You Are Not Alone, an Open Letter to New Special Needs Parents

Life has just thrown you a curveball. You probably weren't expecting it, and you might feel like you have taken a hit full in the face, or the gut. You probably feel stunned. Maybe you feel like you can't catch your breath. You are not alone.

 

Your plans and expectations for the future need painful revision. You have no idea what to do now. Everything seems overwhelming, and you don't know where to turn. You are not alone.

 

You don't feel ready for this. You question your ability to handle it. Somewhere, deep down inside, you harbor a fear. You question yourself, "Can I be the kind of parent my child needs?" You are not alone.

 

You can't yet imagine adjusting to this "new normal". What does this mean for your future, and your child's? You worry about what your child's life will look like. The unknown looms large before you. You are not alone.

 

You might discover that your family and friends find it difficult to relate to you. Your challenges, struggles, and fears may be hard for them to fathom, even if they are trying. They may have trouble understanding what you are dealing with, and what lies ahead of you. They may unknowingly say all the wrong things. You might find that your old friends simply no longer fit. You may feel lonely and isolated. You are not alone.

 

It will take some time before you feel like you have your feet back under you. I won't lie to you, the rough patches will suck, but they will also be times of great personal growth. If you never had much faith, you may be driven to seek it now. If you already had faith, it may be shaken. You may question everything you ever thought you knew about God, and how the world works. You are not alone.

 

The days, months, and years ahead will be challenging. Please know, almost no one feels prepared for this. Rest assured, you will grow into the role that has been thrust upon you. You will become the parent your child needs. You can do this. You are not alone.

Most special needs parents will experience fair amount of grief, both in the beginning, and sporadically throughout the years. Grieving the loss of "normal" does not mean you do not love and accept your child as they are.  It does not mean you are an awful parent. It means you are human, and that you have lost something significant. It means that you are trying to come to terms with the gap between what is, and what you wished for. You may find over the years that certain things will trigger a wave of grief. It may happen when something brings in to sharp focus the difference between your child and their "typically developing" peers. It may happen when you witness others treating your child differently. Grieving over these things is not abnormal. You are not alone.

 

You will need support, so the first step on this new journey should be toward that support. Set aside any shyness, or stoic pride you may have, and make a conscientious effort to make connections with others who share a similar journey. Understand that support groups are like people; they each have their own personality. Keep looking until you find one that fits you. There are lots of people in those groups who have already been where you are. They know things you need to know. They will understand your fears, and your struggles. They can help you. You will see that you are in good company, that your feelings and experiences are not abnormal. Your situation just happens to fall outside of most people's life experience. You will begin to understand what I mean when I say, "Together we are stronger." Connect with other special needs parents, and you will see it is true; you are not alone. 

 

In time, those sharp edges of newness will wear down. You will see past the labels, and the challenges, and find yourself marveling at the at the miracle that is your child. You will know your child is much more than the sum of his/her issues. Your child will teach you lessons in patience, persistence, and faith. You will find amazing blessings among the thorns. You will meet awe inspiring people along the way. Soon, you will discover you have developed your own wisdom to share. You will find yourself reaching out and helping others. You will become the life line you know they need, because you have been there yourself. When that happens, you will find yourself also telling new special needs parents that they are not alone. ;)

 

My youngest miracle. Sometimes I look at her
 and I think my heart could just burst with love and pride.

 

 

By Kristina Smith Blizzard

 

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.

Halloween Through Special Eyes...

It is that time of year again. I find myself standing in the Halloween isle in the store, shaking my head, mentally eliminating each of the costumes as unsuitable from my daughter, one by one. Her autism and sensory issues make costumes seem like torture devices to her. I try to push from my mind the thought of how cute some of these costumes would look on my beautiful daughter, if only...

If only...

I try not to let the sense of loss, or thoughts of what might of been take root. I push those thoughts away, and swallow hard trying to clear the lump in my throat. I turn to leave the isle.

