My Very Special Child

As the saga of Faith's life continues to unfold, I have been reminded time and again to just enjoy the beautiful child that she is instead of endlessly toiling about her future. It's so easy to get caught up in Dr appts and therapy days. Much harder to make time to just sit and love on this sweet angel of happiness and love. I am so very blessed to be her mother!!!

It is so difficult to hear the words that portray my child as less than perfect. Just yesterday I was faced with an evaluation that put Faith's motor skills at half of her actual age. Today I ache for a family member just starting out into her journey through the 'grey area' of autism spectrum disorder.

Right now I am taking some time to marvel at Faith's ability to smile at anyone, understand that feet are more fun than toys, and her never ending wiggling that lets us know she is so excited about life!

...I was told a story just a few days ago about a woman in Guatemala who brought her children to a missionary doctor. When she arrived the woman was nursing her 18 month old daughter who she already knew had a problem with her heart. When beginning to talk with the doctor about how serious the problem was, she said in her most loving voice, "this is my very..special..child". Her heart knew that the doctor was probably going to tell her terrible news, but she wanted the doctor to understand that this was her child, whom she loved with all of her heart for as long as life would allow!

You're a Big Girl Now!!! Tale of Two Nukies.

Well, it finally happened--Hope doesn't have her pacifiers anymore! I'm not sure whether to jump for joy or break down in tears. I know every parent faces decisions like the one Jay and I had to make yesterday. A strange twist of fate presented us with the opportunity to break Hope's nukie habit 'cold turkey'. We had been talking about the Nukie Fairy for a while now. She has been excited about the idea that the fairy would bring her some great gifts, but not quite ready to take that final step to give up her million suck a day habit. We had already sent our stash of extra nukies to the fairy, so she was just down to her 'two nukies and clipper'(a very aesthetically pleasing orange nuk attached to a pink nuk by a ribbon that had a clip on the other end in case Hope wanted to attach her Nuk sucking mouth to another object-exactly what an almost three year old needs dangling from her mouth 24/7). So yesterday the whole lot of dangling nukies went missing amid a giant family play date involving fourteen children in my fairly small house-not a big surprise!

At first she didn't even know they were gone. All the cousins kept her playing happily all afternoon. By dinner time Hope was starting to get sleepy and began asking urgently for her nukies. It was then that I made the swift decision to suggest that maybe the Nukie Fairy had taken them. At first she thought this was great! She would finally get the gifts that had been promised, but this excitement only last about an hour and the tears started to flow at bedtime! There is nothing that I like less than my adorable daughter looking at me with her tear streaked, snotty face and knowing that I am to blame. I know this because just a few minutes before bedtime I found them. They were laying on RJ's bed when I tucked him in. My choice now was to lie over and over and over to keep up the Nukie Fairy charade or to just give them back and let her go to sleep. This is where Jay steps in.

Jay keeps my soft heart in check when it comes to parenting. It would have been so easy to just let her suck those nukies into dreamland last night. But after already putting the Nukie Fairy plan in motion Jay thought we should stick with it and make the break. I know he was right-it is just so hard to see my sweet babies cry!!!

To my surprise the waterworks lasted a much shorter amount of time than I anticipated. Soon Hope was asleep and she only woke once in the night to ask if I had found her nukies yet. To which I responded "no" and back to sleep she went with no tears!!!! Hope was at my bedside this morning just after 6 with bright eyes and a huge smile:) "The nukie fairy already camed!" We ran downstairs to see the pile of gifts by the front door amid plastic sparkly fairy dust. Hope now has a Dora bedding set, Baby Jaguar doll and her own pack of gum-exactly what Nukie Fairies have been bringing young children for centuries I'm sure! And now another little part of my baby is gone forever:(mommy tears...
At least I won't be chasing that damn Nukie dangler around the house ever again!!!!Yippee!!!!!!

Continued...

DISCLAIMER: I don't wanted anyone to get scared away from this blog because of the long boring story of the past few years. I just thought I should get the basic story of our family on the table before I dabble into the day to day antics I want to share. So get ready, this is another(and hopefully the last) really long one!

