I guess the hardest things about hearing the “R” word were the visions I had in my head of people I had seen with mental retardation and those visions weren’t pretty.  The dreams I had for my little girl were NOT going to come true.  I spent years trying to hold it together thinking that once the seizures were under control our baby would flourish. But, those dreams were definitely gone now.

That’s what I was thinking and I know it sounds horrible, but every parent feels that way at first, I know they do.  Who seriously wants this for their child?  Who seriously thinks this is a blessing? Who seriously wouldn’t want it to be different? I had dreams of seeing my little girl in ballet class and walking the halls in high school hand in hand with a young boy.  I even had those visions of her standing in the aisle on her wedding day, scared and excited to start her new life with someone she loves.  But the sad truth was, my little girl wasn’t going to experience any of those things; and that wasn’t fair. I was scared for her. I was petrified for her and what the future had in store.

The world can be a horribly unfair place for someone with imperfections, people don’t understand enough yet. People also make assumptions. How many times have you heard the saying “the apple doesn’t fall far from the tree?”  Was my daughter’s label going to impact everyone in the family?  That’s a selfish thought, I know, but it’s a real one. How was this going to impact my little boy? Was he going to be teased and have to spend years listening to people talk about his ‘retarded’ sister and say the same horrible things about him? Would he be able to handle it and would I be able to handle the looks and comments from people that didn’t know any better?

So, how was I going to handle this Truth?  Get over it, just accept it and move on…… I know that’s what I should have done, but hearing that word was like a scarlet letter on my little girl’s chest and mine too for the entire world to see. Who would love her?  Who would accept her?  Who else besides her family would ever love her? Who else except that young Boy and Girl that had started out years ago with all the best intentions?  Every time I looked at her all I could see were the end of my dreams for her.

When I Look at You

When I look at you I think about the way things should have been. When I look at you I think about the ways I must have sinned.

A beautiful child with an imperfect mind; a young mother’s dreams each day unwind.

There are days that pass without any tears; but more often than not the pain reappears.

With daily reminders of the way things ‘should’ be; in the faces of young girls growing happy and carefree.

When I think of you I wonder what the future has in store; a future so uncertain it pains me even more.

I used to dream of pom-poms, of ribbons and of curls, and all the many things that go with little girls.

That dream is gone and in its place is a future I’m unsure of; the path that I’m now taking is both frightening and unheard of.

When I look at you I also wonder why this has to be; why can’t someone else out there be better for you than me?

I haven’t always done my best,

I haven’t always wanted to.

I haven’t always shown it,

But deep inside I’ve loved you.

I know that with each passing day, I’ll find the strength I need,

To see you through your unique life and help you to succeed.

But please forgive the tears that fall when I look at you sometimes.

I’m only crying for the dream that left me years gone by.

We all deserve to know the Truth, right?  I’ve heard it said a thousand times that the Truth is out there.  Sometimes you have to search for it yourself and then be ready for it when you find it.  I was ready to know the Truth about my little girl because now I knew what it was like to have a child that followed all the textbook norms and was ‘typical’.  My parenting skills didn’t cause my daughter’s issues because my baby boy was just fine in my care.  So, what did cause her delays?  Both Boy and Girl wanted the answers and were ready to really “hear” what the doctors had to say.  Bring it on, we can handle anything, haven’t you seen what we’ve already been through?  Guilt get ready because the “Truth” shall set you free!

“So, what is it that you are looking for?  What are you hoping to gain from your visit today?” Those were the words we heard as we sat in the doctor’s office weeks after having our daughter evaluated by a team of specialists at our own expense.  I said we were ready for the Truth and that meant a second opinion from more professionals.  We weren’t unhappy with the medical care our daughter had been receiving; after all she was being seen by a neurologist and a developmental pediatrician and we respected them both.  But, we wanted to hear the words that they never said to us.  We knew that she wasn’t going to catch up and be fine. We knew she wasn’t just ‘delayed’ and we definitely knew that it was more than just seizures. So we went searching for the answers…..and we found them; “Your daughter is mentally retarded.  That means that she is functioning mentally at half her age.  She will always be that way. She won’t go to college or become a doctor, she probably won’t get married and she won’t have a family of her own, but she will graduate from high school, learn to do basic math and have some reading skills.  She’ll need help when she’s an adult and things like dressing, bathing and working will be hard for her to do independently. But, you don’t know what she’s capable of, so keep your expectations high, she might surprise you. Every child with mental retardation is different. I know you’re wondering how it happened, but the truth is that most of the time there is no reason. We really don’t have a way of finding out that information for you.”