I try hard not to look at the little girl standing in the isle with me, but I can't help myself. She is about my daughter's age. She holds up a Disney Princess dress, and looks up at her Mom with a hopeful expression. Her Mother nods in agreement, and the little girl beams with excitement as the dress is laid in their cart.

I swallow hard again, but the stubborn lump in my throat remains. I push my cart past the happy pair, and out of the Halloween section. My mind flashes through a series of mental images of what their Halloween will probably look like; her Mother helping her put on her dress, then fixing her hair, and the happy little princess posing for adorable pictures. Many other homes will feature very similar scenes this year. Lots of mothers and daughters will share these experiences, but some of us will not.

For most of us, Halloween was a big deal when we were kids. It was something we excitedly looked forward to. It was FUN. We have fond memories of dressing up in costumes and collecting tons of candy, then going home and eating more sugar than anyone should consume in a month. Most of us have cute pictures from those days, and remember them with great fondness.

When viewed through my daughter's eyes, Halloween isn't quite the same as it was for us. She doesn't understand the disruption in her routine. A costume is just a torture device as far as she is concerned. She has no idea why anyone would want to inflict that discomfort on her. Going out "Trick or Treating" is a baffling blur of confusing sights and sounds. She doesn't understand the whole concept of knocking on doors to ask for candy. She can't eat the candy anyway. The flashing decorations, and well meaning but scarily dressed people are an assault on her sensory system. The whole exercise is pointless, and uncomfortable for her.

Every year I have put her in a costume, and taken a few quick pictures before taking it right back off. Last year I tried to put a Cleopatra dress on her. I put a comfy pair of pants and a long sleeve shirt under it to try and make it more tolerable. I knew better than to attempt to put the head dress, or wrist cuff on her, so we didn't even take those out of the bag.

As you can see in the picture below, she did not care to wear it for more than a minute. We snapped a few pictures then took it off. I spent $20.00, and all I really managed to do was irritate her, and take a few pictures.

This year, I have finally realized I need to stop trying to push my idea of Halloween on my daughter. She is an amazing child, who deserves more from me than that. I have to accept her for who she is. I have to let go of who I wish she could be. It is a process. I am sure many special needs parents probably make this adjustment faster and better than I have, but alas I am human and clearly subject to flaws.

I read a post today in which a parent was saying we should set a mandatory age limit for "Trick or Treating", and refuse to give candy to kids who "can't even bother to put on a costume." It occurred to me the author doesn't understand the first thing about how Halloween might be a challenge for special needs kids. He has never looked at Halloween through my daughter's eyes.

Some special needs are invisible, and we need to keep that in mind. Should a 16 year old boy who functions on the level of a 5 year old be told that he can't go "Trick or Treating"? Or can we allow him that little piece of joy without passing judgement? Should we insist a child wear a costume to participate, even if doing so makes the whole event miserable for the child? Or can we just chose to skip the looks of disapproval, smile, and say "Happy Halloween"? Those questions are ones I hope you will consider.

The pictures posted in this blog post are meant to be shared. I do hope you will chose to share them, so others can get a glimpse of Halloween though special eyes.

Let's help make Halloween happy for every one.

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.

Blended Diet

Three years ago today...

There are certain dates in your life you will never forget. They are the major turning points in your life, the moments in time where things changed in some really significant way. September 7, 2009 is one of those dates for me. It was not the day I became a nurse. It was not my wedding day either. It was the day I took a leap of faith that literally changed our lives. It is the day we took our first step out of our feeding disorder hell, the day we ditched formula, and started my daughter on a blended diet.

Changing from formula to blended food may not sound all that momentous, but once you know how much it changed our lives for the better, you might understand why it is so significant to me.

