Monday, November 14, 2011

Feeding Disorder Hell & Our Narrow Escape

Even as a nurse, I can honestly say before I lived it myself, I had no idea how difficult it is to parent a child with a feeding disorder. In my experience, living with feeding issues is, in some ways, more difficult than dealing with other types of developmental issues. You can take an occasional break from other types of therapy, but even if you go on vacation, feeding issues go right along with you. The need to keep your child fed is always there, right in your face, all day, every day. It is kind of like water torture. The drip, drip, drip of water on your head isn't too difficult to take at first, but the longer it goes on the harder it is to cope.

Sometimes people on the outside looking in have a hard time understanding feeding issues. If your child can't walk, they seem to be able to understand that more easily than if they can't eat. Someone once told me they thought that the reason that Morgan didn't eat, and threw up all the time, was because I spoiled her. She thought Morgan was just being difficult. (No. I didn't hit her when she said that, but I'd be lying if I said I didn't bite my tongue...hard.)

For many people it is not easy to imagine how anyone could have so much trouble doing something that seems so simple to them. While eating may seem pleasant, easy, and natural to most people, it is really a very complex and nuanced behavior. It requires quite a few coordinated skill sets, as well as the proper functioning of many anatomical structures, muscles, the nervous system, the digestive system, the endocrine system and the sensory system. There are a great number of points along the way where things can go wrong. If just one thing is not functioning properly, or is not timed just right, the result may cause eating to become unpleasant, difficult, or even impossible to do safely.

When Morgan was in the NICU, she was fed straight breast milk into a feeding tube at first. It was a NG tube, one that goes from the nose, down to the back of the throat, to the stomach. Once the doctors were fairly certain her intestines would hold up under the strain of eating months earlier than they were designed to, they told me I had to let them supplement my breast milk with formula. I was told that human breast milk did not contain enough calcium and phosphorus for a micro preemie who was trying to build good teeth and bones, while simultaneously fighting for her life. I was told her teeth and bones would suffer life long effects if I didn't agree to the addition of formula.

Looking back now, I can see that Morgan's issues with reflux began shortly after formula was introduced, but at the time, I did not make that connection. I was told that almost all micro preemies have reflux. The reflux continued throughout the remainder of her NICU stay. Not long after it started, Morgan developed what is called oral aversion, which means she did not want anything in her mouth. It is an issue for many babies who are born critically ill. If you think about what the first oral experiences are like for them, and compare that to what a typical, full term baby experiences, you might be able to understand why. Morgan's first oral experiences were all very negative. Having a breathing tube shoved down her throat, and a feeding tube shoved up her nose, is quite different than what a typical baby experiences.

The first oral experiences of a healthy full term baby are typically that of feeding, and feeding is a self rewarding behavior. The baby does this suck, swallow, breath pattern, and that behavior is rewarded by their hunger going away. Healthy babies quickly make the connection between the two. In contrast, Morgan was asked to feed from a bottle for the first time when she was six weeks old. She had six long weeks of negative oral experiences before that first bottle, which had taught her one lesson over and over again, that "things in my mouth are bad." Also, for the first six weeks, there was no connection between sucking, and her hunger going away.

The fact that what they were feeding her turns out to be something that made her sick, only made matters worse. Although she was deemed medically safe to swallow, she was a slow eater, slow enough that the doctors wanted to place a permanent feeding tube. There was quite a bit of tension between me and the NICU doctors after I told them my definition of failure to feed was not the same as theirs. I was not willing to put my daughter through a third surgery, just because she didn't eat fast enough to suit them. I did not say I would never consent to the placement of a feeding tube, just that she had to fail first. As long as she was able to maintain her growth curve, not lose weight, or fail to gain enough weight, we would give her more time to figure it out. The doctors did not appreciate me going against what they thought was best.


Morgan in the NICU, giving it her best effort.


Let me be clear here. I am not anti G tube in general, as a nurse I am certain that they are very appropriate and necessary for lots of people. I just knew it was not right for my child. I am not even sure how I knew that. It was just a strong gut feeling.

Because my son had also had developmental issues, I already knew several speech therapists, and I talked with them about Morgan. I was told that kids who are borderline oral feeders, often quit eating by mouth all together after a feeding tube is placed. That makes sense, if you think about it. Why would anyone continue to do something that was difficult and uncomfortable once they figured out they didn't HAVE to? I mean, you gave up crawling as soon as you learned to walk, didn't you?

Eventually, Morgan's slow feeding was the only thing keeping her from being able to leave the NICU. The staff made it clear to me, it was my fault she wasn't home yet. If I'd just consent to the placement of a permanent feeding tube, a G tube, Morgan could go home. Trust me, after months of being in the NICU, I wanted her home very badly, but I wasn't going to let them force me to do what I knew in my heart was not right for my daughter. Every time I thought about agreeing to the surgery, my gut would scream at me that it was not the right path for us to take. Some day I'll tell you why I swore I'd never, ever ignore that voice again, but that is a painful topic for another day.

The day Morgan turned 4 months old, (2 weeks old adjusted), she was finally able to meet their feeding criteria, and come home. I was thrilled to take her home, but knew the road ahead would be difficult in many ways.


Logan meets his sister for the first time. She is four months old.
I don't know what formula they were feeding her in the NICU, but when we went home I was told to supplement my expressed breast milk with Neosure formula. Within a week of coming home, Morgan went from spitting up frequently, to actually vomiting several times a day. The NICU follow up team, which is the same group of doctors who saw her in the NICU, were still angry with me for refusing to place a feeding tube. They made it clear, they would would not help me with her feeding issues, not unless I agreed to the G tube.

She had come home from the NICU on Reglan, to help her stomach empty faster, and Zantac to reduce the acid in her stomach to protect her esophagus from damage. Neither of these medicines treat the reflux, only the symptoms. After a few weeks at home, Morgan began to projectile vomit, and it was nearly impossible to keep her fed. When I said I thought it was the formula that was causing the problem, I was told that it was NOT the problem, and that she "has to have THAT formula." After three months, when I called to ask for her medicines to be refilled, I was told by one of the doctors, "I just want to you understand that every doctor in this group believes you are not doing what is best for your baby, and unless you agree to a feeding tube, this will be the last time we refill her medicines." She couldn't have hurt me, or angered me more if she had reached through the phone and slapped me. I was livid. I hung up the phone, and fired them from the case. Please understand, Morgan was NOT a skinny baby. Her weight stayed between the 50 and 75 percentile for her adjusted age. We were keeping up. It was just extremely hard to do.


This picture was taken about the time that the doctors refused to refill her prescriptions if
I contintued to refuse the G tube. Does she look skinny to you?!
My regular Pediatrician, who had known me since Logan was born, was much more supportive. He told me, "Do you know who will tell me it is time to place a feeding tube in Morgan?....You will tell me. I know you will make the right decision for you child." He took over writing for her prescriptions, and I never spoke to the NICU follow up team again.

We went on, in more or less the same way, until she was a little over 2 years old. My life became this vicious little cycle of pumping breast milk, adding the formula I hated, feeding it to her, watching her vomit, cleaning up the mess, and then I'd start the process all over again. I even scooped up and measured what she threw up, so I could keep track of how much she kept down. I weighed her every day, so I could track her growth.



While a puke bucket was a nice idea in theory, it hardly ever worked in practice.

Not adding formula was not an option, since I was physically not able to make enough breast milk to keep up with her. Even though I was pumping 8-12 times everyday, maintaining a milk supply by pumping alone is not easy, and only gets harder the longer you do it. When Morgan turned 2 years old, I was still getting up at night to pump. Feeding her consumed my life. On a good day, I would spend 6 hours just feeding her, not including pumping, or clean up. On a bad day, it was more like 8 to 10 hours. As she got older she was able to use her arms to push the bottle away. Sometimes she would gag at the mere sight of the bottle. She got to the point where she would fall asleep as soon as I started feeding her, at the time I didn't realize why. It was only much later that I understood. Going to sleep was the only way she could escape the torture I was putting her through. She knew what I was feeding her made her sick. She tried everything she could to tell me, but because the feeding issues were just a part of the global developmental delays that she had, she lacked the communication skills to make me understand. You can't imagine how awful I felt when I finally understood. The guilt I feel over that is immense.

