Tag Archives: parenting special needs

To The Strangers Who Became Part of Our Family

Five years ago, four people entered our lives as strangers. I knew nothing about them, I knew nothing about what they did, I only knew that our doctors in NICU wanted us to see them all. We were new to this world of therapy and special needs. We were still convinced there was nothing “wrong” with our little boy and didn’t see what all of the doctors saw. I was hesitant to let them in our home and trying to fit them all in to our schedule was stress upon stress.

The first to arrive was our Physical Therapy Supervisor, Mary Elizabeth. She was kind and patient. Most importantly she gave me hope. I remember her telling me that “on paper” she expected to see a child doing far worse than Braxton. It wouldn’t be until years later that she told me that in the early days she wasn’t sure Braxton would make it and she wasn’t sure what she could expect from him. Nevertheless, she never let that show. She never gave up on him and she guided us on this journey. She never treated him like a terminally ill child. She helped us build the rest of our team and ensured Braxton received the medical care he deserved. I’ll never forget how with one phone call a Genetics appointment scheduled in November was moved up to August to start us on our diagnostic journey. When the switch finally flipped for Braxton and again when we got our diagnosis and learned Braxton was definitely not terminal, she continued to make sure we were on target developmentally and set goals to get Braxton to reach higher and higher.  At that first visit she told me it would be her partner, Gil, coming to work with Braxton.

Braxton working with Gil on our playset

Braxton working with Gil on our playset

When Gil arrived,  I was hesitant because apparently I had seen too much Oprah and I’ll admit I was worried about having a male in my house when my significant other was away. But, that was pretty foolish. Gil is a Physical Therapy Assistant, but let me tell you, he has been an invaluable member of our team. “Assistant” is so misleading. With the years of experience he’s had, there is no one else I would have wanted on our team. He was so gentle and patient with Braxton. And in his spare time he likes to dress up as a Superhero – who doesn’t want a superhero on their team!? We made S-L-O-W progress at first, but Gil always pushed Braxton forward. I have a 5 minute video of Braxton TRYING to roll over. And video of Braxton up on his hands and knees rocking back and forth TRYING to crawl. Five years later and Braxton is knocking Gil over as he rears up and smacks him in the chest wrestling with him. He is walking independently, climbing stairs – well, climbing everything really! The progress he has made is truly amazing.

Braxton with Gil and Mary Elizabeth

Braxton with Gil and Mary Elizabeth

Aileen Feeding Braxton for the first time

Aileen Feeding Braxton for the first time

Shortly after Physical Therapy started, we still did not have a Speech therapist on board and Braxton needed help with feeding. I had no idea that Speech therapists could work on more than speech! Mary Elizabeth came to our rescue and called in a friend and colleague. Lesli didn’t have any openings at first and I remember that she came out on a Saturday to do Braxton’s evaluation. Within a few weeks, she had a space open up for Braxton (or she made one!) and we began working on bottle feeds. With her help, Aileen got to live out her big sister goal of helping to feed her brother. Bottle feeding did not last long as we learned Braxton was still aspirating (swallowing liquid in to his lungs), but we slowly worked back up to it, until Braxton just decided he didn’t want a bottle anymore. When we introduced baby foods, Braxton’s progress was miniscule. We celebrated BITES and when he ate HALF AN OUNCE. Now, Braxton eats 16-20 OUNCES EVERY MEAL!  You would never guess he was a kiddo with such great feeding difficulties. We had a few regressions in there, but Lesli never gave up. She never let us give up. We continued to press forward and here we are with a hungry little man on our hands. We did also work on Speech and although we never really got any words from Braxton, we started on the road  with Alternative and Augmentative Communication (AAC). Braxton is now using an iPad with Speak for Yourself to communicate with us. He is still not using it as much as we’d like, but he’s made really great progress.

The last to join our team, was Elizabeth, our Occupational Therapist. OT is apparently really difficult to find! Thankfully, OT and PT look very similar in the early months, so we weren’t in too much of a rush initially. Elizabeth has always been super patient with Braxton. Fine motor skills are definitely one of Braxton’s biggest struggles and his progress has been very, very, slow. (It took 3 years to get him clapping!) But, Elizabeth never seemed discouraged or frustrated. She worked with Braxton at his pace, always pushing him a bit further out of his comfort zone. And she has always spoken to Braxton as if he understands everything she is saying and expecting more from him, because we knew he was capable of more! Braxton has made a lot of really good progress with his fine motor skills and we know he is ABLE to do so much, but whether he actually WANTS to or will perform is a different story. We know he can build block towers, but he prefers to pretend he’s going to put the block on top and then throws it at the last second in protest. He has certainly kept Elizabeth on her toes and she developed some super quick reflexes!