Life On Formula: We were spending at least 6-8 hours a day pretty much force feeding my daughter. She had severe oral aversion, and was projectile vomiting 3-6 times everyday. She had very low volume tolerance, delayed gastric emptying, loose stools, reflux, and chronic gastritis (inflammation of the lining of the stomach). Her gastritis was uncontrolled even though she was on the maximum dosage of several medications. The inflammation was so severe, it caused 4 mild GI bleeds in the summer of 2009. My daughter existed solely on a diet of a few isolated highly allergenic proteins, corn syrup solids, safflower oil, and what amounts to a multivitamin, also known as canned commercial formula. My life had dissolved into a never ending and vicious cycle of pumping all the breast milk my body would produce, adding formula, force feeding my daughter, cleaning up vomit, then starting the cycle all over again. We weren't sleeping much because in order to get enough calories in her, she had to be fed late into the night. My daughter's weight was on track, but we were killing ourselves to do it. We weren't supported by her doctors. I repeatedly said I thought the formula was causing her vomiting. They disagreed. The only solution they suggested was to do a Nissen surgery and place a feeding tube. When we refused to do the surgery, they tried to coerce us into it, by saying they wouldn't write anymore prescriptions for her if I continued to refuse. (I fired them from the case instead.) After two and a half years of stuggling to feed our daughter, we were exhausted and miserable. Not to mention, it was horrible watching our daughter suffer like that day in and day out.

Life Off Formula: My daughter no longer has low volume tolerance, loose stools, reflux, vomiting, gastritis, or GI bleeds. Now that she is not being fed formula, which was literally making her sick, her oral aversion is gone.  Instead of pushing away her bottle, she asks for her bottle and is eager to eat. She can easily and independently feed herself. She is able to happily and comfortably meet her calorie and nutritional needs. An elimination diet proved she was intolerant to, among other things, dairy, corn, and sulfates, all of which are found in almost all commercial formulas. She takes a full blended diet in a bottle with a modified nipple. I cut the nipple hole bigger to accomodate the thickness of the blends. Instead of artificial garbage, she gets a wonderfully healthy diet full of fruits, vegetables, nuts, lean meats, and good fats. She eats better than any other child I know. Blended diet has made her healthier and much happier. She may always need a blended diet due to her brain bleed, and other medical issues, but she doesn't have to be trapped on formula ever again. Blended diet freed us from our feeding disorder hell. Because I know there are other kids, and other parents out there suffering in much the same way as we did, I am passsionate about sharing our journey with the world. Who knows, blended diet may just be the answer they are looking for as well.
You can read more about our feeding disorder journey here:

http://lovingamiracle.blogspot.com/2011/11/feeding-disorder-hell-our-narrow-escape.html

Blended diet has greatly improved my daughter's quality
of life. Seeing the difference blended diet can make first hand is
why I am so passionate about letting others know this it an option.

The rest of this post consists of more detailed information for anyone considering starting a blended diet:

Before starting my daughter on blended diet, we had occasionally tried adding baby foods to her formula, but there were never any improvements in her symptoms until we completely eliminated formula. Some people just don't get better until all formula is eliminated.

Once we dropped formula and started her on full blended diet, some improvements were almost immediate, and some occurred over a few weeks. It is important to understand it can take as long as one month for the GI tract to fully heal, so give it some time.

When my daughter was on formula, she could only drink one or two ounces of formula at a time. The first time blended diet was mentioned to me, I thought if I added fruits & vegetables, the calorie content of the blend would be so low, that there would be no way I could meet my daughter's calorie, and nutrition needs. Once I started blended diet, I quickly learned two things: First, food choices can drastically affect the calorie content your blends. You can easily make a blend that is 30 calories an ounce, which is what many formulas contain. Secondly, volume tolerance (how much volume one can tolerate for a meal) may go up if you can eliminate formula, which makes it much easier for you to meet your calorie/nutritional goals. My daughter polished off 4 ounces of blend (double her personal best on formula) with her first bottle of blended diet. Her volume tolerance continued to increase over time.