Over time, the doctors had given me a variety of explanations for her vomiting. At first, it was because she was so premature, then because of her low muscle tone in her abdomen. I was told IF she ever learned to sit up on her own, that the reflux and vomiting would go away. I just had to wait it out. Then I was told the vomiting was caused by her brain injury, that she was just over stimulated by her environment. The over stimulation was what made her vomit. Her Neurologist said he thought there could be a glitch between her vision and balance that caused her to vomit. I was told repeatedly, it was absolutely NOT caused by the formula, and that I should either learn to live with it, or consent to a feeding tube.

I felt like the doctors had let me down. They had tried to force me to do what I knew was not right for my daughter, so I was not eager to have yet another set of doctors tell me what they all had, that my daughter needed a feeding tube. I always knew there was an answer out there, a way my child could comfortably eat. I just didn't know what it was. As she got closer to 2 1/2 years old, I was exhausted and desperate. I knew we were running out of time. I knew when she turned 3 years old, she would have to start preschool, so she could continue her therapies. With her away from me, for even a few hours a day, there would be no way for me to maintain her calorie intake high enough to avoid the feeding tube. I couldn't choose between her therapies and her nutrition. I had to find a way for her to have both. If she was going to have to go to school with a feeding tube, I wanted the site to be well healed before she entered a school full of new germs. Seeing no other way around it, I reluctantly made an appointment with a well respected aerodigestive feeding team out of state. We traveled there several times, and had a huge GI and respiratory workup done.

While we were doing this workup, Morgan had the first of the 4 mild GI bleeds she would have that summer. A biopsy confirmed she had both acute and chronic gastritis, (inflammation of the lining of the stomach). The inflammation was so severe, it was causing her stomach to bleed. She began having coffee ground looking vomit, and unmistakeably stinky diapers that as a nurse I knew meant she was bleeding into her GI tract. At the same time, she began to wake up every night, about an hour after going to sleep, crying and thrashing inconsolably. She would eventually vomit, then go back to sleep, and sleep the rest of the night. She was started on Prevacid, and Carafate to treat the gastritis.

In the end, what we were told was that aside from the fact that her esophagus doesn't contact as strongly as it should, there was no obvious physical reason for her vomiting. The ENT there told me, "I think this is just classic grade 4 bleed swallowing issues." When I said for the hundredth time that I thought it was the formula, the GI doctor said, "I am all but certain, formula is not her problem." As I had predicted, I was advised to see the pediatric surgeon to schedule surgery to place a feeding tube. Because of her chronic vomiting, the GI doctor initially wanted to place a GJ tube. That would mean she would be fed into her small intestine, which would require her to be hooked up to a pump nearly all day every day. Despite her Neurologist's dire predictions, by that age, Morgan was running everywhere all the time. She was so active, I couldn't imagine having her hooked to a pump all day. I managed to talk the GI doctor into trying a G tube first, which would allow me to feed her "meals" instead of doing a continuous feed.

We met with the surgeon and set a date for the surgery. My gut was screaming at me so loudly, I could hardly hear anything else. The closer to the surgery we got, the more panic I felt. I was running out of time to find a way out of this. Two days before the scheduled date, I couldn't sleep so I got up, and got online. I had been lurking on a blenderized diet group on yahoo for a little while. I was planning on dumping formula as soon as the G tube was in. Because of her very low volume tolerance, I didn't dream that we could do blended diet orally. I came across a post where someone mentioned they always had their son eat a little of his blend by mouth, then she would tube whatever he couldn't finish. I decided, I was going to try a blended diet in her bottle. At this point, what did I have to lose? I sat down and wrote a recipe for a blend that would cover her nutritional needs, but did not contain any of the foods most commonly known to cause allergy or food intolerance. If memory serves, I believe that first blend consisted of baby rice cereal, vanilla rice milk, stage one baby food beef (with broth not gravy, the gravy one contains corn), stage two baby food bananas, stage two baby food sweet potatoes, and a little olive oil. I used http://www.choosemyplate.gov/myplate/index.aspx/ to figure out how much of each food group she should be getting a day, and http://nutritiondata.self.com/ to figure out the calorie content of the foods.

By the time Morgan was up that morning, I had made her first batch. I sat down with her, knowing this was my hail Mary shot. If this didn't work, we would have to go through with the surgery. I said a prayer, and gave her the bottle. I had no idea if she would take it or not. She did. Back then, she never took more than two ounces of formula at a time. I watched with tears in my eyes, as she polished off a full 4 ounces before she stopped. I sat her down on the floor to play, and waited for her to throw up. She didn't. I got up the next morning, and realized that for the first time she had gone 24 hours without vomiting. For the first time in a very long time, I felt hope. I knew in my heart, I had found the answer I had been looking for.

I called the doctors, explained what I was doing, and told them I wanted to postpone her surgery. The doctor wasn't happy to hear the news. He told me if we didn't do the surgery as scheduled, it would take months to get her back on the schedule. He said he was sure I couldn't do blended diet orally, and that in a few days I was going to be very sorry I cancelled. He said he understood that I probably felt like placing a feeding tube represented a failure on my part, but that I had gone above and beyond to avoid it, and it was time to have it done. I told him no. I said I would need months to know if this was going to work anyway. He asked me to keep what would have been a post surgery follow up visit, which was 30 days away. He said he'd look at her then, and we'd see how she would grow on blended diet.

Morgan grew just fine on blended diet, much better than she had on formula. Her color imporoved. Her hair & nails started to grow. She got sick less often. When she did get sick she got over it faster. She's never had one drop of formula since. Very slowly, I added one new food a week until I found a pretty good variety of foods that she can tolerate. Among other things, I have figured out that she does not tolerate any form of corn. Since all of the formulas we ever tried contained corn syrup solids as their main source of carbohydrates, that one ingredient doomed each of them to failure. Even Elecare, which is the go to "hypoallergenic" formula contains 53% corn syrup solids. (Yuck.) Although Morgan couldn't talk, her response to Elecare was, "No thanks. I'd rather die." She drank one ounce and went on a hunger strike for 24 hours. Now I understand why.


Something I wasn't sure I'd ever get to see, Morgan
happily, and comfortably feeding herself.

Obviously, food allergy or intolerance is not the only cause of feeding issues, but I do think it is something that is far too often ignored, or discounted as a possible cause. The doctors in our life did us a great disservice by not investigating the cause of her vomiting. They just wanted to treat the symptoms. The only way out for us was to do an elimination diet, find the culprits and avoid them. It is not a quick process, but it was our path out of hell. It was well worth the effort.

Thanks to the blended diet, we have escaped our feeding disorder hell. I shudder to think how close we came to being trapped there. Does Morgan eat like a typical 4 year old today? No. Due to her stroke, she will probably always have trouble with solids, since her esophagus doesn't contract as well as it should. She has some low muscle tone in her mouth, so she likes to lay down to eat. That way gravity helps her, and she gets less orally fatiqued. Honestly, she eats better than any other child I know. She gets a wonderfully healthy blended diet, full of whole foods and no garbage. She happily asks for her bottle, and is able to feed herself independently. She no longer throws up. She hasn't had a bout of gastritis or a GI bleed since we dropped formula either. She is growing like a weed, and is tall for her age. Her weight is fine. I no longer count calories. We're a world away from where we were in September of 2009, when I started her on blended diet.

