Just like us

As a special needs parent, I find many people look at the extra difficulties I deal with, and they want to put me on a different level than they are. I frequently hear phrases like, “you are so strong,” “I don’t know how you do it,” and “only special people are sent they special kids.” I feel I’m always telling people that I’m no stronger, no more capable than they are. In fact, I often feel like I’m less capable! I was not gifted with special abilities when I became a special needs parent. I am a mom, like any other mom. Struggling along with limited resources, trying to give my kids a good life- the same things most American mothers are doing. I also don’t want to downplay the struggles of parenting children with special needs. There are added challenges. It does take more than “normal” parenting. But we are all trying to do the same things. And none of us can do it alone.

In that spirit, here is a list of 7 ways special needs parents are just like all you other parents out there, and 7 ways that our lives are different:

1. We love our kids.
   This just seems obvious. Of course we love our kids, just like you love yours.
2. We want our kids to succeed. One of the things every good parent tries to do is give our kids the tools to succeed in life. We all want to see our children grow to be happy and productive.
3. We celebrate milestones. Baby’s first smile, the first tooth, rolling over for the first time, and those first steps are big moments in parents’ and children’s lives.
4. Sometimes we fail. Parenting is tough. I don’t know a single parent who hasn’t done something they wish they could take back or amend.
5. We need a tribe. I fully believe that parenting is not meant to be done alone, or even just as a couple. It can feel very lonely at times and having people we can ask advice or vent our frustrations to is so important.
6. We need a break sometimes. We all love our kids. And we all sometimes need a break that doesn’t involve the bathroom.
7. We all have strengths and weaknesses. I’m not a great housekeeper. I’m also not great at entertaining my kids. But I’m a decent cook, and I love exploring new ideas with my kids. I have exceptionally organized friends who don’t cook. I have friends who make the most pinterest-worthy lunches I’ve seen. We all have that one friend whose house is always immaculate. Maybe that’s you! Everyone does something well. No one does everything perfectly.

… but not at all.

1. We mourn our kids. Some of our kids have very short life expectancies. Even when our kids are relatively healthy, there is something we know they are extremely unlikely to experience, and that breaks our hearts.
2. Success looks very different when you have a child with special needs. Sometimes just making it through the day is more important than what their grades look like. Some of us know our child will never have an amazing job, home, and family of their own. Some of us realize that a great college is never going to happen. Even for those who expect our children to be mostly independent, know that sometimes just getting into the building for school or work is a great success.
3. Special needs parents celebrate milestones also, but it’s a little different when that milestone is something that you never thought would happen. When a child sits unassisted, defying doctor’s predictions that he would never be able to do such a thing, it is the highest of parenting highs! We may go to hours of therapy to see our three year old roll over. When our teenager finally learns to tie his shoes, or learns to greet people appropriately for the first time, it’s a really big deal! We wait longer to see our children achieve the milestones that most parents take for granted.
4. Special needs parenting requires letting go of a lot of expectations. We learn quickly that we don’t have the time and energy to do all the things we used to do. They are superseded by appointments, diet restrictions, equipment malfunctions, picking up prescriptions, ordering supplies, calling the doctor, feedings, medical procedures, and dramatic meltdowns. The more complex our child’s disability, the more it rules our lives.
5. It’s really hard to find parents who understand what we are talking about. Other parents talk about potty training, bottle vs breast feeding, or their child’s latest achievement. We talk about trachs and g-tubes, handicap accessibility or lack there of, or what our Autistic child has been licking lately.  We have our own language, and we are constantly translating it into normal parent speak so that we can communicate with the parents around us. We have acronyms for various diagnosis and treatments. Always explaining is hard, but what is harder is being on the sidelines of a group and being painfully aware that no one in that group understands the lingo that describes your day to day life.
6. We have more stress and fewer breaks. This is probably where the, “you’re so strong” comments come from. Most people recognize that this is harder than what the average parent experiences. But I’ve always felt that calling us strong ignores the fact that we struggle to keep going on many days. All parents experience fatigue. Many special needs parents live with it everyday. We are not super human. We do not suddenly become the energizer bunny when we are handed a life altering diagnosis. And because it is often more challenging to find help with our child, we have fewer opportunities to take care of ourselves.
7. Our lows are lower, and our highs are higher. We live with constant worry about our child’s health and wellbeing. Whether it’s the next cold landing our child in the hospital, or the next meltdown becoming destructive, we know that our day, and sometimes our whole life, could be turned upside down at any time. However, when things go right, when therapies are working, when progress is made, the feeling that comes with that is incredible! They joy of helping your child experience something that no one ever thought they would, is amazing! Indescribable, really.