Braxton working with Elizabeth and Lesli.

Braxton working with Elizabeth and Lesli.

After having worked with this incredible team for the last five years, this week has been pretty difficult for us as it has all come to an end.  Braxton is starting Kindergarten next week and unfortunately, our team can no longer see him as our schedules just don’t match. When we moved outside of their service area, they all moved with us to stay with Braxton. So, I know if there were any way to work it out, they would. But, sadly we weren’t able to make it work and we have had to say goodbye to everyone this week.

As I prepared myself to let them all go, I thought back to the days when we all started together. How worried we were. How clueless we were. Over the years, they became part of our family and were no longer strangers. I’ve learned about their families, met their children, commiserated together over school woes, cried together, and laughed together. They’ve watched my little man grow from this small baby who didn’t even fill up a couch cushion to this wild child climbing on tables and chairs, running away to hide from therapy. Every week, twice a week, for an hour each visit they’ve been in our home. It might not seem like much, but it adds up quickly and as the years pass so much life has been lived.

I am forever grateful to this team of people who helped us with our son. Taught us the things we needed to do to help him succeed. They helped to empower me and showed me how to be an advocate for my son. As we move forward to this next chapter, I look forward to the progress Braxton will make with our new therapists thanks to the strong foundation we have built with this one-of-a-kind team.  Thank you all, each and every one of you for all that you have done for Braxton and our family. I hope the small tokens we gave you will remind you of Braxton and remind you on the hard days that someone is grateful for you and you are making a difference. ❤

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Happy Tubie-versary!

Today marks 3 years since Braxton’s very first surgery, which was to place his G-tube.  Braxton was just 2 weeks old and still in NICU when it was placed.  You can read all about the Day Braxton Became a Super Tubie from last year’s post.

We have come a very long way in 3 years.  I still remember everything about the day we were told he would need a tube and the day of surgery. When his button was first placed, we honestly had no idea how long Braxton would need his tube and the doctors could not provide anything other telling us he would need to have it “long-term.” We have had many struggles with eating over the past few years and we are very grateful that Braxton has had his tube all this time.  His tube has allowed us to feed him even when he is sick, give him medicine when needed, and make sure he gets the nutrition he needs to gain weight in a healthy manner.

Braxton climbing in to his chair getting ready to eat!

Braxton climbing in to his chair getting ready to eat!

Braxton is finally eating by mouth, something we weren’t sure if he’d ever really be able to do.  He is eating about 30-40 ounces of pureed foods every day! He gets about 1100-1300 calories per day and we supplement with a multi-vitamin to make sure he is getting everything he needs nutrition wise.  We haven’t had to use his tube for food in quite some time, which is a magnificent feat! Braxton even tells us when he is hungry now, which is HUGE for a tube-fed child! Because children with feeding tubes are usually kept on such a strict schedule, they do not know or understand what it means to be hungry.  Braxton still does not speak, but he will “tell us” he is hungry by going over to his feeding chair, climbing in, and he will sit there until we notice him. If it’s not quite fast enough for him he will start to whine/cry to let us know “hey! I’m really hungry over here!” He’s eating every 2-3 hours right now and his schedule was every 4 hours before, so he is really understanding what food is and what it means to be hungry. He truly enjoys eating now, and that is fantastic!

We still use Braxton’s tube for fluids because he isn’t quite drinking anything by mouth yet.  We have been working on straw drinking in therapy and he has drank up to an ounce! We’re working on different flavors and increasing that volume.

So, we truly know now that Braxton will not need his tube forever, but it’s still not going to be taken out soon.  We want Braxton to be fully drinking on his own and eating “table food” before we remove his tube.  We are making significant strides in the right direction.

Braxton, Super Tubie!

Braxton, Super Tubie!

The other day, I saw a post on the Feeding Tube Awareness Foundation’s website about an interview with siblings of children who are tube-fed and found their perspective very interesting! Since special needs and things like tube-feeding really effect the whole family, the FTA group brought in this sibling perspective.  This inspired me to talk to Aileen about her brother’s tube and see what she knew and what she thought about his g-tube.  I recorded the conversation and thought it would be great to share in honor of his tubie-versary!

Enjoy!

