To My Child with Down Syndrome on His Third Birthday, I’m Sorry.

I’m sorry.  I’m sorry I was ever afraid. I’m sorry I was ever anxious or worried. I’m sorry I was so unsure. I’m sorry that I thought I wasn’t ready. I’m sorry that I ever doubted for a single second if I would love you as fully as I do. I’m sorry that I grieved for the child I thought I would have, because my love, you are so much more than any child I could have dreamed up. I’m sorry that it took me until you were in my arms to see that.

I’m sorry that sometimes I get frustrated at the slower pace we are at. I’m sorry that I have tried to rush you. Because my darling, I wouldn’t want to move any faster than we are. I wouldn’t want to skip over a single moment, or rush a single milestone, or take away a single second of you being exactly who you are every minute of every day.

No matter how slow things might seem while they are happening in the blink of an eye I am somehow writing this for your third birthday. I don’t understand how you’ve gotten so big, so independent. You don’t need me to carry you as much, there are no more bottles to hold, or meals to feed, you can do all of that on your own now. You don’t need me a little bit more every day, and in those moments I am so thankful I get you at each age just a little while longer.

You are learning to sign. You drink through any straw you can find. You are getting the hang of using a spoon. You dance to any beat, especially your own. You are so funny my dear. You can stack things, and you can tear them down twice as fast. You say bye bye, papa, down, eat, done, and every once in a while I think I catch you say mama. You give the best hugs and kisses, you are learning to run and go up stairs, you are losing your baby fat. In a few short weeks you start school and I know things will never be the same after that. The years will go by faster, summer breaks will blur with first days of school, elementary school will blur with junior high, which will blur with high school, and hopefully college. I will miss my baby a little more each day and fall in love with the young man I am going to meet even more.

I am so sorry I ever felt like I did not want to be a special needs parent because I am so thankful that you chose me to call mom. I love that 47th chromosome more than anything else in this world. You are the best part of my world. You are my happy place, my heart, and my home. I have never laughed so hard, cried from joy so deeply, loved so fully.

You are so strong, so brave, so determined. To watch someone so small fight so hard to do things we see as simple, things we take for granted, things like feeding ourselves, walking, even talking, it changes you. It makes you more humble, kinder, more willing to sit back and enjoy life. You my son have changed me. I am a better person because of you. So now, on your third birthday, I tell you I am sorry for every negative thought I had and I thank you for teaching me, for loving me, for growing with me. Happy birthday Oliver, momma loves you.

 

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On Our Third Down Syndrome Awareness Month

October first marked the beginning of our third Down syndrome awareness month. A month where we can educate and inform those outside of our community for thirty-one days straight without feeling like we are shoving it down their throats. A month where our children and loved ones are celebrated on a grand scale for being exactly who they are, something we are now fighting so intently to keep alive. We are now over halfway through this year’s DSAM and I can’t help but look back to where I was at this time last year, and the year before that.

The first, Oliver wasn’t even here yet. I had only received his diagnosis six weeks earlier and felt this extreme pressure to celebrate when I was still very much grieving. I had no idea what I was heading into. The majority of information we had received had been negative. His diagnosis came along with a stack of books that did nothing but outline every worst-case scenario there was. I began to post small facts on my social media to educate my friends and family about Down syndrome, but I was just as clueless as they were. The day that Oliver was born would be the first time I had ever met someone with Down syndrome.

The next year, October first began the start of our second DSAM while simultaneously being the day that Oliver’s father left. He was not even ten months old and I was left to raise him alone. I found myself feeling the exact same way I had felt the year before, scared. I had every intention of celebrating that month, I posted one fact for each day like I had intended to, but the celebration didn’t go any farther than that. Every plan I had set in place was now gone, I was lost. Publicly, I celebrated with all of the friends I had met in the community, but in private I had more questions about what our future held than information I passed out about Down syndrome.

As our second DSAM came and went, my struggle with celebration and education created a need to do more. I wasted our first two DSAMs. I had spent 62 days offering vague surface level information about the most important person in my life. Half of the time I was learning while I taught, sometimes I didn’t understand what I was posting about. I didn’t even know that Down syndrome awareness month existed before Oliver. I knew that DSAM needed to become more than what it was. I needed it to be more; I needed to be more.

Our third began with no preparation, no set of hard facts ready to be shared, no intentions of doing anything in particular, but not for the same reasons as years past. This year we celebrate DSAM with an ever-growing community following Oliver’s journey. I now spend every day raising awareness for Oliver, interacting with people who want to learn more about Down syndrome, who thank me for educating them, who love Oliver even if they have never met.  This year there is no fear, no feeling of being lost, no empty void that the second DSAM left me with. This year I know what our future holds.

It took three of these to get to a place where I finally feel like I am educating instead of grasping at straws, hastily plastering facts I’ve never even researched onto my profiles. This year I finally feel like a true advocate. We attended our first buddy walk last month, and as I stood in a crowd of people celebrating Down syndrome so openly I wondered why it took so long for us to get there. I once thought that Down syndrome awareness month was to teach people about hypotonia and how long on average Oliver will live, why it’s called Down syndrome and who discovered it, and at first it might have been. But now, DSAM is a platform to educate beyond factoids. It’s to show the truth in the struggles and the celebration in the accomplishments. That for one month I get to tell the world that every hospital stay, every therapy session, every potential diagnosis, every delay, every single IEP form is absolutely and irrevocably worth it.

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Something that's been on my mind.

Something struck me the other day. We were having a really rough day, Oliver and I were both sick and it was taking all of my strength just to keep him occupied enough that he wasn’t screaming. I reached for my phone, typed out a status about the struggle, and paused.

Should I really post this? How can I complain about the bad day we are having when I am fighting so hard to get people to see that Down syndrome is a blessing? What if people think I’m a hypocrite? So I deleted the post and continued on our miserable day, but the instant feeling of “don’t post that” still lingered. Why do I feel this way? Why am I so afraid that if I show all sides of Down syndrome that people will choose to not accept my son as a person? Part of me is so afraid that the people that have described him as having no greater quality of life than that of a dog will win. They will see my rough day post and share it for the world to see, getting everyone to chant along with them that my son is not worthy of living. But will I ever really change those people’s minds anyway? Should the rest of the world who is open minded and willing to learn about my son be denied authenticity because I am afraid to let people know it’s not always sunshine and roses?

Those of you reading this, willing to learn about Oliver, willing to get a better understanding of Down syndrome, and aren’t afraid to ask questions deserve to see every angle of the life we live. The good days and the bad, the tantrums along with the sweet moments. Some days are rough, some days are really rough. The majority of bad days are created by nothing more than a toddler being a toddler. But the really bad days stem from something bigger. Sometimes it’s as simple as a commercial where parents watch their children grow up, go off to college, get married, have kids, and the realization that those things are not likely to happen for your child. Sometimes it’s the days where he is screaming at me because I didn’t turn on the right show but he can’t speak yet to tell me which one he wants and the fact that he is delayed pulverizes me. But those days never last long, and the pity party is celebrated in secret, because honestly, we are so lucky, and things could be so much harder.

I don’t want to fear authenticity anymore. I am not a perfect mom. My kid has a diet of mainly EGGO products, and I let him watch as much TV as he wants. I laugh when he trips, and most days I tell him he is being a jerk at least once. Some days he makes me want to pull my hair out, and sometimes he does it for me. We do not have a regular bath schedule, and sometimes I get lazy with our therapy homework. I am nowhere near the raw milk, make your own baby food, feed your toddler kale kind of mom, and I’m ok with that. Today our Internet and TV went out and it sent me into a full-blown panic because we don’t know how to survive without watching Sing at least once a day. Don’t you worry, I had recently backed it up on the tablet and the day was saved.