Switching to blended diet, eliminating formula, and the foods to which she is intolerant solved the majority of my daughter's feeding issues. We had tried many formulas, even the elemental ones like Elecare, and partially elemental ones like Peptamen Jr.& Vital Jr. None of them worked for us. My daughter is orally fed. She drank her first ounce of Elecare, and promptly went on a hunger strike, refusing to eat anything else for 24 hours. Although she couldn't really "talk" her response to Elecare was clear. She said, "No thanks. I'd rather die." I figured out much later, that she can't tolerate corn syrup solids, which is the main source of carbohydrates in nearly all formulas. By the way, Elecare is 53% corn syrup solids. Almost all commerical formulas are about 50% corn syrup solids. (Yuck!)

Despite the fact that many doctors either don't know, or won't admit it, many people can't tolerate formula, and will have bowel issues, oral aversion, reflux, vomiting, low volume tolerance, gastritis, skin problems, or some combination there of, as long as they are on any formula. It is not unheard of for someone to be unable to tolerate any formula, even the prescription elemental ones. It happens. I know several people like that. Dropping formula, sometimes has the added benefit of creating more interest in food orally. That interest can go a long way in helping resolve feeding issues.

Most people in the medical community are behind the curve on blended diet. It may seem like it, but feeding blended food through a G tube is not a new idea. It is what everyone with G tubes did before the invention of commercial formula. Once commerical formula was available, people were sold on the idea that it is as good as real food, sort of like they were sold on the idea that baby formula was as good for babies as breast milk. Now we all know better.

Try to keep in mind the G tube is just another route to the stomach. It doesn't, in any way, change what is needed once you get there. Think of the blender as doing the chewing, and the G tube as doing the swallowing. It really can be that simple. We should stop thinking of G tube feeding as a medical procedure, and realize it is just an alternative way of eating. I think in the years to come, the medical community will come around to the idea of  blended diet, but in the meantime, it is up to us to educate them.

I wish I could tell you what to expect from the medical people in your life, but the responses to blended diet vary widely. In case they are not supportive, let me arm you with the following:

-The GI tract is not a sterile environment. Your blends do not have to be sterile. The food typical people eat is not sterile. Using the same safe food handling procedures everyone uses is all that is required.

-We are talking about giving food not poison, act accordingly.

-Our bodies were designed by God, (or evolved over millions of years, if you prefer to think of it that way) to digest food, not formula. In either case, how arrogant is it to think we know more about what the body needs than God, or nature? Our bodies are meant to digest a wide variety of foods, not the same corn syrup laden milk protein all day, everyday.

-If you brought a typical child to the doctor, and said all he eats is a few cans of Pedisure a day, that would not be considered acceptable, so why is it okay for those who use G tubes to live on formula alone?

-There is just no substitute for the micro nutrients in real foods. Everyday we are learning more about the health benefits of certain foods, especially fruits and vegetables. Using formula alone, you are unfairly missing out on these benefits. Don't G tube fed people deserve real food too?

-If formula is really perfect nutrition, and better for you than real food, why isn't the doctor living on it himself?

-You have tried their way & for many of you, formula is not working.

Here are some tips on getting started:
If the person being fed is able to communicate, consider allowing them to participate in the chosing of what foods to blend, it will help them feel more involved. 

It helps if you can ask a dietitian to pretend you don't need a G tube & give you a list of what he/she would consider to be an acceptable diet, then work that diet into your blends.

If you are currently dealing with GI, or bowel issues on formula, I strongly suggest you insist on avoiding all the common food allergens in your blends, at least for a while. Skip wheat (gluten), dairy (whey or casine), soy, corn (or corn derivatives including corn syrup & corn starch, maltodextrin etc.), peanuts, tree nuts, fish, shell fish, and eggs. You absolutely can make a nutritionally balanced blend without any of those things. I have been doing it for years.

Why avoid allergens at first? If you start your blends with milk for instance, and you have an unknown milk allergy/intolerance, you may develop negative symptoms, and won't be able to tell if they are from the milk or blended diet.

If the GI symptoms go away you will know they were caused by something in the diet. Then you can add all the most common food allergens back into the diet very slowly, one at a time. Doing so allows you to identify any problem foods. It may take a while to work your way up to a good variety of foods, but it is well worth the effort. As we saw with my daughter, eliminating problem foods can really improve ones quality of life.

