What to Bring to the Hospital for a Child's Surgery

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hospital bag If you are ever the person I was, packing a car to drive to the hospital for your daughter’s 17th time under general anesthesia (this time, to move her aorta away from her esophagus), you will need to bring many things with you. Take notes. I know exactly what you will need, if you are ever the person I was.

First of all, you need clothes for you. You need soft pants and a roomy shirt to sleep in on an uncomfortable set of cushions by the window — cushions whose ill-suitedness for restful sleep you will not notice as you sink, delirious with exhaustion, in and out of a black slumber 20 times a night. You need thick socks and slip-on shoes so you can perch on the edge of the bed and then jump off quickly to skitter across the room and grab the emesis basin, the phone, the nurse’s call button. You need more hooded sweatshirts than you would have predicted. You will be far colder than one would expect.

You do not need clothes for your daughter. Though you may have thought ahead to the incisions and the need for button-down as opposed to pull-over pajamas, you have somehow forgotten the snaking tubes and lines and leads and wires that would need to be disconnected to manage something as complicated as sleeves. She will only need hospital gowns. The pajama bottoms, while a nice touch, are only an impediment to quick bathroom trips, of which there will be many.

Perhaps, just bring her some socks.

You need only one book, no matter how long you think you’ll be staying. In fact, you only need 12 pages of a book. You’ll only ever read those 12 pages. Far better are repetitive, mindless electronic games on your phone, there only to break the tedium of the same animated movie on repeat day after day, soothing the floating consciousness of your daughter but bringing you to the edge of hysteria. Bring a charger and a long cord.

You can bring books for your daughter if you care about the facade they create that her education and intellect is anywhere on your list of priorities. They are heavy, though, and in her haze of alternating morphine and shocking pain, she will never choose to read them. You can bring your own movies and know the drone of sound with the light and color of something other than hospital monitors will be all she can absorb for several days. You will watch these movies out of one eye while watching her with the other. Bring headache medicine and a water bottle.

Bring your steadiest, most practical friend. Say yes to her offers: to ride to the hospital with you at dawn, to bring muffins, to shield you from other drama, to distract other visitors. Let her pretend with you that the chairs in the waiting room are beautiful, that you need to photograph them, that they would look great in your older daughter’s room, that yes, wow, these chairs! Talk to her from next to her and do not look her in the eye, but know that if you did, and if you started to crumble, she would not break. Buy her a large drink and, hours later, a sandwich.

Only bring pieces of your husband. All of him there would be too frightening; you have no choice but to bring all of yourself, but if you bring his fear and his history and the image of him holding your daughter when she was a newborn, flat across his forearm like a football, grinning and singing in her ear — it will be too much. He will have to bring that himself. You can only carry so much.

You will need to bring more family than that. Whether you would prefer it or not is meaningless, and in the end, you will be glad they are there. They will bring all the things you cannot carry: a stiff upper lip, and a good attitude, and the presence of mind to place a meal in your hands while you wait and say you really do need to eat this, you’re no use to her if you’re running on empty. They will fill the visitor’s fridge with snacks for you before they leave. You will eat them all week, and feel grateful.

Be sure to bring a camera, maudlin as it may seem. When it is over, when she is home and months have passed and she is beginning to forget, you can look at the pictures. You can see her terrible strained smile, see the tangled hair that did come smooth again, see the balloons that are now flattened in a forgotten basket.  We were there, you’ll say to yourself then. We made it.

But before that, of course, don’t forget to bring everything there is to bring of your daughter. Bring her body, miraculous nearly everywhere but one twisted place. Bring her memories and her history and her essence. Bring her love, her trust. Bring her sweetness, her spirit, her humor. Bring her as a whole being, and as the broken pieces of her fuse slowly, cracks visible, remind yourself and her that she is not the feeling of torn muscle and spasms. She is not the fire rising in her chest when she breathes. She is not the stupor of drugs and the sticky heat of bandages. She is your daughter: alive.

That’s what you should bring, if you are ever me.

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To the People Who Didn't Join Us on Our Special Needs Journey

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One of the hardest parts of treading through this world as a parent to a child with special needs is the disappointment you can feel towards those you once thought cared — the people you thought would always be around. To count the faces that have disappeared over the years.

I understand this situation can be hard to understand, but then again I don’t. Your absence… it still hurts.