I guess what I’m saying is, I want what I write to mean something. I want to make people think, change their minds, reassure them of their choices, and I can’t do that without being completely genuine with all of you, and from now on that’s what I am going to be. Prepare yourselves, because things are about to get pretty ugly, probably a little gross, and most definitely a lot more real.

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When the World got to Decide if my Son was Worthy of Living

Last night was a night I was not prepared for. Last night, thousands and thousands of eyes were intimately undressing me. Removing layer upon layer, seeing the parts of me I don’t so carelessly show, taking in each and every private detail, and once I was fully exposed, they informed me they did not like what they saw. Last night the world at large discussed if Oliver was worthy of life. Yes, you read that correctly. People all over the world opened their smart phones, logged onto their tablets, got on their desktops and climbed their high horses to give their unwarranted two cents about a segment on 60 minutes Australia that discussed a test that could all but eliminate Down syndrome. Strangers calling me cruel for bringing Oliver into this world, comparing Down syndrome to rectal cancer, wishing for a world where my son does not exist.  I spend most of my days telling other parents and loved ones of people with Down syndrome to speak up and be strong. Last night I was not strong. Last night I was weak. Last night I held my child with tears running down my face. Last night I walked away from social media in fear of what I would read. Instead, I spent the night cuddling what I see as sheer perfection questioning the world we live in and wondering how so many people are so uneducated about what it means to have Down syndrome. How in Australia 9 out of 10 women chose to abort? Why? It all starts with what happens after the prenatal test is given.

 I chose to be tested when I found out I was at risk for having a baby with Down syndrome, not for termination, but preparation. Let me be clear, I will never tell a woman what to do with her body, but what these women, these parents, are being told in these cold, quiet doctors’ offices is all but forcing them to chose termination.

We are living in a world where prenatal Down syndrome diagnoses go hand in hand with a list of the closest abortion clinics. They tell mothers to be that if they keep their child, their lives will be ruined. They tell couples their marriages will be destroyed. This stigma has to end. The fear has to stop. We need to educate what life really will be like. That for some of us, we will have children who don't have heart problems, or stomach issues. Delays will be minimal; they will go to regular school. This idea that we can stop the difficulty of raising a child with special needs before they are even born is asinine. Children are born with unexpected issues every day, there are accidents all the time, do we eliminate those children too? What happens when we can begin to pre natally test for autism, cystic fibrosis, cancer risks? 

For those out there whose children developed illnesses and disabilities after they were born, are your children less worthy of life to you? Would you have "eliminated the risk" from the get go? 

Yesterday my son walked by my side through the beautiful streets of a downtown square. We had coffee and breakfast outside with friends; we went to a car show and played. When we got home he fed himself dinner and then went outside and played with his grandparents. We cuddled before bed, he gave me kisses and hugs goodnight.

If this is what people want to eradicate, I feel so sad for them. Sad they will live without experiencing the joy and love and happiness that comes with a child like mine. Oliver has made me a better person; he has made me stronger, more open-minded. He has taught me to live each day to the fullest, to never regret, to speak my mind. To never have had the experiences Oliver has given me would be such a loss. 

Science is science, they see numbers, they see results, and I applauded the researches that are working to better the world, but the approach of this test is not bettering our world. It is creating fear. It is creating uneducated, biased opinions based on old world doctors harshly shoving diagnoses at scared mothers to be. Science is cold. It's numbers and data. Numbers and data to not begin to describe my Oliver. 

Let women have the choice, give them the option of this test, and let them make their own decisions. But instead of fear give them hope. Instead of a death sentence show them what life will really be like. Let them speak to parents who have been where they are. Let them speak to adults with Down syndrome. Show them the kids that are driving, and going to school, and walking the runway at New York fashion week. The business owners, the creators, the people that are changing our world for the better, and all of them rocking that extra chromosome. 

 

 

What it's really like Having a Child with Down Syndrome.

My son is two and a half years old. By the end of the day I am exhausted, worn out, pooped if you will. My son has Down syndrome. He has "special needs". You must be thinking, “Wow dealing with all those special needs must wear you out, run you down". Or, "I don't know how you do it. I couldn't handle it. You're a superhero. God chose you for a reason”. And every night when it's time for me to crawl into bed I am thoroughly exhausted. But I'm not a superhero. And God didn't have some special plan for me. I'm exhausted because I'm the mom of a two and a half year-old little boy. I’m the mom of an every day totally typical ball of chaos. I’m the mom of a toddler.

I'm exhausted because he just learned how to climb and that's all he wants to do. I'm worn out because he loves making messes. I'm tired because we spend hours dancing and screaming and playing and racing cars and singing songs. By the end of the night I'm pooped because he didn’t want to get out of the bath and twenty minutes later the waters gone cold and each of his perfect little fingers and toes are wrinkled and I’m behind on my chores because I couldn’t help myself but watch him laugh and explore and play.

Oliver is an early bird. When he wakes up, he wakes up fast and hard, and he's ready to take on the day. When he wakes up there's barely enough time for coffee before the terrible twos commence. So we get up and have breakfast. We watch The Secret Life of Pets at least once and we will probably watch it again before the day is over. We get dressed and we run errands. He helps with the laundry by unfolding every piece I’ve just completed. We do all the hand gestures the itsy-bitsy spider about 30 times in a row. Sometimes he just likes to walk back-and-forth across the room and laugh to himself because he finally figured out how to move his legs in an upright position.

He's a daredevil, he's messy, he's a goofball, he’s a kid. He isn’t challenging or exhausting or a steep mountain to overcome because of Down syndrome, he is all those things despite it. On Mondays our friend Michael comes and does physical therapy with us for one hour and on Wednesdays our friend Florence comes and does speech therapy with us for one hour. We see the doctor regularly. Sometimes a little more than average. But most of our days are filled with laughter and messes and Oliver constantly trying to cheat death by falling off of things. I clean up the same toys at least 17 times a day. My most used phrase is,  “don't touch that”. I'm not a superhero. I wasn't chosen for anything special. There was no set path that God planned for me because I am a stronger person than the next. I'm just a mom raising a toddler trying to keep him fed and clothed and maybe teach him some things along the way.

Year Two in Holland

It’s been two years since I arrived in Holland. I still swear I booked a flight to Paris, or Rome, or another one of those over romanticized cities. But somehow I arrived in Holland instead, and the ticket was non refundable. Believe me, I tried to change my destination. I argued, I pleaded, I begged the lady at the ticket counter, but she made it very clear that this was the place I would be going to, and there was nothing I could do about it. So I waited, and let me tell you, waiting to board the plane was excruciating.

“I don’t even know where Holland is! What language do they speak?! What is the food like?! I know NOTHING about this place and now I just have to go there? No questions? That’s just it? No other option? It’s Holland or nowhere?”

The flight felt like years. I paid for the overly expensive WiFi and researched as much as I could before I landed. Most of what I read made my destination sound even less appealing, but by the time I landed I felt slightly more prepared to enter this strange unknown country.

The landing was bumpier than expected and by the time the plane touched the ground I was eager to see what this country I have researched at length was all about. Stepping off the plane and finally seeing Holland changed everything. It was like I was seeing color for the first time. Mountainous fields of vibrant poppies met my gaze, it was the most beautiful thing I had ever seen. It took my breath away, and suddenly I wasn’t so afraid anymore. I was here, and it was perfect, and looking at the new adventure in front of me, I knew that Paris or Rome would never compare to Holland.

