When My Son Showed Up Early

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IMG_2979 I still remember the day everything in my life changed. I’d just been given the news my one and only mama had died. I was eight months pregnant at the time with my second child. I hugged my son so tight and told him about his Grandma Betty going to be with his Geedo (our name for my dear dad, who died two years and two weeks prior.) I don’t remember much after, except talking to my best friend. She said, “You’re so calm, why aren’t you crying?” I had no idea; the shock was strong that day.

Fast forward to my mom’s funeral. There I stood, waiting to sing with the choir. I remember hitting notes high in the stratosphere as I sang her favorite hymn. A month passed, and I experienced bleeding in my pregnancy and went into early labor. I still remember how scared and in shock I was. My precious baby boy made his appearance at 36 weeks. He was a healthy 6 pounds, 2 ounces. He didn’t cry. He wasn’t purple; he looked like a little loaf of bread not quite finished baking. The OB/GYN had later woken him up, and he made this meowing sound, and I looked at my husband and burst out laughing. “Did our baby just meow?” I asked.

Off to recovery I went, and my son went to the NICU, where he stayed for ten days — the longest ten days of my life. I was sent home to be with my family, but we didn’t feel like a complete family without our baby home. I went to the hospital every day every three hours to feed him. After that I would cuddle, change and put him back to sleep. Then I’d go across the hall to the lactation room to pump and save some bottles for him. I would do this till 10 p.m., then go home to my husband and my 4-year-old and try to live a regular life.

I would start the process all over again at 6 a.m. I knew my baby was sensitive. He didn’t open his eyes for five days; when he did, he took in my face and the world around him. He didn’t like the noise, bright lights or the shift changes between the nurses. He wanted to be held all the time. My doctor had told me, due to my boy’s prematurity, he would be developmentally delayed.

I was still in surreal mode. My son showed incredible tenacity and strength; he was able to leave the NICU and come home. When the health nurse came to assess him, she said he was growing well and asked us if we had any questions or concerns. I told her my first son was strong and could push himself off my chest as a newborn. But my baby had mutant strength. I proceeded to show her how he could roll completely from side to side at just 10 days old. She had said it wasn’t the normal thing you’d see for a newborn — that he was a “just in case baby.” That meant to always put your hand on your baby just in case they roll off the change table.

As my son grew, I noticed his sensitivities did as well. He wanted to be held and fed constantly and my husband and I joined Team No Sleep for months. He would cry relentlessly when I put him down. I spent those first three months of his life sleeping in a rocking chair. It saved my marriage and allowed me to cry silently in the still hours of the night for my beloved Mama.

As I introduced solid food to my baby at 5 months, he had a lot of texture and taste aversions. I had to mix sweet potatoes with everything. As he began to use finger foods, he wouldn’t touch certain ones. He was meeting his milestones, albeit a little later than his brother and what the books said. I didn’t worry; I was happy he was meeting them at all. He preferred fuzzy blankets to flannel and cotton to denim, and he howled if there was a bright light in his face.

He got to crawling at 9 months and taking his first steps at 10. He was speech delayed and would say very few words for the next six months. I noticed at 20 months the progress he was making was stopping. He finally started sleeping through the night at 2 years. I contacted my doctor and told her of my concerns with his speech delay, lack of sleeping and taste and texture issues. She said to be consistent and gave me a handout and websites to follow. I knew there was something else going on so I talked to my health nurse. She gave me information and I made the referral to see a child development agency. I saw a child development councillor, occupational therapist and speech and language pathologist while waiting to see the developmental pediatrician. In the meantime I read “Out of Sync Child” by Carole Kranowitcz. Suddenly, my child’s sensitivities began to make sense; finally someone understood him.

The developmental pediatrician diagnosed my son with having Sensory Modulation Disorder of the Sensory Processing Disorder condition. This was three weeks before my son turned 3. Six months later, I’m awaiting getting my son assessed for autism spectrum disorder. His speech has caught up to his peers, but he’s still behind on potty training. I’ve been working with him on awareness the whole summer; now the goal is to work on his interceptive sense that gives him the ability to distinguish hunger, thirst and urge control for elimination. I’ve been fortunate to qualify for respite care; I have a worker to help with strategizing.