Time is flying by through all the medical tests and appointments, and I’m not even sure at what point you decided to leave. At one moment I was in a life that made sense, and the next thing I knew, I was hurdled in a different direction where everything’s different, where nothing is by the books. Holding on to the past or the people who lived there seems nearly impossible. Before you have a chance to say goodbye to one way of thinking, you’re already trucking down another path. A path full of constant leaping without thinking.

Every once in awhile I stop and look back, mainly to reflect at how far we’ve made it, but it’s hard to not notice everything and everyone who stayed behind.

The life I lived before my daughters diagnosis was such a different world. I’m not saying it was better, but it wasn’t like this. Honestly, I never had a clue this kind of life even  existed. It was happening all around me, and I was so unaware. I try to keep that in mind as I’m constantly dishing out the patience card. How could you really understand this life? How can I really blame you when you don’t? I was once you. Maybe at one point I would have judged me too.

Here I am, on the other side of the fence. The view is different. There’s no road map or tour guide; it’s a little slow sailing and a bit bumpy. I’d set off in a direction, unsure where it was going. Before I knew it, I was lost at sea. I couldn’t see land and I quickly began to realize I was never going back. Familiar faces began to dwindle. This was life now.

I wish I could say I have a big crowd surrounding my family who just knew when to step in or how to help out, who know when I’m  exhausted. I wish there were more maps to guide my way, loud voices cheering along the way. Witnesses who could view a child’s milestone as a gift and realize how amazing it can feel when you reach them. I wish life didn’t move so fast so I wasn’t constantly feeling like we’re lightyears behind. But it’s moving, and regardless the direction, so are we.

Embracing every moment of our life is key to survival. This direction I’m traveling is full of surprises. They’re not all good, but the ones that are, are moments like no other. I’ve got an opportunity to witness miracles, beat all the odds. We claim what is ours on this path, taking nothing for granted. Meeting new friends, saying goodbye to some old ones. This direction moves so quickly, yet goes so slow. I haven’t got a clue where it’s going or how I’m going to make it in one piece, but that’s life. Nothing ever happens like you think it will. No one can say for sure where our road will take us, but I hope one day we meet up and our paths cross again.

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What I Want Friends and Family to Know When Our Child Is Undergoing Surgery

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You know this is a difficult time for the parents and siblings of a child undergoing surgery, and you want to help but you aren’t sure how. There are a few things to keep in mind when providing support to a family going through such a traumatic time.

First, when the parents withdraw from everything around them, it’s not personal. There are a wide variety of emotions that come with preparing for surgery, and most of the time, it’s all we can do to get through the day. If we don’t respond quickly (or at all) or if we seem snappy and rude, it’s often because we know you love us and won’t hold it against us. We love you, too, and we want your support.

One of the biggest things a parent faces when preparing for surgery is the possibility the procedure won’t work or a complication may arise that can take their child from them. Every time we hand our children over to a surgeon, we face the possibility he might not come back. And when you have to face that multiple times, it becomes daunting and heavy. And even when everything lines up with the best possible outcome, that heaviness takes time to disappear. Even after the procedure is done, the child isn’t out of the woods. There is risk of infection and sometimes the body takes time to respond to the procedure, which makes the stress linger.

It’s certainly not an easy thing to face, and we definitely need and want your support and help. You can do a variety of things to help support your family and friend, but the most important thing is to be there. We can’t always respond to messages or phone calls right away, but we notice when you check in and we appreciate the caring you show.

If you desire to do more, ask if you can provide a meal or two or babysit any siblings. Offer to help keep the kitchen clean or do a load of laundry. It doesn’t have to be much of anything, and don’t be surprised if we turn you down. That’s just how we do things. But sometimes, we will say yes because we’ve gotten to a point where it’s become hard to return to normal.

As if one surgery isn’t hard enough, there are too many of us who have had to watch our babies undergo multiple surgeries. If you’re a friend or family member to a family like this, the toll can be even harder. While our specific worries change with the procedure, there’s usually one constant question: Will my baby come back?

With that as a primary concern, we’re more likely to bail on plans in the weeks prior to surgery and more likely to take longer to reply to messages and return phone calls and spend most of our time just trying to survive. This is when we need you the most, even though we may show it the least.

The same can be true in the days and weeks following surgery, depending on how recovery goes. Our son Jaxson’s last surgery required a three-week inpatient stay, and he nearly didn’t come back. It was the hardest time we’ve been through as a family, but the support of our family and friends was imperative, and Jax has made a full recovery.