Boom! There it was…the Truth….no doubt those were hard words to hear but we needed to hear them. I felt some relief and just kept thinking; thank you, thank  you for your honesty and for finally saying what it was we had been wondering for a long time now.  Yes, those two stupid words hurt when you first hear them, but that’s what it was……..mental retardation.  I remember it really didn’t sink in until an hour or so later when we were sitting at a restaurant after meeting with the doctors. I felt a huge lump in my throat and I fought hard to keep myself from crying. Why was this happening? Boy was there for me once again and he sat quietly with me as tears came down my face right in the middle of that busy restaurant. We didn’t have to speak a word to each other. We just looked into each other’s eyes and held hands. I could see he was feeling the same things; how and why did this happen to our little girl?  The doctors couldn’t answer why, only that there were many reasons for a child to become mentally retarded; maybe it happened during conception, or while in the womb, or maybe during the delivery; maybe the years of seizures and medications caused it.  We didn’t know, well the doctors didn’t know and Boy didn’t know, but I knew in my heart that it must have been something about me; it must have been something I did; I must have been imperfect in some way. Welcome back Guilt, didn’t you hear that the truth would set you free? Why are you back and why do you insist on ruining my life?

Even though I found a reason to go on each day, it was still so, so hard. My little girl wasn’t getting any better and soon those horrible seizures came back with force. This time they changed their appearance a little bit, perhaps because Reality and Guilt have a sick sense of humor but whatever the reason, it was awful. Instead of the typical grand-mal type, her seizures were manifested now through staring fits or odd behaviors that lasted several minutes until she would go into a full shaking, tonic-clonic seizure.  Sometimes we knew one was coming, sometimes we didn’t.

Our world changed again in an instant and we were back to doctors’ appointments and medication changes. It was just as scary as it had ever been.  She just wasn’t the same little girl; her eyes were blank, her stare cold, and her face as pale as porcelain.  She was biting and chewing on things worse than before and she seemed to regress in many of her skills.  She was lost, a little girl uncomfortable in her own skin. Her doctors requested more tests and then informed us that she was probably having hundreds of seizures every day that we weren’t seeing. We all started obsessing about every little thing she did waiting for signs that a seizure was coming. Her teachers had the nurse on speed dial and worried on a daily basis because they were concerned for her just as much as we were. What must her world have been like with all of those ‘interruptions’ and losses of awareness? What horrible things were going on inside that little girl’s head? Again, all I could think about was when was the happily-ever-after that Boy and Girl wished for ever going to happen?

School Journal Entries (Elaine Stephens and Maggie Grove, Miracle Worker #2):

August 22^nd, 1997:  Seizure began at 2:00 when she grabbed a green marker and just started scribbling on the table, then within a minute the seizure started.  Ambulance came at 2:15. I now have a phone in my classroom.

September 5th, 1997:  Was “out of it” this morning. She has had several petit-mal seizures this morning. She was better in the afternoon. Had two accidents today. Her wet clothes are in the bag. 

October 17^th, 1997:  It was a hard day for her, lots of hitting and pinching herself and us, very non-compliant all day.  When I took her to the bathroom she kept hitting herself in the head and telling me “L hit herself, look”.

October 21st, 1997:  We’ve stayed close to her as we are seeing the behaviors we see before seizures, quiet, running away, biting self, defiant, compulsive. She had to come back from Pre-K for singing the days of the week loudly during ‘story-time’ (however, I think we can master her objective for sequencing the days of the week).

November 3^rd, 1997:  Quiet today, especially at lunch.  She had to come back from Pre-K classroom because she wanted to take her shirt off.  She came back with me and we practiced keeping our clothes on and I did the best!

November 5^th, 1997:  She told Maggie that she had to go potty, took her several times and nothing.  Then while outside for Pre-K recess she pulled down her pants and went right there.  Other than that it was a good and compliant day!

November 20^th, 1997:  Wow, we can tell she doesn’t feel good.  She alternates between laying her head on her table and being a monster.  She got away from us at lunch.  We saw 5-6 little stares before lunch.

December 12^th, 1997:  Seemed more oppositional today, especially in the pm.  In her Pre-K class she tore up materials, hit and bit herself, banged her head against the wall, threw toys and wouldn’t pick them up.  It was a pretty rough day, hope your weekend at home is better.

December 15^th, 1997:  Well, the mall trip was a disaster.  I was late getting there and Maggie already had them back on the bus, so I stayed with her so the other two students could go back inside.  Our little girl was amazing, she pulled down her pants and Santa’s beard, stomped, yelled, bit several kids and herself.  It must have been wild.  Bless her heart, I don’t know why being sick affects her behavior so negatively. 

January 7^th, 1998:  Wow!  She messed in her pants and wet her pants, got her poop out (to mold it I guess).  She has been calmer without that medicine but she still looks at me while she calmly destroys my work.  Oh well, she worked for a while today on her Language Master, colored shapes, and practiced cutting.

January 27th, 1998:  I guess we’ve been having the calm before the storm. Today we had a lot of defiance, biting and scratching. However, she handled the potty by herself with verbal prompts and she figured out how to use the scissors and has cut paper every chance she got!

February 10^th, 1998:  Maggie has requested that L get her nails trimmed ASAP because her hands look like she’s been in a cat fight! She ran from Maggie after pm recess.

