I had to get my girls to in order to find out what was wrong with them. I remember seeing my girls with different wires and leads attached to them looking for seizure activity. I remember holding them down as the doctors and nurses took tubes upon tubes of blood from them looking for "genetic defects". I remember answering the same questions over and over and over and over again at evaluations and therapy appointments.

I remember sitting in so many different rooms hearing where my children were "delayed" or "grossly delayed" in areas of their development that these therapies would "help them reach their therapy goals and developmental milestones". What I remember hearing more than anything though was that in one way or another I had failed. It didn't matter how many different times the therapists or doctors would tell me that "it's not your fault" or "there's nothing you did that caused this" or "you've done everything right, you shouldn't feel guilty" or my all time favorite "you've caught this early, they'll catch up in no time." None of that mattered. All I knew was that these little girls were given to me to care for, love and raise to be healthy, beautiful women. And for one reason or another - there was something wrong with them that was preventing that from happening.

What that was, I still didn't know. No one seemed to be able to willing to tell me what that was. What they did tell me was that it was going to be awhile before we knew what "it" was exactly. That's all anyone seemed to be able to tell me.

Tuesday, March 22, 2011

Insert Jeopardy Music Here

24 years old and I'm supposed to know what to do? There isn't a handbook for this. There's no parenting class that prepares you for the reality of Early Intervention Services.  (And I had NEVER heard of that before. Sure, there was a therapist that was coming to the house to help Riley before all this came into the picture - but it never occurred to me that there was a name for it.) And as wonderful as the military is - there isn't a specialist on staff anywhere that can help navigate through the path that was coming at me like a freight train.

Somehow through all the panic running through my head, I found the number to a woman that would become my saving grace. She was our "Family Resources Coordinator" for the county that we lived in. April truly became a lifesaver for me. I had met her when we originally moved to Washington State back in July of 2004. Before Maggie was born and before any of the "delays" became a reality. She had originally set us up with the in home therapist that signed a spot light on all of the girls delays. I hadn't talked with her since we set up the in home services for Riley. And when everything was going on with my pregnancy with Ella, it didn't occur to me that April might have been able to help. But I was so wrong!

After I called her, she came out to the house and set up evaluations for all of the girls to have. April was wonderful. She had a way of being very direct with the areas of concern without it coming across as though anything was "wrong". She gave me lots of websites to look at and made things seem manageable. And everytime she came, it felt like a friend was coming to visit. If something came up that I didn't know what to do with, she had the answer without it seeming as though I had missed the obvious. When things started to come into focus a bit, April broke the news to me that the situations with the girls may not be temporary. I didn't know what to do with that. April did.

She called the girls pediatrician and sent over all the records and test results. When the doctor called, for some reason, it just came crashing down. The doctor said that I needed to bring the girls to the army hospital to see the developmental pediatrician. I don't know why, because at the time I had no clue what a developmental peditrican was - but I was terrified. It all felt so official and out of my hands. I felt like I had no say in what was going to happen to my kids. I don't know if it was because it was suddenly "military" and not civilian. April didn't work with the military healthcare system. She worked for the county. April couldn't do anything for us when we were seeing the military providers. Of course she could still come to the house and help me navigate the homecare visits that the girls had - but she couldn't make the military doctors do anything or change anything.

I didn't understand why this suddenly went from my happy "April visits" where things were manageable - to the military world. The military world wasn't as friendly. It wasn't as kind and gentle. It was much harsher and black and white. There wasn't room for any indecision or questioning. I understood that we were at a point where the girls needed more than home care visits and developmental assessments. They needed more medical testing and possibly more than that. They needed more intervention than April could provide. It felt like my only ally in this was being taken away. April was the first "friend" I had made when we moved from North Carolina to Washington. She was the only person that I could talk to about the fears and worries I had for the girls. I did have other "friends" in my life that were there for me and that I knew loved the girls, but I didn't know how to talk to anyone but April about it all.

