The phone number no parent ever wants to dial.
Just three little numbers.
The front door is opened wide. Daddies pacing. Don’t want them to miss the house.
In a matter of minutes, a fire truck rumbles into our small cul de sac in the way that only fire engines can rumble.
Big men in suspendered uniforms toting bags and equipment pour into our home.
Asking questions.
Mommies answering.
Oxygen masks on the bittiest of babies are put into place.
Always with the questions.
Just minutes later, the ambulance pulls in.
Where even more uniformed helpers pour into the living room.
More questions.
Mommies answering. Again.
Walkie talkies chirp and beep.
Notes are taken on metal clipboards.
As quickly as they rumbled into the neighborhood, they take the teeniest little girl with them on a much too big for her stretcher…the one that makes her look even more impossibly tiny…they rumble out of the neighborhood with your mommy in the back and your daddy following close behind.
And then silence. The chaos is over. The front door is closed. All is calm.
But this house of 6 is now smaller by half.
And in the middle of it all, seemingly forgotten, are the others.
The siblings who watch this.
Who take all of this in.
Who may not have the diagnosis on their medical charts, but share it with their sister just the same.
Epilepsy is not just Jill’s. It is a cross we all bear. Each in different ways. But each very real.
As a mom to four…as a mom to special needs…as an epilepsy mom…I try so hard to balance the needs of the many. There may be times that one of my babies needs our attention at the expense of the others, but the pendulum swings and I carve out intentional time for the siblings who don’t have the need for an entourage of firemen. (Skatepark anyone?)
Encourage your siblings. Share in their joy. It’s on our family canvas. Perhaps I should add Weep when they weep. Actually, yes. I will.
Henry and Lucy have witnessed this scene more than once. We have talked at length about how they need not be scared. Firemen and paramedics are helpers. They are good. Not scary.
So they stand back in the shadows watching the hub-bub. Side by side. So little. Leaning a 3 year old frame onto a 5 year old frame. I wink at them from over broad shoulders administering meds. They are so small. Side by side. They may fight about yellow crayons, but they seek comfort in the other regularly.
Lucy had had a rough day and had managed to earn herself an early bedtime that night. She slept soundly above our heads. God’s grace is so beautifully sneaky sometimes.
My guess is that she may have had a harder time witnessing this scene, watching “her Jilly” be whisked away. That will be for another day, I suppose.
But our last seizure before this one was 9 months ago. Nine months is a long time developmentally for a little boy. A boy who is now 5 and a half processes much differently than when he was still 4.
This time, he stood watching over the back of the couch…respectfully out of the way…and crept his way to his mama’s leg where he buried his head down deep and with a quivering chin and tears threatening to spill, he whispered:
“But Mommy, now I won’t get to play walking with Jilly anymore…”
He was trying so hard not to cry. He’s getting bigger now. But his little heart, the one that’s three sizes bigger than I’ve met on any child, was fit to burst with grief.
I love how he expressed his five year old love for his sister. He often stands Jill up, grabs her hands, waiting so patiently for her to get steady…and then walks backward holding her hands. He always exclaims “Mommy! I’m hardly even holding her! She’s almost doing it by herself!” And she giiigggggles. Laughs hysterically. For some reason, brothers helping us walk down the hallway is the most delightful of things. Inevitably, someone loses their balance and they end in a pile of uncontrollable laughter. Play Walking. It’s their favorite. It’s how he loves his sister. And he wanted to be able to do it again…
My mama’s heart. Somedays I wonder how much it can bear.
“Oh, sweetheart. No, no. Jilly is coming back home. She’s not going to leave forever. We just need to take her to the hospital because she is sick. The doctors need to give her more medicine to stop her seizure, and then we will be home. Promise.”
A quick prayer shot up simultaneously that I wasn’t lying to my boy. I wanted to promise that. I did.
He shook his head. Understood. Wiped tears away with a hard pressed hand to his eyes.
And for the first time, I sent him away. “Go with grandpa in the other room, okay? Maybe do a puzzle?”
We talk a lot afterwards. Cuddled up in my big bed. When exhaustion from a long day keeps little boys calm enough to chat with their weary moms. Process events. Talk about bugs and slime and whatever else little boys are enthralled with. Sisters being whisked away on ambulances.