I am sometimes asked if Morgan will ever "eat like a normal kid". The answer is probably not. With her pretty long list of food sensitivities, processed foods are pretty much not an option. Even if she could swallow solids easily, dhe can't eat McDonald's etc. She is comfortably meeting her nutrional needs, something I honestly wasn't sure would ever happen, so I am okay with where she is feeding-wise. I have a limited amount of time and energy and I have decided to devote it to what I consider to be more important areas of development for her. Communication and behavior issues are my focus for now.

Blended diet has greatly improved not only her quality of life, but that of my whole family. Getting here was very difficult, but I am not sorry I stuck to my guns because in the end placing a feeding tube would not have solved her problems. It would have just made it more convenient to give her the very thing that was making her so sick in the first place.

If you are interested in trying blended diet, here is a link to a facebook note I wrote about it. It contains enough information and some helpful links to get you started:

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To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents:

"Loving a Miracle - Special Parents Supporting Each Other."
This is the original support group, and all content is open to the general public.
https://www.facebook.com/#!/groups/lovingamiracleismoving/

There is a closed group, for those of you who would like to post things outside of the view of the general public:
"Loving a Miracle - The Special Parent's Safe Zone."
https://www.facebook.com/#!/groups/lovingamiraclethesafezone/

There is also a public PAGE.  This is where I post information and links that I think are helpful to special needs parents.
www.facebook/lovingamiracle

Permission to repost/reprint: If you would like to obtain permission to repost or reprint this post, please send me an email to kristinablizzard@yahoo.com. Thank you.

- Kristina Smith Blizzard

Saturday, November 5, 2011

When God says "No."

The Abyss... By Kristina Smith Blizzard

Once upon a time my grief pushed me out on to the ledge. I stood on the edge, and stared into the abyss.  The abyss stared back at me, mocking me, challenging me, asking me, "Is that all you got?"

Deeply wounded and angry, I shook my fist at God knowing all the while I was but a child throwing a tantrum. God understood my anger, and loved me in spite of my limited understanding.

Pain has surely bent me, but never broken more than my heart, and my stride. There were many times when I asked, "Why me? Why my children?" It has taken me years to be able to see even part of the answer.

I have come to understand my wounds have left me more than scars and pain. They taught me lessons I simply could not have learned otherwise:

Only a broken heart can ever hold true love in it's fullness.

Only those who have suffered great loss can really appreciate what they have.

There is life on the other side of the pain, and that makes surviving worth it.

And finally, that I can use what I have learned to help others. Doing so is both very important, and very rewarding.

                                                                             ----------

I wrote that little piece a few months back, and as I just attended the funeral of a long time family friend, it came to mind again today.



It was heartbreaking to see the depth of pain in the face of his wife, to see in her eyes that she didn't believe me when I said, "You are going to be okay." At this point in her journey, I am sure she can't imagine anything will ever be okay again. My pitiful and clumsy attempt at reassurance just rolled off her like water off a duck. She has absorbed all she can for now. Her husband suffered a great deal over this last year or so. They knew his diagnosis was terminal, but that doesn't stop one from hoping, and praying for healing, now does it? She must have asked God countless times over the last year to heal her husband, and yet she was forced to watch helplessly as her husband painfully, and ever so slowly left this world for the next. She wants to know why God didn't heal her husband. She had begged Him to do so. Some people may think God didn't answer her prayers. I think he did. Sadly, His answer was no.

I have had my share of God saying "no" too. I know my losses are not the same as losing a husband, but I think some of what I have felt and learned still applies here. I prayed to God for each of my babies to be born healthy and normal. I loved each of my babies with all my heart. Yet time after time, I was told again, and again, that my baby had died. It happened to me 10 times, eleven if you count Morgan's twin. My sense of loss left me feeling like my chest was just a huge gaping hole. I got to the point I was beginning to suffer from the symptoms of post traumatic stress disorder. I would walk into the doctor's office and feel myself start to unravel a bit. My hands would tremble. My heart would race. Sometimes I felt like the office walls were closing in on me, or that I couldn't breathe. I lost the ability to contain the tears that inevitably ran down my face. I would sit there feeling embarrassed, braced for impact. Each time it became more difficult to simply make myself walk through the office doors. If you are wondering if that kind of loss gets easier to take, it does not. If anything it got worse, as my hope of ever having a baby dwindled, and my over taxed coping mechanisms reached their limit. I stubbornly kept asking God for a baby, and He kept saying no. His answer was hard to take. I couldn't understand His reasoning. We were happily married. Our bills were paid. We were more than capable of taking care of a child. Why would God tell me no, and then turn around and give a baby to someone else who was less capable and less willing to care for it? He even gives babies to women who will chose to abort them. I was angry at God, because I couldn't see his logic.

For a while. like a stubborn teenager, I refused to talk to Him. Even when I was too angry, and too childish to take his answer gracefully, I always knew that any distance between us was created my me, and not by Him. He never left me. He never abandoned me. I got angry and turned my back on Him. He is a gentleman. He never forces Himself on us. He waited for me to calm down, and turn back to Him. He stood there all the while with His arms wide open, and patiently waited for me to come to my senses.

I did not have anyone in my life at the time that had dealt with recurrent miscarriage, but I remembered a lady I had worked with when I was in my twenties who had. Although she had never discussed it with me, I was told she had 5 miscarriages before she finally gave up. I remembered thinking how hard that must have been for her, and that it was very sad. I thought highly of her, and I knew she would have made a wonderful mother. Even back then, long before I had a true sense of what that kind of loss would be like, I was impressed by her ability to keep going. She had been through what must have seemed like hell, yet she and her marriage had survived. She had been able to go on with her life. Her silent display of strength made me like her even more.

After having a few miscarriages of my own, I had a whole new understanding of what she had been through. I understood why she gave up trying. I started telling myself, "If she could live through this 5 times, I can survive it 6." It became my own little internal mantra for those times when I wasn't even sure if I had the strength to draw my next breath. I kept telling myself, "It has been done before, so I can do this." My co-workers experience had taught me a lesson I had never forgotten. Because of her, I knew that this painful time in my life was just a season. Eventually, this storm would pass, and I could survive it. She was living proof that on the other side of the pain, regardless of the outcome, was a life worth living. I promised myself we would try 6 times, no matter how much it hurt. I put my head down, and concentrated on just putting one foot in front of the other. My sixth pregnancy resulted in my first live birth, our beautiful son, Logan. The truth is without her example, I am not at all sure I could have kept going. I don't think I would have ever made it to my sixth pregnancy without knowing what she had been through.

Can you see that through her painful experience God had revealed to me a lesson? Years before I needed it, He had given me a little piece of truth to hold on to. He was able to use her pain, and her ability to gracefully move on with her life as a guiding light though my own darkness. Without knowing her, without knowing about what she had been through, my life would have been so much less. I would most likely not be a mother today. In an odd way, my children are her children too, because they were born of her pain as well as my own.

A year after the emergency C-section that saved our son's life, we started trying to have another baby. I had 5 more miscarriages. The losses were still very hard to take, but my fear of forever remaining childless was gone.

After losing Morgan's twin early in my twelfth (and last) pregnancy, I went into preterm labor at just 26 weeks gestation. For those of you who don't know, forty weeks is full term. I had been hospitalized with preterm labor several times with Logan. They were always able to stop my labor. As we pulled out of the drive way, about noon on January 12th 2007, I felt confident they would stop my labor again. I thought we'd be back home by the next night. I couldn't have been more wrong. I had no idea that life as I knew it was over.



They were able to stop my labor, 20 minutes after my water broke. A mere twenty minutes too late to change the direction things were going. The very instant my water broke my whole world tilted on it's axis. As a nurse, I immediately knew there would be no going home anytime soon. I knew the next time I left the hospital, it would be after my baby was born. I knew she would be born extremely premature. Most frightening of all, I knew I could lose her, and that I had absolutely no control over whatever would happen next. I was officially in uncharted territory. I had prayed for God to help them stop my labor, to protect my baby from being born so early. His answer was no.

