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

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.

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

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.