If you are dealing with reflux, vomiting, low volume tolerance, delayed gastric emptying or bowel issues, formula could be the cause. Unfortuneately, doctors often prescribe medicines to deal with these symptoms, rather than looking for the root cause. I believe they should be considering a change in diet as the first step. Blended diet often greatly improves, or resolves these issues.

My friend Eric, (a G tube user himself), told me formula feels like a brick just sitting in your stomach, and that blended real food just feels better.

Obviously, not everyone has trouble on formula, and I do admit to a personal bias against it, but please don't feel like I am making any judgment on you, if you chose to continue using formula. Only you can decided what works best for you. I have come to hate the stuff myself, because it has caused so much unnecessary suffering for my daughter, and many other people I know. Like many of the parents I have worked with, I only wish I known about blended diet sooner! I have seen first hand how much better things often get when formula is totally eliminated. Having said that, if you are not having issues on formula, by all means, feel free to use it.

If you are worried about how well real food will be tolerated, let me say, I personally would be more worried about the formula, than real food.

When first starting out, any foods that were tolerated well in the past, are fair game for adding to your blends. The limiting factor would be your blender. If you are using a typical blender, you will probably need to pre-cook things, blend, then run your blend through a sieve to catch the occasional lumps left by the blender, or you could use baby foods in making your blends instead.

Once you decide blended diet is for you, if you can manage it financially, you would be much better off using a Vita Mix or Blend Tec Blender. If you are in the US, the Vita Mix company will give you a nice discount, if you provide them with a letter of medical need from your doctor, or speech therapist. (Outside of the US policies vary, so start your inquiry by visiting their website, www.vitamix.com.)

To get the discount in the US, you can contact:
Sandy Ventimiglia
Customer Service Manager Vita-Mix Corporation
8615 Usher Rd.
Cleveland, OH 44138
1-800-848-2649 ext 2501
sventimiglia@vitamix.com

When I purchased mine, in Sept of 2009, it cost about $320.00 with shipping. I think the price varies a bit, depending on where you live. In my opinion, the Vita Mix is worth its weight in gold. It eliminates the need to strain blends, and means you can blend nearly anything. Their customer service is amazing. Once we damaged a part, and even though I told them it was totally our fault, they replaced the part free of charge, and expedited the shipping because they knew I use the blender to make blends to feed my daughter. They take great care of blended diet users. In case you are wondering, I do not have any affiliation with the Vita Mix company, other than I happily own and use one. :)

Some people have had success getting their insurance company to reimburse the cost of a blender used for preparing tube feeds, so that is worth a try. You have nothing to lose in asking. Some people have used their health savings accounts, or flexible spending accounts to pay for them too.

All that being said, you can make a nutritionally sound blend with a regular blender. It can be done. It is just a bit more work, and blended diet sometimes wears out the motor of a typical blender kind of quickly. I wore out a Magic Bullet in less than a month.

If you go to http://www.choosemyplate.gov/myplate/index.aspx you can get a run down of what your daily goals are for each food group. You plug in your choices for each food group and go.

There are many good online resources for figuring out the calorie and nutritional content of your foods. http://nutritiondata.self.com/ is one I like to use, but there are others.

A full blended diet may seem overwhelming to take on. Do it at your own pace. Some people tip toe in. Some people dive in. Do what you are most comfortable with. There is no right or wrong way to do blended diet, just your way, which you will develop over time.

If you make two days worth of blends at a time, it is less of a hassle. We do fine storing it in the refrigerator for up to 3 days. You could also make them up for the whole week, and freeze some of it, so none sits in the refrigerator for more than three days. Frozen blends will most likely thaw out with a grainy consistency, which does not hurt the blend. Just thaw it out, at least part way, then pop it back into the blender, it will smooth right back out. Freeze blends lying flat in a zip lock bag. Use the ones labled as a freezer bags, the regular ones often leak.