After what is best described as a three day long nightmare, my daughter was born on January 15th 2007. There were a lot of prayers sent up in the following 4 months while we were in the NICU. I prayed that she would beat the enormous odds against her. I prayed she would be spared the effects of being born so extremely early. I prayed she would still be given the chance at a "normal" life, the chance she deserved.

At just 1 pound 13 ounces (840 grams), I knew she was at risk for a brain bleed. I asked God to spare her that devastating and life threatening complication. His answer was no.

I asked God to stop her brain bleed from getting worse. His answer was no.

I asked God to keep her infection free. His answer was no.

I asked God to heal her, so she would not need surgery. His the answer was no, not once but twice before she was even a month old.

I asked God to spare her any complications from surgery. His answer was no.

At times, my prayers were reduced to incoherent sobs. Did He not hear me? Did He not care? Did He have no mercy?

Over time, I adjusted to the "new normal." I came to accept the fact that being a special needs parent is part of the journey on I am on. I began to see that God didn't always say no to me. There were some pretty huge yeses in there too.

I asked God to give me the strength to face my trials. He said yes.

I asked God to give me children. He said yes.

I asked God to let Morgan live. He said yes.

I asked God to help me be the kind of mother my children need. He said yes.

I asked God to show me what good could possibly come from all of this. He said yes.

He has provided me with a way to use what I have learned to help others. He has allowed me to see our pain has not been in vain.

In a recent sermon, my pastor said, "How you handle denial reveals a lot about your spiritual maturity." Looking back, I can see how my own responses pointed to the kind of spiritual growth I had yet to achieve.

I have learned God is a good God, and he gives us good gifts. It is our own human limitations that hinder us from seeing how an unwelcome fork in the road can be for the best. I have learned that I can trust God, in ways I would never have understood before. When I can't see how something could possibly be good, I have learned I can trust God's heart.

I have come to see that life is like a huge, intricate tapestry woven by the very hand of God with precision and love. Each of our lives are a single thread in that tapestry. The problem we have as human beings, is that we are not often able to step back far enough to be able to see how our own thread, and the path that it takes is important to the whole. The grand scheme of things often eludes us. It takes the omnipotent eye of God to fully appreciate it all. It is rare that we are given a even a glimpse of things from God's perspective.

As a Christian parent, I am called to raise my children for their holiness, not their happiness. I often tell them no, and they can't begin to understand the grown up reasons behind my logic. They often get angry at me for saying no. That my no is for their own good, or the good of others, doesn't really matter to them at the time. They just want what they want. The explanation is sometimes too adult for them to grasp at this age, at their present level of maturity.

Can you see the parallel between my relationship with my children, and God's relationship to us?

Taking the parallel further, when my child is angry at me for saying no, I don't stop loving my child. I don't abandon my child. My saying no does not prove I don't love them, or that I don't care about their pain or disappointment. I grieve when my children grieve. I hurt when they hurt. Even if they don't always appreciate it, I always do what I know is the best for them. God is the ultimate Father. He loves us in the way all good fathers do.

I believe God takes us through our journey in such a way as to help us develop as we should. I have come to understand we are on this planet to grow as spiritual beings, not just to enjoy ourselves. The only part of us that lasts, that really matters in the end, is our spirit, our souls. That means that our spiritual growth is what is most important. The rest of what we are is just fluff, ultimately temporary and inconsequential. I know that I have grown a great deal, particularly since Morgan was born. She has made me a better person, and a better mother. The lessons I learned came at a high price, but the truth is they couldn't have come any other way.




I try to focus on the good things that have come from what we have been though. I look for ways to make some good come from what I have learned.

Sometimes when God says no, it can feel like one great big stunning sucker punch. Sometimes His no means your dreams and expectations need painful revision. The trick for me is has been to remember God's hand weaves the path of the thread of my life. I have learned to trust in the goodness of his heart, even when he says no.

As far as my family friend who died, at the age of 70, months into his illness, and months before his death, he accepted Jesus into his heart. Perhaps his illness was what it took to drive him to that decision. That is not something I can pretend to know. There is also the fact that with a long illness comes the opportunity to set your affairs in order. Not everyone gets that chance. It is a gift, the awareness that your time is near. It is a gift that comes at a high price, but it is still a gift. I believe in my heart my friend is in heaven. I believe his grieving wife will get through this, even if she can't yet imagine how that is possible. I believe she will see him again when her own journey is done. I hope she can feel the love I know God has for her. I hope she can draw on his strength when she is pushed past her own. I believe God has found, and will continue to find ways to use this experience for the good, even if our human eyes can't see it, even if our own limited understanding fails to reveal His truth.

I believe God is a good God, and he gives us good gifts.

-------------

To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents:

"Loving a Miracle - Special Parents Supporting Each Other."
This is the original support group, and all content is open to the general public.
https://www.facebook.com/#!/groups/lovingamiracleismoving/

There is a closed group, for those of you who would like to post things outside of the view of the general public:
"Loving a Miracle - The Special Parent's Safe Zone."
https://www.facebook.com/#!/groups/lovingamiraclethesafezone/

There is also a public PAGE.  This is where I post information and links that I think are helpful to special needs parents.
https://www.facebook.com/lovingamiracle

Permission to repost/reprint: If you would like to obtain permission to repost or reprint this post, please send me an email to kristinablizzard@yahoo.com. Thank you.

- Kristina Smith Blizzard

Saturday, September 10, 2011

Loganisms, The Flavor of My Son

It is hard to believe, but my beautiful son Logan is now nearly 8 years old. Because my daughter's needs are so much more severe, she is often the focus of my blogs, and facebook posts. But lest we forget, Logan is a miracle in his own right. In case you don't already know it, with my strong history of miscarriages, just surviving to the point of independent viability was no small feat in and of itself. Then during my labor, his heart rate fell very low. They rushed me to the OR for an emergency C-section, and as we hit the OR doors, his heartbeat disappeared from the monitor. They got him out as quickly as they could. He had to be resuscitated, but he made it, and no mother has ever been happier than I was that night. After years of heartbreak, and 5 miscarriages, I could finally hold my baby. Finally, I could look into the face of my child. Finally, my arms were not painfully empty. All the pain that I had endured, had proved to be worth it. My heart was so full of love and joy, that I felt like I could just burst.



He is such a great kid, funny, smart and yes, quirky. I have known from pretty early on that he had developmental issues. He was first evaluated & seen by the local early intervention program at 14 months old, when I realized how far behind he was compared to other kids his age. His Pediatrician had always down played my concerns, but I called in early intervention anyway. You don't need a doctor to refer your child to early intervention services. I don't think everyone knows that. I strongly believe when it comes to your child's development, the rule of thumb should be "when in doubt, check it out." Early intervention matters. 

Logan has been re-evaluated over the years, and he has been given different labels at different times. First it was "Central Nervous System Immaturity", then ADHD.  He has recently been formally diagnosed with High Functioning Autism, Central Nervous System Dysfunction, as well as ADHD. They are also "monitoring" him for Tourette's Syndrome.

Although I have long been certain Logan was on the spectrum, the new official label did sting a little bit. For some people labels are painful, and scary. Some people find themselves unable, or unwilling to use labels when talking about their child. Maybe saying the words makes it too real for them. Maybe they just don't want to lump their child in with a bunch of preconceived notions, and low expectations. Those feelings are no less valid than my own, but to me personally, labels are just words. They have no magic power to lessen my child's potential. Admitting my child is disabled doesn't change who they are, or who they will become. Facing their challenges by name doesn't mean I give up. It doesn't mean I don't work very hard to help them continue to improve, and grow. The only real function labels have in my life is that they can help me get my children the services they need. They are just a means to an end. They're a short hand way to give others a general snapshot of the kinds of issues we are challenged with.

