Tag Archives: special needs parenting

Love Deeply. Live Joyfully. Take Nothing For Granted.

Flu. Pneumonia. RSV. Respiratory Complications. Surgery Complications. Cancer. Hospitalizations. Death.

Sometimes this Special Needs journey is hard.  Really. Hard.

I’ve sat by and watched several friends suffer through all of these in the past few months and am reminded again that nothing in life is guaranteed.  Your whole world can be flipped upside down in an instant.  The day you learn your child has special needs.  The day you have finally adjusted to your new ‘normal’ and suddenly the unexpected comes and knocks you down.  The journey is all about adapting and adjusting. One day everything is going just fine and all of a sudden, BAM! It’s like you’re stuck in a whirlwind and can’t even catch a moment to see straight.

I see my friends fight through these obstacles and remember that the same fight is knocking at my own door at any given moment.  Braxton is doing incredibly well and making huge progress in all areas.  I am so very grateful for that and I’m enjoying every moment. But I know that at any time it could all be taken away.

I have been very diligent in keeping Braxton away from germs and sick people because I know the toll it would take on him.  I avoid taking him out in public when we don’t need to be out.  I’ve even avoided Church because I just can’t bear the thought of him getting sick.  This flu season has been exceptionally harsh on everyone and especially on those with special needs.  Braxton has always had respiratory issues and I’m genuinely scared that if he catches the flu we will end up in the hospital.  While I’m scared, others are living it and I just wish I could do something to help.

A member of our RTS family is battling brain cancer right now at only 13 years old.  He is being a true warrior and handling the radiation and chemo treatments well.  Watching him and his mother go through this brings to light the reality of the syndrome we are dealing with.  Not all children with RTS fight cancer, but it’s a very real possibility.  I’m so thankful to his mom for having the courage to share their journey and being able to read their updates just in case I ever have to walk that same path.

A friend I met through the non-profit I am a part of, suffered the unimaginable loss of her sweet son at only 4 years old. He was still partially undiagnosed.  They had suspicions as to what the underlying diagnosis was, but no conclusive answers. No treatments.  He had been doing so well and I was excited to see him making progress.  And suddenly….he’s gone. I’ve seen loss on the special needs journey, but never this close to home.  I have been devastated, and I know that what I feel is minuscule to what she feels with part of her heart missing.

Just because Braxton doesn’t “look sick” or “look disabled” doesn’t mean we don’t have anything to worry about.  Our RTS friend went to the doctor because he was sleeping more than usual and just didn’t seem to be acting like himself and it turned out he had a mass in his brain which had to be operated on immediately.  My friends sweet son passed sometime in his sleep with no warning, no sickness, no hospitalization.  He was just at home being his sweet self.  You never know when things like this will happen.

The fear and the uncertainty are always there.  We have learned to quiet those fears by consciously choosing joy and positivity.  We focus on the good things that are happening in our life and I try not to bring light to the worries that I have, but sometimes those worries are just too big to ignore.  My heart goes out to all of my friends who are watching your children suffer with illness, cancer, or anything else that is keeping them down.  This is a hard road we walk, but I hope you know that you aren’t alone.

I see you. I see what you are doing for your children and how you are fighting with everything in you to keep them healthy and safe.  I’m praying for you and cheering with you when everything turns out okay.  I’m crying with you when things set you back and treatments don’t work.  I’m mourning with you when the unthinkable happens.

The tears are falling down like rain.

I know that I need to choose joy, but for now the tears are falling.  The tears are an absolutely necessary part of this journey.  You have to allow yourself to grieve, to mourn, to weep.  And then you pick yourself up and carry on.  Somehow, you always find the strength and courage to get back up and smile again.

With sickness and loss, we are reminded of the fragility of life.  Nothing in this life is guaranteed, so don’t be afraid to love and live.  If I allowed the fear of all the bad things that might happen consume me, we’d never do anything.  I certainly wouldn’t know the joy that is held in my son’s smile.  His smile exudes so much joy and his light suppresses all of the worry and all of the fear.

Let this be a reminder to love deeply, live joyfully and take NOTHING for granted.

 

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Filed under Family, Life, Special Needs Child

He Sees You When You’re Sleeping

Supposedly Santa watches us when we are sleeping, but tonight, someone else is watching Braxton.  He is having a sleep study done at the hospital.

We saw a sleep doctor a couple weeks ago for a consultation to see if Braxton even needed a sleep study.  Surprisingly, the doctor said he had actually worked with 4-5 children who had Rubinstein-Taybi Syndrome, so he was familiar with the sleep apnea risk these kids often have.  Due to Braxton’s RTS diagnosis and the fact that his tonsils are so enlarged, the doctor said we absolutely need to have a sleep study done.  Thankfully, they were able to get us scheduled before the end of the year.

Waiting We checked in tonight just before 8:30 and they got us in to a room pretty quickly.  I had Braxton all set in his mandatory 2-piece pajamas.  Admittedly, I am still terrified about the possibility of him pulling at his g-tube  in the middle of the night and me not finding out until the morning, so he still sleeps in a onesie.  Gave me a good excuse to go out and buy him some new cute pj’s! 😉 Braxton was quite patient and cooperative!