OK, I ended with frustration but I return now with the rest of the story.

RJ has continued to balance right on the brink of autism/anxiety/normal development. He only began to qualify for services at school at the very end of kindergarten so he ended up starting his first grade year with an IEP(individual education plan). This helped so much because RJ was finally having difficulty with academics due to his problems focusing in noisy situations and lack of social skills. During this time, Jay and I continued to take advice from our psychologist and pediatrician about how to parent such a special boy. We were also parents now to RJ's two younger sisters, Grace and Hope, who were developing normally and were a real blessing to RJ. The girls constantly challenged his need to have a quiet, routine atmosphere-but always in a positive way. RJ was also blessed by my job as a nanny which provided him with two sudo-siblings. Parker as an older brother figure and Andy as a twin brother. As infants RJ and Andy were almost inseperable and even developed there own little toddler language--Very Cute:)!

As I look at RJ's life so far it seems to be unfolding in a bell curve of sorts. His development had gone from normal in early infancy to very worrisome during his 3-6yr phase. As he entered 2nd grade we began to notice some very positive changes. The curve seemed to be going back in the positive direction. I would love to attribute these changes to all of the great help he was getting at school and his first and second grade teachers(I would swear they were angels!), but who knows!! His social skills made a marked improvement and he started doing much better academically as well. The only thing that really continued to get worse was his sleep.

By the summer after second grade we had looked into our options for helping him sleep and stay asleep. It came as a surprise to us that RJ was waking in the night, but he finally was able to tell us and we immediately went to see our Ped. He told us to try over the counter Melatonin. It worked and Jay tried it too. I don't think it's working for him as well;). I still hear the snoring next to me every night. We were just very happy that RJ was suddenly doing so well.

It was also during this summer that we took our next big step further into The Grey Area. In July our youngest daughter, Faith, was born. I had suffered through what I viewed to be the worst pregnancy ever. From before I took the pregnancy test to 6 weeks after she was born I suffered from never ending irritable bowel. Without totally grossing you out I will just say that I did a lot of time on the potty. Unlike my other three pregnancies, which were relatively uneventful, I sooo much trouble with Faith. I had a hard time gaining any weight because of my bowel issues. Then at my 20 wk ultrasound we got a scare that she might have a chromosome problem. After further testing this turned out to be a false alarm-but it was literally that scariest two weeks of my life!!!!

The biggest surprise came at Faith's birth when they placed her on the scale and she weighed just 5# 7 ounces. A full two pounds less than my next smallest baby and almost three pounds less than Grace. Very hard to believe since they all grew in the same mommy for roughing the same amount of time. As time has passed we have discovered that her weight is not the only this for us to worry about. Faith was diagnosed at 6 months with a congenital airway problem called Laryngomalacia(I dare you to try and say that one!). This simply means that her airway is floppy and underdeveloped. She has had problems eating since birth and constantly snorts, chokes and sounds congested. For a few months she was also on an apnea monitor because we were worried that she would choke and stop breathing.

This is the interesting part-nobody can tell us what's wrong with her either!!! GREY AREA ALERT! I can only stay calm while writing this story for so long and then my undies get all up in a bunch. I love all four of my kids soooooo much I couldn't even find the words to describe it and I would never want to change anything about any of them, but I also want to be able to do everything I can to give them long, healthy, happy lives. How can I do that if I don't even know what is wrong???? I just had someone tell me today, as I was updating them on Faith's progress, that if anyone can handle this situation it would be me because I'm such a great mom. In the moment that was really nice to hear, but even great mom's can't handle everything!! I sometimes wonder what God was thinking when he was mapping out this life. Did He send RJ just to test us out to see if we could handle raising Faith too? These are the insane questions that fill my head sometimes.

I guess I'm ending with frustration again today. I will continue again soon with how things are going right now and hopefully brighten your day with the tales of our crazy family life:)

The Day Our Lives Changed Forever!