A few days after the appointments with Developmental Pediatrics were scheduled, I was thrown in to an entire new version of hell known as "paperwork". I truly believe that the amount of paperwork that is involved with developmental delays in children is meant as a diversion so that parents don't have the time to ask questions. With all 3 of the girls requiring mountains of paperwork, I think I need to take partial responsibility for the destruction of the rainforests. After roughly 8 hours of paperwork, records requests and releases and 6 weeks of waiting - I pushed a 2 seater stroller with Riley and Maggie in it, Ella in a baby sling and a diaper bag that was probably big enough to fit all 3 girls in it with room to spare into the developmental pediatric clinic.

Delayed in Transit

Thankfully Ella was a healthy, happy baby girl when she joined our family. We left the hospital 3 days after she was born and I couldn't wait to get home to my girls and family. Given that it was my 3rd c-section in 5 years, I kind of expected to be sore and tired. After 1 week at home, I realized that the bruising I had around my incision wasn't getting any better. It was actually getting worse. I got up to take a shower and I started bleeding from my c-section. It turned out that I had a massive collection of blood that hadn't drained. For the next 7 weeks, my amazing husband had to help clean out my incision several times a day and repack it.

Ella was almost 4 months old by the time I was completely healed from her delivery. During that 4 months, we began to realize that while Ella was a smart, connected, active baby girl - she was also not responding to pain that most children would have. She didn't cry when she got her shots. She didn't cry when her sisters would drop a toy on her or when the bathwater may have been too cold. The little "mom" alarm bells were going off. Of course they were already going off because of the two older girls, so I thought that was just me being a neurotic mama.

Things were slowly moving along, I healed up and I found a good rhythm with the girls. One afternoon, Riley's therapist came to the house and she looked me in the eye and said that we needed to have a talk about the girls. I thought it was odd considering that she was only there to work with Riley, but she wanted to talk about Maggie and Ella. I remember looking at her and automatically feeling defensive. Who was she to think that she could say anything about my other kids when she was only there to work with Riley? What right did she have to say anything about what kind of mother I was? Of course she hadn't really even said anything at that point, but I was already spewing off retorts in my head to what I thought she was going to say.

I don't think I really heard anything. I was too busy having a conversation in my own head disputing anything she hadn't said yet. I vaguely remember her pointing out how it wasn't "normal" for Maggie to be almost a year old and that she wasn't sitting up on her own. Maggie wasn't feeding herself or drinking out of a cup. Maggie wasn't crawling or moving around. She kept talking about how "delayed" Maggie was and how it wasn't "normal" for Maggie to not really be "speaking" yet.  Than she started to talk about Ella and her "abnormal pain response". I can remember in detail feeling this switch in my head and flashing back to doctors telling me that my daughter was "malformed".

The absolute rage going through my head and my bloodpressure flying through the roof had to have been visible to this therapist sitting across from me. I'm really surprised that she didn't run out of my house in terror. I'm sure that I wasn't the first parent that she had this conversation with. And I'm sure I'm not the first parent that flew off the handle and started screaming and cursing at her for thinking that she could cast any judgement on my children. I'm probably not the last parent that she had had that conversation with. Despite my absolute defense and rage - and despite every fiber of my being wanting to kick her out of my house - part of me knew that she was right. And that broke my heart.

I didn't want to admit to myself that there was something different about my girls. It almost feels (even today) like I have this split personality part of me. Part of me knew that my girls needed to be checked out and to see someone who could figure out what part of them wasn't working right. Part of me saw that they weren't like all the other kids in the neighborhood. Part of me saw how "little" Maggie seemed compared to where Riley had been at 1 year old. I remember watching Riley try and stand up and walk on her own when she was almost 1. I remember Riley holding cups and trying to figure out which end of the fork to eat from. I remember celebrating Riley crawling and sitting up on her own. Even with all the antibiotics and testing - Riley still met some basic developmental goals.