Luckily, I remembered to bring his iPad, and he played happily while the tech got him all set up for the study.  She marked his head so she knew where to place the EEG leads.  Then, she cleaned the areas.  Finally, she placed the leads and glued them in place.  Braxton was a total champ during the process.  The iPad kept him distracted and content.

Braxton really only got upset when she had to put the nasal cannula on him which monitors his breathing as he sleeps.  He tugged at it a few times, and then he left it alone.  Amazingly, Braxton fell asleep almost right away! I’m not sure how, but he is fast asleep.

Fast asleep

The tech is really nice and said she will be coming in periodically to check the leads and the respiratory monitor.  I am somehow supposed to make myself comfy in a big chair and get some sleep tonight, but not sure that’s happening! They said they usually stop the study at about 6 am and then get him all cleaned up from all the gunk in his hair.  We should be on our way out of here around 7am tomorrow.

We follow up with the sleep doctor in mid-January to get the results of tonight’s test.  The sleep study will tell us if Braxton has sleep apnea.  If he does, the doctor will need to determine how severe it is and if any intervention is necessary (like a CPAP machine).  It will also give us a better idea about whether or not Braxton needs to have his tonsils removed. If he is having sleep apnea, he does not need his enlarged tonsils blocking his airway as well.

Just another piece of the puzzle.  Here’s to hoping I get some sleep tonight! I’m a tad jealous that Braxton can pretty much sleep anywhere, at any time, no matter the circumstances.

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Filed under Family, Life, Special Needs Child

The Early Days (Part I)

Today marks 2 years since Braxton’s discharge from the Neonatal Intensive Care Unit (NICU).  As I mentioned in a previous post, I’ve re-lived those first few days over the past few weeks and although I’ve written about bits and pieces throughout the past year, I finally decided to write everything from the beginning.

Here is Part 1 of The Early Days – All About Braxton’s NICU Stay

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2 years ago, nothing could have prepared me for this journey. I clearly remember leaving our apartment at the crack of dawn, we arrived at the hospital, I got checked in, changed, did all the last minute tests and was hooked up to all the monitors. I waited what seemed like forever for the Dr. to come in and say it was time to go. We were having a scheduled C-Section because my 1st daughter was CS when she stopped responding to contractions (perfectly healthy now by the way) but my Dr. and I decided I should have a repeat CS to avoid any complications.

Nervous, anxious, and excited I walked back to the operating room. My daughter ran up for one last hug, she was terrified that a baby was being cut of me. I never explained in detail (she had just turned 6 at the time), and although I tried to reassure her, she was still scared of mommy being hurt. Reassured her one last time, and off I went.

Everything went well. At 7:58 am Braxton Joseph was born weighing 8 pounds 8 ounces and measured 21 inches long. We had a healthy baby boy and we were beyond excited.

Meeting Braxton for the first time

Meeting Braxton for the first time

 

I was wheeled over the the recovery room and waited for the nurses to finish their preliminary check on Braxton. Finally, they brought him to me to see him and try to feed him. We fell fast in love with our little boy.

Holding Braxton for the first time.

Holding Braxton for the first time.

But slowly, things unraveled.

I couldn’t get Braxton to breastfeed. He was coughing and sputtering everywhere. I thought I was doing it all wrong. I’ve done this before. What’s going on? The nurse came and tried to help and then she took him from me to the nursery. She said they’d bring him to me after while and told me to rest. My doctor brought Aileen in because she was really worried and wanted to make sure I was okay. After a while they wheeled me over to room where my family waited.  We all anxiously awaited the nurse to bring him back.  Dad and some family walked over to the nursery to try and see him.

Dad hanging with Brax in the nursery.

Dad hanging with Brax in the nursery.

A while passed and everyone returned, but I hadn’t seen my son. I called the nursery and asked them to bring Braxton to me. The nurse came and said she would be back to take him to feed. I was devastated. They formula fed my child despite my wishes to breastfeed and they weren’t going to let me try again. His blood sugar had dropped dangerously low and they were unable to bring it up with formula and were going to keep formula feeding him until his blood sugar stabilized. He was asleep when they brought him to me. We cuddled him, gave him lots of kisses, and took a few pictures and then the nurse returned.


I didn’t realize that was the only time I’d have with him that day.

Then, the world seemed to crash down all around me.

Hours later the neonatologist came in and finally explained everything. She began explaining that they had noticed several things “different” about Braxton. His ring and pinky fingers were webbed together, his 2nd and 3rd toes were webbed and crossed, his facial features weren’t “typical;” I was immediately dumbfounded and mad at myself for not noticing. What kind of mother doesn’t check her child’s hands and toes? I didn’t even notice! I was mad at myself. Then I was mad at the Doctor. This couldn’t be true. My pregnancy was PERFECT. I took better care of myself this time than I did the first time around. She also mentioned that Braxton had a severe heart murmur on top of not being able to maintain healthy blood sugar levels.  A million thoughts ran through my mind in that instant and then the Dr. brought what little joy I had left to extreme panic and anxiety. She reported that Braxton was being transported to a NICU at another hospital and I couldn’t go with him. I sobbed. I was mortified. How could they take my child away? I hadn’t even really seen or held him. Neither had any of our family. Everyone waited around and never got to meet him. His sister, oh his sister! She was so overjoyed and she hadn’t even had the chance to see him. I sobbed uncontrollably. Joseph held me and we cried together. We had no clue what was happening, why it was happening or how it would all turn out.