 

 

 

 

 

 

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We Should Have Known Sooner

SearchingEvery year, when Braxton’s birthday rolls around, I am full of emotions as I look back on our journey and see how far we’ve come.  This year, that is paired with all of our annual appointments with doctors we haven’t seen in 6 months to a year.  Some still didn’t know Braxton had finally received a diagnosis.

 

 

Doctor: “Did you all ever receive any additional information about a possible diagnosis?”

Me: “Oh, yes we did.  Braxton has Rubinstein-Taybi Syndrome.” 

Doctor: “Oh yea? I have a few patients with that.”

Me: “Umm..that you see currently?”

Doctor: “Absolutely.”

That has been the conversation at more appointments recently than I even want to tell you.  The doctor then proceeds to tell me about all of the things kids with RTS are at risk for from their specialty standpoint.  Outwardly, I am thankful they have heard of RTS and know what to expect.  Inwardly, I’m  furious and screaming.  You knew about RTS? You KNEW this whole time? The WHOLE TIME?! Why on Earth wouldn’t you have said anything before? Did you ever even look at my child!? Just a series of completely flabbergasted questions.

Almost ALL of our specialists very nonchalantly have said they are familiar with RTS and spout off all of these things about other patients.  Our anesthesiologist at Braxton’s tonsillectomy guessed RTS just from looking at the symptoms on Braxton’s chart.  Huh? So why did it take us 2 years to find out!?

I wish I knew why it took so long.  I guess, we know Braxton doesn’t fit “in the box” exactly, but is it really necessary for a child to check off every symptom before a doctor comes to a diagnosis? There was always enough information to make the diagnosis, but it was overlooked.  Even when it was brought directly to their attention, the doctor said “Welllll….he doesn’t really fit because x, y, and z” So because Braxton did not check off a few specific symptoms, we were left in the dark.

Yes, I am thankful and relieved to finally have an answer NOW, but do you know how nice it would have been to know earlier? It would have saved so much fear and heartache.  Sleepless nights where I sat up and watched Braxton sleep, just hoping that he wouldn’t stop breathing or be taken away from us as the doctor’s predicted.  Tireless hours of researching and contacting other parents.  Appointment after appointment where doctors just scratched their head and said come back in 6 months, we’ll see what’s developed.  The NICU doctor didn’t give my kid a month to live and you want me to wait six? What if we don’t have that long?

Braxton looks just like so many other kids with RTS, why didn’t anyone notice it before? Especially when they are currently seeing patients with the same diagnosis.  All RTS kiddos look like they could be related.  Sure, you see some of their parents in them, but their resemblance to one another is striking.

To me, there is no reason why another doctor could not have even hinted at this diagnosis. They spout off statistics and potential problems on a whim, so it’s not like RTS is so rare and unknown to them that they could not have suspected it enough to tell me.  This is the part that is so frustrating to me about our medical system.  Don’t get me wrong, I really love all of our doctors and they have done so much for us, but they’ve also let us down.  When yet another doctor tells me about the MULTIPLE patients they see, I can’t help but be frustrated and upset.

I think that is another reason why I have been so passionate about this Undiagnosed documentary.  Knowing that there are other patients out there like us, who end up being diagnosed with something that is uncommon, but something that there is enough information available for that shouldn’t require such a prolonged diagnostic journey (be it 2 years or 7).  With more awareness and a greater understanding of what life is like, the fears we face, and the struggles we have, maybe the medical community would move toward better networking and the development of an Undiagnosed Disease Registry.  These are things that could save a child’s life and spare a parent the fear of the uncertainty the future might hold, yet they don’t exist.

I am so hopeful for this film and hope that it comes to fruition. And while I don’t think our journey should have taken so long, I’m thankful for the road we have walked because now I can help others and be a voice for them.  Perhaps, like everything in our life, our journey was prolonged for a purpose. I hope that I am fulfilling that purpose through sharing our story and being an advocate for my son and the countless families who have walked this path before me and those who will follow.

 

 

 

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Letting Go Of The Guilt

I worked on my “Letter to NICU Parents” for a few weeks and even after I wrote it, I read it about 20 times.  Then, something jumped out at me. I left something really important out.  A feeling that I felt then and occasionally still haunts me. A feeling I’m sure lots of new parents in NICU feel.   (And probably some people who are years into the journey).

Guilt.

The idea that I must have done something wrong for this to happen to my child.  Not necessarily Karma coming back to bite you, (although I think some people go there as well). But, when you learn that your child has a congenital anomaly or some kind of change in their gene structure, you immediately feel like it’s your fault.   After all, it’s genetics, right? And genetics are passed on, so it must mean it came from you.