Labels are very limited in that they can't give you a true picture of a child. They focus on the problem areas, and don't provide the smallest hint of  how awesome a child may be in spite of his challenges. With that in mind, I wanted to share a few things with you, as a way for you to kind of get the flavor of my son, this wonderful child I have been blessed with.



He has a pretty unique perspective on the world, and has quite a way with words. The following is just a few  fairly random examples of what I call Loganisms:

8/20/2010
Me: Logan did you eat all of your lunch? Logan: I ate all of my meat balls. Me: How come you didn't eat anything else? Logan: Because I gave up being an omnivore. I am a carnivore now.

3/11/11
Knowing he'd had a pep rally at school, I asked, "What was your favorite thing about today?" Logan says, "That I chose to follow the rules, & to only speak when it was appropriate." Me: "THAT was your favorite part?!" Logan: "Yeah, It felt good." (Only my son)

6/1/2011
Logan happily bounced up the stairs to watch his usual one cartoon show before going to sleep. Just a few minutes later, he came back down stairs & quickly gave me a big kiss and hug. As he pulled away, I could see he looked upset. (Mommy radar alert) "Logan is something wrong?" Taking his head in his hands, his voice broke as he said, "Mommy, I think I am running a fever, & getting sick." I was a bit confused by this, because he had been perfectly fine moments before, and he didn't feel warm. I knew something must have happened while he was upstairs. "Logan, honey, did something happen upstairs?" His face immediately crumpled, & tears filled his eyes, "Come upstairs & I will show you." I took his hand, & upstairs we went. Then he hands me an aerosol can of "Deep Woods Off" insect repellent that he had found in the closet. Having had a previous issue with Logan spraying things, I knew he knew better than to spray it, and I did not smell it on him. or in the room. Still not understanding what had happened I said, "Did you spray it?" Logan said through his tears, "No! I just smelled it, and now I have West Nile Virus!" He had picked up, and smelled the can, without spraying it. Then he read the label & misunderstood what it said. He thought it said the can contained West Nile Virus! He thought when he smelled the can he caught the virus. I struggled not to laugh, hugged him & said, "You are fine. There is no virus in the can." He didn't believe me, & said, "Mom, it says, keep out of reach of small children! I need some fever medicine! " I said "I'll put it up, but you don't need any medicine." He said, "Yes I DO! I have a headache & I am getting sick!" I said, "I promise, you will be all right," then gave him a Tums, (instead of any real medicine) and told him to go to bed. Then I went back down stairs, laughing so hard I could hardly tell Brad what happened. You just have to love that kid.

6/15/2011
An epic battle between Godzilla & Iron Man happening on my family room couch, is suddenly interrupted by Logan, "WHY can't we just post this on youtube?!"

6/16/2011
Digging around in my somewhat over stuffed refrigerator, Logan accidentally knocked a brand new bottle of maple syrup out onto the floor. It broke. I told him to go sit down while I cleaned up the glass, so he wouldn't get cut. A minute later Logan yells, "OH NO!! MOM!! I have a DNA leak!!!" (Translation for those of you who don't speak Loganese, "I am bleeding!") It was just a small cut. That's my boy.

7/2/2011
Logan, pushed one straw onto another making in effect one long straw. He was thrilled that it made it possible to drink from such a long distance. He liked his new invention so much, he immediately decided he should mass produce them. "I can sell them for $3.99 each." When I reminded him things are only worth what someone else is willing to pay, he said, "I can sell them a second one for $1.99! That's buy one get one 1/2 off!" He paused then said, "Mom, when can I REALLY have access to free enterprise?" I asked if he actually knew what the term free enterprise meant. He said, "Sure. the ability to start your own business." Honestly, what 7 year old knows that?

7/2011
Logan, "Mom! Mom! (laughing hysterically) He said (laugh, laugh) that the fog was (laugh, laugh) as thick as (laugh, laugh, laugh, trying to catch his breath) ...SEE POOP!!!!! (dissolves into laughter) Me, "Logan honey, I think he said "pea soup." Logan sobers up immediately, "NO MOM, I HEARD HIM SAY SEE POOP!"

8/2011
Logan was waiting for the sandwich he'd said he wanted for lunch. When I sat it on the table, I yelled to Logan, "Soup's on!" intending to convey the fact that his food was ready. Logan came running, sounding horrified, "Mom!!! I didn't say I wanted soup!!!" Yes, he really does take things literally.

8/26/11
Me: Logan, WHY is my pillow in the bathroom floor soaking wet? Logan: I wanted to see if it would absorb water! Me: Alrighty then. How do you think I might feel about sleeping on a wet pillow? Logan: (actually having to think about it a second), "Not good?" Me: As if there should be any question.

The following morning, the first thing out of Logan's mouth: "Mom, your pillow IS good at absorbing water!" Me: "Yes, I noticed that."



Logan is this wonderful combination of scary smart and socially challenged. He wants so much to please others and to have friends.  He has very little ability to guess what others are feeling inside, or to predict how you might feel in response to something, like pillow experiments for example. It honestly hadn't occurred to him that I might not be pleased with the idea. He has such a tender heart, and he tries very hard. He simply can't see the things that he does that hinder him socially. With his shiny new High Functioning Autism diagnosis, I hope to be able to get him into some social skills classes, and speech therapy for the pragmatics of speech. I plan to use this label as a foot hold, a way to gain traction so I can get him where he needs to be. I will use it for what is worth, and not focus on the negatives. I will continue to educate myself on his issues, and learn more about the way he views the world. I will use this label to help me better understand my child, and help my child reach his full potential, whatever that means for him.



To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents:

"Loving a Miracle - Special Parents Supporting Each Other."
This is the original support group, and all content is open to the general public.
https://www.facebook.com/#!/groups/lovingamiracleismoving/

There is a closed group, for those of you who would like to post things outside of the view of the general public:
"Loving a Miracle - The Special Parent's Safe Zone."
https://www.facebook.com/#!/groups/lovingamiraclethesafezone/

There is also a public PAGE.  This is where I post information and links that I think are helpful to special needs parents.
https://www.facebook.com/lovingamiracle

Permission to repost/reprint: If you would like to obtain permission to repost or reprint this post, please send me an email to kristinablizzard@yahoo.com. Thank you.

- Kristina Smith Blizzard

Saturday, August 13, 2011

Asked to Walk a Different Path

I am a special needs parent. It is not something I planned on being, but there it is, and there it will be. It has become part of who I am. Sometimes those on the outside looking in wonder what it is like to be a special needs parent. They shake their heads and say things like "You are amazing. I just don't know how you do it." Sometimes I just laugh, and say "I don't know how I do it either." No child comes with an instruction manual, and no parent needs one more than a special needs parent.

Personally, when things are at their worst, I put my head down and concentrate on just putting one foot in front of the other. Sometimes thinking further than that can be too overwhelming. Most of the time as special needs parents, we put on a brave face, and go out into the world with our heads held high. Many of us know as we step out the door, that despite their best efforts, our children will often fail to meet your expectations.We know we have no choice but to put our kids out there anyway, and hope you find it in you to be kind, and understanding to them. We pray you won't step on our children's tender little hearts when you let your disapproval show. We cross our fingers, and hope our kids will miss the stares, and the occasional rude comments. We pray you will treat our children like you would want to be treated, if the situation were reversed.

We love our children with all our hearts, and feel truly blessed by their presence in our lives. We aren't just saying that to make it sound better. It is the honest truth. Many of us have come to see that special needs kids have an important role to play in this world. Every time a special needs child is born, there is an opportunity for the true nature of humanity to be revealed. It is revealed in the way we treat that child. Their vulnerability brings out, and into focus both the best and the worst of us.