And my son has someone to look after him while I have some me time. So everything’s starting to come together; I finally asked for help. My days are full; I’m my son’s mom and sometimes occupational therapist, and we do his sensory diet and speech therapy daily. I’m hoping to qualify for funding so he can wear a weighted vest; he’s a seeker of all sensory input and in a constant motion. I work on his proprioceptive sense so he’s more aware of his body in his environment and not crashing into people. He has his little teepee tent for when he needs his quiet time. In there, he has his sensory bucket of toys that calms him and makes him feel comfortable in his own skin. And now we start the process of getting him prepared for preschool. With his Obstructive Sleep Apnea diagnosis given last year, I have to get his blood panel done and start seeing an allergists. He’s on medication to help him sleep.

This isn’t what I expected when I found out I was pregnant with my son. I’ve had to grieve for my beloved Mama and for my son’s struggles in life. I still have to remain an advocate for both my children. I don’t ask for sympathy; I don’t feel sorry for myself. I truly believe that God only gives the most special children to the strongest parents. Sometimes it’s so hard, and all I want to do is cry and throw in the towel. I allow myself to have that moment and dry my tears and get back up on the horse again. I like to think that even though my son didn’t have a full-term birth, he came along right when I needed him the most.

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You’re a Good Mom, Even When You Don’t Feel Like It

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To my former self, on the day we received one of Caiden’s first (and scariest) diagnoses:

Not every parent can say they have their pediatrician’s personal contact information, but then again, Caiden isn’t the typical patient. You should be proud of yourself for deciding to stick with this doctor. She’s going to be an essential part of the diagnostic process, and your biggest professional supporter.

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She’s going to call on her own time from her personal number so you can talk about the first diagnosis. Remember to save her number like she tells you to; you’ll need it later. You’ll spend a good half hour on the phone scribbling down notes as she explains three words that should never be put together when talking about an otherwise healthy child.

Global Cerebral Atrophy.

It’s only by chance that we stumbled upon it, and it won’t be the last unexpected diagnosis in his ever expanding medical file. That one routine MRI to rule out cerebral palsy, a possible result of his prematurity, will be the catalyst that turns your life upside down and catapults you into unknown territory.

Don’t waste your time Googling it; you won’t find much and most of it doesn’t pertain to him. Your best source of information will be the neurologist. I know you’re scared. You thought we were just dealing with autism, something I promise will finally be diagnosed in a few more months. But now you’re suddenly faced with the real possibility that his brain is dying, and that’s terrifying.

Go ahead and cry. Just remember, you’re not to blame for this.

Make sure you take notes when the doctor calls, even if they’re a mess. The other doctors you’re referred to will want to see them. It’s difficult keeping all of his doctors on the same page, so notes and appointment summaries are  important. Don’t forget to bring his records to every appointment.

You’re going to hear words like “cancer,” “deformity,” “trisomy” and “biopsy,” but six months, three additional doctors and a dozen tests later, most will come back normal, and you still won’t know much more than you did that day.

That’s good. It means most of the really bad stuff has been ruled out. You aren’t in the clear yet, but you’ll handle each bit of information the best way you know how, and you should be proud of that.

Remember that to find out the answer, you need to pace yourself. If you schedule too many things too close together, you’re going to get burnt out. You can’t be his voice if you’re hospitalized for exhaustion.

Lastly, and most important, try to remember you’re a good mom, even when you don’t feel like one. Despite the mountains of self doubt and mommy guilt, I want you to know that he loves you, even if he can’t tell you for himself.

Follow this journey on Narrating Caiden.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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If I Could Go Back to the Day I First Saw My Dad in the ICU

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Dad and Me If I could go back to the day I first saw my dad in the ICU, I would tell myself to breathe.

It’s OK to freak out. Don’t think too far ahead. Think just far enough to have groceries for lunch tomorrow. Today will happen and so will tomorrow. No matter what happens between this tile floor and those fluorescent lights, tomorrow will come. You will survive this. You will.

As crazy as this sounds now, there will be good that comes from this. Your father’s condition may actually bring your family closer together. The terror and sleep deprivation will bring out the honesty between you and your parents. Having to make tough decisions will force you to have conversations you have long avoided. You will not hide behind being nice when there’s no time to shower and you’re spending 14 hours a day at the hospital.