So here I am, year two in Holland. The streets are easier to navigate now, I’m almost fluent in the language, and I’ve become a regular at all the local spots, and as much as I love this place, I can still get lost navigating the twist and turns of its inner cities. Sometimes I catch myself fantasizing about what Paris or Rome is like this time of year. I wonder how much easier it is to find a decent place to eat, or if I would have more time to just sit back and enjoy the view. Because in Holland I find myself worrying a lot. What will the weather be like tomorrow? Next month? A year from now? Will I be able to handle the bitter colds of winter as much as I enjoy the warm sun of summer? And the language in Holland is ever changing. Sometimes I feel like I am finally getting a grasp on it but then a new dictionary comes out and I’m trying to play catch up again. It can be difficult living here, with it’s confusing maps and every changing language, but right when I feel like I’m going to be lost forever, I round the corner and discover the cutest, perfect little coffee shop where I can sit and relax and enjoy myself once more.

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A Letter to My Past Self on the Day of My Child’s Diagnosis

I constantly wish I could go back to that day. Sit down and talk to myself when I first heard the words Down’s syndrome, when the blood test came back, and then the amnio. I remember the gut wrenching heartbreak like it happened just this morning. I was at work; it had been days since they drew the blood from my arm that would change the course of my future. I remember being so mad that tests like that took so long. With the way technology has advanced why hasn’t blood work gotten any faster?

It was just a normal day, except now my belly started getting in the way when I tried to do things. We knew he was a boy, and his name would be Oliver. What we didn’t know was just how much that day would change us. I could hear the vibration of my phone on the counter, I looked down, a Crown Point number, I knew it was the doctor. I answered the phone and it was a nurse telling me that the doctor needed to speak to me, and I already knew. If it were good news, the nurse would have just told me. I could feel the hot tingles of adrenaline coursing through me, a sick feeling coating my stomach, but this time it wasn’t morning sickness, this was something else. Something life altering, the end of the path I once knew. After what felt like hours on hold he finally was on the other end. “I can’t believe I am telling you this, but the result is positive.” See the doctor tried to convince me to not do the blood test, he said I was too young, one small shiny spot on an ultrasound said nothing, he thought it was a waste of time. I stopped really listening after that. There was something about an amnio and more apologies. I couldn’t even think, I just knew I had to run, I had to get out, I couldn’t breath. My boss could see it all over my face and he told me to go. I ran out the door, collapsed into the car, and called Joe.

I’m not even sure he could understand me through my sobs, I finally got the words out, the test was positive. He was calm, like he would be for the next few weeks of grief, my rock, my positivity that always found it’s way through all the darkness.

The forty-five minutes I drove to get home I did something that I’ve never done before. I begged God to make it not true. Through sobs I screamed, “Please God, not my baby, not my son.” I wish I could go back, be in that car with myself, explain how unnecessary my fear was. There was no need to beg God for anything, if he is real, he knew exactly what he was doing. I got home to open arms from Joe, we told my mom the news. She took a deep breath and said, “ok”. It’s like she already knew, knew that it didn’t matter, that he was exactly who he was supposed to be. She left Joe and me alone while I sobbed, he just held me and let me grieve. I’ve never cried harder then I did that day. We hadn’t even had the amino done, but somewhere in the depths of fear, and loss, and confusion I already knew the truth. No matter how hard I denied it. No matter how many articles I read, calculating the numbers over and over again at what percentage of a chance we had that it would be a false positive. But the results came back, and we all know how that story ends.

One night after we knew it was real and it was happening, we were sitting on our bed and I told Joe I didn’t want a baby with Down’s syndrome, I didn’t want this life. That I wasn’t that kind of person, I couldn’t handle it. And he just sat there and let me talk and he just listened, kissed my belly, and told me it would all be okay. I wish I could go back and be on that bed with myself, to explain that there would be nothing to be afraid of. That I could absolutely do this. That I was, and am that kind of person. That I can handle so much more than I ever thought I could. That I would become an advocate for my child, that this diagnosis would change me in ways I never expected. That I am a better person for it.

Days turned into weeks, grief turned into preparation, sadness turned back into excitement. But it was always there in the back of my mind. Will he look like us? Will he go to college? Get married? Have kids? Will he get made fun of?

I still have these questions, but I have realized something. Every parent asks themselves these questions. It doesn’t matter if their kids are “typical” or not. Down’s syndrome, Autism, cancer, your child could turn out to be a giant asshole, you just don’t know.

So here I am now, approaching my son’s second birthday, and I write this letter to you, past self, and I write this letter for every parent who has gotten this diagnosis. I write to tell you the real story, what really happens after you get a Down’s syndrome diagnosis.

I wake up every morning to the biggest, bluest eyes I have ever seen. I wake up to my best friend. He’s tiny, and loud, and hilarious. He makes me laugh until I cry, and cry until I laugh. We get up, and play, and eat breakfast, and watch his favorite shows. We run errands together and visit our friends and family. I tell him about my day, he greets me with kisses after work. When the stars come out we snuggle and watch Bloop and Loop and I trace the outlines of the most beautiful face I have ever seen.

I get the honor of watching him learn, and grow, and understand when things are funny, and laugh until he falls over. I get to watch him learn to crawl, and stand, and walk, and applaud himself when he realizes he got it right. And I get to love, love more than I ever thought was possible.

I wish more than anything that I could give you this letter, past self. I wish I could tell you to not grieve for the loss of a child, because you got something so much more than just a son. You have a child who teaches you grace, and patience, and kindness, and strength. You are one of the lucky ones. 

Tubes aren't just for earaches

 

It has been forever and a day since my last blog post but luckily it’s for a good reason. Oliver has been healthy, growing, and thriving! And it is all thanks to getting tubes in his ears.

 

Usually when you hear about kids getting tubes in their ears the first question that is asked is how bad their ear infections were. But Oliver didn’t have ear infections. Two total in his lifetime thus far and both occurred after he was scheduled to have his tubes placed.

 

Oliver had extremely thick fluid in his ears that would move and cause pain, shock his system when he could hear for brief moments, and all around made him sluggish when it came to growing, eating, and completing milestones.

 

In the first six months of this year we were hospitalized three times and sick more times than we could count and we thought it had to do with his ears, so, I fought for him to get tubes even though every doctor told me he didn’t need them.

 

Luckily the MRI we had done for seizure activity worked as a dual diagnosis (he doesn’t have seizures thankfully) but it did show how thick the fluid was, so finally a doctor at our children’s hospital agreed to do the surgery.

 

In the first six months of this year Oliver did not grow, he did not gain weight; his therapy sessions were horrendous scream fests, milestones got farther and farther away from us. We kept hoping it was just his ears, if he could just get the tubes everything would change, and we were right.

 

In less than three months Oliver has gained almost four pounds and has grown three inches. He can now sit up from lying down, pull to stand, side step on furniture, even take a few steps if you hold his hands. He says mama and gabs constantly, he finally responds when you call his name.

 

The thing about being a special needs parent, above all else we have to trust our gut. My gut told me that tubes were what my Oliver needed when everyone else told me it wasn’t.

 

Trust your instincts. Fight for what your child needs. Don’t be afraid to bother their pediatrician until you are blue in the face. Fight for the tests they say are unnecessary. You know your child better than anyone else. The thing they say they don’t need might just be the thing that will change their life.

Screw the village, it takes a whole damn city

When they say it takes a village to raise a child, then it takes a bustling metropolis to raise a child with special needs.

There has become a reoccurring theme to the reaction I have received when I speak positively about Joe (my ex husband) and Maria (Oliver’s new Step mom). The majority of people seem, confused, baffled, shocked, flabbergasted, whatever you want to call it at the relationship we have built for the sake of this tiny little human that we promised to love and care for.  