On this day, nine years ago, our lives were changed forever by the birth of our first child, RJ. We were a young married couple who were overjoyed to be pregnant and even more happy to have a healthy pregnancy. Just four years before I had been through a very traumatic loss when the family I was nannying for suffered the death of their two day old son due to a heart condition. I had anticipated his arrival with the knowledge that he would be sick and require surgery, but it never really sunk in that he could actually die until I recieved the phone call from his father telling me that he had not lived through the surgery. From that moment on my ideas about pregnancy and newborn babies were permenantly shifted from assuming the best outcome to always being suspicious of the worst.

On the day of RJ's birth I was again slammed with the reality that life and death are only a breath apart. Just as RJ was being brought into the world the doctors and nurses saw something worrisome on his heartrate monitor. He was quickly delivered and within hours had tests done to make sure that he and his heart were completely healthy. This time everything turned out fine. RJ was pronounced healthy and we left the hospital just two days later to start our life as a family of three. Little did we know that we had just stepped over into what I like to call 'The Grey Area'.

At first everything seemed to be alright. We had a sweet little baby boy who was adorable! He did have his moments of fussiness. Was it colic? "Probably" said the Drs. After a while they ran some tests to make sure everything in his tummy was working properly-and all was well. As Baby RJ grew a little older we noticed that he would get VERY fussy at loud family gatherings. He would usually get so upset that he would cry himself to sleep. He was also vomiting a lot for no known reason. Being first time parents I don't think any of this bothered us at the time. We just accepted that he was a sensitive baby and lived our lives according to his needs. It wasn't until into his second year that a little voice in the back of my mind began to wonder if something wasn't right. RJ didn't begin to walk until he was 16 months old. Much later than most toddlers and even more evident to me because the family I was still nannying for had a son exactly the same age. Their son, Andy, started walking just after his first birthday and their older son, Parker, had walked before he was one. I trusted our doctor and agreed that some kids just do things a little later than others.

Over the next few years there was just one unique thing after another to make excuses for in RJ's life. Frequent vomiting, a sudden obsession with monster trucks, he was terrified of balloons, he would scream or cry when any sudden noise scared him, he didn't like to walk barefoot on grass---on and on the list could go. It wasn't until he was in preschool that we finally found a pediatrician that took our concerns seriously. Was it possible that RJ was affected by Autsim?

RJ was tested by the school district and of course he landed in 'The Grey Area'. His symptoms could indicate Autism Spectrum Disorder or they could be some pretty serious anxiety issues. "It was too soon to tell"(that's what we were told). He was doing well in preschool and didn't seem to require any assistance, so we just waited. Eventually we started seeing a wonderful psychologist who began to help us understand how to parent our unique child. RJ had a hard time expressing himself and she helped us find ways to communicate better. It was during this time that RJ's sister, Grace, was born. I remember being very anxious about her health, but for some reason I just had a gut feeling that Grace would be just fine.

RJ continued to have a revolving list of symptoms that were indicative of Autism. His love of monster trucks started at 18 months and never wavered. He would rarely make eye contact with anyone outside his comfort zone of close family and friends. He had a quick gag reflex. And he developed some nervous habits like constantly picking his nose:( Again late in his kindergarten year we had RJ tested by the school district. This time he qualified under Autism Spectrum Disorder. Which means we still don't have a firm medical diagnosis, but he is able to recieve services because according to the tests he may be on the mild end of the Autism Spectrum. After the testing we returned to our pediatrician to find out that a diagnosis isn't necessary unless we intend on giving RJ any type of medication. I was finally getting very frustrated!

What frustrated me? SO MANY THINGS!!! Why did my son have to be affected by autism? Why can't someone, for the love of God, just tell us what's wrong with him so we can fix it? So many things would go through my mind. I remember at one time being jealous of my friend who's daughter has Down Syndrome. Wouldn't it be easier if we could 'see' the problem? So other people could 'see' what was wrong and not think he was weird. What would his future be like? Everything was filled with uncertainty. Grey GREY GREY GREY..................I just wanted BLACK or WHITE!

to be continued....