Your support is what gets us through, and those of you who can stick with us through these difficult times are the ones we can’t live without. So please don’t disappear or assume we no longer value your friendship because we didn’t respond to a message. That’s hardly the case at all. It’s just difficult to express how we feel to you.

Please know we value your love and friendship more than you know, and we never want you to stop calling or sending messages. Knowing you care is what we need more than anything. That and hugs. Lots of hugs.

Love,

A Mom Who’s Been There

 

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Lead photo source: Thinkstock Images

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3 Things Every Special Needs Mom Should Hear

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Dear mother of a child with special needs,

Maybe you’re feeling a little bit beyond exhausted right about now. Sometimes life can get overwhelming. Most of the time it seems like each day is an uphill climb. But Mother’s Day is just around the corner, and in case the people in your life aren’t able to express this, I hope you’ll allow me to say it on their behalf.

As someone who fit into the category of a “special needs child” growing up, I know each family’s situation is unique. We all face different conditions, and even they can look a little different on each person. Our circumstances and experiences aren’t exactly the same. However, there are three things I think every special needs mother should hear this Mother’s Day (and every day).

1. Thank you.

It’s not said enough to any mom and certainly not to you. Mothers are already the superheroes of the world, but you take it a step further. You keep things together when it’s bursting at the seams. You take care of everyone when they can’t take care of themselves. You make up the difference when the people around you can’t do all that they want to help out. Without you, things likely wouldn’t keep moving forward.

It was probably terrifying to learn of your child’s unique situation, and I know that disability, disease and illness make life more complicated at times. Still, you face all of it. Maybe it seems like it goes unnoticed or for different reasons it may not always be expressed, but all you do means everything to the people in your life – especially to your child.

2. You’re the reason why their world is safer.

Now, as a 20-something adult, sometimes I think I’ve got it together and can take care of myself. I thought I would totally be OK in the hospital by myself for some of the time when I had my first non-pediatric in-patient experience recently. But it was a different story once I got there. It wasn’t because I didn’t have confidence in the nurses or doctors – they were all great. It was because having mom around still and always will just make the world feel safer. I know that when I’m too sick or exhausted to speak up for myself, she won’t hesitate to make sure I’m taken care of.

No matter what stage of motherhood you’re in, you are the reason why your child’s world is safer. You make sure they receive the care they need. When doctors don’t understand or don’t have the answers, you don’t give up. When the world around your child looks too challenging and impossible, you find a way for them to experience all the important things in life. You’re always their biggest advocate. And you’ll continue to be, as they follow your example and learn to love themselves just as fiercely as you have.

Even if your child is not here on this earth with you anymore, you still continue to make the world a safer place. As you share their memory and raise awareness, you continue to give their memory a home, and you’re making it safer for all the other kids who will come along after them.

3. You’re doing a great job.

You’re not just doing your best and you’re not just getting by. You’re doing great. I hope you’ll always remember. When things get tough and everything looks discouraging, when you’re not always sure if you’re making the right choice or doing the right thing, please have confidence in your love for your child and your understanding of their situation. You are Mom, and only you can be the expert of that position. No one else. You do your job as only you can, and no other way would be acceptable. You get the gold star for showing up every morning, afternoon, night, overnight and everything else in between. Your only goal is to do what’s best for your child, and I see that, even if everyone else cannot always. Trust that you’re succeeding.

You’ve got this.

Happy Mother’s Day!

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When Another Mom at Target Changed How I Felt About Tube Feeding My Son in Public

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The first time I had to tube feed my son Davy in public, I was so nervous, I was shaking. Three-month-old Davy had had an appointment with his GI specialist that day at the clinic 45 minutes from our home. After we were done, I stopped at Target to pick up a few things and realized it was time for Davy’s next feeding.

I rolled my shopping cart into the Target cafe and parked it at a table in the corner farthest from the entrance. The cafe was empty except for a nursing mother who sat several tables away from me and had probably also chosen that area for its privacy.

Shaking, I laid out a burp cloth and set up everything I needed for Davy’s feeding.  A 60 mL syringe, powdered Alimentum formula, bottled water, a Dr. Brown bottle, a 20 mL syringe of water for flushing the tube before and after the feeding, and an extension tube.

Like always, I mixed up the bottle and tried to get a screaming Davy to drink from it for about 10 minutes, with no success. After setting him back in his infant carrier, I primed the 12-inch extension tube with water and unsnapped several snaps on his outfit so I could hook the extension up to his G-tube. Then I picked him up and opened the main port on his extension tube to push the 60 mL syringe into the opening.