You never expect to get divorced, especially when a baby is involved, but shit happens, you separate, you move on, people get remarried, it's life. These unexpected hurdles do not mean you stop working together for your child. It's not easy, there are a lot of bumps in the road, but I'm honestly exhausted of hearing how I’m so mature, or the famous, “You’re a way bigger person than I could ever be.” It takes minimal effort to be a good person to the person you chose to breed with. You literally chose them to create this magnificent life that is half them half you. And if it takes a bustling metropolis to care for a child, why wouldn’t you want every volunteer working to help?

For some reason when people travel down the road of divorce, through all the potholes and detour signs they forget that the destination is the same as it always has been:

“You are now entering the town of co parenting.”

I get that it's hard, fights are fought, opinions differ, we hurt each other, but this isn't about us, it's about our child.

I was told something not too long ago that completely changed my perspective on my situation.

 "If there is someone who wants to love your child, let them."

This woman is amazing to my son. She loves him and cares for him like he is her own. Why would I deny Oliver that love? Why would I deny another person into my metropolis who wants nothing more but to help?

I fought this idea for months. I was hurt and angry and tried my hardest to deny her entry until one day I heard that quote. Why would I refuse someone the ability to love my child? For what reason? My own ego? Sorry folks, your ego doesn’t get a say when it comes to your child. I see parents who fight and blame each other, who drop their children off at relative’s houses so they never have to speak. What kind of life is that for your child? Who gave you the right to ride such a high horse?

Don’t get me wrong, I tried to ride that high horse, but he kept bucking me off and knocking my ass back down to reality. And let me tell you, you might think the view is great but you aren’t seeing the whole picture from way up there. The skyline might look pretty but we all know the best view of a big city is from the ground looking up at what we created together.

*When you receive a Mother's Day gift from your ex husband and his future wife/mother of his 2nd child you have reached your destination into the town of Co Parenting.

Sorry I've been such a shitty friend, I’m just trying really hard to get a grip on being a special needs mom. 

Let me start this by saying that I have amazing friends, friends and would do anything for me. Friends who have listened tirelessly about my divorce, friends that I call my family. But, I used to have more of these people. Friends used to surround me, but people don't understand how hard it is to be a special needs mom and a friend. How hard it is to talk on the phone to catch up when all you have is hardships to share. How hard it is to meet up when your child gets sick five times in two months. How your sanity is stretched thin trying to remember doctors appointments and therapies let alone meeting up for coffee.

I get it. I get that it must be frustrating to try over and over again to hang out with me, for me to have to say no or cancel last minute. I get that I've been a shitty friend, but I was really hoping I wouldn't be given up on so easily. I know you are not in my shoes so you don't understand, you might think that I don’t care about you anymore. That I no longer desire to see you, but it's the furthest thing from the truth. I miss you and need you more than you know, but I have no idea how to ask you to come over and sit while I make fifteen phone calls to children's hospitals, or do therapy, or tell you that you can come over but stay clear of us because we are sick again.

I don't know how to do this. I'm still trying to figure it out, but I'm getting there. It's easier now. We leave the house a bit more, I answer the phone with more frequency, but now that I'm ready to be a friend again, you are all gone. You've moved on with your lives and have left me behind. I can't say I blame you, but that doesn't make it any easier.

I'm so thankful for the friends that have stuck around. Those who don’t hear from me for months and still make an effort. The ones I have canceled on three times in a row just to stick it out to finally see me on the fourth try. The ones that get it. The ones that understand that I'm not only a special needs mom, but a single mom. The ones that visit and hold my son so I can do the dishes while we catch up. You know who you are and I am forever grateful for you.

I’m sorry I’ve been such a shitty friend, but I am a special needs mom now.

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Battle Fatigued

I read an article recently about a mother who felt battle fatigued, fighting every day for her child with special needs and I just wanted to crawl into the article, find her, hug her and be like YES I get this, this is me too.

I am battle fatigued.

Before I offend anyone, I’d like to say that I appreciate the questions about Oliver and what he has been up to, I also don’t mean to say that I have it worse off than anyone else because I know things could be worse. I am not writing this for pity, or for sympathy. I am writing this like I write all of my posts, because I need to. To get it off my chest, and hopefully for someone who reads it that is going through the same can know that they are not alone.

My son is 14 months old, and everyone just assumes that now that he is at this age he is more independent and this is when it gets easier. No. Oliver is a 14 month old that does not crawl, let alone walk. He does not eat solid foods, he does not feed himself, he doesn’t even hold his own bottle. He is in many ways still an infant, but boy does he have the personality and strength of a toddler. He is extremely dependent on me, and as much as I love the cuddles, it’s exhausting.

I am battle fatigued.

I feel like I am in this black whole of doctor appointments, and lists to make, and papers to fill out, and phone calls, and I’m losing the battle. I showed up to an appointment that wasn’t until the next week two weeks ago because I can’t keep up with it. When we figure out one thing two more pop up. This battle is exhausting and I’ve realized it’s time to let something go.

I know that it wont always be like this, sometimes it gets better but the last month and a half have been pure chaos. And through the chaos I have realized that my dream to have the career I want is over.

When I have mentioned in the past that I don’t know how I am going to have a career and be a single mom I have gotten the eye roll, like “you’re just being lazy, if you really wanted it you would do it” and “I know plenty of single moms who have successful careers.” That is great for them, how many of them have a child with special needs?

Let’s just break down the last month and a half shall we? And before we begin we have to remember that Oliver has physical therapy every Monday at 3:30, Occupational therapy every other Wednesday at 10, and will begin speech therapy soon. These times are not chosen because they are convenient but because they are the ONLY times he could be fit in to the therapists extremely busy schedules.

1/14 – We drive almost three hours to have an MRI done at a children’s hospital because no one in our area will put him under anesthesia because it’s “too risky”. After 45 minutes and 10 different people trying to put an IV in Oliver they give up and tell me we will have to come back, so I pack our bags and reschedule.

1/15 – At 2 am Oliver starts throwing up and having explosive diarrhea, he becomes lethargic and refuses to eat. I take him to the ER, he is dehydrated and they have to put an IV in HIS SCALP to administer fluids.

1/16 – Back in the ER because he is still refusing to eat, they tell me to force him, thanks ER doctors, what great advice.

1/23 – Oliver starts to get sick and has begun to refuse to sleep.

1/25 – Spend over 3 hours in urgent care, Oliver is diagnosed with RSV.

*I then spend far too long calling and canceling his MRI and rescheduling a third time and rescheduling an orthotics appointment that was supposed to happen the next day.

1/28 – Take him to the doctor where they say he needs to be admitted to the hospital where we spend the next three days in what I can only describe as the depths of hell.

*I then have to reschedule a neuro appointment for a later date and am on hold for over an hour.

2/3 – I spend over an hour on the phone with a social security person to re-evaluate Oliver’s SSI as I explain over and over how Down syndrome doesn’t just go away.

2/4 – I have an appointment with his First steps coordinator to re evaluate milestones and discuss integrating new therapies. It’s always super fun to talk about how behind he is.

2/6 – Spend far too long on the phone fighting with the doctor about why they refuse to refill his acid reflux medicine.

2/10 – We are off to Riley’s again and get the MRI completed.

2/15 – Orthotics appointment, he has to get braces and a compression vest, they warn me I might have to pay out of pocket for these, yay.

2/16 – Still no word on his MRI results so I spend over three hours playing phone tag between his pediatrician and the hospital while they blame each other for me not having the results.

2/20- Oliver becomes sick again and I have to cancel PT and move it to a later day in the week.

2/22 – Give up and letting it run its course, take him to the doctor, he has his first ear infection.

Today we are still recovering from being sick and tomorrow he will have an eye doctor appointment at 10:15, a neuro appointment at 1:30, and PT at 3:30.

