Friday, June 10, 2011

The Hardest Post I've Ever Written

When a mother has a child, she wants that child to be perfect. She spends the entire pregnancy doing all that she can, to ensure that she is growing a healthy child and worrying...that something could go wrong.

It is no secret that I was terrible at being pregnant. I consistently dealt with pre-term labor through out my pregnancies, even including premature rupture of membranes at 29.5 weeks, with one of them. I've spent countless hours holding down my couch and hospital beds, trying to keep my baby in, just a few more days. I've dealt with horrible side effects from the the medications administered, in an effort to stop my labors.

Sometimes, the doctor's efforts worked and I was able to carry to 38 weeks, other times, they did not and I found myself delivering as early as 33 weeks. Thankfully, I can say that even my 33-weeker was incredibly healthy and I didn't deal with many of the issues that preemie mothers typically face.

Avery was our first preemie, born at just barely 35 weeks. We were warned that she would most likely have some eating/sucking issues and perhaps be unable to maintain her body temperature. It was reasonable to expect that she would spend some time in the NICU, while she adjust to life outside the womb, over a month before she was supposed to. At 7 lbs 3 oz, though, she was perfectly healthy and never required any special care. She was never admitted to the NICU and she was able to come home with me, never needing extended stay care.

Everything was perfect and wonderful with her, until she was about six weeks old. She woke up one day and I just knew that something was wrong. She had been acting a little sick, but even now, I don't know what alarmed me so much. After calling her pediatrician and finding out that I couldn't get her an appointment until the next day, I decided to take her to emergency, at Primary Children's Medical Center. 

The entire 40 minute drive there, I talked myself out of going, several times. Here I was, a mother for the third time, but I was acting like the over anxious, crazy first time mother, that rushes her child to the doctor every time it sneezes. I couldn't even really explain to the nurse why I had brought her in, other than she had a cold and seemed "off".

All hell broke loose, about half an hour after we arrived and they were assessing her oxygen. As soon as they realized her oxygen saturation was in the 40's (it should always be at least above 90!), the nurse screamed at me to run and holding Avery tightly in my arms, we tore through the ER to a resuscitation room, at mach speed. The next half hour is a blur of them bagging her, (because at this point she ceased breathing), nurses and doctors running in and out, machines beeping loudly and me collapsing on the floor, sobbing.

I'll take this moment to point out mother's intuition. LISTEN TO IT. Had I not left and taken her to the hospital when I did, she would have stopped breathing at home. If I wouldn't have been in the room with her and noticed...we would have lost our daughter.

The next two weeks were...hell. There is no other way to describe it. She was admitted to the Intensive Care Unit and was given a private nurse, around the clock. She stopped breathing more times than I can count over the first day and a half. After bagging her for almost an hour (off and on), one of the times, they decided to intubate her. She had to be sedated during this time, because she would fight the ventilator. It was determined that she had RSV, obviously a severe case and her preemie body was having a very hard time fighting it off. In addition to that, she dealt with bronchiolitis and a noscomial blood infection, as well.

I have never been so scared, in my life. I would have given anything to trade places with my baby girl. Seeing her suffer and knowing she was in pain, was the worst thing I had ever experienced. Watching a baby in a neighboring cubicle struggle for life and then pass away, while we were there, did nothing to ease my fears. I spent hours and hours holding my baby girl's foot (because I couldn't hold her), whispering for her to fight. "Just keep fighting baby girl. Mommy and Daddy love you so much. You are so strong and so brave. I love you. I love you. I love you."

Two weeks after our hell began, we were able to leave home with a still sickly, still on oxygen and many medications, baby girl. They had taught me how to place a feeding tube and feed her (thankfully, we didn't have to do that for long), to avoid her aspirating any food during feedings. They gave me an apnea monitor that would alarm if she stopped breathing (or held her breath too long. Or hiccuped. Or blinked.) so that I had some peace of mind and could try to sleep. I was terrified she would stop breathing again and this helped ease my fears, a little.  