The time it takes to make your blends will go down, as you get more used to doing it.
If you are interested in learning more about blended diet here are a few valuable resources:

Facebook group Blenderized Food for Tubies:
http://m.facebook.com/pages/Blenderized-Food-For-Tubies/195156907193185?_rdr
I am one of the administrators of this group..

Blenderized Diet Forum:
www.blenderizeddiet.net

Blended Food Resource Group:
http://www.foodfortubies.com/

Here is some good blended diet information for beginners:
http://youstartwithatube.blogspot.com

There is a book available online "Complete Tubefeeding" which covers both G tubes, and blended diet:
https://www.createspace.com/3811540

There is also a Blenderized Diet Group on Yahoo:
http://health.groups.yahoo.com/group/Blenderized-Diet/

Well, I have given you a bit to "chew" on (pun intended). I hope you find some of it helpful. With the things I recommend, as with all things in life, take what you find useful, & forget the rest.

I wish you stamina for your journey.

Happy Blending,
Kristina Blizzard RN, BSN
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.

How do you make a platform swing?

*Disclaimer: I am not a professional platform swing manufacturer. I have not done studies to prove this design is safe. I am NOT suggesting you build one, or use one. I am just telling you how I made mine. If you chose to make one yourself, I am not liable for any damages or injuries sustained.

For those of you who innocently clicked on a link looking for nothing more than instructions on how I built my daughter's platform swing, you can skip the emotional story behind how I came to build a platform swing and start your reading at the first picture in this post.

For the rest of you my blog post starts here:

That it has taken me until March 12th to complete a blog post I started on December 26th is a pretty good indication of how busy and hectic my life has been. Sorry for the long delay.

For some special needs parents, it starts with the all too early first signs of Christmas. Instead of the warm joy of the season, in the pit of their stomachs forms a knot of dread. They don't WANT to dread Christmas, in fact they feel guilty about feeling that way. These seemingly out of place feelings can add to a sense of alienation many of them feel year round. Years of practice comes to bear, and they plant a smile on their face. They try hard to feel the excitement of the season. They try not to let their thoughts linger in that space between was is and what should be. Like many special needs parents, I've spent enough sleepless nights grieving that distance to know that thinking about what could have been can be very seductive. Chasing "if only" around your brain at 3 am can be very tempting, and circular. It is a little like running on a treadmill, no matter how long or hard you run, you end up right where you started, just more tired. "If only" thinking is an alluring thief that can steal a lot of your precious time and energy, if you let it.

You certainly don't need to have a special needs child in your life for the holidays to be difficult, but having a special needs child does tend to add a few more challenging elements to the mix. Aside from the usual family dynamics everyone has to navigate, there are also lots of judgement calls to make. Which, if any, invitations should you accept? Will your family/friend be understanding about your child's needs? Will they be offended if you decline, or have to leave too quickly? Just how do you tactfully say to someone that their house or event is just not well suited to your child's needs? Perhaps even worse, you may have already declined a few too many invitations, and your friends have moved on.

I have decided that the trick to being able to enjoy the season is by starting out with truly realistic expectations, not just of your child, but of the family, friends and acquaintances you will interact with.

Will someone get their feelings hurt when they discover that my nearly 5 year old daughter not only doesn't care to open their present, but also has no use for what they thoughtfully picked out? After all, what little girl doesn't like dolls?! Well mine, for one. I understand all too well the confusion and frustration that can create. Every year, it falls on my shoulders to figure out what gifts are going to be both enjoyed by her and financially feasible.

That task is what brought me to the place that is the source of my own Christmas dread: The toy isle. This Christmas, after as much denial and procrastination as the calender would allow, there I stood. I had spent three days talking myself into going. I told myself over and over again that I could do it. This year I would shop for Morgan's gifts without crying. This year I would find something that would make my daughter's face light up with excitement. As simple as those goals may seem, I had never managed to do either one before.