April 16^th, 1998:  A little rough this morning-noncompliant.  Tried to bite Maggie and couldn’t sit in a chair for her five-minute time out so had to stand with me and hold my hand. We are running out of ideas of what to do with her during this hard time, but we won’t give up trying to figure it out!  Hope you are doing Ok.

May 13th, 1998:  Found a movie in PreK that she liked called “Wee Sing”. She enjoyed digging in playground pebbles this morning. We did a little tune-up today, she made a mistake and told me “shut up” when I told her to pick up some cards. She later got upset with ChiChi for crowding her and started to bite but changed her mind and pulled her hair instead.

The one thing that made it easier hanging on to my rope was my Baby Boy. Bringing home that little man was so different than my experiences three and a half years earlier. He seemed to be at ease with everything I did.  It was effortless, peaceful and wonderful.  He thrived and grew and met all of his milestones; despite ear pulling, nose pinching, hair grabbing, back biting and binky stealing that his sister put him through.  Slowly, I began to feel a little more at peace about being a mother and I finally understood how wonderful it could be; after all, my little boy was flourishing and I loved every minute of it.  The times I had alone with him during the day were some of the happiest I had ever had as a mother.

But even during a perfect day with my little man, I still wondered about her day and worried about those seizures happening again, which they always did. After picking her up from school after a seizure one day, I remember just breaking down in front of her teacher with my baby boy on one hip and my little girl on the other.  I remember feeling totally and completely empty, like I could just float away…….I set her down and took her little hand and somehow made it home in a fog.  I just didn’t feel like trying anymore and just like that I wanted to give up.

For days and months I couldn’t escape that feeling. I dreaded getting myself up in the morning because I knew what the day had in store for me. I didn’t want to face the tantrums, the opposition, the defiance and the heartache.  I called therapists and made appointments because I was scared about what I might do to myself and to her, but I never went.  They couldn’t help me anyway. They would just diagnose me as depressed. Hey, no kidding, tell me something I don’t know! And then they would prescribe medication for me so I could ‘deal’ with things better. But then the two of us would be medicated and if this was going to be for the rest of my life I needed to find something else to get me off this rope besides drugs. What I needed was another mission to focus on and that’s when I looked at my Baby Boy, he pulled me right back in and saved me. He gave me the strength to hang on and to even climb that rope just a little bit. Looking into his eyes, I knew I’d be OK, I had to be, for his sake.

Baby Boy

I see love in your big bright eyes; I feel peace there during my dark times.

 I see happiness in your smiles so bright; I feel joy when I look at you at night.

 I see hope in the first steps you take; I feel pride at the strides you make.

 I see life in you and all that you can be; I feel love for you in every part of me.

 What I never knew before as a mother; you’ve shown me each day like no other.

 What I felt as shame many times before; you’ve shown me to be so much more.

 What you’ve done for me you will never know; you were born for a reason all those years ago.

Medications, doctor’s visits, baby diapers, pull-ups, seizures, temper tantrums…..and so much more were the norm at our house!  Things were definitely different with two children to take care of and, to make things worse, there seemed to be  little to no improvement in my little girl’s behavior like I had hoped for, at home or at school. She was challenging her teachers on a daily basis but I knew that before she could learn they would have to teach her to behave and that wouldn’t be an easy task. The special education program that she was in was for children with autism aimed at improving communication skills and behavior, which was exactly what she needed.  However, we never heard the words “autism” from anyone, only that she had autistic tendencies and her speech was severely delayed. Her teachers not only helped her, but were there for me as well.  I called them our ‘miracle workers.’ They gave me advice, spent time explaining things to me, and even empathized with me when I needed it the most.  They made me feel somewhat competent and they helped me eventually become ready for the Truth about my daughter and her future through their daily communication logs.

School Journal Entries by Ms. Elaine Stephens (Miracle Worker #1):

August 22^nd, 1995:  Her temper flares are shorter, quick screams, then compliance.  She painted in PPCD room.  It will take us time, but I think we are on the right track. 

September 29th, 1995:  She worked almost 30 minutes straight with the OT. We had men coming in and out of our room working on the air conditioner. When they came in Lauren would say “good morning” we are going to appoint her our hostess!

October 12^th, 1995:  Major fit in pm, we tried letting her come to music circle time and she wouldn’t stay, so after several tries we took her back to her area.  This made her really mad! 

October 18^th, 1995:  She is talking so much more and clearer.  We can now understand her when she tells us to “shut-up.”  We let her play out of her area with other kids and she did fine.  At one time she came over where I was writing in books and got up in my lap, just to visit.

November 15^th, 1995:  She learned the finer points of rock throwing yesterday.  Today she tried her new skill and got into trouble so she flung herself down for a fit (twice). Then she sat herself down on the bench.  Lots of talking-wish I could understand more of what she’s saying.  She bit herself during her first fit.

December 13th, 1995:  OK, day, I hope the brushing calms her at home. She’s still working hard on your present. She threw a handful of beads at me and she was quite shocked when I made her pick them up and then sit in a chair. She said a lot of things to us from that chair!!