Life continued on and Avery overcame much of that ordeal. Her lungs were very affected by the RSV and ended up in and out of the hospital over the next few years for bronchitis, pneumonia and asthma attacks that I was unable to control at home. In addition, she has had her adenoids removed and tubes placed in her ears, twice. She was the only toddler I knew, that would sit calmly and endure breathing treatments, every few hours, around the clock.

Now, what's my point with all this back story? Avery hasn't had it easy. She has been through more in her little life, than most adults. It has made her tough and it has made her strong willed. I cried for that baby girl to keep fighting...and she continues to fight, today.  

I also wonder if any of the trauma she endured as an infant...plays a role in the issues we are dealing with, today.

Avery can be a happy kid. She can be so sweet and loving and helpful. When that girl giggles, you'd be hard pressed to find anyone within ear shot, who doesn't start smiling. She has the most beautiful eyes, that truly define the phrase "window to the soul". I see so much, when I stare into those eyes.

Unfortunately, what I always see, isn't good.

My little girl is angry. Very, very angry. She is sad. And I don't know why.

We used to assume it was just Avery being a toddler and her outrageous temper tantrums would go away as she grew older and matured. She just turned six and these episodes show no sign of stopping.

She's throwing a temper tantrum...punish her. Yup, that's what we thought,too. We have tried time-outs, taking away privileges, sending her to her room, not allow her to participate in activities we did with the other children and yes, she's even gotten spanked. We've even gone the other way and rewarded good behavior with treats, lavish words of praise and encouragement and special one on one time with Josh or I. With the other children, these types of reactions to a "temper tantrum", would typically cause the fit to cease, rather quickly.

Avery is different. We have found that if we respond with any type of negativity (spanking, yelling, ect.), she immediately goes in to a manic rage. These periods can last hours and during that time, she becomes completely unreasonable. Just looking into her eyes, you can see that she is not herself. Her eyes become very distant, she repeats herself and screams excessively, she becomes violent and destructive and she cannot comprehend anything that we say to her. We can repeat over and over, for hours, why she must follow whatever particular rule has upset her, but she will not process what we are saying.

These episodes do not always occur because she is in trouble. She does not deal well with having her routines changed. If we have done something a certain way and then suddenly change it, it can cause her to melt down. It can be something as simple as which chair she sits in at dinner or a change in our plans for the day. With the other children, I can explain the reason for the change and they are able to adapt quickly. With Avery, it becomes the end of the world.

Another thing we have noticed that sets off these episodes is loud noises or repetitive noises. We know for a long time, she had diminished hearing, due to her chronic ear infections. Once the tubes were placed (the first and second time), she suddenly had full hearing and the world became very loud to her. Background noises that she probably wasn't hearing before, now became a source of frustration and annoyance. Sometimes, simply giving her a pair of ear plugs can calm her down.

Many times, Avery will spout off mean things, like her brain lacks a filter to stop every thought she has, from being spoken. We all have mean thoughts from time to time, but she will voice them (I hate you. You're a jerk. I'm going to hurt you.) without it ever crossing her mind that she shouldn't say it out loud. Most times, immediately after she says it, she gets a shocked look on her face, like "where did that come from?" and she will quickly apologize.

This isn't normal.

We know this.

It's hard to admit that something may be "wrong" with your child. It's hard to admit that you need help. It's hard to have people look at you and assume that you are a bad parent. It's hard to know that people think that you just don't know how to control your child. It's hard to know that people are judging you and assuming that you just let your child get away everything, when in reality, you are lost. No one has seen the numerous avenues you have tried and taken, to correct your child's misbehavior. They just assume don't know what you're doing.

In reality, we are slowly figuring out what responses, or in some cases, lack of a response, works best with her. We cannot respond the way the world wants us to, because that simply does not work. It may make me feel better to scream and yell, but it is doing absolutely nothing to remedy the situation.

It breaks my heart, to have this little girl climb on my lap and cry, asking why she's so mad all the time. I don't have an answer for her. I don't know why she's so angry. I don't know why she can't control her emotions, the way even my two year old is beginning to master.