But my question, dear reader, is what should I do while the hub-bub is going on? While I can’t (and won’t) shield them from the entire scene, do I let them see things as they unfold? No mysteries. No sense of being shunned. Will my effort to protect their hearts make them instead feel sent away…unwanted…unimportant?
Or, do I let them stay? Rub their backs and give them a wink…while they take in every detail? Every needle poke. Every sound and smell and sight. Sisters laying unresponsive on the couch. A team swarming. Moms rushing upstairs for shoes and a jacket.
They will likely always be home when it happens. I may be home alone with no other adult until someone can get to my house to help…so they will always see something. But do I let them just stay? Does it feel safer to know what is going on than to guess what might be going on? Imaginations running away. Worry because you can’t see what is going on? (Like when doctors send family out of rooms and close the door…anguish!) Or is it too much exposure for little hearts?
I’d love to hear your feedback and thoughts. Maybe you are that sibling? What did your parents do? Do you wish differently?
I don’t know. I really don’t. But I should probably decide before I have to make that decision again. They’re getting older. They understand more. I need a game plan. Because I love them fiercely too. They are so brave.
Bravest kids I know.
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Definitely the bravest kids, but they have the bravest mom and dad too. Having been there twice and watched, I think you should let them stay unless something dire is happening. Henry was able to ask questions and get answers and maybe some comfort from you, grandpa and me. Jillian’s epilepsy is part of life and God gets us all through together. There’s my two cents. Love you all.
You wrote this experience so beautifully from the perspective of the person being helped, and I love it! Because you see my husband is on the other side, he’s the one who comes in the rumbly fire truck, asks a million questions, and takes the tiny girl away on the ambulance. He’s seen the fear in the siblings eyes, and parents eyes as they watch helplessly. I can’t imagine how terrifying it must be for you all. I want to encourage ya’ll to find a fire station near you and go for a visit one day, or visit multiple stations! The firefighters don’t mind (I swear), and especially if you mention that you often have to call 911 and it’s frightening your kids, they would be OH SO GOOD to show you the trucks, and answer questions for Henry and Lucy. Maybe they could put a “real” friendly face to the whirlwind that comes into your house so quickly. If your city doesn’t staff ambulances out of the fire stations, I would also recommend finding and taking a tour of an ambulance as well. They can, and will allow this!
As far as what to do with the kids when you call 911, I don’t have a perfect answer for you. I have only been in that situation once when I called 911 for a friend who’s child had a seizure while we were playing together. My kids are all very interested in medical issues, and I told them to stand quietly and let the men do their work, but that they could watch. It may have helped that their daddy is a fireman and his best friend is a paramedic though. They’ve had experience with the trucks, and people in uniforms to know that they aren’t someone to be scared of (which is why I recommended taking a tour). I’d say it depends on how the kids seem to respond. If they are scared of blood, and needles, and tubes going into their sister, then make them leave the room. But if they are just naturally curious and want to see what happens, just let them watch as long as they are quiet and out of the way. My husband says nothing is worse than having kids or family getting in the way when they are trying to help.
It sounds like you handled it wonderfully. I love Holly’s idea about visiting the firefighters. I would think that could only help and sounds pretty awesome!
As their mother, only you know how much they can handle. I would say, just go with your mother’s intuition. It sounds like they are not afraid to show their feelings, so if it is becoming too much for them, I’m sure they will tell you or you will see any signs and indications. Maybe have a rough game plan, but remember it may be months before you have to use it and the children will be older with different perspectives. You’re doing awesome!
I second what Mary suggested. Fire station visit, bake up a plate or two of cookies to bribe ze firemen with (it can’t hurt) and let the kids ask away.
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I totally concur with the suggestions about seeing the helpers outside of the crisis. As a special needs teacher who handles all the scary calls (usually in class with the kiddos), the time after the crisis is crucial for understanding. Just answering questions as honestly and carefully as you can is the most helpful thing you can do with the other kiddos. One of the best ones I have every had after a crisis was “Where did they get those shoes?” Apparently one of the kids thought the paramedics kicks were really cool. I would also look to an organization that educates/has information on epilepsy. They usually have literature that be helpful in explaining the disease and that would be age appropriate for your kids.
I love, love, love your sweet little family and appreciate you sharing them with us. I would give anything to go back to the “little’s” stage with my big ole strapping boys!!!