New parents, I want you to know that you didn’t do anything wrong.  You didn’t do anything to “deserve” this.  These things just happen and its just the right combination of genes and circumstances.

Mom and Brax in NICUI remember sitting there in the NICU not wanting to tell anyone what was going on because they would automatically assume that I didn’t take care of myself when I was pregnant or that I had done something that wasn’t safe.  In reality, I took better care of myself while carrying Braxton than I did when I had my older daughter.  I ate better, drank less caffeine, drank more water, exercise – eh not so much, but overall I did a better job.

 

Dad and Brax in NICUI remember talking to Joseph and over and over he said it was his fault.  He felt that maybe his job exposed him to radiation and he brought it home and passed it on to his son.  He works in the oil field and while radiation exposure is possible, it’s really not much worse than what we are subjected to every day.  He thought maybe it was due to his past battles with drugs, but other than alcohol, he hadn’t touched a drug in years so there was no way possible that could be the cause.

Then, finally, a few months after our NICU discharge, we got an appointment with the geneticist.  Talk about a guilt trip.  The first genetics appointment can be a little intimidating.  They want to know EVERYTHING and I do mean everything about your life story.  They want family pictures of anyone who might look like your child, if anyone had any congenital anomalies in the family tree, heart conditions, if anyone had a stroke under the age of 50, medications you took while pregnant, any traveling you did, and it just feels like the barrage of questions never ends.  By the end of it all, you’ve got a list of everything on your side of the family and everything on your significant other’s side of the family, and whether you want to admit it or not, subconsciously you look at the list and compare it – who has more things “wrong” with their family? Who did this come from? Is it my fault? Is it Dad’s fault? Which one of us has the faulty genes? Is there something I could have done to prevent this? Wait, Is it the doctor’s fault? Should he have seen something in the ultrasound? The internal questions never end.  You go on with your fears and your uncertainty. You try to hush the voices and just be grateful for the little boy or little girl you have in front of you, but the guilt lingers.

Guilt is like a ticking time bomb.  Just sitting there, stirring at the back of your mind, waiting to cause a fight.

When our geneticist finally told us she wanted to move forward with Whole Exome Sequencing I just knew this was going to give us the answers we needed.  When the counselor explained WES only provides a clear diagnosis for about 20% of those who are tested, that confidence wavered.  Four months of waiting was excruciating.  After 18 months, what’s another 4? But, when you are waiting on test results, it’s like the last hour right before you are supposed to get off work for vacation – it. takes. for-evv-errrrr. It feels like an eternity.  And again, subconsciously you hope it eases the guilt.

Our appointment to discuss results finally arrived 4 months after testing.  We were nervous, we were shaken, we were scared.  We could finally have an answer or know a whole lot of nothing.  Genetics is an area that is really difficult to understand.  There isn’t really a cut and dry kind of situation.  There seems to be a lot of gray areas.  We received our report and as the geneticist went through each of the variances, that imaginary checklist came back.  Variance number 1 (blah, blah, explanation, blah, blah) Mom is also a carrier.  Variance number 2 (ugh that’s one for me, blah, blah) Mom is also a carrier.  Variance number 3 (crap, it’s all my fault, I knew it was, blah, blah) Mom and Dad are carriers. Variance number 4 (ugh, he’s going to hate me, blah, blah) Dad is a carrier. Variance number 5 (ugh, now he thinks it’s all his fault, blah, blah) Dad is also a carrier….and so forth and so on until we finally reached the end of the report and both stared blankly tallying up our imaginary checklists.

Then, the geneticist finally goes on to say that these particular variances are what they call “Variances of Unknown Significance.” Genes that are known to cause deleterious conditions, but since mom or dad are also carriers it could just be the gene passing down without any issues or there could be issues later, she couldn’t really say for sure.  There was one gene that neither of us were carriers for and it was the one gene that explained all of Braxton’s issues.  This variance is known as a de novo mutation, meaning new, meaning that no one in our family is a carrier, meaning that it was no one’s fault, it’s just something that happened. The geneticist also explained that every single person in the world has gene variances.  If they performed WES on anyone, a whole list of genes would show up even in “perfectly healthy” people.  This is that gray area.  Some genes require that both parents be carriers in order for a disorder to appear, but how do you know that before you have a child? Are we supposed to just go around performing genetic tests on everyone before they have children? Sure, might seem like a good idea, but it’s not logical.