We are still waiting for his tubes consultation and surgery, circumcision, and now his shudders that we ruled as seizures are back so that diagnosis process will begin once more.

So tell me again how I can be a single mom and still find a job in my career field?

I am battle fatigued. 


Why it’s ok to say Downs

When Oliver was diagnosed I was introduced to a world I knew very little about. An unknown, terrifying world. Terminology was the last thing on my mind, but now that I am comfortable with the roads, and I know where all my favorite restaurants are, I am able to think a bit more about this wonderful, much less terrifying world. 

Words, a vast complex system of letters which give us the ability to communicate. They can hurt us, heal us, and change us, but they are just words, so why are we caught up on the specifics of a word when there is so much more we can focus on?

I have witnessed parents of children with Down syndrome become highly offended by the phrasing of their child’s diagnosis. I have heard of scolding friends and family, deeming themselves professors of the syndrome and “educating” others on the proper way to say “my child has Down syndrome”, but why? Why has this become a focus of our children when these friends, family, doctors, etc. aren’t trying to be hurtful, or rude? They are genuinely interested in hearing about your child, so why spend the time scolding them on words when you can be telling them about your homie with an extra chromie?

I have heard so many different forms of Down syndrome when people speak about Oliver:

Down syndrome

Downs

DS

The Downs (This one came from a doctor and I had to stifle a laugh)

Down syndrome child

Child with Down syndrome

Do you know what came with all these variations? Love. Love, support, and caring for my son. They were not harmful words, but words of encouragement and curiosity. So many people are uncomfortable with the topic of special needs, so if someone wants to speak about it, why would we scold them for word choice?

There is a company called Brownies & Downies that is a bakery who hires people with Down syndrome, which is amazing! Yet there are people who are upset by the name of the company. Really? Our children are getting the opportunity to be independent, work, thrive in this world, and you are upset about word choice?

So I say next time someone “incorrectly” uses a phrase when speaking positively about your child, hold back on scolding them, embrace them instead, and spend that extra time bragging about how great your kid is. Life is too short to fret over words.

 

The Plague

This last month has been a whirlwind of snot and phlegm and vomit. Oliver has been through hell and back and yet as he hacks up a lung and his eyes water he composes himself and continues to play, this little man is a warrior. The chaos started with our trip to Riley’s where we were supposed to get a sedated MRI. After almost three hours in the car we arrived, got settled in, and then after 45 minutes of them stabbing my baby over and over again could not get an IV in him and told us to turn around and go home. As annoying as that was, the night to come would be worse. At about 2 a.m. the stomach flu hit and we spent the next day cleaning up vomit and diarrhea and it ended with a stint in the ER with an IV in his scalp for dehydration. After recovering from the flu Oliver went right into a diagnosis of RSV that turned into RSV bronchitis. We spend two and a half days in the hospital with oxygen, nebulizer treatments, steroids, and no sleep. We are finally home and I know that all of this means being ever further behind in his milestones. His physical therapy will have regressed to several weeks previous, and we are that much farther away from him eating solid foods, but he is here, and he is home, and he is smiling. I thank my parents for being here for us, I don’t know what I would have done without them, but this last month of doctors appointments and rescheduling, hospital stays and medication administration just reiterates how alone I am in this. In the two and a half days that we were in the hospital his father visited a total of a little over an hour, he never asked if he should stay, he never tried to help. He visited, like a distant relative. But here we are, home again, gotten through this alone, we are stronger than we knew a few days ago and we will continue to be stronger with ever bump in the road, for he is my little warrior and I am his Momma.

IMG_8335.JPG

You Are Stronger Than You Know

   
  
 
  
    
  
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    When you become pregnant you celebrate, pick out nursery themes, and argue over baby names. You don’t think about the chances of having a child with special needs, and you most certainly don’t think about what you would do if you had to raise your child on your own. Yet here I am raising a child rocking an extra chromosome, as single parent.  It doesn’t matter why or how my marriage failed. It’s not really anybody’s business to be blunt. All that matters now is that it did fail, and it’s over, and in the last three months since he left I’ve had to overcome a lot raising Oliver on my own. Three months. When you say it out loud it doesn’t sound like much time, but it has been an eternity since that day. I’ve learned so much about myself, my faults, my issues, but I learned something else through all of this, I am  strong .  When you become a single parent everything changes, literally everything. How you eat, how you clean, the bathroom becomes an oasis of peace, until you realize Oliver can army crawl now and you see his adorable little face scooting through the door frame. You must rely solely on yourself. At first it’s petrifying, relying on no one but yourself. Through the late night crying and sick days, there is no one to turn to. There are no breaks, only quick opportunities to shove food in your face or take a relaxing 90 second shower while he cries at the bottom of the tub pulling on the shower curtain because he cant see you.  At first you sit on the floor crying, holding your chest because you can literally feel your heart tearing apart. But then you have to get up, because your son needs you. Little things cause those massive tears that leave you clutching for your chest. When he learns something new and there is no one to turn and look at to celebrate with, or when he is up all night crying and you are exhausted, those are the moments when you feel the most alone. But then something happens. You remember that the heart is a muscle and each one of those tears wasn’t you breaking, but building a stronger, thicker heart.  The once petrifying idea of relying on yourself becomes your strength. The knowledge that you can and will survive builds inside you like warm embers knowing that you can make it on your own. My son is happy; he has been and always will be my number one priority. I am still broken, but the large gaping wholes I could once feel eating at me like endless voids are now but cracks within me.  I am on my own now in this journey, my sons advocate more than ever before. My neon signs burns bright more frequently now, but I embrace what is to come. This is my path now. My Oliver is my future. And just like my son, I will heal and grow and succeed in my own time.

When you become pregnant you celebrate, pick out nursery themes, and argue over baby names. You don’t think about the chances of having a child with special needs, and you most certainly don’t think about what you would do if you had to raise your child on your own. Yet here I am raising a child rocking an extra chromosome, as single parent.

It doesn’t matter why or how my marriage failed. It’s not really anybody’s business to be blunt. All that matters now is that it did fail, and it’s over, and in the last three months since he left I’ve had to overcome a lot raising Oliver on my own. Three months. When you say it out loud it doesn’t sound like much time, but it has been an eternity since that day. I’ve learned so much about myself, my faults, my issues, but I learned something else through all of this, I am strong.

When you become a single parent everything changes, literally everything. How you eat, how you clean, the bathroom becomes an oasis of peace, until you realize Oliver can army crawl now and you see his adorable little face scooting through the door frame. You must rely solely on yourself. At first it’s petrifying, relying on no one but yourself. Through the late night crying and sick days, there is no one to turn to. There are no breaks, only quick opportunities to shove food in your face or take a relaxing 90 second shower while he cries at the bottom of the tub pulling on the shower curtain because he cant see you.

At first you sit on the floor crying, holding your chest because you can literally feel your heart tearing apart. But then you have to get up, because your son needs you. Little things cause those massive tears that leave you clutching for your chest. When he learns something new and there is no one to turn and look at to celebrate with, or when he is up all night crying and you are exhausted, those are the moments when you feel the most alone. But then something happens. You remember that the heart is a muscle and each one of those tears wasn’t you breaking, but building a stronger, thicker heart.

The once petrifying idea of relying on yourself becomes your strength. The knowledge that you can and will survive builds inside you like warm embers knowing that you can make it on your own. My son is happy; he has been and always will be my number one priority. I am still broken, but the large gaping wholes I could once feel eating at me like endless voids are now but cracks within me.

I am on my own now in this journey, my sons advocate more than ever before. My neon signs burns bright more frequently now, but I embrace what is to come. This is my path now. My Oliver is my future. And just like my son, I will heal and grow and succeed in my own time.