Maggie was almost 1 year old and wasn't sitting up. She wasn't trying to. She was barely babbling and wasn't trying to cue me to watching what she was doing. Maggie wasn't really "growing" in her development. She had to have things just so. I truly believed that every child was different. Their needs were different. Their interests and growth patterns were different. I wanted to believe that that was the case with Maggie. I felt like such a horrible mother comparing my children to each other. I didn't want to be "that mom". I didn't want to hold one child as the "standard" to another.

I didn't want to believe that my Maggie wasn't ok. I didn't want to believe that this therapist was sitting across from me seeing these challenges in my girls and I couldn't see it. I could see it. I just didn't want to believe it. I didn't want to see that Ella wasn't ok. She had already defied the odds by being born "normal". Her brain was fine. Her heart was fine. Ella had to be fine. But she wasn't. Ella wasn't fine. Ella didn't react when she got shots. Ella didn't seem to feel pain at all. She didn't seem to feel discomfort. But Ella had to be fine. In my head and in my heart Ella had to be fine. I didn't want to see it.

Even though part of me couldn't see these differences in my girls, the other part of me saw it and knew that something needed to be done. This therapist sitting across from me was telling me what i already knew. But it didn't make it any easier to see. It certainly didn't know how to take the divider between what I knew and what I could see, out. How in the hell does someone remove a part of themselves that they didn't even know where it was?

How was I supposed to handle the reality of 3 little girls with challenges? How did I end up having 3 special little girls? How was I going to raise these 3 little girls that all seemed to have higher needs?  What in the hell was I supposed to do now?

This therapist kept talking through all these thoughts running through my head. I couldn't understand how she didn't see all these thoughts and fears running around. They couldn't all be in my head, but they were. She kept pulling these pamphlets and papers out of her bag like a magician pulling scarves out of his sleeve. I don't even remember what most of them were for or what she was saying. I felt like I was listening to that "mom" character in "Charlie Brown" or "The Little Muppets". "Waahhaaa, waahhahaaa, waggaawaggahhaa". They weren't words that were coming out of her mouth as much as sounds that were supposed to have meaning to them.

It felt like it was hours upon hours of her sitting there trying to convince me to do something or like she was waiting for me to confirm everything she was saying. I had checked out of that conversation long before she said she was leaving. Maybe I was staring at her like deer in a headlights or like she was speaking some foreign language, but eventually she left without whatever it was she was waiting for. And I was left with this heavy block on my chest and fear in my heart.

What in the hell was I supposed to do now?

Monday, March 21, 2011

Maternal Instincts

I've never been one to doubt my instincts when it came to my children. When I found out I was pregnant with Riley I had a dream that was so vivid that to this day I can remember every tiny detail about it. A little girl standing next to the number 1 wearing pink overalls, a white shirt with piercing blue eyes, blonde hair and white leather shoes. I knew without a doubt that I was having a baby girl that would have blue eyes, and I did. When I found out I was pregnant with Maggie I didn't have that vivid dream, but I knew that this little girl would change the way I looked at everything and she did. When I found out I was pregnant with our third child - I knew that I had no clue what in the hell I was in for and boy was I right. From the day I found out I was pregnant with our third surprise I was in a tailspin of complete and utter uncertainty.

Not only was I still learning how to be a mother and wife, I was learning how to be a grown up. I mean seriously - how many 22 - 23 year old women know how to raise 2 kids, be a military wife and live 3000 miles away from home? (it didn't help that I was the only child of a divorced irish catholic and that I had only been responsible for myself up until the day I married my husband, so yeah, i was kind of unprepared for this whole motherhood gig) I mean sure, i wanted to be a mother and I wanted to be a wife. I wanted to play house and live that whole little happy white picket fence life that most girls want to have growing up. Yeah - I so didn't get the white picket fence.