January 22^nd, 1996:  Fishing was not a lot of fun today.  It drizzled and the fish did not bite.  I do not see a difference in her behavior at school.  She continues to challenge authority continually.  We’ve gone back to the 10 X 2 compliance.  She seems more comfortable with the structure.

February 1^st, 1996:  Whoops!  We got thrown out of Early Childhood for screaming-she hasn’t had any big fits in our room, but challenges everyone by putting toys in her mouth, picking things that she shouldn’t, and crawling under tables. 

February 26^th, 1996:  No tantrums today!  We have all noticed how much more she has been talking.  Still not interested in playing with the others but is playing closer to them now.  We worked on compliance and “Give me…”

February 28^th, 1996:  Very distractible today, impulsive and loud, other than that she was happy.  Why did her doctor say to just give her Ritalin in the morning?  It’s already through her system by the time she gets to school.  We can handle it but would make her life easier if she could focus on something for a little longer.  She is so bright that I hate to lose any time with her. 

March 5^th, 1996:  I had three children under three and an absent husband!  It will get easier as you start to feel better.  Of course you won’t be able to sleep over four hours at a time for the next twenty years!  She is much more focused and the Ritalin has definitely not decreased her appetite. 

April 4^th, 1996:  She was upset before the egg hunt and got more upset after we got there.  She hunted eggs with me and had a great time but things started falling apart for her and we came back.  Is she biting at home?  She tried to bite one of her teachers. I’m sorry the tantrums at home are getting worse.  Have you told the doctor?

April 16^th, 1996:  Great day!  Glad to hear that she is being kinder to baby Sam.  Just sorry he has to go through that. She sorted colors much easier today, colored circles, read a book, talked about growing vegetables today.

May 24^th, 1996:  Thanks for the cookies!  They were just what we needed to get us through our day.  She has been great today following directions and participating in classification activity with three other students.  Maggie told her to wait for her outside the room and she did!

May 27^th, 1996:  Good day!  She sat at tape recorder with headphones and listened and sang with the music about 30 minutes.  It was so cute as she would hear a song that she liked and get up to bring the headphones to me, which of course when she walked across the room would come unplugged-she would say “no music” and go back and try again.  She tried to wander away from the playground at recess but she would wave before she left!

That’s how her first year of school basically went.  There were ups and downs and we were trying hard to figure out her behaviors and work with doctors on medications and dosages.  Her teachers communicated with us daily, letting us know if the medicines were working or not.  I admit I appreciated all of their comments, but there were times when I would read that journal and just cry.  I didn’t know what to do and I was overwhelmed.  I was doing my best but my best wasn’t good enough. I was still clinging to the hope that she would ‘catch-up’ and I was still hanging on to my rope as tightly as I could!

Was my little girl really going to ‘catch up’ like her psychologist assured us. Was she really going to be like all the other children her age? Was my little girl ever going to do anything that other children her age were doing?  What were the other kids her age even doing?  I didn’t really know because my reality had been my daughter and her crazy and delayed development.  Exactly how far delayed was she? The children I had observed at her school were at least able to sit and color and were interacting with each other like typical three year olds, but my little girl was in a special classroom challenging even the most seasoned veteran teachers.  She wasn’t playing with dolls or toys like the other kids, and at recess she was in her own little world, running around on the outskirts of the playground not aware of anyone else.   She cut in front of people for the slide, threw the rocks, put them in her mouth and up her nose, and didn’t talk or relate to anyone.  The other kids were definitely NOT doing those things.  What exactly was going on and was she really going to catch up someday?

The Truth was out there somewhere, but nobody was telling it to me.  Something inside kept eating at me; something inside kept telling me “she’s not getting any better.”  But, for the time being our lives went on, they had to, we were simply too busy to stop and search for the Truth.  My little girl went to school and her teachers would take one step forward and ten steps backwards.  At home, it was the same, daily struggles for attention and control were the norm and I was exhausted and still very pregnant! We finally received the ‘magic little pill’ when doctors decided she was old enough to try Ritalin.  Ah, and just in time for the arrival of “Baby Boy”.  This tiny blue pill helped her maintain some stability and control in her little world if only for a short period of time.  It slowed her motor down and allowed her to ‘think’ about things before she did them.  You could see the change in her sweep across her face when the pill kicked in.  It definitely helped, but it wouldn’t be the answer we had been hoping for; unfortunately, it wasn’t going to FIX her.

March 8^th, 1996:  Hello Big Sister!  So far things have been pretty wild at home with your baby brother.  I think you are a little jealous of him at times.  You are fine when he’s sleeping or in his baby seat, but when mommy is holding him you get very upset and have tantrums (you bit your arm one time). You have a hard time being nice to him and you want to grab him and pull his ears.  Did I mention you are taking Ritalin now?  Twice a day and it has greatly improved your behavior, especially at school.  You are paying attention better and doing better playing with the other kids. 