Really, those of us with special needs kids are not so different from those with “normal” kids. We still have a lot of the same struggles, hopes, and desires. Special needs parents just do what everyone else does under different circumstances. We take our kids to the doctor when they need it, they just need it more. We feed them, we just feed them differently. We make sure they are educated appropriately, even though it may mean meetings and phone calls and emails. We love them. We celebrate their victories. We get worn down. We keep going anyway. Just like you, but with all the things you think you can’t handle. Those of us in this situation know you are just like us. And because you are like us, because you want the same things for your kids that we want for ours, you’d do it too. You’d find a way. You’d be strong. You’d be just like us.

Hero Wave

I heard a story today about a then-six-year-old boy who wrote a book and sold it to raise funds to research his friend’s rare medical disorder. I sat in the car, listening to the story on my radio, and wept. I wept because of the incredible thing that boy did for his friend. I wept at the simplicity and beauty of his dreams and goals and for the heart of a young boy. And I wept because I’ve been on the receiving end of people’s exceptional generosity.

Here’s the thing.

So many people will hear that story, and feel like they can’t possibly give what that boy gave to his friend. As humans, we often look first at our weaknesses and what we can’t do. But that boy didn’t do that by himself. He had an idea, and he acted on it, but his idea only worked if thousands of individuals reached into their pockets, purses, and wallets and openly gave whatever small amount they could. That fundraiser has reached over a million dollars for a disorder that most people don’t know exists. There was virtually no funding for it before, and now, because thousands of everyday people chose to do one small thing, there is more than a million dollars to fund research where there was nothing before.

Do one small thing, and make a big difference.

My own family recently benefited from a fundraiser. Ours was meager compared to the above example, but it felt no less incredible at the time. I have a disabled son. He is paralyzed from the chest down. He has a tracheostomy tube to help him breath, and he gets most of his nutrition through a g-tube. We don’t travel with him unless we have to. Travel is difficult, and in addition, it’s expensive. Out of state travel has the added challenge of losing our usual night time nursing care. Insurance and other medical laws make it impossible for us to get a nurse in another state. My husband’s family lives in California. We live in Utah. We hadn’t taken him to visit since he became paralyzed because of all the challenges. Then my mother-in-law was diagnosed with cancer. After treatments, she had a couple clear scans, and then the cancer came back. It returned hard and fast, covering her liver and advancing on her lungs. Her prognosis became terminal, and it suddenly became essential for us to find a way to take our whole family to visit.

This is where our heroes stepped in.

A fundraiser was started, and before I even had a chance to share it on my own facebook page, hundreds of dollars were pouring in. Within 8 hours, the goal had been reached. And then it was surpassed. I don’t know who many of those donors were, but they are my heroes. They did something for us that we could not do for ourselves. We had anonymous donations for hundreds of dollars. Some dear friends who have their own challenges gave us $5, $10, or $25. Every donation filled my heart with gratitude. I still feel overwhelmed by the number of people who helped us reach that goal. They are our heroes.

We recently went on our trip. In addition to financial help, people volunteered to help with nursing. Some stayed with our son for only three hours. One friend stayed with him for three nights. A neighbor gave us a place to stay, and another generous soul gave us his airline points. Family members also helped coordinate all of the numerous details. I have no idea how many people touched our lives and made that trip a reality. There is no possible way I could count them. What I do know is that we couldn’t have done that trip without each of them. It was their combined kindness that gave us a gift of immeasurable value.

Be heroes together.

When you participate in something like this, new realities come to life. One person raising their arms in a stadium, means nothing. When everyone raises their arms in rhythm with those around them, it creates a wave. No one can be a wave alone. Without each other, our individual efforts can seem meaningless. However, when we raise our arms together, when we allow ourselves to be swept into a movement, we are powerful. We can be heroes together. Be heroes together. Be part of someone's Hero Wave.

Help make a difference. There's always someone with a Go-Fund-Me somewhere. Check out your friend's facebook pages. If they aren't struggleing, they probably know someone who is. Look for local charities that help in your community. If you don't have money, look for oportunities to donate your time. Look for a pregnancy resource center, a shelter, or food bank where you can volunteer. And if you can't find one that you like, here are some charities that I'm partial to.

Make-A-Wish Foundation-Funds special "wishes" for children with life threatening illnesses.

St Baldrick's Foundation-Funds go to children's cancer research.

Children's Miracle Network-Funds children's hospitals

St Jude's-Children's research hospital.

Ronald McDonald House Charities-They give families a place to stay while their child is in the hospital. 

Big Brothers Big Sisters-Donate or Mentor a child.

There are many more wonderful causes out there. Tell me your favorite ways to give!

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A Special Gift

Earlier this month was the birthday of a very special boy. His name is Riley. Riley is our cousin's son who died unexpectedly after only 4 months with his mom and dad. This year, to celebrate his birthday, his mom asked friends and family to remember him by giving the gift of service to someone around us.