For those of you without developmentally delayed children, imagine for a moment what Christmas morning might feel like if your child had no interest in opening, much less playing with the things you bought. Would you feel like a failure? I certainly did, every year.

This Christmas was going to be different. I was determined, desperate even, to find one thing that would make my daughter smile. I found myself standing in the toy isle, with my confidence crumbling. Toys clearly labeled for Morgan's chronological age screamed at me, painfully demonstrating how very far she is from developmentally ready for those toys. It seems most of them are meant for pretend play, which for Morgan is likely years away, if it comes at all. Her sensory issues make the dress up clothes seem more like torture devices than play things. The toys she MIGHT be ready for are brightly labeled for much younger children. It seems she already owns nearly everything that is both developmentally appropriate and remotely in our budget. Bumping into those kinds of inescapable facts is how the toy isle manages to bring up so many painful feelings. It can stir up the grief, fear and pain that sometimes comes with being a special needs parent. Everything we have lost comes into sharp focus. Buying gifts for your child is supposed to be fun, right? The lump in my throat told me I needed to walk away quickly, or risk embarrassing myself with the tears I knew would come next. I walked out of the store feeling defeated, no closer to knowing what on earth to buy for Morgan than when I started. I was glad I had come alone. I was frustrated and angry at myself for getting emotional again this year. I sat alone in the car and cried, proving once more that the best predictor of future behavior is past behavior.

Morgan is almost 5 years old. I should I be past this by now, right? The answer is no. For special needs parents, the grief often comes in unpredictable waves over the years. After a quick poll of the other special needs parents I know, I have also discovered that crying in the toy isle is not nearly as uncommon as most people would think. Sadly, I am not alone in this struggle.

Days went past. Christmas loomed before me, and family members, who were as baffled as I was, began to ask me what they should buy for Morgan, AS IF I WOULD KNOW! This year, I just told them to contribute to the "buy Morgan an iPad fund."(which stands at $120.00 now.)

Mercifully, inspiration finally came while I was observing one of Morgan's Occupational Therapy sessions. Morgan smiled & said, "I want SWING!" She puts a heavy emphasis on the "g," so it comes out "swin-gah." I looked at the platform swing & thought, "She would love to have one of those at home!"

A quick Internet search later, I found that the platform swings listed in my price range didn't include everything I wanted. The descriptions were often hard to interpret, & left me unsure of exactly what I would be getting. Thanks to my procrastination, getting it to my house in time for Christmas was also questionable.



This is the one I made.

Since I am pretty handy, it occurred to me I could just make one myself. I snapped a few pictures of how the one she was using during OT was constructed. One trip to the home improvement store (Home Depot) & I had everything I needed.

To skip reading the details of how it was made, start reading again after the number 19 below.

I bought:
1 3/4" 2X2 foot piece of plywood. Which was pre-sanded on one side.
1 21/32" X 12" X 36" board (which I had Home Depot cut into 3 equal pieces for me.)
1 5/16"X4" stainless steel screw eye bolt
1 4 1/8"X1" snap hook swivel eye bolt
1 porch swing spring
2 3/16" quick links
1 5/16"X1 3/8"X2 1/2" stainless steel U bolt
26 feet of 5/8" thick polypropylene rope (black so as not to show so much dirt)
2 1/2" cut metal washers
1 can of clear polyurethane

*Disclaimer: I am not a professional platform swing manufacturer. I have not done studies to prove this design is safe. I am NOT suggesting you build one, or use one. I am just telling you how I made mine. If you chose to make one, I am not liable for any damages or injuries sustained.

Generally speaking, home improvement stores will cut wood to size for you for free. I had Home Depot cut the 21/32" X 12" X 36" board into 3 equal pieces. (I will only need one piece of this, & will save the remaining two pieces of this board for another project.)

I already had a few things at home that I needed:
A pencil
A cup
A hack saw
An electric sander (I could have done this by hand but it would have taken longer.)
Sand paper both coarse & fine
A C clamp or two
A damp lint free rag
Four 1/2 inch dowel rods (optional but will save you drying time.)