I'm thankful to have a friend in my life that has a son with a few of the same symptoms, as Avery. I can talk to her and cry to her, knowing that she is probably the only person in my life, besides Josh, that understands my daily battles. She understands the internal battle, I've had for years, with reaching out for help. I don't want Avery forever labeled as "......". I don't want her to be known as a child with "......". I'm scared to think that I may need to medicate my child.

However, with her encouragement and seeing how well her son is doing with his treatment plan, I have made an appointment with Avery's pediatrician, for next week. No longer will I hide her struggle, or mine...and I will ask for help. There has to be a way to make my child happy and comfortable in her own skin. I'm willing to do whatever is necessary, to coax that happy little girl inside of her, to come out to play, more often.

When a mother has a child, she wants that child to be perfect.

Avery is perfect to me. I just need to help her realize it, too.


Jackie said...

I love you and your honesty is humbling and beautiful.

Coby said...

Thanks For making my cry already today! Love ya and let me know how the appointment goes.

Lacey Sue said...

I am at a loss for words here. Avery is perfect- she is a daughter of God, and nothing and no one can change that. I support your fully in your previous endevours and your future ones as well to help Av be the happiest Av she can be. Parenthood sucks sometimes, but opening up and talking about it helps. It's NEVER a failure to have a child that struggles. God feels that way about ALL his children. He has blessed you with such amazing children- you, Josh and Av will make it through this. I know you will. My prayers are with you all, so is my love.

Jamie Richmond -James said...

You are such a wonderful Mom. I will keep you and your family in my prayers.

The Lindstroms said...

Reading this hurts my heart yet inspires me as a mother. We are so very hard on ourselves as parents and I may not know you very well but I have no doubt you are an amazing mommy & your daughter is just as amazing! Our children our perfect in our eyes regardless of what society says or thinks! I pray your precious daughter finds all the happiness in the world!!

miss sarah said...

My heart lurched when you got into the real meat of this post, because I see many qualities that are similar to my younger brother.

He, too, spent extended time in the hospital as an infant - a cyst was found inside his ribcage when he was 3 weeks old; the instruments that the hospital used to remove the cyst and one of his ribs hadn't been properly sterilized, so the incision site got horribly infected and he went into septic shock; he spent about 6 weeks in the ICU.

Anyway, as I say, growing up my brother was a very, very, very angry boy. He, too, would say some of the most cruel and heartless things, and later literally wouldn't believe that he'd said them. When he wasn't having a "fit", he was/is the kindest, gentlest soul I know. But the slightest irritation sets off a horrifying chain reaction of rage what culminates in physical violence or violent speech.

My parents were not equipped to handle such a child. They did not seek methods to help him. They did not give him coping mechanisms, or medical or psychological intervention. As such, my now 23-year-old brother is socially and emotionally crippled in a way that I fear will never be overcome.

Bless you for addressing this within your girl. Bless you for giving a voice to her struggle, for giving her your unconditional love, for doing all in your power to assist her and giving her a secure safety net every time she falls. It will make all the difference in the world for the rest of her life. I adore you.

DizzyMamma said...

I started following your blog only recently, and I am so grateful I did, and so grateful you had the strength to post this.

My beautiful, funny, clever six year old, Freyja, first had a tantrum at 18 months. She was trying to stack rings, knew they should go in a certain order but was still too young to figure it out. She screamed and threw them across the room in a rage.

In the intervening 4 1/2 years I have always thought, "She'll grow out of it when she's 3", "She'll grow out of it when she's 4", then 5, then 6.

We are a few months into 6 now, and it is no better. I make jokes about it, call her a drama queen, challenging, my little diva, spirited, sensitive.... all those names people use to be nice or funny instead of saying naughty, badly behaved etc

She is a wonderful girl and a wonderful sister to our now one year old girl, but she melts down over everything, and as I and her father suffer from mild depression, I find our own thresholds for dealing with it get smaller by the year.

I understand your plight so much. I had to carry her screaming and crying uncontrolably out of KFC the other week because they had dicontinued chicken fries since the last time we were there - her favourite treat from there.