I also lost a baby just the year before Riley's death. We had been given a box of things from the hospital to remember our sweet angel. One of the things in that box was a tiny, crocheted, pink blanket. That was so special to us. It is one of the few things we have to remember her presence here.

That blanket was the first thing that came to my mind when Riley's mom asked us to give something in Riley's memory. So, I decided to give back something that I have been blessed by, and I started working on two tiny blankets to donate to the local hospital here. I wish I had gotten it done by his birthday, but it has been a crazy month! They are all finished up now, and I will be calling the social worker to see when I can drop them off.

Here they are: two special blankets that I know will go to special babies!

PS If you are wondering how to do this fun diagonal/crosshatch stitch, here's a link to the tutorial I learned it from!

A brief announcement

I've decided to start taking crocheting a little more seriously and have set up a facebook page, blog, and etsy shop. I would love for any of you to stop by and see what I've been doing! Here are a few links and pictures!

I just posted my first blog post on the new blog. Here's the hat I posted about.

This headband with flower clips is listed in my Etsy shop.

And these baby espadrilles are currently one of the posts on my facebook page.

Hope to see you around!!

One year at home

I was looking through some of Isaac's old paperwork, trying to remember exactly what day he came home from the hospital. I did not find anything that definitively stated the date of his release, but I found a couple that were dated April 26th. So I'll go with that. In any case, this week marks the first anniversary of when Isaac came home after nearly two months in the hospital.

A lot of what has happened and the care Isaac needs has become more routine, more "normal" for us, however, there are still days that it seems so surreal. Earlier today, Aaron told me how it sometimes seems so strange to him that our son has a hole in his neck which we are required to push a tube into and essentially vacuum his boogers out of him. Even after doing it for over a year, that's a bit odd. It's something that we have to do multiple times a day, so it has become very normal for us, but it's never going to be "normal" for a three year old boy to have all that going on.

We talk regularly and casually with Isaac about his feeding tube and the "feeds" that he gets through it, his trach, suctioning, the spasms in his legs that are a symptom of his spinal cord injury, and his "big" hand (his left, which works a little better) and his "little" hand (the right, which is noticeably more difficult to use). We talk about all these things just as any other parents might talk to their preschooler about lunch, or if they have a runny nose. Or which hand they want to use to hold a fork or crayon.

We have begun to finally settle into some sort of "normal" routine. Not that there are not bumps in the road along the way. Since late January, we have spent most weeks with one or two nights where we had to stay up with Isaac because we did not have nurses to cover those shifts. That has definitely been difficult and not something we want to get used to, but most of the daily cares and routines have become exactly that-routine.

What a strange thing to think of as routine! While we have become accustomed to taking care of all the extra needs that Isaac has, the realization that this should really NOT feel normal is what weirds me out the most! My "normal" has had a definite shift. Have you ever been on a road trip and dozed off in the car? Whenever this happens to me, particularly at night, I wake up feeling disoriented and not knowing which direction we are driving. So when the sun comes up, I am once again able to orient my internal compass and recognize which direction I am headed. That feeling of seeing the sun come up in a place where I was not expecting is, for me, really similar to what I feel when I recognize how much normal has changed for me. Like the world is just a little bit askew for a minute, but at least now I know where I am going.

I am sitting in my car, typing this on my ipod. So it might have typos. Not sure how much I care about that right now. Am tired. I just want to get away from life right now. I'm trying ro have some optimism about things getting better. We might have a new nurse for Isaac soon. Assuming this one's background. Comes back clear. Aparently she's got some pretty impressive experience, so that's good. It's hard to be hopeful when things have not worked out the last time we thought we had someone. And even if she does work out, I don't know how soon it will be. She haa to go up north dor some training or something and then come train with the current nurses for a couple nights. i am just rirwd of waiting though . I need a break now, not in rwo weeks. You know? I just feel so ceippled and trapped by life eight now. And I don't know how to change it. i am just trying to wait it out, which is not working well. I mean, I'll get there one way or another, i just know I can't handle anything else today. So I'm sitting in the car, being away from that life inside. Maybe if I am lucky, the kids will be asleep by the time my ipod battery dies, which will be soon. It just popped up a low batterey thing at me.
I am feeling in need of some major recharging myself. There just has not been much opportunity to do so lately. I guess I'm a little like my ipod. Only more emotional. The ipod does not cry when it's low on power. It just blinks that little box at me every minute or so until I plug it in. I think I need a sign I can wear around when my battery is low. Help me find a power scource before I pass out from exhaustion.

That would be good.

Then I need an extra long power cable so I can still get something done while recharging.

And some dinner. I think I should go have some dinner. That might help.

Sorry for the depressed rambling. Guess I will go give my ipod a recharge and see if there is one for me too.