My hubby left for Iraq in September 2005, scheduled to be gone for 4 months (but of course the military always said - don't hold your breath, could be longer, evil puppet master bastards!) which of course meant that he would miss the holidays (pregnancy hormones made that WAY worse!). I can't remember what it was like when he left or the majority of that whole wonderful experience, up until the day I went in for my 20week ultrasound. I have no clue how things got scheduled the way they did or even what led up to it, but I won't forget that day.  I remember laying on those uncomfortable plastic tables as the ultrasound tech squirted that horrible blue gel onto my stretchmark covered stomach. (of course it was friggin COLD!) She didn't say much, not even the usual pleasentries asking me if I wanted to know the sex or if this was my first, second, 15th pregnancy. I tried to make pleasent conversation and she actually told me to stop talking. (evil bitch!) Most that know me know that I'm not exactly a "think before I speak" type of girl - so I told her what I thought of her comment in a not so polite manner.

She then said "Mrs. Burton, I really need you to stop talking because I cannot get an accurate view of the malformation." (insert my heart hitting the floor and instant panic) Needless to say - I shut up really quick. She asked one of the other lemmings that was in the room to please go get another physician to come in and look at the "image".  I don't remember alot of the next few minutes (what felt like hours) since I stopped listening at "malformation".  I don't remember them wiping the goo off of my stomach or asking me to go wait in another room to speak with the "specialists". (One of the few perks of military healthcare - they have specialists for everything)

A doctor from Maternal Fetal Medicine came in with a geneticist and neonatalogist and they introduced themselves. (Can't tell you their names now, but they looked like pallbearers in my opinion) One started talking about "malformed cardiac valves and misshapen chambers". Another started talking about "vital vessels in the brain not being present" and the other started in discussing (amongst themselves mind you, not with me) all of the "viable, but time sensitive options". I can remember sitting their with this overwhelming sense of absolute abandonment. It wasn't my husbands choice to be in Iraq. It wasn't my choice to be sitting at that army hospital by myself with 2 small children. It wasn't my intention to be sitting in that room listening to the 3 stooges talk about my unborn child as if it was some form of a science experiement that they couldn't wait to diagnose. Suddenly this wave of absolute RAGE came over me and I remember sitting there and screaming at them to shut the hell up.

I don't think I can ever recall 3 doctors turning into deer in a headlight as fast as those 3 doctors did. I don't remember my exact words at the moment but it was something to the effect of "how dare you presume to think that my unborn child is a mistake?"  I remember telling them that they had nothing definite to tell me other than I was having a baby girl. They couldn't tell me anything other than what they THOUGHT they saw. They sat there looking at blurry images on ultrasound pictures - not my child. I vividly remember telling them that no matter what they did or didn't find - there was no way in HELL that i would terminate my pregnancy despite their "strong recommendations" because GOD does NOT make mistakes. And that no matter what, my daughter deserved a chance at LIFE. I remember hearing one of the idiot stooges suggest that they called down a psychiatrist to come see me and I said feel free - but nothing anyone was going to say to me was going to change my mind about my daughter. At that point, I think I got up and left.

When I got back to my house, I had a voicemail from the doctors saying that they were going to call my husbands commander to suggest that they brought my husband home from Iraq to "talk some sense into me". Which they did. Not as quickly as I would have liked since I spent the next 2 days crying into my wonderful friends shoulders and spending hours upon hours researching all the horrible "malformations" that the idiots said they saw on my daughters ultrasounds. It took almost 2 weeks for my husband to come back from Iraq. During those 2 weeks Riley was admitted to the hospital for another kidney infection that developed into pneumonia. She spent 3 days in the hospital on antibiotics but thankfully was fine afterwards. I spent close to a week arguing with the idiot doctors against having an amniocentisis done. Nothing that those tests were going to show me would have changed my plan.