Also, buy an accordion file folder. A big one. You will have tons of papers we will need to keep. Papers describing his condition, copies of bills we can’t pay, descriptions of exercises the physical therapist wants him to do. And actually file the papers. Keep a journal listing all the encounters with all the doctors and the insurance people and the social workers.

In the moment, it will be so easy for you to remember all of the details, but now, nine months later, it’s harder to remember.

You will have lots of conversations with lots of doctors. Record all the conversations with doctors who let you. This was a trick I learned a few weeks in. Use the voice memo app on your phone. That way you can have a record of them for later and you can share the info with Mom when she’s at work.

Catch the doctors every chance you can. Before you leave the hospital at night, ask the nurse what time the attending on duty likes to round. That way you know when you need to get in the next day. If she says they round at 6 a.m., be there at 5:30. If you don’t catch the doctors when they’re rounding, you probably won’t see them all day.

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If you do, it will not be for a good reason. It probably means Dad is going back into the ICU again. Don’t freak out. OK, freak out if you need to. But know that, no matter how much it hurts to see Dad like that, it will end. It will not be like this forever. And, in the ICU, he’s on so many medicines that he will not remember most of what’s happening anyway. His time there will probably be more traumatic for you than it will be for him.

It will end. Well, not really end. But it will change. He will not be in the hospital forever. One way or another, there will be a day he will leave the hospital.

On that day, you will not be the same woman you were today. On that day, you will be capable of things you cannot even fathom doing today.

You will be stronger and weaker, harder and softer. Things will make you cry that never bothered you before. Things will not faze you that used to stop you in your tracks.

You will be different. You will change. You are not the only one. Everyone changes. Even Dad. Even you.

You will change, but you will not end. And neither will he.

You will survive and you will be happy that you did.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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When People Ask How I Handle Our Challenging Life, I Say This

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“I’m so sorry… I know you were just here.”

“It’s fine. It’s what I signed up for.”

I jump in my car, still warm from picking up a sick son just 30 minutes earlier, and head to the preschool to tend to an insulin pump that’s screaming its head off (the sixth insulin pod in a box of 10 to bite the dust in three days).

But this is what I signed up for.

Last month I made a quick stop at Macy’s and, as has become customary since our triplets arrived, I spent the entire time flipping through the clearance rack in the kid’s department.

I stepped up to the checkout counter, my arms filled with Dora the Exploerer jammies and Hello Kitty flair, proud of my deal-seeking skills.

“Wow! Do the girls you’re buying for know they’re getting some cute new things?”

“Actually, these are for my daughters.”

“Oh, you have twin girls?”

“Well, I have triplets… two girls and a boy.”

“Holy cow! What did you do when you found out you were having triplets?! I would have hung myself.”

And… scene.

The sad truth is that this isn’t the first time someone has said something like this to me. In fact, most people I meet who learn that we not only have triplets but that one of them also has type 1 diabetes, express their sympathy to me in varying forms.

But this is what I signed up for.

When I was young, I used to say I didn’t know if I wanted to have children. I knew I had a selfish side. I wanted to be successful professionally. I wanted to travel. I wanted to have the freedom to do what I wanted, when I wanted.

And then things changed. I wanted to be a mom.

But it wasn’t that easy. Not easy at all. Like, five-years not easy.

It’s not until you realize there’s a possibility — a real possibility — that you can’t have kids that you realize whether or not you’re meant to be a parent. I realized I’d been wrong.

I wanted someone to call me “Mommy.” I wanted someone to ask me to tuck them in at night and assure them there were no monsters in the closet. I wanted someone to ask me why the moon goes to sleep during the day and why Donald Duck doesn’t wear pants.

That is what I signed up for.

When people ask me, “How do you do it?” the answer is actually pretty simple… How could I not? I don’t know any different.

When you become a parent, you’re making a commitment to one thing: to love your children — no matter what. We don’t get to choose what challenges come with parenthood. We don’t get to decide what we can handle and what we can’t — that’s done for us. What we do get to play a role in is how we parent and how we show our children that we love them. Did I sign up for diabetes? Of course not. But I did sign up for being a mom.