Sensory Processing Disorder

   
  
 
  
    
  
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    When you have a child with special needs a new diagnosis is like finding a needle in a needle stack. With every new issue you take a deep breath and by the time you exhale your pity party is over and you begin the “what do we do about it” phase. That one deep breath is all you get, you can’t break down for an entire day, issues arise too often, reminders are constant, and if you broke down every time the halogen of that damn neon sign lit up you would never get anything done.  When Oliver first started showing signs of an SPD, or sensory processing disorder, I thought he was discovering new ways of moving his body. It started simple with waving his hand in front of his face, then tapping his thumb into the opposite palm like he was jamming his finger, then rocking, and finally when I realized something was wrong he was whacking his head on the back of his high chair and laughing while he did so.  When your child has special needs you are constantly meeting new doctors, nurses, aids, therapists, etc. and you begin to notice a trend about the people that are poking and prodding your child. Some of these people simply take vitals and move on, but there are others that make this journey easier, that you give your complete trust to not just because you have to, but because you want to. You can confide in them every outlandish worry and they never look at you like you are crazy. They take every concern as an  honest  concern and do everything they can to help you. Oliver is lucky enough to have one of these people in his physical therapist Michael. When most people would think that you are looking for something out of nothing when you say you are concerned that your son is waving his hand in front his face, Michael didn’t and he helped me find answers. He gave me a simple sensory survey to fill out and from there diagnosed Oliver with an SPD.  Every thing around us gives us sensory input, the things we hear, see, touch, taste, smell, makes sense right? When our sensory processing functions correctly everything we sense enters our body through our spinal cord, goes up through the brain stem, and then enters the brain as signals that release hormones that make us happy, calm, at ease, etc. When you have an SPD the flow from brain stem to brain is either clogged or flowing too freely. When it is clogged you search for more input to unclog the jam and release those hormones, and when it flows too freely you have trouble handling things like loud noises, flashing lights, or even the feel of some fabrics.  Oliver needs more input, so we now do a therapy called “predictable input”. When you bounce your child on your knee to a certain rhythm after a few bounces the child comprehends that next up is another bounce, then another, and another. So for therapy we do those types of repetitious movements such as throwing Ollie up in the air and catching him, big bear hugs that last three seconds, pause for five seconds, then another three-second hug, you get the idea. Every session ends with joint compressions of the knee, hip, elbow, and shoulder. We do this for 3 to 5 minutes every 3 hours.  I want to do everything I can to better my sons life but I would be lying if I didn’t have an internal pity party for myself when I heard those numbers. What I wanted to say was:   I mean we already do physical therapy every day, and we just integrated occupational therapy, which is a good 10-minute process I have to do before he eats. Every. Single. Time. And now I have to remember to do this every three hours as well? I should just set reminders on my phone so they can go off every two and a half minutes!    But what I said was:   Sounds great can’t wait to see how this therapy helps (smiles widely to hide the panic of trying to remember all of these things).   What I can say is that since integrating the therapy I have seen a change in Oliver and it’s only been a few weeks. His rocking has almost stopped completely, and he no longer likes to whack his head on the back of his high chair, which is a great relief for me. I’m not going to pretend like we do this therapy every three hours like clock work, but it gets done as often as I possibly can being on my own.  The thing that terrifies me the most about his SPD is the A word, Autism. A child can have an SPD and be a “typical child” otherwise,  but  every single child with Autism has an SPD. You can have an SPD with Down syndrome, but it doesn’t happen all of the time and when it does you can more than likely contribute it to their low muscle tone. So, having an SPD does not mean that Oliver is autistic, but it also doesn’t mean that he isn’t. An SPD can be a sign of Autism, but it isn’t a diagnosis. That is something we will have to wait and see about. He has not other signs or symptoms of being autistic so I am hopeful we wont have to add it to his list of ailments.  There is a chance Oliver will have his SPD his entire life, or it could diminish with time. One thing is for sure though; if we did not intervene and begin this therapy he would have continued to search for ways to find input, which would most likely have led to him harming himself. One thing I am learning very quickly as a mother of a special needs child is that no concern is too ridiculous to ask about. We are their voice, their advocates for these things. I went back and forth about bringing up something that seemed so justifiably Oliver just being a baby, but it turned out to be something much larger. Trust your instincts as their parent and bring up your concerns, and if you aren’t lucky enough to have an amazing therapist or doctor in your life keep searching until you find someone that will listen to you, because a concern that you think might make you sound crazy could save your child’s life.

When you have a child with special needs a new diagnosis is like finding a needle in a needle stack. With every new issue you take a deep breath and by the time you exhale your pity party is over and you begin the “what do we do about it” phase. That one deep breath is all you get, you can’t break down for an entire day, issues arise too often, reminders are constant, and if you broke down every time the halogen of that damn neon sign lit up you would never get anything done.

When Oliver first started showing signs of an SPD, or sensory processing disorder, I thought he was discovering new ways of moving his body. It started simple with waving his hand in front of his face, then tapping his thumb into the opposite palm like he was jamming his finger, then rocking, and finally when I realized something was wrong he was whacking his head on the back of his high chair and laughing while he did so.

When your child has special needs you are constantly meeting new doctors, nurses, aids, therapists, etc. and you begin to notice a trend about the people that are poking and prodding your child. Some of these people simply take vitals and move on, but there are others that make this journey easier, that you give your complete trust to not just because you have to, but because you want to. You can confide in them every outlandish worry and they never look at you like you are crazy. They take every concern as an honest concern and do everything they can to help you. Oliver is lucky enough to have one of these people in his physical therapist Michael. When most people would think that you are looking for something out of nothing when you say you are concerned that your son is waving his hand in front his face, Michael didn’t and he helped me find answers. He gave me a simple sensory survey to fill out and from there diagnosed Oliver with an SPD.

Every thing around us gives us sensory input, the things we hear, see, touch, taste, smell, makes sense right? When our sensory processing functions correctly everything we sense enters our body through our spinal cord, goes up through the brain stem, and then enters the brain as signals that release hormones that make us happy, calm, at ease, etc. When you have an SPD the flow from brain stem to brain is either clogged or flowing too freely. When it is clogged you search for more input to unclog the jam and release those hormones, and when it flows too freely you have trouble handling things like loud noises, flashing lights, or even the feel of some fabrics.

Oliver needs more input, so we now do a therapy called “predictable input”. When you bounce your child on your knee to a certain rhythm after a few bounces the child comprehends that next up is another bounce, then another, and another. So for therapy we do those types of repetitious movements such as throwing Ollie up in the air and catching him, big bear hugs that last three seconds, pause for five seconds, then another three-second hug, you get the idea. Every session ends with joint compressions of the knee, hip, elbow, and shoulder. We do this for 3 to 5 minutes every 3 hours.

I want to do everything I can to better my sons life but I would be lying if I didn’t have an internal pity party for myself when I heard those numbers. What I wanted to say was:

I mean we already do physical therapy every day, and we just integrated occupational therapy, which is a good 10-minute process I have to do before he eats. Every. Single. Time. And now I have to remember to do this every three hours as well? I should just set reminders on my phone so they can go off every two and a half minutes!

But what I said was:

Sounds great can’t wait to see how this therapy helps (smiles widely to hide the panic of trying to remember all of these things).

What I can say is that since integrating the therapy I have seen a change in Oliver and it’s only been a few weeks. His rocking has almost stopped completely, and he no longer likes to whack his head on the back of his high chair, which is a great relief for me. I’m not going to pretend like we do this therapy every three hours like clock work, but it gets done as often as I possibly can being on my own.