The fact is, there are lots and lots of babies who are born without any issues who carry all sorts of variances. And then there are some babies who have just the right variance to cause things to be not quite right.  Is it fair? No. Is there anything you can do about it? Well, not really.

For future children? Maybe.  Once you learn of a genetic variance, you can find out if it is something that can be passed on or if it is something that is a one time deal.  For us, we know we have a less than 1% chance of having another child with Rubinstein-Taybi Syndrome.  But, we also know that we are both carriers for a gene that causes deafness, so it is likely if we had another child that they would also have hearing problems.  Likely, but we are not completely certain.  Herein lies the issue with genetic testing.  How much is too much information? Do we really need to know all of the genes that are mutated? Does the doctor have the right to withhold genetic information that “we don’t need”?  But, those are all questions for another topic and another day.

We are grateful for the Whole Exome Sequencing.  It gave us the answers that we needed. I know that it doesn’t work that way for everyone.  Some people just get a list of genes and the doctor says “Well, here are all the variances we found, but we aren’t really sure how that fits your child’s picture” Say whaaa??  Those parents are still left in the dark, still searching for answers, still blaming themselves or looking for someone to lay blame with.  To those who are still searching and to those who have found answers, I have to say – stop blaming yourself.  Stop blaming your significant other.  There is nothing you could have done differently.  You might think you could have chosen a different partner, but who is to say that would have changed anything? Perhaps you would be fighting a different battle? A bigger battle? You never really know and playing the “what-if” game gets you nowhere.  Just angry and alone.

So, to all the parents in the NICU (and even some of us veterans) take a deep breath and let it go.  Yes, it is easier said than done, but you have to let it go.  Let the guilt go.  You are not a bad person, a bad parent, someone karma was after, someone God was after – nothing could have changed the circumstance.  Let go of the guilt so that you can move forward.

It is not your fault.  

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Letter to the NICU Parent Who Feels Out Of Place

When people talk about the NICU journey it is usually in reference to children who were born prematurely, but what many don’t know, is that there are many children who were born full-term (or pretty close to it) who end up in NICU due to congenital anomalies or other health issues.  We fall in to the second category.  I recently saw that a local non-profit requested letters to NICU parents from those who have been there that could be handed out as a welcome to families and to ease fears.  I knew I wanted to contribute because it seems like families in NICU for anything other than prematurity often get left out and feel like they don’t belong.  If I could hand a letter to parents in the NICU, this is what I would say to them. For those who also share this experience, what would you add? 

_____________________________________________________________

For parents of children in NICU who were born full term with congenital anomalies.

Dear NICU Parent,

First and foremost, Congratulations on the birth of your beautiful baby boy or girl!  Secondly, I’m sure this has already been quite the rollercoaster and is not at all what you were expecting.  Take a deep breath and know that YOU ARE NOT ALONE.  I have sat exactly where you are and felt many of the same emotions.  Our journey may be different, but we have many, many shared experiences.  I hope this letter helps to ease your worry and helps guide you down the first few steps of this new path.

Brax in NICU My son, Braxton, was born full term and we had absolutely no idea we would need to be worried about him once he was born.  Honestly, it was several hours before we knew anything at all.  To our knowledge, we had a perfectly healthy 8-pound baby boy.  Then, the neonatologist came in and our perfect little world came crumbling down.  She told us that our son’s blood sugar was very low because he would not take anything by breast or bottle.  She continued on to say that there were some features that pointed to some kind of syndrome.  His eyes were wide set, his nasal bridge was flat, his head was very small, his ring and pinky finger on both hands were fused together, and his toes were crossed.  She also thought she heard a significant heart murmur.  But, she could not definitively say he had a particular syndrome, only that he needed to be transported to another hospital to undergo testing.  12-hours after birth, my son was taken away to another hospital, without me.  I was devastated.  I’m sure you are too.

I remember sitting in the NICU thinking, my child does not belong here.  As I heard the nurse tell a mom that her son gained a few ounces and is now a whopping 4 pounds, my heart fell. Here I am with a giant 8-pound baby while the baby across from him is only half his size. I don’t belong here. I said this over and over.  I know now this period was critical in keeping my child alive and I am forever grateful to the experience in hindsight, but in that moment, I dreaded everything about it.