Last night she was being her usual self, not listening, doing what she had just been asked not to do, answering back, and I told her off. She said her frequently used phrase of "you hate me" and I assured her we love her very much and it is just the behaviour that I don't like. She turned to me with eyes full of tears and said "I just feel so alone!". I think my heart just about broke. Kids aren't playing with her at school and I think it is because she gets carried away and a bit rough and then doeswn't listen when they ask her to stop.

She has the biggest heart and I wish I could just make everything alright for her.

Your post has made me realise I am not alone, and maybe there is hope. Maybe she is not the only child out there like this, and maybe I can help her.

Thank you so much for your honesty and strength. I thought I was being a bad mother, but I was just being a scared mother - scared of my child being different.

Please let us know how things go for you xx

Janna Jensen said...

Your post brought tears to my eyes! You are a brave are a wonderful Mom!! She will look back one day and THANK YOU for helping her!! Best MOM of the year award goes to you!!!!

Amy said...

Sometimes us parents don't have ALL the answers and that is totally ok. You are a great parent for seeking help when you need it. I am sure you'll look back on this time as a turning point in her life!

Andrea said...

I am proud of you, sweet friend. For writing this, for seeking help. You are loved and your sweet lil' Avery is loved. I pray that you can come up with some answers so that Avery can be the little girl she is meant to be. Happy and secure.


Michele B. said...

I finally got a chance to read this beautifull post. What a hard thing to share but your love and concern exudes in your writing. What an amazing person you are and what a beautiful girl.

Whitney said...

I'm proud of you and Josh and Avery. I will be praying for you guys. Maybe a priesthood blessing will help her feel more at peace as well, help her to feel more open and calm, and you as well. She is a beautiful, sweet girl. You will get through this.

twostarsdancing said...

Hi =) I'm not sure how I came across your blog... I think I read a post a long time ago and started following your blog, so then I saw this.

I would like to tell you that I was exactly like Avery when I was young. FYI I am 19 years old now and in college. My mom didn't know what to do with me either, but eventually I got diagnosed with ADHD. I know its going to be hard to take a strangers word for it, but please look into natural solutions and holistic doctors before putting her on medications. Or research any medication in depth.

I am on a road to discovering who I really am right now, I am still young, and often different from my peers... but I would like to also tell you that I think I was misdiagnosed, but I may be wrong. Its just now I am so quiet and subdued, I have low energy, which I find is often solved by exercise.

I'd also like to tell you that now that I am older I think I may be on the autism spectrum and have asperger's syndrome, which I have researched and have found it is very difficult to diagnose in girls which may explain why I have not been diagnosed as of yet.

Also, despite all that, ridding the body of toxins can often reduce or even completely turn around the symptoms of autism and/or ADHD. Red 40, if you research it, can have very negative side affects. If she is blood type O, like I am, she might want to avoid things like wheat and milk. Also, I think involvement in something like girls scouts or sports would have helped me a lot in my childhood.

The last thing I'd suggest is that you put your daughter in front of an IQ test suitable for her age(You can go to a neurologist for this, I believe), and see how she does, you may be surprised. =) Just understand IQ is not the only sort of intelligence and she may be lacking social intelligence.

I want to tell you your daughter is a beautiful girl, I hope she can be herself, but also be happy. =)

twostarsdancing said...

Here is a book called "The Highly Sensitive Child"

A page about food allergies and Autism:

I promise they will be worth your time!

twostarsdancing said...

I hop DizzyMamma saw my post too =) now that I read hers.

DizzyMamma said...

Hi Two Stars Dancing

I did see your post - thanks so much for the info.

My child is also an incredibly picky eater and quite literally wants ketchup with everything, and I am sure that is a part of the problem in itself. I am hoping to be able to change her eating habits, and am slowly weaning her off chicken nuggets to real chicken, tinned spaghetti to home made mac & cheese etc to try to get the processed stuff out of her system.

Its a daily battle and is usually 2 steps forward 3 steps back, but its worth it if it helps her.