The thing that terrifies me the most about his SPD is the A word, Autism. A child can have an SPD and be a “typical child” otherwise, but every single child with Autism has an SPD. You can have an SPD with Down syndrome, but it doesn’t happen all of the time and when it does you can more than likely contribute it to their low muscle tone. So, having an SPD does not mean that Oliver is autistic, but it also doesn’t mean that he isn’t. An SPD can be a sign of Autism, but it isn’t a diagnosis. That is something we will have to wait and see about. He has not other signs or symptoms of being autistic so I am hopeful we wont have to add it to his list of ailments.

There is a chance Oliver will have his SPD his entire life, or it could diminish with time. One thing is for sure though; if we did not intervene and begin this therapy he would have continued to search for ways to find input, which would most likely have led to him harming himself. One thing I am learning very quickly as a mother of a special needs child is that no concern is too ridiculous to ask about. We are their voice, their advocates for these things. I went back and forth about bringing up something that seemed so justifiably Oliver just being a baby, but it turned out to be something much larger. Trust your instincts as their parent and bring up your concerns, and if you aren’t lucky enough to have an amazing therapist or doctor in your life keep searching until you find someone that will listen to you, because a concern that you think might make you sound crazy could save your child’s life.

One Year Check Ups And Why They Suck

   
  
 
  
    
  
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       WARNING: THIS RANT MAY NOT BE SUITIBLE FOR THE EASILY OFFENDED OR THOSE WHO LACK SENSE OF HUMOR.  Check ups are obviously necessary as our children grow, but do they really have to be so frustrating? I get it, he is short, his head is small, he doesn’t weigh that much. And oh look yay they just opened up the milestone checklist, can’t wait to say  no  23 times in a row. What is the point of those charts anyways? To see if my child is behind and needs therapy? Whoa, thank you so much for figuring that out for me, I’m glad he’s been getting therapy the last 12 months simply because we thought it would be fun!  I understand that nurses are just doing their jobs when they mention Oliver’s head circumference is in the 10th percentile and I understand that they have to read off each milestone on that chart normally, but if you couldn’t tell, we aren’t normal. I know you think that this list helps us determine where our children are at almighty nurse lady but since the giant bolded letters in my sons chart say  Down syndrome  do you think you could, I don’t know, use your instincts on the whole:    Is he walking yet?        Feeding himself?     Had his first Supreme Court trial as one of the hottest up and coming lawyers in the country?     Saying mama?   And realize that he isn’t doing  any  of those things yet, espeically since the last time you asked and he wasn’t even crawling yet. Which he still isn’t doing by the way, don’t forget to check the  no  box for that one too.  Sigh.

 

WARNING: THIS RANT MAY NOT BE SUITIBLE FOR THE EASILY OFFENDED OR THOSE WHO LACK SENSE OF HUMOR.

Check ups are obviously necessary as our children grow, but do they really have to be so frustrating? I get it, he is short, his head is small, he doesn’t weigh that much. And oh look yay they just opened up the milestone checklist, can’t wait to say no 23 times in a row. What is the point of those charts anyways? To see if my child is behind and needs therapy? Whoa, thank you so much for figuring that out for me, I’m glad he’s been getting therapy the last 12 months simply because we thought it would be fun!

I understand that nurses are just doing their jobs when they mention Oliver’s head circumference is in the 10th percentile and I understand that they have to read off each milestone on that chart normally, but if you couldn’t tell, we aren’t normal. I know you think that this list helps us determine where our children are at almighty nurse lady but since the giant bolded letters in my sons chart say Down syndrome do you think you could, I don’t know, use your instincts on the whole:

 Is he walking yet?  

Feeding himself?

Had his first Supreme Court trial as one of the hottest up and coming lawyers in the country?

Saying mama?

And realize that he isn’t doing any of those things yet, espeically since the last time you asked and he wasn’t even crawling yet. Which he still isn’t doing by the way, don’t forget to check the no box for that one too.

Sigh.

The Neon Sign

   
  
 
  
    
  
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       As a parent of a child with a disability when you first get the diagnosis, it’s the only thing on your mind. It’s the only thing you talk about, worry about, obsess over. But then your child is born and everything changes. Their disability is the furthest thing from your mind, you hold them in your arms, you see their first smile, hear their first laugh. You forget for a while that there is anything even wrong with them, until one day you see your friend’s child, who is younger than yours, accomplishing milestones your child isn’t even interested in trying yet, or worse, your child has their first seizure, or fails their hearing test.  For me, every new diagnosis knocks me on my ass. Oliver’s disability is like a giant neon sign following me around flashing the words Down syndrome so brightly that it inhibits me from seeing the rest of the world. Oliver’s list of problems grows with each passing month, and while none of them are life threatening the longer the list gets, the harder I have to fight to get that flashing sign out of my periphery.  A few days ago out of the blue the bright neon flickered out of the corner of my eye when I least expected it. Oliver’s biggest issue is his low muscle tone, he only sits up straight for as long as he deems necessary and the rest of the time he looks like he’s in a constant yoga pose called the folded lawn chair. On this particular day he sat up in both a cart at Target and a high chair at lunch. I was so proud of my Ollie and we had a quiet celebration of his accomplishments. But then another baby came into the restaurant that couldn’t be more than six months old and he flipped the switch of my neon sign and blinded me with its bright lights. While Oliver gags on the smallest of non “stage two” pureed foods, this baby was eating everything he could get his hands on. As I saw him cry and reach for the plate of food in front of him that neon sign floated towards me getting brighter and brighter, as it does sometimes, and smacked me right in the forehead.  That’s the thing about your child having a disability; you don’t see it until you are reminded of it, until the switch is flipped and the halogen fills the tubes of that brightly lit sign. You can be celebrating your child’s accomplishments one minute and the next someone says that your child is shockingly small for being one year old. Or they ask if he’s walking and you say no, then they exclaim, “Oh, well crawling then”, and you sigh and your eyes squint from the bright lights of your sign and you explain, no not yet but he’s so close even though he’s no where near it.  It’s funny, these little lies we tell as parents of children with disabilities. These lies aren’t for us, but the people around us. We know that our children will get where they need to be, we tell these lies to calm our family and friends. As time goes on our neon signs become a familiar face, the little lies get easier, their accomplishments become that much more important, and we know that when they say that first word, eat their first cheerio, and take their first step that we can turn off our neon signs for a few moments and smile because we knew they would get their, in their own time.

 

As a parent of a child with a disability when you first get the diagnosis, it’s the only thing on your mind. It’s the only thing you talk about, worry about, obsess over. But then your child is born and everything changes. Their disability is the furthest thing from your mind, you hold them in your arms, you see their first smile, hear their first laugh. You forget for a while that there is anything even wrong with them, until one day you see your friend’s child, who is younger than yours, accomplishing milestones your child isn’t even interested in trying yet, or worse, your child has their first seizure, or fails their hearing test.

For me, every new diagnosis knocks me on my ass. Oliver’s disability is like a giant neon sign following me around flashing the words Down syndrome so brightly that it inhibits me from seeing the rest of the world. Oliver’s list of problems grows with each passing month, and while none of them are life threatening the longer the list gets, the harder I have to fight to get that flashing sign out of my periphery.

A few days ago out of the blue the bright neon flickered out of the corner of my eye when I least expected it. Oliver’s biggest issue is his low muscle tone, he only sits up straight for as long as he deems necessary and the rest of the time he looks like he’s in a constant yoga pose called the folded lawn chair. On this particular day he sat up in both a cart at Target and a high chair at lunch. I was so proud of my Ollie and we had a quiet celebration of his accomplishments. But then another baby came into the restaurant that couldn’t be more than six months old and he flipped the switch of my neon sign and blinded me with its bright lights. While Oliver gags on the smallest of non “stage two” pureed foods, this baby was eating everything he could get his hands on. As I saw him cry and reach for the plate of food in front of him that neon sign floated towards me getting brighter and brighter, as it does sometimes, and smacked me right in the forehead.