As a someone who grew up with father who was often ill, I remember those days when the paramedics would come and he spent time in the hospital. I don’t remember being afraid (I am sure I was), I just remember knowing I needed to do what I could for my family. My parents never hid anything from me, they talked with me about what was happening and I understood the best I could. I knew far too much about medications and what my dad needed, but I always felt like I could be there and help when needed.
It really allowed me to appreciate my family and not be afraid when the really bad times happened. I have become a bit jaded, it did just become part of my life after a while, no more shock, no more being scared. As an adult, I am glad my mother did not hide any of it from me. I have a better understanding and appreciation of what truly happened.
I am not sure if this helps, but I thought maybe a perspective of a someone who grew up that way may help. My answer may be a bit all over the place (thank you head cold).
You are fantastic, and doing an amazing job with your children. My family lives with autism – very different than epilepsy. What I’ve learned from autism, though, is that it’s always important to empower kids to make choices, and it’s important to let them know that their emotions and choices are OK. In my house, that means letting them know that it’s OK to stay and watch, and it’s OK to choose not to. Maybe tell them exactly where they can go if they don’t want to watch. Kids sometimes tend to hide, and you don’t want to have to go searching for them! Let them know that if they choose to leave, as soon as you are able, and never a second longer, you will come to them. And if they choose to stay, tell them how they can watch, and that even if you seem to not be paying attention to them, that you are.
Talk through what might happen if…if you were the only one home, would the siblings drive to the hospital with you? Who would you call to come get them? Knowing there is a plan, and that you’ll still be able to take care of them, can greatly ease their fear. Let them know how they can be helpful to you and their sister during the crisis.
My autistic daughter has frequent meltdowns. They take over her body, and she screams, moans, flails, hits, thrashes and throws things. Her younger sister, retreats to her room with the door closed. We’ll find her huddled with her blanket and bear, trying to distract herself with a book or anything. It’s terrifying to her. The meltdowns can last hours. We go to her as often as we can during the process, trying to ease her fears, let her know she is safe. Afterwards we try to explain what happened….but when even we don’t understand, it’s hard to see how a 7 year old can make sense of it.
Good luck!
I’m not in your shoes, but if I were, I think that I’d let them stay. I say this because tiny imaginations run wild to go with and I know that if I had a sister who had epilepsy and was sent out of the room during a crisis, my imagination would not be pretty. It’s NOT at all the same, but a girlfriend of my had her 3 year old present with her during a home birth. They spent a lot of time before the birth talking about what might happen and what the three year old would see. The mama spent tons and tons of time educating the 3 year old on the process so that when it happened there would be no surprises. Perhaps you could do the same with your tribe? Take them to see the firemen and ambulance workers, arrange for a tour of the ER, etc. You never know when it is going to happen, but I think a little preparation would ease everyone’s mind. Also, now that Henry is older perhaps he can have a little bit of responsibility when it happens (he could find L’s favorite stuffed animal and bring it to her… make sure O-Bo isn’t walking some place dangerous). On the back end, how are they with dealing with their trauma? Have you considered some play therapy?
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My brother was diagnosed with diabetes when he was 5. I was 3. There were MANY instances when his sugar would go low, when he would become an entirely different person not in control of himself, his thoughts or his actions, and could become unresponsive, combatant, or hysterical. And from the early age of 3, my parents never shielded me from it. I KNEW what to do if my brother’s sugar dropped and he couldn’t care for himself – I knew the signs, symptoms, and what needed to be done to help him.
In school I would get called to the nurses office, or by a teacher because my brother (the only diabetic in the whole school) had a low sugar and I was a calming presence for him. Once when I was in high school, I had to call the ambulance myself because it was just my mom and I home with him, and she was trying to control him. But I knew what was going on, I knew what to do, and while it is always scary, it was WAY less scary than it could have been because I knew what was happening, and what to do.
I’m 30 now, and married to the most wonderful man – a diabetic. His sugar goes low in the middle of the night and I find myself in familiar territory: doing what I know he can’t do for himself because I’ve been there, I know it, and I’m ready and able to help. It gives him comfort, and his family comfort, that I’ve lived it, I know it, and I understand it. And I am THANKFUL that my parents didn’t shield me from it. Because it would have been scarier that way, and I may not have had the courage to ask out that cute boy with the insulin pump in my college History class. And my brother and I are best friends.
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Hi Jeanette,
Wow. Sometimes a blog post can really bring the memories (and tears!) rushing to the forefront. I’m so glad I decided to spend my lunch break catching up on your posts today because I am that sibling.