March 31^st, 1996:  We were in San Antonio last week, you did pretty good over there, nothing got broken.  But, you had a seizure while we were there, the first one in about 3 months.  You were upstairs taking a nap with daddy and he said he had his arm around you and you were acting funny, then you started shaking.  He yelled for me and when I saw you I knew it was a nasty seizure. You were so scared and you wanted to be held.  Afterwards you were a little crazy. 

April 12^th, 1996: The past few weeks you’ve been a little under the weather, so that’s put you in a less than happy mood.  You’re much crankier at school too.  Your tantrums are worse now and you have been banging your head and throwing yourself on the floor screaming.  It’s a little frustrating for us and for your teachers too.  Baby Sam is also cranky and this means that mommy has to hold him more and that makes you VERY upset.  Today we drove around for an hour to calm you down and then we went for a walk.  Your last hour awake was as crazy as ever.  You took off all your clothes and ran around the living room peeing on the couch and floor.  After we finally got you to bed, we went in later to check on you and you were totally naked in your bed, which was wet.  I was too tired to change the sheets, so we just moved you to the other end of the bed.  I’m exhausted. Oh, today during our car ride some nasty things came out of your little mouth.  We were behind a slow person and after I yelled “go” you added “sun-da-beech”.  I’ll let you figure that out when you are older. 

May 11^th, 1996:  Well, today we got permission to give you Ritalin four times a day, twice in school and twice at home.  Your tantrums and hyperactivity are exhausting and we are concerned that you might hurt Baby Sam; even though you love him very much.  You are so excited to see him in the mornings and you want him next to you when you play with your toys. You love giving him “tisses.” You get so excited that once you bit his ear and tonight you left teeth marks on his belly when you were ‘blowing’ on it like mommy.  Sometimes you just don’t realize what you are doing. 

October 21^st, 1996:  Well, it’s been a long time since I’ve written.  It’s so busy with both you and Baby Sam.  You had a seizure in September and about a week later you got very sick.  You were a holy terror!  It was the roughest time we ever had together.  You weren’t sleeping and you would cry, bite, hit, and throw things.  We lost our patience with you so many times, it was hard.  Then you had another seizure when we were at the doctor’s office because you were having a tantrum.  We finally got you better so you could go back to school.  Then your teacher called and said you were having a seizure there at school.  I ran up there, with Baby Sam, to take you home.  We had to increase your seizure medication again, and now you’ve regressed with some of your skills.  The Ritalin you’ve been taking helps, but it only lasts a couple of hours at the most.  The doctors think you might be old enough to try another medication that may last longer, but we have to see about these seizures first. You’ve been doing better with Baby Sam.  You want him to play with you and you will bring him toys and you love to chase him around.  He’s only eight months old and he’s walking already (probably to get away from his big sister!). 

Those doubts and worries about having another child subsided a little bit when August finally arrived. I couldn’t contain my excitement when my little girl started school! I was hopeful that things might start to improve now that she was going to get some help from professionals. There she was, sitting on a school bus, strapped into a car seat so she couldn’t run away, but she was the cutest little thing.  I waved goodbye every morning and enjoyed the three hour respite as best I could.  I was amazed at how wonderful her teachers were. Their commitment and understanding of her was incredible. Challenges?  Oh boy, there were many those first few months.  My girl wasn’t about to be told what to do and she announced her dislike of things with fierceness. I continued recording many of the events in my journal.

September 1^st, 1995:  You started school about a week ago.  They’ve been having trouble with you going into tantrums about every fifteen minutes or so.  They were talking to me about getting a helmet for you to wear so you don’t hurt yourself, because you have been banging your head. But now they have set up a corner for you in the room where you can play for ten minutes and then they make you work for two minutes.  This seems to help with your compliance to follow rules.  They’ve also taped you screaming and having a tantrum and they play it for you to listen to and tell you how silly you sound.  The bus has you strapped into a car seat because you were getting out of the seat belt and crawling over all the seat backs, it was dangerous.  We took you to see the neurologist and you were wild in his office.  He is sending us to a psychologist to help us with your behavior and he prescribed another medication to help calm you down. 

December 9th, 1995:  Oh, baby, today I had a conference with your teacher at school.  She said you were making progress, but she told me everything I already knew.  You drove me crazy when you came home today.  Maybe I was upset because you have been bad at school, or maybe it’s being pregnant, but I tried to take you out to the mall and you screamed the entire time we were there.  I tried to sit on the floor and play but all you would do was climb on me and jump on my back and throw toys at me.  I just had to put you to bed early.  I don’t know why you do these things?  I try to give you all my attention, but that’s not enough.  Your teacher said you are like a bucket with a hole in it; every time I fill you up with any kind of attention, it gets emptied and you want more.  We were supposed to meet with a psychologist last week, but they cancelled and now we have to wait another two weeks.  You are driving me crazy.  I don’t know what to do anymore, yelling doesn’t work, spanking doesn’t work, you just like it and then you hit me.  Putting you in your room is good, but we have to drag you up the stairs and lock the door and then listen to you bang forever!  Then, once you are quiet, we have to check on you because you like to poop in your pants and then rub it all over the walls, the floor, and on yourself.  I think you do it on purpose!  Your brother is coming soon and I don’t know if I can do it.  I’m missing out on having a normal three-year old daughter like everyone else has.  I wish you were like the other kids.  I know all the seizures and medication have done this to you.  This Christmas I just want you to get better and for us to figure out how to be a normal family instead of one that yells and screams all the time. 