I knew that my latest surprise was ok. I knew that there was nothing wrong with her that would change her life. I knew that God didn't send that beautiful little girl down from heaven only to have her come into the world "malformed" and I was right.  On March 24th 2006, with more doctors than I can remember in the room,  Ella joined our family. Another c-section, another strange position - this time sideways. Her delivery was the hardest, longest and most dangerous of all of them. The doctors urged me to not have any more children after Ella, and I followed their recommendation. It wasn't what I wanted to do, but it was the right thing for my health.

Little did I know, that my pregnancy with Ella would be the easiest part of my journey as her mother thus far.

4 more feet in 3 years?

In November 2004, Maggie joined our family in almost the same way her big sister did. Another c-section but this time, our little surprise decided that coming into the world butt first was more her style. I shouldn't have been surprised since just about every ultrasound Maggie was mooning the world. At first, the ultrasounds said that Maggie was actually a boy, but I think I knew in my heart that the "he" was a "she".  My pregnancy was less eventful than it was with Riley. Despite the stress I had of Riley's surgery, my husband being gone for the first part of my pregnancy and moving cross country when the Air Force decided that we were going to be a west coast family - all in all it wasn't too bad. I did have high blood pressure, but no preterm contractions this time.

Maggie came into the world at 37 weeks, healthy and happy. I was able to hear her first cries and see her slimy, wrinkly little self. From the second she was born - Maggie was completely different from Riley. Riley was a daddys girl from day one. Maggie was a total Mama's girl. Riley is a mini-version of my husband. My husband has blue eyes and tan skin and so does Riley. Maggie has hazel eyes, fair skin - just like her mama. Riley didn't want anything to do with me for the first several months of her life, she only wanted her daddy. She could tolerate me - but she wouldn't breast feed or really cuddle with me the way she would her daddy. Maggie on the other hand - she camped at my boob and couldn't stand to be apart from me. Part of me loved it and drank it in like air, but the other part of me was just exhausted.

I don't know if it would be considered a mothers instinct, my I knew when I was pregnant with Maggie that something was different. I'm sure that every pregnancy is different for every woman, but I knew that something was different about her. I knew that she was coming into the world different than other kids. She had something to show me, something to teach me that I knew I was going to have to learn. (that damned hindsight struck again, friggin bastard!)

At birth, Maggie was a beautiful, calm, gentle spirit. (Unless someone tried to touch her other than me, than all hell broke loose and she was a friggin raging bull!) As long as she had her spot next to my boob and was cuddled up to me like a hot water bottle - she was a happy camper. My mom said that she was just a girl who knew what she wanted, which was great, but it was also one of those things that I knew she would have to deal with in order to grow as a person. (I know, what the hell was I worried about? She was a friggin newborn infant - she was supposed to want her mama and just want to eat, sleep and poop 24/7 right? Well, I worried, that was supposed to be my job right? RIGHT?) I don't know if it was the new military wife in me or the mom of 2 kids under age 2 thing, but I felt like i had to go into survival mode. My husband was going to have to go back to work, my mom would have to go back to North Carolina and I would have to figure out how to survive and live.

In all honesty and I'm not kidding - I truly do not remember most of Maggie's first 2 years. My life revolved around Riley's in home therapies to help her with her speech therapy and occupational therapy, her antibiotic schedules and trying to ignore this little voice inside me that was telling me that something was wrong.  I truly thought that it was normal to worry constantly about my daughters and what they were and weren't doing. Add to it the upcoming deployment that my husband was heading off to (thanks Iraq!) and trying to recover from another c-section (yeah, I thought I was supposed to "bounce back! HA!) when I got the news that once again - I WAS PREGNANT! There I was getting used to have two kids ages 2 and 6mths when all of the sudden I realized that birth control didn't always work because I was pregnant again! And of course, my husband was leaving. I know I was not the first woman in the world to be faced with those challenges, but I sure as hell felt like I was.