I’m constantly amazed by the number of friends we have whose children are facing challenges including type 1 diabetes, Spinal Muscular AtrophyApraxiasevere food allergies and many more. Did any of us know or envision our children’s lives being consumed by these challenges? No way. Did any of us know we would soon become advocates, fundraisers and educators about these diseases/disorders? Not a clue.

But, we have.

Because that’s what we signed up for.

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This post originally appeared on Inspired by Isabella.

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Why I Don’t Take Breathing For Granted

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IMG_20141203_161127 There’s an art that exists within every one of us. It creates depth, mood and meaning. It paints the existence of life. It’s the art of breathing.

The past week has left me short of breath, words and understanding but with a wealth of tears and the love and support of so many people. I couldn’t begin to navigate this difficult time or the difficult decisions ahead without so much love and support. I’ve been cared for so greatly by so many. For each of you, the depth of my gratitude is so very deep and endless.

In the last week, cystic fibrosis has confronted me with some painstakingly harsh realities — realities I wasn’t prepared to deal with nor do I honestly want to deal with. I want to go home to my life: to teaching, to grad school, to my students, to my “boys,” to singing and to planning a future with no limitations. I want to go home to the life where I run from sun up to sun down, knowing no moment was wasted. I want to naively think of CF as something I control mentally and can merely outrun with my will and adrenaline. This past week has shown me a different course of life and the realities I must face sooner rather than later — conversations I’ve only abstractly thought through, lung function numbers I’ve only imagined were possible and a body that’s betraying every dream for the future I’ve made.

The problem with CF? It doesn’t play fair, it doesn’t make deals and it doesn’t care about the life you want or have. It’s an ugly disease that hurts a lot of people in its wake. A disease I’ve tried to protect so many people from, to protect myself from. A week ago, I was forced to come to terms with what I’d suspected was happening to my body — it was betraying me and quickly. For those of you who know me, I’m all about making deals with CF, constantly trying to hold it at arms reach while I live my life built upon adrenaline. Finally, I had no choice but to succumb to what was happening.

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Something wasn’t right and I knew it. I knew there was no out-willing what was happening this time. So, with my pride tucked away and fresh tears ready to be shed, I approached what lay ahead of me. The problem is, my mind is still running at 150 mph, but my body is running at 25 mph. My mind and body are not communicating. I’m filled with so many questions of disbelief. I haven’t had time to mentally adjust to the devastation CF has caused. Today when I look in the mirror or walk across the room, my mind doesn’t recognize its own body. Who is this person? It can’t possibly be me. How can I not catch my breath? How can I possibly need oxygen? How can I only walk a couple of minutes and be forced to stop because my oxygen drops to an unsafe level? My mind and soul don’t understand how this simply can be. Will it ever understand? I don’t think so.

In the last week I’ve shed a lot of tears, to the point of hysteria at times. I’ve always been relatively good at keeping my emotions in check and being strong, but this week has proven to be stronger than I. The emails and words I’ve had to write this week were composed of some of my worst fears and disappointments. I feel I’ve let myself down, but most of all, let everyone else down. I’m being forced to look at the future. I’m faced with making difficult decisions that could have a huge impact on the definition of what has always been my life: forcing me to reevaluate life and mourn the life I so truly want. How do I prepare my heart and mind for this? How do I keep from shedding endless tears? I know whatever happens and whatever my future may look like, the art of every breath I take is utterly beautiful. There’s beauty in whatever life has to give me. I must cling to every beautiful moment I’m given and bathe in its greatness, regardless of what that looks like.

I’m so incredibly thankful for each of you, for your words of encouragement, messages, your prayers, your positive thoughts, surprise packages, and your unyielding strength through it all.  You all are so very amazing. My life is filled with so much good. All my love to each of you.

Breathe out the beautiful art that makes up your life.

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This post originally appeared on Breath Bravely.

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Why My Daughter Would Be a Great Friend to Yours

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My daughter would be a great friend to yours.

She loves bubbles, music and dance parties. Does your daughter like those things too?

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She smiles and giggles and gives awesome high fives.

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But so many times the fact that she uses a wheelchair or the fact that she doesn’t talk, makes people shy away from interacting with her.

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I know she would make a great friend because her siblings think she’s fun to play with.

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She may do things a bit differently, but if you give her a chance, I know your children would have a great new friend.

This post originally appeared on Joyful Journey.

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