I was so nervous that I didn’t notice the med port was still open from when I primed the extension, and so, when I slowly pushed down on the syringe’s plunger, formula dribbled out of the med port and down my hoodie and jeans. I quickly pushed it shut and grabbed another burp cloth to wipe off the formula.  Out of the corner of my eye, I could see the nursing mom watching me. In my anxious state, I was sure she was either judging me for not breastfeeding my baby or wondering what in the world was wrong with my son.

I got into my familiar rhythm of bouncing and swaying while simultaneously tapping the pacifier in Davy’s mouth with one hand and slowly pushing the formula through the tube with the other. Davy continued to wail for a while until he started to fall asleep.

It was then that the other mom spoke. “Excuse me. I hope you don’t mind me asking, but does he have a G-tube?”

I was taken aback at her question, as it was not what I had expected, and stammered out an affirmative answer.

She smiled at me. “My sister had a G-tube because of her special needs, too.”

With that, the ice was broken. I was so relieved to meet someone who understood about tube feeding during our first feeding in public that I could’ve cried. The baby she was nursing was a little boy almost exactly the same age as Davy, although he was twice the size as my tiny, undernourished infant. Like me, she had several older children as well. After three months of feeling like my whole world had been turned upside down, being able to talk to another mom about tube feeding was
like a breath of fresh air. When she was done nursing, she gave me a few last words of encouragement before heading out the door with her baby.

Having such a positive experience the first time I had to tube feed in public helped ease my fears about doing so. I was still nervous about it, but eventually, I learned to ignore the stares and answer questions with the hope of educating and raising awareness for tube feeding.

We never exchanged names, but talking to the other mom that day at the Target cafe made more of an impact on me me more than she will ever know.

The author's son getting a tube feeding

Follow this journey on Sunshine and Spoons.

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14 Things to Pack for Your Child's Hospital Stay

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Our son, Ben, has been in the hospital many times. Usually I forget things, but this go-round, I didn’t miss a thing. This was a planned surgery, so I had time in advance to consider what to bring to make this hospitalization comfortable for both of us, and I pulled it off seamlessly.

Here are my suggestions for hospital stays with your child. Obviously you would need advance notice to work this out, but we also found when Ben has gone through periods when hospitalizations were frequent, we kept a bag packed. I’ve also included a separate list of suggestions for supporting a family with a hospitalized child and making a rough situation a little more bearable.

The author's son sitting under blanket

Packing for the hospital stay with your child:

1. Extra clothes. Bring more than you plan to need in case of mishaps or stress sweat.

2. A bag of healthy snacks in case you end up stuck in the room longer than anticipated.

3. A few indulgent treats for those rough moments.

4. A pair of old slippers or comfortable shoes.

5. Light reading. With frequent interruptions, you want something to read that won’t fall apart if you can’t dig in and concentrate.

6. A stress ball or stress putty.

7. A head lamp or flashlight in case you need to get up in the night.

8. A sweater or sweatshirt.

9. Easy snacks or favorite drinks for your child. Just in case the cafeteria food is disappointing or you need to pull out a favorite to entice them.

10. Load a grab bag with small, wrapped gifts. Use them for prizes for enduring pokes and procedures or for distractions when the child is tired or has pain.

11. Medical toys. We have a special stuffed animal that Ben does medical procedures on. A child life specialist can get you tubes, bandages and catheters that resemble those your child has so they can make their special stuffed animal look like they do.

12. Electronics and chargers.

13. A new water bottle. If you have to entice your child to drink something, sometimes a fun vessel helps a bit.

14. A pillowcase, stuffed animal or blanket from home.

What to include in a survival kit for a friend whose child is hospitalized (some of these will be repeats from above):

  • Treats and healthy snacks for the parents. It’s OK to ask their favorites.
  • Light reading material according to their interests.
  • A travel-size toiletry kit.
  • A stress ball or putty.
  • If they’re there for several days, a home-cooked meal would hit the spot.
  • Their favorite coffee or soft drink.
  • A hospital cafeteria voucher, VISA gift card or gas card.
  • If you’re familiar and comfortable, offer to sit with the child so the parent gets a brief break.
  • Ask if you could bring anything they forgot.
  • A distracting toy or game for the child.
  • Offer to help with babysitting other children or driving them to school or extracurricular activities.
  • Offer to help with laundry or housekeeping.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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