I was 23 years old. I had 2 little girls with unique needs. I was over 3000 miles away from home. My husband was heading to Iraq for 4 months (thank you for that Air Force!) on his first deployment. But, I had to swallow the fear and deal with what was going to be my new reality. I had a 2 year old little girl who required intensive in home therapy for what we thought was just some "developmental delays due to hearing impairment and medical complications", a 6 month old little girl who was "very attached to her mama" and I was 7 weeks pregnant with another child. Little did I know how much my life would change over the next four months.

This isn't what I thought it would be

I never expected to have a child before I was legally able to drink. Hell, I never expected to be married before I was even in my 20's. But, when it hits you between the eyes, you really can't turn away from it. When I saw my other half in a dorm in college sitting on a bed, I knew he was it for me. That was almost 10 years ago. We didn't date that long, but what we knew was real is real even after all these years with all these challenging puzzles.

Shortly after we were married in January 2002, we found out we were expecting our first little surprise. We had left the window open to surprises after we got married, but we didn't expect someone to come through the window so quickly.  All in all, my pregnancy wasn't terrible and it wasn't perfect. Our surprise made things exciting when I was about 20 weeks pregnant when I went into preterm labor. I was like most expectant moms would be - panicked. I was terrified of the medications they were giving me and the restrictions they put me on. I knew how early it was and how dangerous it would have been if they hadn't been able to stop my contractions. Thankfully with heroic doses of medications and lots and lots of fluids - they were able to stop my labor.

To this day I think that that experience prepared me for the wonderful adventure that would be the rest of my pregnancy with our first little surprise.Lots of ultrasounds and doctor visits confirmed that we were expecting a little girl who refused to assume the "traditional" position. Instead she decided that coming into the world feet first was more her style. Go figure!  It wasn't much longer when we welcomed our first daughter into the world - at 36 weeks. Even my "going into labor" experience was very surprising. I went in for my 36week visit and while they were "checking" me - we found out that I was 2 centimeter's dialated with her big toe sticking out of my cervix.  So, on December 30 2002 - we welcomed Riley into the world at 6lbs, 11oz via c-section. 

I wasn't at all happy about having to have a c-section for my first delivery. But having a footling breech delivery wasn't possible and I was so young I didn't know that I had a choice. Hindsight is 20/20 right?  Anyway - I was prepped and they wheeled me into the OR to "get the show on the road" (according to my way to eager to cut OB). The docs placed my "spinal" (to numb me up but allow me to stay awake) and they laid me back on the table - it didn't work. I could still feel the docs touch my skin and pinch and things that I shouldn't have been able to feel. And before I could say anything - they put me to sleep. My husband was there and he did fill me in on all the details that he could remember - but I don't remember my daughters first cries or what she looked like. My husband, my mother, father in law, mother in law, sister in law - all held my daughter before I did. That's not something any mother can really ever come to grips with.

That was the beginning of a very unique journey with our first puzzle.She spent the first 6 months of her life being tested for more things than I can remember. Most new mom's deal with colic, jaundice, sleepless nights, nursing and feeding problems, overbearing moms with too many suggestions and too few showers. I was dealing with pneumonia, antibiotic schedules, MRI's, CAT Scans, VCUG's and ultrasounds.  Before Riley was 1, she was diagnosed with grade 2 urinary reflux w/ kidney complications.  Riley's surgery was one of the most terrifying experiences in my life. At the time, my husband was in Texas in his last week of basic training for the United States Air Force. Most of my inlawed family went to Texas for his graduation and my mom stayed behind with me in North Carolina to take care of Riley while she was recovering.

We knew when Riley had her surgery that she also had some hearing complications and sensory issues. At the time, those were the least of my concerns. I was more concerned about her kidneys and the long term damage that was being done to them by the repeat infections that she was having despite the massive doses of antibiotics she was taking on a daily basis. When she started having bad reactions to the milk I transitioned her to, the doctors thought she was just reacting to the lactose, so they switched her to lactose free milk. Hindsight sucks. That old saying of "if I knew then what I know now, I would have done things differently" - I hate that saying.

Flashforward a few years and 2 more baby girls and the word that strangely changed our lives - Autism.