My son spent 3-weeks in that NICU and had a g-tube placed and many tests done to determine the genetic cause of his abnormalities.  The testing in NICU had no results.  We learned of some conditions that affected his eyes, heart and brain, but we had no cause and no prognosis.  After discharge, we began the marathon of therapies and specialists to help my son develop and to give us answers about what was causing his condition.  Braxton was 21-months old before we had an official diagnosis.  Now, he is almost 3 and doing extremely well.  Much better than the neonatologist who first saw him ever expected.  He is almost walking, he is finally eating by mouth and rarely uses his g-tube (we were told he’d need it for life), and he has taught us so much.  We were deathly scared and angered and saddened and every emotion that you could think of in the beginning.  We now know a joy like no other. Make no mistake, this journey is hard, but you can do it and it’s so worth it.

Here are some things I learned along the way and some I wish I had learned early on:

1.  It’s okay to grieve.  In fact, you really need to grieve.  Grief is a natural part of the healing process.  Your entire pregnancy, you were planning for this precious little girl to play dress up and create amazing art with, or a daring little boy who was going to be the next football star or karate champion.  Now, here you are in the NICU and the doctor says they don’t think your child is going to make it, and if they do they will never do anything meaningful with their life.  (We’ll get back to that in a minute.) Your whole world is crushed.  Believe it or not, you just lost a child.  Yes, the child you birthed is here and living, but the child you dreamed of has passed.  The realization that you may not get to do all the things you planned, hits you like a bus.  It’s okay for you to be sad about that, angry even.  Mourn the loss so that you can move on to caring for the child you have in front of you.  You will build new dreams.  You will find ways to make the dreams you had come true.  There are accommodations for everything.  I know of so many children with special needs who play sports, dance, do karate, swim, and so many other amazing things.  The dreams you have for your child can still come true, it just takes a little more work and you might need to make some adjustments, but it can happen.

2. No one has a crystal ball. There is not a single person on this planet that can tell you with complete certainty what is going to happen with your child.  Our doctors do the best they can with the information they have, but they cannot predict the future.  If the doctor says your child may not survive and if they do they won’t have a meaningful life, first, shame on them for saying such a thing, but second, the world is FULL of people who doctors said wouldn’t live for very long and I can tell you that every one of them has a meaningful life.  If you have a diagnosis, understand that all diagnoses have a spectrum and every child with that diagnosis is different.  The research can give you an idea of what to expect, but it is not absolute.  Just look at children with Down Syndrome.  There are children who have severe challenges, but there are also a lot of children who have only a few complications.  Many of them grow up to hold full-time jobs and live on their own.  And I’m sure all of them at some point were told “your child may never crawl/walk/talk/live on their own/hold a job/etc.”   You never know what could happen. Never, never, never lose hope.  

3. You know your child best. Yes, your doctors went to school and have many years of experience, but your child is your child and no one knows your child the way you do.  No book and no amount of experience could let anyone be the expert you are when it comes to your child.  You are the one with him/her day in and day out.  Always trust your gut and don’t be afraid to stand up to a doctor.  Believe it or not, sometimes they are wrong.  You are the advocate for your child and you will have to fight for everything they need.  Just because a doctor says “well children with X,Y,Z Syndrome typically don’t have severe GI issues, so it’s probably just reflux,” does not mean you stop there if your child is projectile vomiting their entire feed, every single feed.  There are lots of tests that can be done to investigate the issue further and just because THEY have never seen a child with X,Y,Z syndrome have the issues your child has, does not mean that it is not possible.  When in doubt, always know you have the right to a second opinion.

4. People mean well, but they almost always say the wrong thing. For us, we hated when anyone told us “Well, things could be a lot worse.” Braxton’s dad would usually quip back, “Yea, well things could be a lot better, too!” Other things like, “You know, God only gives special babies to special parents” or “God would never give you anything more than you could handle” or “he looks normal to me!” And then somewhere along the way you get promoted to sainthood with comments like “Oh, I just don’t know how you do it!” or “God sure knew what he was doing when he gave you that child.” Or “I would just die if that happened to my child, you are so strong.” Um, thanks? I’m not stronger than the person next to me, I’m just a parent and that’s what parents do.  We rise to the occasion, because who else is going to do it?? We are strong because we have no choice but to be strong. I get what people mean most of the time, but it still stings a little.  And, if you are like me, after a certain point you just want to hit the next person who says something out of place.  You learn to ‘grin and bear it’ or use the opportunities to educate the person who says the wrong thing.  Just know that even the most ridiculous things often come from some place with genuine sympathy. Also know, that sometimes people are just downright mean, and those people don’t deserve your time.  If you are quick-witted you may be able to educate them and put them in their place quickly, but most of the time you are so stunned at the sheer audacity they had to say such a thing that you just stare blankly.  If that happens, just move on, they don’t matter in the grand scheme of things.