All parents are protective, and special needs parents are even more so, because we see how difficult it is for our kids as they try to make their way through a world built by typical people, for typical people. Many of us have nervously paced hospital waiting rooms, after entrusting our precious child's life into the hands of a surgeon. Some of us have sat at the bedside, unsure if our child would live though the night. Some of us have seen the cruelty people can inflict on those who are different. We have borne witness to the hurt in our children's eyes, when others have ignored, mistreated, or hurt them. We have prayed for miracles that sometimes did, and sometimes did not come. We have grieved for our children, for the extra difficulties they face, and for the injustice of their struggles.


Morgan nearly died twice just hours before
this picture was taken.



By the time Morgan was 1 month old, still 2 1/2 months
away from her original due date, she had already endured
a life threatening brain bleed, and two surgeries.

Most of the time you can't see the wounds we carry on on hearts from all these things, but once in a while, something unexpectedly tears those wounds open, and our bravado slips a little. When something triggers those deep, raw emotions we have as parents of special needs kids, you might see though a crack in our demeanor. You might see the pain we try not to wear on our shirt sleeves, or the grief we experience, but are determined not to wallow in.

We hold our breath, waiting to see if our kids will ever do the kinds of things you take for granted. Will my child ever sit up, crawl, take a single step, or run? Will they ever speak their first word, ask a question, or be able to say "I love you too?" Will they ever be able to eat by mouth, or be potty trained, much less graduate from high school, or ever hold a job? Is love, and marriage too much to hope for my child?

We throw away the "What to Expect" books, and tearfully celebrate every tiny, yet miraculous milestone our children achieve. We do so without focusing on how late it came. We find ourselves staring in amazement at how easily a typical child does things, and wonder to ourselves how it is you miss the everyday miracles in your own life.

At 6 1/2 months old, Morgan could lift her head.


If you get on our bad side, and you might also find yourself on the wrong end of some righteous anger, the depth of which you do not want to explore.

We don't want, or need your pity, but your understanding would be nice. Instead of staring at my child, try saying hello. Instead of shaking your head and saying, "I don't know how you do it," offer your help. We'll likely turn you down, but will be grateful for the offer.

Special needs parents are just like all parents, except we usually have to work harder, go further, and worry more. We have all the same hopes and fears for our children that everyone has, but for us, the hope is harder to come by, and what we fear is sometimes more more likely to come to pass. We did not chose this very challenging path, but giving up is just not an option. We negotiate the best we can through the potential pit falls of denial, self pity, anger, ignorance, discrimination, and our sometimes shaken faith. We have had to come to terms with the challenges we face. After all, what other choice did we have?

We hope you won't judge us too harshly if we stumble, if you get a glimpse of a short lived pity party, or if our grief occasionally slips out of our eyes and down our face. If we perceive things differently than you do, it is because our eyes that have seen things we didn't want to, our ears have heard the most difficult of news, our hearts have ached over things we could not change, our faith has been painfully stretched, and our feet have had to walk the extra mile. Those experiences tend to change ones perspective.

You think we are brave. We feel terrified. You think we are strong. We feel weak. You think we are tireless. We push ourselves beyond exhaustion. You wonder how do we do it. We are not always sure we can. We just do what anyone would do, the best we can. We want you to understand, for the most part, we are no different from you. We are exactly who you would be, if only you walked in our shoes. We would ask that you not judge us too harshly, because we are the same as you, only we've been asked to walk a different path.





To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents:

"Loving a Miracle - Special Parents Supporting Each Other."
This is the original support group, and all content is open to the general public.
https://www.facebook.com/#!/groups/lovingamiracleismoving/

There is a closed group, for those of you who would like to post things outside of the view of the general public:
"Loving a Miracle - The Special Parent's Safe Zone."
https://www.facebook.com/#!/groups/lovingamiraclethesafezone/

There is also a public PAGE.  This is where I post information and links that I think are helpful to special needs parents.
https://www.facebook.com/lovingamiracle

Permission to repost/reprint: If you would like to obtain permission to repost or reprint this post, please send me an email to kristinablizzard@yahoo.com. Thank you.

- Kristina Smith Blizzard



Friday, August 12, 2011

Miscarriage 101

This is not the post I had planned to publish today, but that one can wait. After receiving a message from a friend about what she could, or should do for a family member who has just lost her baby at 25 weeks gestation, I decided to post this for her benefit. It is something I have been kicking around for a long time. I hope it will get to others who need to hear this as well.

When people die, we have a culturally agreed upon set of rituals we perform. There is the shock of the loss, but there is also a rhythm to what takes place next. There are arrangements to be made, a funeral, and a wake to hold. Everyone brings food. For the most part, people know their roles. Almost everyone has some idea of what they should, & should not say to the bereaved. It is understood that the grieving process takes time, in all likelihood, several years. Everyone understands that the person who has passed away had intrinsic value, and is completely irreplaceable.

I am not sure why, but somehow, the above doesn't seem to be equally applied when a baby is lost to miscarriage. Much of what I am about to say applies to stillbirths, and infant loss too.


Because I have personally experienced 10 miscarriages, as well as the loss of my daughter's twin early in my last pregnancy, I count myself as a pseudo-expert on the subject of miscarriage. The following is what I want others to understand about the subject:

I think unless you have been through it yourself, the pain and grief of having a miscarriage is difficult to truly appreciate. I know I was sad for my sister when it happened to her, but back then, I honestly couldn't have guessed the depth of that grief, or how long it would last, that is until I experienced it myself. It is amazing how much you can love a baby you never got to hold, and miss a baby you never got to see.


I have repeatedly found that people do not know how to appropriately respond when someone has a miscarriage. The ultrasound tech, who informed us of the loss of our first baby, was just the first of many people who have proven to me there is a need for some education on this topic. She was tactless, and almost flip about the fact that my baby had no heartbeat. She never said she was sorry for our loss. She saw nothing wrong with dropping that bomb on us, then immediately asking us to go sit in the waiting room, while we waited to speak to the doctor, a waiting room full of very obviously pregnant women. I sat there devastated by our loss, struggling with everything in me to hold it together. I didn't look at my husband. I knew if I saw the hurt and concern in his eyes, I'd lose it right there. Then, one of the ladies sitting close by said her baby had the hiccups, and asked the person sitting next to her if she wanted to feel her belly. At that point, I lost the battle to maintain my composure, and I demanded they find some where else for us to wait.

On behalf of all grieving mothers like myself, let me explain a few things you might not otherwise know, or understand...

What NOT to Say When Someone Suffers a Miscarriage:

Much more often than you might guess, well meaning people say things after a miscarriage that are less than helpful. Over the years, it has happened to me many times, which leads me to the belief that some education is in order. So to that end, in my opinion, the following things should NOT be said:

1.) It Was God's Will.

My response to that is: "So wait, you think God did this to me on purpose?" Wow. That thought is not at all comforting, quite the opposite in fact! You might personally believe that it was God's will, but trust me, and keep that comment to yourself. It is not helpful, or conducive of the healing that needs to take place. Religious beliefs can certainly differ, but take a moment and ask yourself, how close do you think I can feel to a God who would see fit to torture me like that? Personally, I chose to believe good things come from God, bad things come from Satan, that God grieves my loss with me, & holds the babies I have lost in his arms.

2.) It is for the best.

I find no comfort in that statement either. Believe me, to the grieving parents, it does not feel like it what has happened is for the best, and even if it was, how in the world could you know that?

3.) There Will Be Other Babies.

Let me be very clear here, having another baby will, in no way, negate the loss. You can not replace the baby that was lost, anymore than you can replace any other human being. How would a new widow feel if you said, "Honey, you"ll have other husbands."

You also should not say there will be other babies, because no one can know that for certain.

4.) I know how you feel.

Unless you have personally been through it, you should never presume to know what you simply can not.