I’m third of four girls and my oldest sister Kristina was born with a trisomy on her 18th chromosome (this number might not be 100% correct my brain is failing me right now) – anyway, she was severely mentally and physically handicapped and suffered from grand mal seizures throughout her life. Kristina, my sister Ashley and I were all born within 3 and a half years of one another so we were all small at the same time, like your kids.
Your account of a big seizure happened in our household several times when we were little, not only for seizures but for a number of other medical crises that arose from her disabilities.
Though I know they happened and Ashley and I were always there, I really don’t remember those scary days now (I’m 23) – I remember weekends spent with grandmas, aunts and uncles while mom and dad were at the hospital for extended stays on occasion and I remember playing quietly for a few days while she was recovering, but to be truthful, the scary parts aren’t at all a part of my childhood memories. My mom and dad would spend extra time comforting us when they came home and we really learned to lean on each other. In fact,t I can’t imagine not having Ashley in those times. I’m sure your kids will feel the same.
As I got older, those times got a lot more difficult. As a teen, there are a few instances that really stand out in my memory where I saw my parent’s fear during a crisis or stepped in to hold her on a ride to the hospital. Those times were hard. But by that point, I’d seen so much strength from my parents and we’d talked so much about how special our family was that I felt able to handle it and be strong for my parents despite my own fears.
So to answer your question, I don’t think there’s really a ‘right’ way to handle those situations. But your kids are learning lessons about strength, faith and family at a young age that will be with them for the rest of their lives. Keep reminding them that their family is special in so many ways and give lots of hugs. It worked for my mom.
I started my blog not too long ago hoping that I could write more about this very topic but it’s hard. We lost Kristina to complications of a seizure three years ago and all I’ve managed to write is this post: http://allthingseblog.com/february-11th/. Your post may just be the push I needed to share a little bit more of our family’s story.
Thank you so much for sharing.
-Erika
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I’m the sister also (although its a brother (john) who has epilepsy). He has granmal seizures a lot (twice today). But with our 3 year ago difference, there’s only one time I actually remember seeing the ambulance. It was at my grandparents house. I’m fairly certain I sat at the top of the stairs and watching the commotion in the living room, and eventually walked downstairs.
I like what you’re letting your kids do. I liked being included more than I like getting sent to stay with other people. I’m so thankful they had grandparents around so that both you and your husband could go with Jilly. I would keep the communication open and honest. You can even ask them what they think or would like. When I was in high school I would be woken up by my mom telling me what had been going on in the house and what they were going to do (sometimes they elected to drive 2.5 hours to the bigger better hospital than try to go to our local hospital and eventually end up in another ambulance or helicopter) and those times were the hardest. Being 16 and alone wasn’t real fun, but I learned to cope, usually it was a prayer,a good movie, and I would drift back to sleep. Your kids are lucky to have each other to lean on, and I can see from all the love you speak about that it will all be okay. Whatever will be will be.
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With it being so fresh, I would start by asking Henry what he wants to do when Jilly has a seizure. He experienced both this time…watching and then going to play a puzzle. He will remember how each felt. It might be nice for him to know that he can help with Lucy, especially if you are alone with the children. If he chooses to watch then he can hold Lucy’s hand and help stay in a safe place. Or it can be his job to take Lucy in to play a puzzle just like Grandpa did for comfort.
I believe that Blake is our miracle and Kaia is our gift, each equally important. Just like Jilly is your miracle and Henry, Lucy and Owen are your gifts. I believe God plans families. He knew what he was doing sending Jilly into your family, with the specific siblings he planned for her. And vice versa. Just like he planned for you and Andy to be their parents!
I also allow Kaia some down time to process all that she lives with as a sibling to a special needs child. One day, after watching Blake have a very difficult time going to school, where a non-uniformed police woman stepped in and took an unnecessary rough approach with Blake, Kaia started bawling in our car watching from afar. Instead of driving her to school….we drove home and spent the day together….crying, chatting and just letting her process all she deals with. Kids are so much more resilient than we give them credit for, but I also think addressing the emotions and recognizing them is so important.