5. You WILL learn everything you need to know.  I remember getting ready to discharge from NICU and a nurse going over operating the g-tube pump one more time and thinking how in the world am I going to remember all of these steps.  Just before discharge the nurse went through all of the paperwork with me and discussed the specialists I needed to call for follow-up appointments.  We were discharged with what seemed like, a mountain of medical supplies and a long list of people to call.   I was overwhelmed. I didn’t know where to start.  I became more organized than ever.  I made charts, spreadsheets, journals, and kept detailed records.  I created a medical records binder to store everything I needed for Braxton.  As I realized that everyone wanted to know exactly what happened from the time he was born, what doctors he saw, exact dates, exact procedures, I began to maintain a timeline.  This was very helpful in filling out the mounds of new patient paperwork.  Eventually, I created a single page document with a list of diagnoses, medications, procedures, diagnostic imaging and surgeries.  I have a spreadsheet that lists all of our doctors, their specialty, the reason they are treating Braxton, and phone/fax numbers for every one of them.  These two documents have been the single most important for us, and our doctors really appreciate the “Cliff’s Notes,” so to speak, on Braxton.  It is scary and overwhelming, but just take a deep breath and know that YOU. CAN. DO. THIS!

Here is a helpful guide from Mommies of Miracles you can share with friends and family who ask how they can help you. mommiesofmiracles.com

Here is a helpful guide from Mommies of Miracles you can share with friends and family who ask how they can help you.
mommiesofmiracles.com

6. Don’t be afraid to ask for help or accept help when it is offered! This is a hard road and you simply cannot be on “go” 24 hours a day, 7 days a week.  Caregiver Burnout is very real and can affect you and your family. You need to take care of YOU so that you can take care of your child.  Don’t be afraid to ask someone to sit with your child so you can take a shower, take a nap, or step outside in the fresh air for a few moments.  If someone offers to help, let them! Give people specific tasks that help you check off your to-do list and satisfies their need to help you.  Ask someone to cook dinner for you, bring dinner to you, put gas in your car, bring you gift cards for the grocery store, or simply ask them to sit with you and learn about your child.  People care about you and they want to help, don’t shut them out.

7. Take care of YOU! This should probably be number one! It’s okay to take a step back and take a deep breath.  There are going to be many times along this journey that it is all simply too much to handle.  Understand that this is natural and you have every right to take a break.  Go get a massage, a manicure and pedicure, go out for dinner, just do whatever will help to recharge you so that you can be your best for your child.

8. Your relationship with your spouse or significant other will be tested. It’s a well-known fact that men and women process these experiences very differently.  I wanted to talk about all of the possibilities, talk until things made sense, or simply talk for the sake of filling the silence.  Braxton’s dad was not a talker.  He’d listen to me for a little bit, but he’d almost always zone out or change the subject.  He dealt with this in his own way. He buried himself in work and in music. BUT, he was at every single doctor’s appointment. He learned how to use Braxton’s feeding tube.  He woke up in the middle of the night to change out the formula, change Braxton’s diaper, or simply rock him back to sleep.  We became so tired that we lost time for ourselves. We stopped talking to each other.  We argued about so many insignificant things that seemed important in the moment, but I cannot recall one life altering argument that impacts us today.  Don’t let that happen to you.  Make time for each other.  Get a sitter, respite nurse, or close family member to stay with your child so you can spend time together as a couple.  Have a date night and don’t feel guilty about it.  If all else fails, don’t be afraid to go to counseling and find each other again.  Do everything you can to remain a team, but just know that sometimes things don’t work out and that’s okay.

9. You will find your faith, or you might lose it.  I have seen both sides of this coin.  People who learn to see God in their lives through the miracle that is their child, and people who become so angry with God, that they begin to think that He is not present in their lives because of all the hurt and struggle they have faced.  We struggled with our faith and were very much tested spiritually, but eventually we did find our way back and began to see things much differently.   You will find your own path.