5.) Did you drink caffeine/smoke/or have a glass of wine? (Or other similar questions)

Of course, I did not, but even if a mother did all of the above, this question comes off as a thinly veiled accusation. Even if the mother is guilty of all of those things, trust me when I say the punishment far outweighs the crime.

So, What You SHOULD Do When Someone You Know Has a Miscarriage?

Most of all, treat the parents with understanding, as you would with any other death in the family. Try to take over some routine tasks, if you can. Take them dinner, walk the dog, offer to babysit their other kids, etc.

You need to understand that the crisis lasts a lot longer for the parents, particularly the mother, than for the rest of the world. Grieving is not a linear process. Some days will be better than others, and sometimes months, or even years later, the grief can be stirred up all over again. When, where, and what will stir it up is not easy to predict, and sometimes impossible to control. You can't avoid obviously pregnant women forever, right? 

Try to understand if, even years after a miscarriage, things like being around pregnant women, holding a baby, or attending a baby shower are very difficult, and sometimes avoided. Try not to be offended, or take it personally. It is not about you. I can tell you that the air of giddy expectation at a baby shower is still very hard for me to take, even now. 

There are differences in how each of us grieve. Men and women grieve differently. The hormone shifts taking place in the mother after a miscarriage should be taken into consideration, and allowances be made for that. Those hormonal shifts can be brutal, and tend to amp up an already highly emotional state. Men can seem less affected, which can cause the mother to be angry and resentful. I think miscarriage is different for men, in part, because they don't experience the pregnancy hormones, morning sickness etc. The baby may not have seemed as real to them yet.

Other people often seem to be very uncomfortable talking about a miscarriage. You should not be afraid to ask the parents how they are coping with the loss. It is not like you bringing it up will be what reminds them, trust me they are thinking about their loss anyway. Give them permission to talk about it. Tell them you are sorry for their loss, and that you are there for them if they need to talk. (I actually had someone tell me they wished I wouldn't talk about my losses, because it made THEM uncomfortable. Grr...even more annoying, is that I was in the middle of answering a direct question someone else had asked me, and she had butted into the middle of our conversation.)

One of the most painful parts of a miscarriage is that you have lost this precious, irreplaceable baby, and the world just keeps on turning. The rest of the world goes right on, like nothing ever happened. There is nothing left to mark this passing, no tomb stone, not a single trace of evidence the baby ever existed. If you are lucky, you may have a few fuzzy ultrasound pictures, and that's all that is left of the dreams you had for your child.

A very nice thing you can do is offer to help the parents find a way to mark this passing. You could plant a tree, release balloons, buy a special Christmas tree ornament, what ever you like, just let them know you understand something precious was lost, that it was something worth remembering, and honoring in some way. For some people the date of the loss, and the original due date are very significant. Write them down on your calendar, and call or send a card on those dates. If the child was given a name, please remember the child's name, and use it when you speak about his/her loss.  


If you have personally suffered a miscarriage, please know you are not alone. I think it would be very beneficial to find a way to connect with others who have been through the same experience. There are many online forums in which you can do that from the privacy of your home, and at a time convenient to you. It may help you feel less alone, and enable you to see that others share the same kind of feelings you are having. I particularly like the March of Dimes www.shareyourstory.org site. You can read other peoples stories, share a short story, or start your own blog. It is a wonderfully understanding and supportive group.

When you are ready to try to have another baby, I hope you find it encouraging that I did eventually manage to have two beautiful children of my own. Even with a history of recurrent miscarriage, a high percentage of women will go on to deliver healthy babies. There is hope, and the pain is worth it.

I hope this helps give you some insight into dealing with miscarriages.

Tuesday, August 9, 2011

Walking in the Rain

It is time for the school system itself to re-evaluate my son, to determine his level of need for services. They want to get this done very early in the school year, since his IEP (Individualized Education Plan) is due soon. They mailed me some paperwork that his Pediatrician needs to fill out prior to the start of the school year. A few weeks ago, we also had a multi-disciplinary evaluation done at the Weisskopf Child Evaluation center. This evaluation is was done outside of the school system, at my request. They formally diagnosed my son with high functioning autism. As soon as I had the written report from Weisskopf, I stopped by the school and dropped off a copy. At the same time, I left a message asking if, in light of his new diagnosis, we would need to take different paperwork to the doctor.

That was two weeks ago, and I haven't heard anything back from them yet. Since school starts here August 15th, I need the papers for the doctor to sign pretty much now, which is why I stopped by his school on the way home today.

As I got out of my vehicle, I was wondering if I could get the papers I needed. I was thinking about whether or not I could get my son into the doctor's office before school starts. I was thinking about our upcoming IEP meeting. Will his new diagnosis help me get him the help he needs?


What I was NOT thinking was that I might have missed when I tossed my keys at my open purse. I did not notice they were on the floor board as the locked door swung shut.

Clueless, I went into the school, and soon found that they did not have the papers I needed. The only person who can answer my questions won't be back until tomorrow. I was told to give her a call then.

Already a little annoyed, I walked out to the car & realized my keys were locked inside. I called my husband. Unfortunately, it turns out he was 35 miles away, and unable to rescue me. Now, I COULD have made a call & paid someone to let me in my car. I COULD have done that, but I decided it would take less time to walk the two miles home, than it would probably take for them to come let me in my car anyway. I knew my husband would be home in a matter of hours & then he could let me back in the car. I decided I could use the exercise, and I'd save my $60.00 for something else. This plan sounded easy and reasonable to me at the time. The kids were at home with the babysitter, or I would not have even considered walking. My husband was not at all fond of the idea of me walking home, but I didn't let him talk me out of it.

As I started walking toward home, I thought to myself, "As humid as it is, I'm probably going to need a shower by the time I get home." A quarter mile into my walk, I felt a single drop of rain, then another. The sky was fairly blue and clear, but there were a couple of darker clouds above me, just my luck. "Hum." I thought, "I might not have to wait until I get home for that shower." In another few minutes, the skies darkened considerably, and it started to rain. I just looked up at the sky and said, "Seriously?!" half laughing at myself stubbornly walking in the rain. There was no one to blame but myself. I pushed my now completely unnecessary sunglasses onto the top of my head, using them to hold my dripping bangs out of my face. I was reminded of a recent conversation where I was attempting to explain the concept of unintended consequences to my son. I smiled, realizing this situation would have made a good example.



I could have gotten angry. I could have fumed, and stomped my feet all the way home. After all, who would have blamed me? But I chose not to. Instead, I thought about the feel of the warm rain on my skin, and took the time to notice the pleasant smell of the rain as it cooled the pavement.

These things reminded me of another summer day, many years ago when I was just one of several small children out playing in my front yard, in the rain. We made a huge mess of ourselves, and the lawn. We made a game of running and siding in the puddles in the yard. It was great fun. I remembered the feel of the warm mud between my toes, and the thrill of sliding in the muddy puddles. We literally had to be hosed off before we could go inside. I remembered what it felt like a lifetime ago, to be that young and carefree. 

I waved off a man in a black car who stopped to offer me a ride. Forgetting the fact that I had no idea who he was, I was already half way home, and too wet to care about a ride at that point. My tennis shoes were so wet that they began to make funny squishing sounds as I walked.

A few moments later, what had been a gentle rain was no longer so gentle, and the wind started to kick up. As I walked along a stretch of road with no sidewalk, the waist high weeds made walking in the grass impossible. The wind blew the grass onto my bare legs and arms, and it left grass seed every where it touched me. It was raining hard enough now that the seeds washed right off, and I had to laugh because I knew what a sight I was out walking in that weather.