January 3^rd, 1996:  Happy New Year, we made it home from San Antonio yesterday.  Christmas went pretty good, you got lots of great presents.  Then daddy and Pappa Rock left to go hunting and we hung out with GG and Mamy.  You were a lot of work and you kept us all on our toes, you kept saying “shut up” all the time.  Nonna and Gpa came for a visit and you were pretty bad.  I put you upstairs twice because you were misbehaving so much and both times you messed in your diaper and painted the walls with it! 

January 12^th, 1996:  Today we met with the developmental pediatrician.  She was very nice and now that she’s seen you she’ll be able to help us with your behavior.  She said you had ADHD and Developmental Delay and she feels that all of your seizures have stalled you emotionally at around 12 months of age.  She said intellectually you may be farther along, so we need to slow you down and see and in time she feels that you will ‘catch up’. She kept commenting at how pretty you were and how happy.  We’re going to try a new medication that will help you sleep through the night, yeah!  So, now we can all relax and wait for your baby brother to arrive!  I hope your teachers notice better behavior now that you have new medication.  I’m so excited about our new doctor and I know she will help us.

January 30th, 1996:  Well, we are still waiting for baby brother to come. We are all ready and just tired of sitting around. You’ve been sick all week and also very mischievous. I can’t tell if your new medicine is calming you down but it sure makes you sleep at night! Nobody can wake you up. But, you stay wound up all day and a little on the troublesome side. It’s just that you are very fidgety and restless and you get yourself into trouble. It’s nerve racking especially since I feel so bad lately. I hope this medicine works in time for your baby brother to arrive. I’m ready for you to catch up. 

That journal kept me sane and was a form of therapy that I desperately needed to survive during those early years. I had always kept my problems to myself; I never knew another way to be. People had their own problems, I didn’t need to burden them with mine and maybe my problems were actually caused by my actions anyway. I don’t know why I kept such a close guard on my feelings when I was around others? But, it was just who I was; don’t make a big deal, don’t complain, don’t worry other people, deal with it yourself.

Writing in that journal also helped me remember all the events of that terrible Thanksgiving seizure. Seeing that little girl hooked up to those machines was a vision I couldn’t get out of my head. I was afraid of it happening again everyday and we were told by her physicians that it most likely would. So they gave us rectal valium to use at home in the event that she had another seizure that wouldn’t stop. We had some sense of security with that medication in our cabinet, but we lived in fear that we’d have to use it. I began watching her like a hawk and I couldn’t relax at all; even when she was sleeping I would check on her a million times, and I’m sure Boy did too.  We were never at ease; and like we had feared she had many more seizures that wouldn’t stop even with that emergency medication.

Again, we found ourselves in the hospital watching her recover from what they called ‘status epilepticus’ and what I called ‘HELL’.  I don’t care what anyone says, you never get used to it and it’s NEVER ok for a child to go through that; nobody’s baby should suffer in that way.  I saw it many more times and I lived in fear of it everyday; but I tied my knots and kept hanging on, that was all I could do. While everyone else was enjoying their carefree lives, I was quietly shedding tears for the one I didn’t have each and every day. I wanted what those ‘other’ mothers had; I wanted a chance for us to be a happy family with ordinary problems.

It’s part of human nature to envy what others have and you don’t; and I envied others often. I tried to do ‘normal’ things like go to the store, take walks to the park, invite other moms over for play groups, take her to McDonalds and the mall playgrounds. But everyone was always looking, always judging, always pointing out to me what she was doing wrong. At least that’s what I thought they were doing in my head; I realize now that sometimes we can be our own worst enemy. I would notice other mothers enjoying themselves, talking to friends while their children played. I could never sit leisurely off to the side; I could never let her leave my sight for fear of what she would do to another child. I felt like I had no one; I had no friends that understood what I was going through; I felt so alone with my problems and there were days that my rope seemed to be frayed in a thousand tiny pieces making it impossible to hang on to.

I was, however, grateful for all the help we were finally getting because I was beginning to doubt whether I could hang on to that rope much longer.  When they told me that my little girl would be able to attend public schools when she was three, I was ecstatic.  Are you kidding me?  Seriously? Someone was going to try to teach her?  What did I do to deserve this?  I was just so thankful, so appreciative, so reassured that someone was going to try and fix what I felt was my problem and my fault.  It kept me going through those long and difficult months following that devastating Thanksgiving.