That’s the thing about your child having a disability; you don’t see it until you are reminded of it, until the switch is flipped and the halogen fills the tubes of that brightly lit sign. You can be celebrating your child’s accomplishments one minute and the next someone says that your child is shockingly small for being one year old. Or they ask if he’s walking and you say no, then they exclaim, “Oh, well crawling then”, and you sigh and your eyes squint from the bright lights of your sign and you explain, no not yet but he’s so close even though he’s no where near it.

It’s funny, these little lies we tell as parents of children with disabilities. These lies aren’t for us, but the people around us. We know that our children will get where they need to be, we tell these lies to calm our family and friends. As time goes on our neon signs become a familiar face, the little lies get easier, their accomplishments become that much more important, and we know that when they say that first word, eat their first cheerio, and take their first step that we can turn off our neon signs for a few moments and smile because we knew they would get their, in their own time.

In His Own Time

   
  
 
  
    
  
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       When we received Oliver’s diagnosis I wanted to write about our journey, to educate our friends and family, to use as a keepsake, and hopefully as a comfort to others going through this unknown journey as well. Soon after Oliver was born my blog posts dwindled and were replaced by doctor’s appointments and therapy sessions until they disappeared all together, but the idea of writing never left my mind. So, here I am, one year later, inspired by my son to tell his journey once more. He might not be a typical one year old. He can’t hold his own bottle or feed himself cheerios, he isn’t walking, or even crawling for that matter, but he is working every single day to get there, and I know he will, in his own time.  We are only three days away from Oliver’s first birthday and I can’t believe it’s already here. This little boy playing on the floor in front of me is my miracle, my savior, my lesson from God, or whatever higher power you believe in, that we don’t know how much we can handle until we are faced with it. Joe and I did not plan our pregnancy. Heck, I even took the Plan B pill when we had our, for lack of better words, oopsie. But Oliver wasn’t having that, it was his time to be alive, to teach me what love really feels like, and to make an impact on this world.  I will never forget what it felt like getting his diagnosis. I was at work when I got the call. The days leading up to the results were gut wrenching. Everyone around me acted like their was nothing to worry about, the doctor told me to not even take the test because there was no way it was going to come up positive, I guess deep down my motherly instincts knew that no matter what anyone said, I needed to take that test.  When I hung up the phone it felt like the wind was knocked out of me. I grabbed my purse and with tears rolling down my face I frantically told my boss I had to leave and I ran out as fast as I could. On my way home I screamed, screamed as loudly as I could. I held my belly and cried and prayed, something I don’t normally do. I cried over and over, “Please God not my baby, not my baby boy”. I wish I could tell that version of me to stop crying and stop asking God to change her unborn son. I wish I could open her eyes to the beauty of her child, I wish I could tell her she is stronger than she ever thought she could be. I wish I could show her how amazing life is now. It comes with its struggles and some days are bad, but the good days make life worth living.  I cannot wait to share Oliver’s journey with you, but until then I will leave you with the first post I ever wrote about this amazing child of mine.   These last few weeks have been a roller coaster for Joe and I. When we got our first ultrasound for baby there was a shiny spot seen on his heart. Something that is rather common, but we were told to go to a high risk OB just to rule out any problems. We went, and were told that sometimes that shiny spot is correlated with down syndrome, but our chances of having a baby with DS was .14%. We were given the option to have a new blood test that tells us with 99% accuracy if our baby has Down syndrome, even though our numbers were so low we decided to have the test done anyways. Last week the test came back positive, we were shocked to say the least, and last Tuesday we had an amniocentesis done to make sure the results were what they were. The amnio results came back today, and our little baby boy does have Down syndrome. We also had a heart test done on the baby since heart problems are high in Downs babies, but we are blessed to say that his heart and all other physical aspects of our baby are 100% healthy We have had time to process over the last few weeks that this could be the outcome, and together with our amazing support system of family and friends we know we will all be okay. I cry for my baby’s struggles, and I cry for fear of his health, but I do not cry about him. He is our blessing. There are risks that come with the 3rd trimester for a chance of a stillborn but we are taking every precaution to prevent that, including bi-weekly check ups. We have a rough road ahead of us, but I am so thankful that I have my best friend, my Joe, by my side who continues to tell me “we got this” and I look into his eyes, and I know we do.

 

When we received Oliver’s diagnosis I wanted to write about our journey, to educate our friends and family, to use as a keepsake, and hopefully as a comfort to others going through this unknown journey as well. Soon after Oliver was born my blog posts dwindled and were replaced by doctor’s appointments and therapy sessions until they disappeared all together, but the idea of writing never left my mind. So, here I am, one year later, inspired by my son to tell his journey once more. He might not be a typical one year old. He can’t hold his own bottle or feed himself cheerios, he isn’t walking, or even crawling for that matter, but he is working every single day to get there, and I know he will, in his own time.

We are only three days away from Oliver’s first birthday and I can’t believe it’s already here. This little boy playing on the floor in front of me is my miracle, my savior, my lesson from God, or whatever higher power you believe in, that we don’t know how much we can handle until we are faced with it. Joe and I did not plan our pregnancy. Heck, I even took the Plan B pill when we had our, for lack of better words, oopsie. But Oliver wasn’t having that, it was his time to be alive, to teach me what love really feels like, and to make an impact on this world.

I will never forget what it felt like getting his diagnosis. I was at work when I got the call. The days leading up to the results were gut wrenching. Everyone around me acted like their was nothing to worry about, the doctor told me to not even take the test because there was no way it was going to come up positive, I guess deep down my motherly instincts knew that no matter what anyone said, I needed to take that test.

When I hung up the phone it felt like the wind was knocked out of me. I grabbed my purse and with tears rolling down my face I frantically told my boss I had to leave and I ran out as fast as I could. On my way home I screamed, screamed as loudly as I could. I held my belly and cried and prayed, something I don’t normally do. I cried over and over, “Please God not my baby, not my baby boy”. I wish I could tell that version of me to stop crying and stop asking God to change her unborn son. I wish I could open her eyes to the beauty of her child, I wish I could tell her she is stronger than she ever thought she could be. I wish I could show her how amazing life is now. It comes with its struggles and some days are bad, but the good days make life worth living.

I cannot wait to share Oliver’s journey with you, but until then I will leave you with the first post I ever wrote about this amazing child of mine.

These last few weeks have been a roller coaster for Joe and I. When we got our first ultrasound for baby there was a shiny spot seen on his heart. Something that is rather common, but we were told to go to a high risk OB just to rule out any problems. We went, and were told that sometimes that shiny spot is correlated with down syndrome, but our chances of having a baby with DS was .14%. We were given the option to have a new blood test that tells us with 99% accuracy if our baby has Down syndrome, even though our numbers were so low we decided to have the test done anyways. Last week the test came back positive, we were shocked to say the least, and last Tuesday we had an amniocentesis done to make sure the results were what they were. The amnio results came back today, and our little baby boy does have Down syndrome. We also had a heart test done on the baby since heart problems are high in Downs babies, but we are blessed to say that his heart and all other physical aspects of our baby are 100% healthy We have had time to process over the last few weeks that this could be the outcome, and together with our amazing support system of family and friends we know we will all be okay. I cry for my baby’s struggles, and I cry for fear of his health, but I do not cry about him. He is our blessing. There are risks that come with the 3rd trimester for a chance of a stillborn but we are taking every precaution to prevent that, including bi-weekly check ups. We have a rough road ahead of us, but I am so thankful that I have my best friend, my Joe, by my side who continues to tell me “we got this” and I look into his eyes, and I know we do.