I’m curious to know how Henry might answer. One thought though to watch for….when Kaia was 7 years old she asked if she could learn how to catheterize Blake so that we could go to dinner and a movie without having to come home in between to help the babysitter. We taught her and she took on that responsibility. Soon after she started having nightmares about a fire in our house and how she couldn’t get to Blake in time to save him and there were snakes everywhere. With the help of one of our infant program workers we quickly realized that while she was wanting to help, it was too much responsibility for her at that time in her life. We told her that we would so grateful she knew how to cath Blake in times of emergency but that she didn’t need to do it regularly. The nightmares stopped.
xoxo, April
I don’t have any advice, but I wanted to thank you for sharing this – and all your commenters, too. I really appreciate the view into your beautiful family’s lives.
I would let them see. I think you know how much your kiddos can handle, though, and in the end, you should determine where to draw the line. They could realistically be alone with her somewhere far in the future and you would want them to be secure enough to answer the questions, etc. If they see you are calm, they will be more calm. They make thing you are freaking out if you send them away, and that may scare them. I think ultimately it’s your call, and I think you as their mother know when to draw the line.
This isn’t the same thing, but I have faced a similar question before. My son was stillborn at 32 weeks and my oldest was 21 months old at he time. Everyone thought I was crazy, but I wanted Aiden to meet his brother before the funeral director took Colin. My husband and I were adamant about it and the hospital finally allowed him in. I have never, not once, regretted that decision. It gave Aiden closure and most importantly it gave me a starting point for the conversations we would have on this huge loss in our family. The “experts” all said that Aiden wouldn’t know what had happened or understand the loss. Aiden is 8 now and a week ago he told me he would never forget Colin. He described seeing him perfectly, the color of clothes he was wearing, the blanket we wrapped him in. He remembered it all. Siblings have a bond that is completely unexplainable. For my oldest, having that experience was vital. I think the same is true for medical emergencies. When I was on bedrest with my daughter, we carefully explained the procedures and what was happening, never leaving our children out of the loop. For me, my imagination is worse than reality and I see that same trait in Aiden. I have a Masters in Child Development. I think many times we do not give children the credit they deserve when it comes to their understanding of a situation. It’s so important to involve them and even more important to recap with them and let them ask questions and calm their fears. I think you are doing a great job of both!
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I didn’t read the rest of the comments, so what I have to say might be repetitive. I was that child, that sibling. The big difference is that my sister was 11 years older than I am so I was the baby. And I know my parents handled things the best way that they knew how, but I do wish they had done it differently. My sister didn’t live at home (her disabilities were too complicated for my parents to take care of), but we visited her weekly and more often when she was in the hospital. And I cannot tell you how many hospitals rooms I was pushed out of and how much that hurt me. I was young (10 when she passed), but I needed to be there. She was my sister and I loved her and I wanted to be there for her. I always stayed out of the way, and it was hard to watch, but I wish I had been allowed to stay more. To see more so that I could understand more. I think you’re doing an amazing job- they should know that it’s ok to stay and it’s ok to leave. Neither choice is right or wrong. You talk to the kids afterwards and that’s so important and something I rarely received. So mama, keep doing what you’re doing.
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Oh you know I could write a BOOK. This is a constant question in the back of my mind. Am I doing it wrong? (and the answer is yes sometimes) Will my two “typical” kids resent their brother and how they’ve had to experience things that most adults don’t have to? While we haven’t had a 911 experience and not so much the medical side of things, we have had lots of experience with behaviors, meltdowns, etc, etc, etc. I know that’s different from what you’re experiencing, but I think most siblings of special needs kids grow up similarly. With more compassion and understanding. They are incredibly well rounded. Gosh I just freaking love you. And your writing that makes me think and relate and cry. xoxox
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I agree with all the comments. I think it’s important to keep the kids involved an like another mama said above, keep the kids out of the way of EMT’s and fire personnel. It is less scary for kids to see what is going on, than it is for them to come up with their own idea of what is going on.
You’re doing a great job with your kids and how you handle Jill’s seizures. Please take comfort in that.
Hugs to you and your family,
Caryl
Your post completely made me tear up. I am not sure what choices I would make for my own kids. That is a tough call. But you have such a mommy’s heart that whatever you choose is what is right for your family. I can imagine it is scary for a kiddo but maybe better than them wondering what is going on because what they could be imagining is scarier?
We said a prayer for your sweet girl when I saw your pic on Instagram of her little hand. God bless you! Keeping your family in prayer.