Something else kept me going as well, because I soon found out that we were expecting another baby.  Again, it wasn’t something that we were planning or even thinking about, our dreams when we were playing house in college didn’t include two children in the first four years.  And, this time it was definitely something I worried constantly about.  I cried often when I was alone and I thought to myself; would this baby have the same problems as my little girl?  Was I defective in some way?  Would I be able to love and raise another child? Am I a good enough mother?  Would I be able to do it with all of our ‘other’ issues? I tried to stay positive through it all but it’s hard keeping those ‘other’ thoughts out of your head.

Ironically, it was guilt that kept me going each and every day.  I again made it my mission to help my little girl, but this time not because I felt I was chosen by some higher power, but because I felt it was MY responsibility and MY fault. I was over all that “beauty of Holland” and “chosen” stuff and so my new phrase became, “When you get to the end of your rope, tie a knot in it and hang on!”  By this time, I was simply in survival mode. I started keeping a diary, a place to record my baby girl’s activities and a private place I could keep my true feelings.  It was hard listening to people tell me what I should be doing and how I should handle her fits.  Everyone felt compelled to offer their advice about how I needed to be firm with her and not let her get away with things. I listened to it all, but deep inside it made me feel even more at fault.  Were they right?  Was it my fault that she was acting up all the time?  Was I the cause of all of this?

 January 30^th, 1995:  Whenever we go out, Mama puts you in your stroller and I bring juice and chips.  You love to stay moving and you say ‘hi’ to everyone.  Most people say ‘hi’ back but if they don’t, you never give up.  Well, my final thoughts for you today; you were a little difficult.  Getting dressed, changing your diaper, eating and going for a walk were all hard today.  You protested and carried on.  The two things I CAN’T ever do with you are brush your hair or tell you ‘NO’, you absolutely hate those two things.

January 31^st, 1995:  This has been a long day.  At 9:00 you went to 2 School and Mama watched you from behind a special mirror.  You weren’t too happy and everything upset you.  When we got home you were cranky and Mama was a little upset with you.  I put you upstairs for a nap and I fell asleep downstairs too.  After almost two hours, I decided to go check on you.  You were on the floor all curled up and in one of your seizures.  I felt terrible because you had been upstairs for so long, I should have checked on you earlier, but you were being so quiet and I was so tired from the day.  I shouldn’t have yelled at you for being different. I’m sorry baby.

February 10^th, 1995:  We were invited to Grace’s birthday party.  Her parents are so nice to invite us.  Everyone from the play group was there.  Her parents were cooking in the kitchen and you wanted to eat, all you said was “I eat”, “I see”, and on and on.  You had a few tantrums so mommy had to take you into the bathroom to calm down.  I was so embarrassed because you were the only one there making noise and making a mess.  When we got home I was so upset with you for not being like the other kids. I’m so sorry for crying in the car.

February 19^th, 1995:  I love you sweetie, no matter how hard it can be sometimes.  I love you because you want to be happy and you do the silliest things just to make me laugh.  It’s hard to be yourself on your seizure medication.  I pray that you will have a future free of medicines and seizures.  I know you will.  I believe you’ll be OK, you’ll be like everyone else someday. 

 March 2^nd, 1995:  Another week has gone by and you have been very sick.  You were also horrible, the worst week of all.  I was sick too and I think you felt so bad that you were trying to make me feel just as bad.  Everything you did was naughty and I lost my patience with you.  It got so bad, I put you in the car and we went to Nonna and Gpa’s house even though they were on vacation.  I thought a change in scenery would help us, but you were a monster over there.  I was so sick of it all and of you.  Daddy called and talked us into coming back home; he said he’d help take care of us better. 

 March 23^rd, 1995:  Time to catch up on the past several days.  We had a little scare last week.  I took you for your blood test last Tuesday and the next day the doctor called because your liver functions were abnormal and your platelets were very low.  It was serious and we had to immediately decrease your medication and watch you carefully for bruising.  The doctor called every day to check on you and we took you back a few days later for another blood test.  Your liver function was better but your platelets were still low. The doctor wants to keep your medication dose low until you have another seizure because of these side effects.  

 April 3^rd, 1995:  OK, baby girl, you are asleep right now so let me catch you up on things.  Last week you had a prolonged seizure that wouldn’t stop.  We gave you your medicine but it didn’t work, so we had to take you to the hospital where they had to give you several different medicines to stop your seizure.  We spent two nights there in the hospital, and you were horrible.  We came home and had to adjust your medication and give you more.  You’ve been pretty difficult at home too since that seizure.  Everything sets you off.  Your tantrums are getting worse and happening a lot more often.  I don’t know why.  I try to keep you busy, but it seems nothing makes you happy.  It’s hard on mommy, but I love you little girl.