1.) I laid the 3/4 inch plywood on my work surface. I used a glass as the pattern and marked with the pencil the wood I wanted to remove to make the corners of the plywood rounded.

2.) I measured and marked the layout for the holes the ropes would go through at 1 1/2 inches from the edge in each corner of both boards.

3.) I measured to find the center of the smaller board & marked the layout for where the U bolt would go.

4.) Using the c clamp(s) I secured the board to the work surface.

5.) Using the hack saw, I cut away the corners of the plywood, leaving the corners roughly rounded.

6.) Making sure the board was still secured to the work surface with the c clamp(s). I used a 1/2 inch drill bit to drill the holes the ropes will go through on all four corners of both boards, and using a 5/16" drill bit I drilled the holes for the U bolt.

7.) Using the coarse sand paper, I smoothed all the edges of the board, and the edges of the holes the ropes will go through.

8.) Using a fine finishing grit sand paper I sanded all surfaces of the boards.

9.) I wiped the boards down with a damp lint free rag to remove any saw dust.

10.) Using two dowel rods per board, I suspended the boards between two chair backs on the dowel rods, by placing the dowel rods through two adjacent holes which I had drilled. This allowed me to coat the entire board back and front at the same time, without waiting for the first side to dry. I followed the manufacturers instructions for the polyurethane, and applied 3 light coats of polyurethane on all surfaces of the boards.

11.) I allowed the boards to dry thoroughly.

12.) Once they were dry, I attached the U bolt to the center of the smaller board.

13.) The assembly of the remaining hardware was very easy. Here is a picture of how it is assembled:

14.) To make it easier to thread the polypropylene rope through the holes in the boards, I used duck tape to wrap the one end of the rope like this:

15.) I slipped one 1/2" cut metal washer onto the other end of the rope, and tied the end in a knot. I threaded the rope thorough the holes in the boards. I started at the bottom of the larger board, up through the corresponding hole in the smaller board. Then I threaded it through the quick link that connects the porch swing spring and the U bolt. Then threaded the rope back down through the hole diagonal from the one I was in the smaller board down to the corresponding hole in the larger board. Staying under the larger board, I came back up the adjacent hole in the larger board and threaded up to the corresponding hole in the smaller board. Then threaded the rope through the same quick link as before, then back down through the remaining holes in the two boards. Once through the last hole, I slipped on the remaining 1/2" cut metal washer, and tied the end of the rope in a knot. After the rope was threaded through the boards, this is what it looked like on the bottom of the larger board:

16.) I installed the 5/16"X4" stainless steel screw eye bolt. It MUST be installed into a substantial board, or it will come loose and risk injuring the user when the whole thing falls. This is a potential risk in any hanging equipment.

17.) I hung the platform swing up and adjusted the rope so that the swing hung level, and about 8 inches off the floor. I ended up trimming about a foot off the rope to get it to the height I wanted off the floor. The exact length of rope one would need would vary depending on the distance from eye bolt to the floor.

18.) Being very careful not to burn myself, I took a lighter and burned the ends of the rope just enough to melt (and fuse) the ends together so they wouldn't unravel. 

19.) When estimating the amount of weight the swing can safely handle, you have to go by the weakest link in the swing. Each piece of hardware should be rated for a specific weight. The weakest link is the maximum weight that should be allowed on the swing.

When it was finished, I stood back and decided it didn't look half bad. Not including shopping and drying time, I think it took me about 4 hours & a little less than $100.00 US to complete it. I sat on it just once to make sure it wouldn't come down easily, then said a little prayer that on Christmas morning, Morgan would be happy with her swing.

Based on her reaction, I think I FINALLY got Christmas right. The smile on her face was hands down the best Christmas present I've ever gotten. I can not begin to tell you how happy that made me.

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

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:

https://www.facebook.com/home.php?ref=hp#!/groups/lovingamiracleismoving/doc/10150277569134349/

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

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

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.

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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.
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