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This made me bawl!! :( I think that you handled it perfectly! I’ve always felt that kids will watch and ask as much as they want to know. I’m sure that your instict will know when you need to shield Henry & Lucy more or less.
I do think visting the fire station would be good also so that they see a different perspective.
Oh Jeannett I think you are one of the bravest moms I know! I love how well you express your deep love for your kids! My Travis is like your Henry – its the best thing to have son with a big heart!
I honestly don’t know what I would do in your situation – but for what its worth – I think that each time is different and I think you know your kids well enough to know what they need. So one time they may be ok to stay, watch other time maybe they do need to leave. I think you too well know, trust your momma heart. And by talking and reassuring them in the momoment and then after – is probably the BEST thing – at least in my humble opinion.
I will also offer this since I know from reading here you believe in the power of prayer. You can use these unfortunate times with Jill and teach Henry and Lucy how to pray – pray for Jill, pray for the fireman taking care of her, pray for the doctors in the ER taking care of her – I think when we pray – it takes the focus off our angst and the uneasy feelings – puts things in His control and maybe that can help them feel they are part of it in that way – does that make sense? I do that with my kids in sitations where I just don’t know what to do, I say to them, pray when you are scared, worried and can’t do anything particular.
I think you are wonderful!
xoxoTiffany
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First of all, thank you so much for sharing your life with us. So much of what you write is deeply personal and I really appreciate it.
I agree with what others have said about Henry maybe being old enough to decide for himself if he can handle staying and watching. Lucy may be a bit young for that still, but only you can know which would be best for her. I also agree with others that the right choice today may not be the right choice tomorrow. You kind of have to play it by ear.
Much love and many prayers to your beautiful family.
I wish I knew how to help. I can pray that God give you wisdom and understanding in how you handle the situation with your children. However he leads, I know you’ll follow.
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Does Henry’s school have an adjustment counselor? If so I would set up a meeting and seek some advice on ways to handle it. You may also talk to the pediatrician and get a referral for a child psychologist…not because I think your children are being traumatized by what they see, but because a professional will be able to proactively advice you on how to best handle these situations so you are prepared. Kids are developmental stages are so different. For what it’s worth, it sounds like you are already doing everything right! :) Jodi
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Oh goodness. Such a hard balance!
My poor little sister was dragged through all my medical drama. And you know what? She ended up becoming a special-ed teacher – gifted with an enormous amount of compassion and a true empathy for parents.
Ironically, during the time when they discovered I had kidney issues and my mother swore the entire family off of sugar… we had no idea, but my little sister was an undiagnosed Type 1 juvenile diabetic. That probably saved her life.
(Her diabetes is so severe that her pump cannot manage it, and she lost her little girl to complications from it).
So… God can use this. These scary awful things. I am praying for divine discernment for you – in those EXACT moments when God can direct exactly who should be where. Praying for wisdom in each decision. And really…? I’m praying for healing for your girl. Praying that she will be a testimony to God’s goodness and His healing.
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As a mom of two type one diabetics and wife of a type one diabetic of 53 years I have lived the challenges that you are discussing today. I struggled with the whys, hows and whens for many years and suddenly I was called by God to put the nearly thirty years of experience into a book. The most important thing that I learned in my quest for righteousness in every element in life is that all things are part of Gods plan for all of us to live and grow closer to His calling. He has the power and He has the plan. You cannot attempt to be so powerful that you will control destiny. The financial challenges, the emotional challenges, the physical and psychological challenges of chronic illness are all simply lessons that make each of us more capable and spirited in our ability to not only cope with but to actually mentally and spiritually grow from what every one of us experiences each day – challenge. If you truly believe that we live by God’s will and for His purpose then you will find that the “problems” or “hardships” that come with a challenge are just the seasoning that we are supposed to experience in order to grow. I made each of the activities of caring for my D children in the midst of four siblings into fun things for all of them. Sugar did not cause diabetes but management of it leads to good health and so the lesson is we only eat sugar when we need to. Shots were a lesson in nursing and so each of the children were shown that caring for others and caring for oneself can cause uneasiness and sometimes pain for all who are involved. Yet, they learned that the pain ends suddenly and the result is good health and a successful life. These are the things that you can do to turn lemons into lemonade. I know that a positive spiritual approach and a faithful understanding that God has a grand plan for us will make all ills manageable.