10. Understand that support is critical.  We become so wrapped up in caring for our children that we often forget about our own needs.  For so long, I thought I was doing just fine.  I didn’t seek out support groups because I didn’t think I needed any.  One day, I went to a meeting with a local non-profit for children with undiagnosed and rare disorders.  I was hesitant at first and almost cancelled, but reluctantly, I went.  That night changed my life and I didn’t even realize it until much later.  U.R. Our Hope was exactly what I didn’t know I needed.  I was able to talk to other parents who shared my experiences and truly understood my journey.  We talked about doctors and how they could have the audacity to make us wait in their office for 2 hours for a 10-minute visit! I learned about resources available to me that no one had ever mentioned before.  I became empowered.  I listened to other parents tell their stories of challenging the system and advocating for their children and was in awe of the people who were before me.  I found myself seeking out more virtual support resources as well.  We live in such a digital age and I am so grateful.  Virtual support groups can be just as helpful and fulfilling as face-to-face support.  Just knowing that someone out there “gets it” makes all the difference in the world.  Don’t be afraid to look for groups in your area and just jump right in with both feet.  You won’t regret it.

A Worried Mother11. Step away from the computer! There is only so much research you can do before you drive yourself crazy.  As you learn about new symptoms, new treatments, new possible diagnoses, definitely seek out information, but don’t waste all of your time on the Internet or in the library trying to memorize everything.  You will burn yourself out and miss out on precious moments with your baby.  You will also start to worry about things that might never happen.  Some research is outdated and does not paint a nice picture.  When we finally received our official diagnosis, I did some research and I did not like what I read.  By this time, I had started blogging about our journey and when I shared our results and my research, someone reached out to me and said, “Hey, my son has this same syndrome and I know many other people as well.” I immediately reached out and asked to connect with everyone.  I found a Facebook group and began to make connections.  I learned that some of the children were playing sports and doing some truly incredible things.  Many of the children were nothing like the research I had read.  Hope was restored. When you do research add “Parent support for” in front of the diagnosis and that will help you find the support groups or blogs or just real life people who will gladly share their story with you.

12. Don’t isolate yourself or put limitations on you and your child.  Unknowingly, we sometimes hold our children back because of our own fears.  We did not go out to eat for quite some time because we were scared of what people would say if we had to feed our son with his tube in the middle of the restaurant.  Only one of us would go to the grocery store or run errands because we didn’t want to interfere with a feeding time.  We turned down friends invitations for dinner and parties. We kept our older daughter from doing things because of her brother.  I quickly realized this was making her resent him instead of wanting to build a bond with him, so I had to find ways to give her the things she wanted so she could still have her ‘normal.’ You and your child deserve to do anything you would normally do if he/she did not have special needs.  Tube feeding in a crowded restaurant is totally acceptable. At the park? At a birthday party? At Church? Absolutely! Always try to place your child in the least restrictive environment.  Don’t feel like you can ONLY go to special needs parks or attend special needs activities.  Try the regular park, try a regular dance class or baseball team.  Sometimes all it takes is a few simple adjustments and your child is dancing and playing right next to his or her peers as they should be.

Choose Joy Everyday13. Always choose joy.  Joy is a choice.  It is a conscious choice that you have to make each and every day.  When you are going through a rough time, take the time to grieve, but pick yourself up and choose joy.  This whole experience is only as good as you make it out to be.  YOU control the mood and outcome.  The things you choose to focus on are the things that begin to consume your life.  You can choose to focus on the bad things that are happening, have happened or will happen, or you can choose to focus on the positive things that are all around you.  Take some time every day to think about the good things that happened and the things you are grateful for in your life.  Slowly, a positive attitude will come easy and choosing joy will become second nature.  And then something even more amazing will happen; the joy will pour out of you and into the lives of others! I know that right now, this seems ridiculous, but trust me, you will get here.  The fear and the sadness and the anger will subside.  Sometimes those feelings will come back, but every time you will be better prepared and you will notice you spend less time with those feelings and more time with joy and happiness.

Congratulations again on the birth of your beautiful child!  I know things are scary right now, but eventually everything will be okay.  Don’t be afraid to reach out to someone who has been in your shoes.  We remember what it’s like and we want you to stand beside us, so we will gladly reach out our hand to you and pull you up.  We will walk this path with you and help you find your footing.  From this point forward, you are never, ever alone.

All the best,

A-once-scared-NICU-mom-who-didn’t-feel-like-she-belonged-on-this-journey-either

 

//edit: After writing this letter, I realized that I left off one VERY important piece of advice for parents of children with congenital anomalies. It’s not your fault! Read more in my post “Letting Go of the Guilt.”

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Simply click to vote! It's THAT easy. Then feel free to browse some other really great mommy blogs. Thank you!

Simply click to vote! It’s THAT easy. Then feel free to browse some other really great mommy blogs. Thank you!

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