 April 9^th, 1995:  Wednesday we met with the ladies from the special education department at the school.  Mommy just filled out a bunch of forms and they watched you and asked a lot of questions.  The classroom was so nice, I think you will love going to school in August!  I’m so excited that you are able to go to school and learn things.  Your teachers are so nice and there will be four of them in the classroom, so plenty of people to watch you and chase you around!

May 6^th, 1995:  OK, crazy girl.  Now it’s time for an update on you.  It’s been a rough week; you are in one of your hyper cycles.  You’ve been having 2-3 small seizures everyday that only last a few seconds.  But, you have been so hyper. This afternoon I put you up in your room because I needed a break and when you were up there you went to the bathroom in your diaper and then pulled out everything and finger-painted the walls and yourself!  It was horrible! This illness is definitely driving everyone crazy, even the doctor can’t tell us anything.  Please hurry and outgrow this.  I can’t stand knowing that at any moment you might have a seizure.  I’m tired, please be good tomorrow little one!

May 21^st, 1995:  Naughty things you say and Do:  You still get into your diapers and finger-paint the walls in your room, you throw everything in the potty (mommy’s makeup, magazines, and paper), you climb on the kitchen counters and table, you say “da dam” and “fu-oo.” You touch dog poop outside in the yard and put it up to your nose and then  in your mouth, you’ve been biting again lately and you open your mouth and press your teeth on people, you grab faces and ears and you think it’s funny, and you wiggle out of your car seat and escape while mommy’s driving! 

I promised God that I’d do better when I left that tiny hospital chapel. Guilt had me convinced that somehow it was all up to me to “fix” her. I just remember thinking that I had to make things right with my baby girl. I had to make it up to her. I took one solid deep breath and headed back to that dreadful hospital room and watched her sit, wring her hands, rock and moan. The whole time whispering, “please God, make her better, I’m sorry.” Those days taught me how precious life is and how it can change in an instant and I’ll never, ever forget that lesson.

When she was stable enough to transfer, we had to leave Mother Francis Hospital for our hospital and doctors in central Texas.  It was hard saying goodbye to that group of physicians and nurses who had been so amazing.  The night our baby arrived on the helicopter, the ER doctor had been on his way to his annual Thanksgiving hunting trip and had to turn around to meet this sick little girl. Everyone from the helicopter pilots to the floor nurses fell in love with her and wanted to take care of us.  They found hospital beds for us to sleep in and provided us with many things from their own homes; such as clothes, soap, shampoo and even food for the both of us while we sat in ICU with her.  But, they had done all they could do there and we had to get her back to her primary care doctors so they could monitor her and decide on her course of treatment. The worried looks in their faces as we left told me everything; they were concerned for our little girl and the ‘hit’ she had taken, and I was scared.

I rode with her in the back of the ambulance for the three hour ride, laying on the gurney with her in my arms.  Keeping her calm and quiet was a challenge; she was a bundle of nerves fighting sleep with every ounce. The only thing I could do was sing to her and rock her. Every time the ambulance hit a bump, turned or stopped, she would wake up and scream; taking me another five to ten minutes of singing to get her to calm down. It was the longest three hours of my life and I’m sure of the ambulance drivers’ lives too.  What had done this to my little girl?  It was like she was schizophrenic, like there was a mentally ill person screaming to get out of this toddler’s body. I was quickly losing faith once more in the very things that had been temporarily holding me together.

When we were able to go home three weeks later with our little girl, we were armed with resources and were finally going to get some professional help.  There was now a definitive problem witnessed by many and we were referred to the state’s early childhood program after meeting with the hospital social worker.  I was looking forward to the help, but afraid to face this new challenge after that awful Thanksgiving night, which is now one of my least favorite holidays. A case manager came to our house to provide therapy and support and we began working with a speech therapist as well. Would I finally be getting an answer as to why this was all happening? Were they finally going to tell me what was wrong with my baby girl?

Of course, no answers came. None of the professionals were telling us anything, including the doctors that cared for her. Nobody was giving me reasons as to what caused her seizures and why she was so different from other two-year olds. The only word we ever heard out of their mouths was, “developmental delay.”  Hmmm, delay basically means not on time-right?  If a bus is ‘delayed’ it will arrive at the stop eventually.  So, eventually she’ll be like all the other kids her age? Wait a minute, was I in denial?  This sounds like denial; but, I wasn’t the professional. I was simply clinging to what they were saying; she was simply delayed, just ‘running behind’. They were the ones using those words, not me. But, whatever they called it, I still felt it was MY fault. I was the one that didn’t want her. I was the one asking for her to be taken away. I was the one apologizing from the very first minute I found out she was coming.  GUILT was still heavily parked on my chest with no signs of backing up any time soon.

There are times I sit quietly and wonder the reasons; there are times I cry out and question believing.

This child of mine I can’t comprehend; her mind so fragile there’s so much to mend.

There’s no one to answer the questions I cast; and nothing to stop me from blaming my past.

I’m caught up in feelings I never imagined;  this guilt that I’m carrying is quite heavy baggage.

If only the rest of the world could just see; I’m doing the best with what’s inside me.