A lady in an SUV stopped and ordered me into her vehicle. I told her, "No. I am already soaking wet, and almost home anyway. I wouldn't want to get your seat wet." She tried to insist, then seeing that wasn't going to work, she offered me her umbrella. I said, "No, really. I am so wet, it doesn't really matter now." I am sure she thought I was insane. She tossed the umbrella at me, and drove off. I picked up the umbrella, opened it, and continued walking. Several times the wind turned the umbrella inside out, and I laughed at the ridiculousness of using it when I was already soaked to the bone.

A few moments later, and there was lightning, quite a bit of lightning. I looked up toward the heavens and said, "Really?! ...Okay. Fine, but let's not electrocute me. Alright?" I was hoping the donated umbrella wouldn't make a good lightning rod. Despite a little fear of being struck, I noticed how beautiful the lightning was. I marveled at it's raw power, when even from that distance, I could feel the thunder it made vibrate in my lungs.

The ugliest part of the weather didn't last very long. As the wind and rain lightened up, I started to hear water rushing along the side of the road. In another minute, I was very surprised to find myself looking at a waterfall. It was running fast from all the rain. The sound was so soothing, and the view was so nice, I stopped to really look at it. I decided my walk had been worth it after all. Putting my phone at some risk, I pulled it out & took a couple of pictures.

These are the two pictures I took.


By the time I walked up my driveway, the rain had nearly stopped. My son took one look at me and said, "What happened?!" I said, "I took a walk in the rain." He accepted that explanation with no reservations. We laughed at the squishy sounds my tennis shoes made, and all was right in the world.

I am fond of saying, "When the only choice you have in a situation is the attitude you take about it, you need to make that one choice very carefully." I have faced enough major life altering events over which I had no control, that I can certainly put a little rain into it's proper perspective. After all, walking in the rain was nothing more than a minor inconvenience. I could have let it ruin my day, but instead I chose to notice the beauty along the way.

I have driven past that very spot hundreds of times. That waterfall has always been there, but I never had the slightest idea. Because I had never slowed down to look, I had always missed this very lovely thing just off the road, just out of sight. Seeing the waterfall was a reminder to me, that we will never see the silver lining if we don't bother to look for it.
________________________
To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents:

"Loving a Miracle - Special Parents Supporting Each Other."
This is the original support group, and all content is open to the general public.
https://www.facebook.com/#!/groups/lovingamiracleismoving/

There is a closed group, for those of you who would like to post things outside of the view of the general public:
"Loving a Miracle - The Special Parent's Safe Zone."
https://www.facebook.com/#!/groups/lovingamiraclethesafezone/

There is also a public PAGE.  This is where I post information and links that I think are helpful to special needs parents.
https://www.facebook.com/lovingamiracle

Permission to repost/reprint: If you would like to obtain permission to repost or reprint this post, please send me an email to kristinablizzard@yahoo.com. Thank you.

- Kristina Smith Blizzard



Saturday, August 6, 2011

In Case You Are Wondering Why...



I have a particularly ugly medical history when it comes to trying to have a baby. Simplifying a complex storyline down to just a paragraph: I had 5 miscarriages before I got pregnant with my son. Had to go on bed rest at 28 weeks, because we found out I was already dilated 3 centimeters. A couple of weeks before, I had failed to recognize that the severe lower back pain I had experienced all night at work was actually preterm labor. I knew something was wrong, but since all the pain was in my lower back, I just thought I hurt it repositioning my 300 pound sedated patient. I was hospitalized 3 times with preterm labor, before delivering my son by emergency C-section for fetal distress, just two weeks early. Being gluttons for punishment, we decided to try to give him a sibling, then I had 5 more miscarriages. Early in my last pregnancy, I lost my daughter's twin, then several weeks later went into preterm labor, and delivered my daughter 3 1/2 months early, at just 26 weeks gestation.

I thought you might be wondering why I would have so many miscarriages, and why all the preterm labor? The following is my best attempt at an explanation:

As it turns out, I have lots of risk factors. After the loss of our third baby, we did chromosomal testing on the baby, my husband, and myself, to see if there was some genetic reason that we couldn't have a successful pregnancy. Those tests came back fine, so no answers there.

We did a clotting profile on me. At that time I was unaware that when they do a regular clotting profile, they only check for the 5 most common clotting issues. That test came back showing that I have the MTHFR gene mutation.



This is a pretty common gene mutation. We all get two copies of this gene. If one is the mutated version, and one is the normal version, you are said to be heterozygous for that mutation. If you have two mutated copies then you are considered homozygous for that mutation. Having two bad copies is worse than having just one. I have just one bad copy. That in and of itself, is not so bad. I was told, "Usually, you would do okay with that." The gene involved helps create an enzyme that makes and circulates vitamins B6, B12 and the all important folate (folic acid). I was told to take extra of those vitamins on top of the prenatal vitamins I was already taking. Having this gene mutation makes one more prone to clotting, having strokes, blood clots in the lungs, and babies with neural tube defects, all kinds of fun stuff.

I also had a low level of the anticardiolipin antibody. Among other things, this abnormal antibody attacks a protein in the cell membranes of your heart muscle. That sounds bad doesn't it? It is one of the abnormal antibodies that you find in patients with Lupus. I don't have the other Lupus antibodies, and I don't meet the diagnostic criteria for Lupus. This antibody also makes you prone to clotting. I was sent to a Perinatologist, for one visit only, to discuss these findings. He decided he wasn't sure that these two things alone, were the cause of our miscarriages. He speculated that I might be clotting off my placentas. He told me to take a baby aspirin once a day, then sent me back to my regular OB.

I had another miscarriage, then started taking a whole aspirin a day.

I got pregnant with Logan, then started taking two whole aspirins a day.

We took a year off, after Logan was born, then started trying again. I had 4 more miscarriages, after each one, I would ask the OB, "Is there is anything else we should be doing? Is there anything else we should be testing for?" She would always say, "Just keep trying." Eventually, I called my OB, and told her I wanted to see a Perinatologist, she looked over my chart and realized I had never had a COMPLETE clotting profile. They don't do those lightly, because they are very very expensive. She said, "Let's run this test before you see the Perinatologist. He will want it." In retrospect, I think I should have asked to see the Perinatologist much sooner.

The complete clotting profile showed that I also have a PAI 1 gene mutation. This one is a little more serious than the MTHFR mutation. The PAI 1 gene mutation comes in 3 versions. I have the 4g/4g version. This gene mutation also makes me prone to clotting. It puts me at moderate risk of pretty much everything bad that can happen in pregnancy, fetal death, preterm labor, and an increased risk of my own death are among them.

These three things, the two gene mutations, and the abnormal antibody, along with my age, my gestational diabetes, (which converted to type 2 diabetes in Nov of 2008) all work against me. They think I was probably clotting off my placentas.

The first thing the Perinatologist did was put me on a blood thinning shot twice a day. Starting two days after I ovulated. I continued to give myself two shots a day, until I delivered Morgan.

So, I guess the moral of this story is that I should have been to see the Perinatologist sooner. He said even without the complete clotting profile results, that I should have been put on injectable blood thinners much sooner, just based on the number of miscarriages I had suffered. Hind sight is 20/20.

The fact that both of my kids also have an autism diagnosis is another issue entirely. How much of that is based in genetics, and how much is caused by various environmental conditions, or exposures like vaccines, is a subject of heated debate in many circles. It is my own feeling that both play a role. It doesn't make sense to me that we would have an epidemic of a purely genetic disorder, and I simply don't buy the idea that we are just diagnosing it more often. I believe the rate of occurrence is increasing at an alarming rate. I think that in all likelihood, we will eventually find that there are certain genes which predispose someone to autism, and that those genes are interacting in some way with something in the environment. I hope we figure it out soon, because the cost in terms of affected lives is staggering.

The above is the "why" behind what happened to me, at least in physical, or medical terms. The "why" in terms of religion, spirituality, or fate, is something I am still getting my arms around. I may tackle that topic in another post some day.