I’m a little late commenting but this post really hit close to home because I have been very sick since my daughter was 9 months old, and she has grown up seeing me go through all kinds of medical things. I taught her that all the medical people were safe, and they were here to help and make me feel better. As a single parent, I was unable to shield her from going to my doctors appointments or when I was dealing with difficult situations. She does have a bit of a fear of going to the doctors, always fearing something will be a major issue, or need an iv/shot or procedure, because she was so use to seeing me get invasive procedures every time, (she is 13 now) but she doesn’t fear the Medical Professionals themselves.
I think you are doing a great job with your kids. We can’t shelter them from all that is painful in the world, especially their dear sister being ill. I wouldn’t send him away, just focus on making sure he knows that the EMS/Paramedics are considered HEROS for helping Jilly, and maybe talk to him about some of the other great things they do, like help fight fires, save people in crashes, get a pet out of a tree LOL… 5 year old boy language that makes Doctors, Nurses, Firefighters, EMS etc Heroic. Then maybe talk to him about how he can be a big boy if it ever happens again and take care of Lucy and get her comforted and out of the way in a designated spot out of the way (such as the couch). It is ok if he sees what is happening, but that way he is safe and so is lucy, and he feels empowered in the situation. Also like someone else said, a firestation visit would be a great idea, also a visit to the hospital/doctors office so he can see where Jilly is when she isn’t home and he will know she is safe. These little things will be huge for his sense of security.
Hope this helps! Love Sandra
Hi,
Please forgive me for this comment but I have created a new bookmarking site for parents of disabled children. You can bookmark any links that are interesting to other parents. The site also automatically bookmark news stories and new blog posts from relevant bloggers.
If you would like your site to the auto bookmarking, please email me. I just need your RSS feed. For wordpress sites it is [your domain name name]/feed.
There is also a twitter account that will auto tweet all the posts and news that is bookmarked. Follow @forspecialneeds. if you are interested.
Best wishes
Duncan
(Dad to a child with Dravet Syndrome)
Duncan Edwards´s last blog post ..Asha Jyoti: Special day for Mangalore special children
Everyone has such good suggestions! [I know this is an old post, I am sooo behind on catching up on reading.] I never had this experience in a home, but when I was a teacher I had special needs children + one that had a seizure while in my classroom, so I’ve had the opportunity to handle their reactions.
From my experiences + things I learned in school [I got a degree in child development/early education] is that the scariest thing for children once they understand what is going on [which is sounds like Henry is at that point] is feeling helpless. He loves and cares about his sister and the feeling like he can’t do anything to help is hard for children.
To handle this, one thing you can do is give them a job. Obviously, not something too important, but something that makes them feel like they are helping. For example, have a “hospital bag” ready [I’m sure you probably already do!] and make it Henry’s job to get the bag when you take care of Jill. Or make it his job to get her favorite stuffed animal + make sure it makes it to the hospital. Something little. Something that makes him feel like he is doing something to help. Something that makes him feel important, like he is helping instead of getting in the way.
When the child had a seizure in my class she ended up staying in the hospital for a week and my class was terrified. We made her a banner to decorate her hospital room that each kid contributed to. They felt so proud, especially when her mom sent us a photo of the banner in the hospital room. If Jill has a hospital stay, let them make a presence in her room & show her their love. It will help them both.
Linda´s last blog post .."No one can make you feel inferior without your consent" -Eleanor Roosevelt
Ooh, I forgot to add… giving him a job is not only to make him feel like he is helping, but also to take his mind off of what is happening.
Linda´s last blog post .."No one can make you feel inferior without your consent" -Eleanor Roosevelt
I am a blessed mom of six. I know, crazy, but totally awesome. My youngest daughter, Anna who is five, has Rett syndrome. She is unable to walk, talk or use her hands, but is mentally aware. Anna was born a healthy sweet baby, but we noticed at six months old that she was losing skills that she had already learned. At eight months old she began having seizures. Our world seemed like it was falling apart, but it didn’t. With God’s grace our family has stood with confidence that even though Anna is trapped in a body that doesn’t do what she wants, she has been a gift that we treasure. Our other kids pray everyday that a cure for Rett syndrome will be found. They love her and say that she is their favorite sibling. Every night they make sure that they kiss her good night because sometimes girls with rett don’t wake up. My fourteen year old son, Aaron said that if a cure is not found and we die that he will take her in. Absolutely love them. They are changed because of her special needs. Changed for the better. They are so much more understanding!