At 9:00 pm, Braxton was rolled in to my room in an incubator. I couldn’t even hold him before he left. I stuck my hand through the small opening and held his little hand until the Doctor told me it was time to go. Shortly after, I demanded a nurse come in and help me remove my catheter and get me in my own nightgown from home. 14 hours post C-Section and I was walking around determined to be with my son. Joseph followed the ambulance to the other hospital and did all of the paperwork to get Braxton admitted while I sat in agony 13 miles away desperately waiting for any kind of news. I called my mom, who was already 40 miles away and just 15 miles from being home in San Antonio, and she turned around and drove right back to the hospital. I didn’t even know how to explain everything, but she sat with me until Joseph returned. When he came back I was a wreck. He told me everything the admitting Doctor told him and tried to reassure me that Braxton was okay. He told me the admitting Doctor had a far different story than the Doctor who had him transported. He didn’t hear the murmur the previous doc did and he did his best to calm Joseph down. We learned that Braxton would undergo several different tests that night and in the coming days. Blood tests, genetic tests, brain ultrasound, an EEG and an EKG. My poor baby was going to have to go through all of this without me.

All I could think about was seeing my son. I saw him all of 20 minutes his first day in this world and I will never forget that day. How I felt, what I thought, the fear, the uncertainty, the angst.

I was released from the hospital the next evening; a mere 36 hours post C-Section. It’s amazing what will and determination can get you through. We went home, unpacked my hospital stuff and picked up some other things and drove to the hospital where Braxton was.

That night we met Stacy. I don’t know her last name or if she even still works there, but I owe so much to that wonderful nurse. She sat with us most of the night answering question after question. She relayed all of the test results that were available. I learned that they thought Braxton had a seizure just before he was brought to me to be transported. The Doctor never told me this. But that’s why the EEG was ordered. I was mad at the doctor for not telling me. I knew it was because I was already highly emotional, but still I should have been told. Thankfully, the EEG was read as normal, but this is when I first learned that Braxton had unusually high muscle tone. Just before transport, because of his high tone he was very stiff and rigid and his hands were fisted and turned in, making the doctor think it was a seizure. Maybe it was, but it’s possible it wasn’t. I don’t remember how long we stayed that night, but I remember Stacy. I remember her sincerity, her honesty and her passion for this job and the little lives in her care. She helped me through the wires to hold my son, really hold him, for the first time in over a day since he came in to this world. She talked to us about the nasal gastric tube being used to feed him. She helped Joseph change Braxton’s first diaper. Something I wish I would have caught on camera, but it’s forever embedded in my heart. Joseph was so nervous and afraid of pulling off a lead or the IV. He used about 10 wipes for that first diaper change. Haha, welcome to the dad club. There were tears, there were hugs, there were kisses, and surprisingly there were laughs. Simply put, there was hope in the room that night. Hope from Stacy, hope from Braxton making slow progress, hope in our laughter, hope from the on-call Doctor that they were going to find us answers.

Those first few weeks were such a blur. We split our time between the hospital and being home with my older daughter, trying to find a way to explain it all even though we had no idea ourselves what was going on.

A FISH for Trisomy 13, 18 and 21 found no variances in those chromosomes.  A full chromosomal analysis also came back normal.  I thought we were in the clear, but the doctors were all convinced that something was very wrong. Every syndrome they threw at me had a life expectancy of less than a year. As the test for each syndrome came back normal, I breathed a little easier, but every time, someone was there to tell me not to get my hopes up. But, in those first few weeks, hope was all I had and I held on for dear life. As Braxton began to stabilize his blood sugars and regulate his body temperature he was transitioned to a less urgent level of the NICU. He was tested time and time again with a feeding team because he was still not able to feed properly. I pumped breastmilk fervently and brought with me everyday what he needed. He failed his feeding trials and swallow study several times. Braxton had already regulated his blood sugars, was able to maintain his body temperature on his own, and he was gaining weight. Feeding by mouth was the last piece we needed to go home. At 2 weeks old the doctors decided Braxton would need to go home with a feeding tube. We discussed the options and ultimately decided to proceed with a gastrostomy tube because it was evident that Braxton would need the tube long term.  Admittedly, we thought he’d be without it in no time, but looking back, the doctor knew it wouldn’t be so quick and that’s why the g-tube was decided upon. Braxton had his G-tube placed at 2 weeks old and we spent the next week learning how to care for him and how to use the feeding tube.

I had the opportunity to room-in on his last night. The hospital had rooms set up that were basically like hotel rooms where parents could stay on the last night to have hands-on “practice” to make sure they’d be okay before getting sent home.  Braxton’s crib was wheeled in and I got to hold and play with him. I was able to set up his feed with a nurse on hand just in case I had any questions.  We made it through the night. Finally, we were able to go home.

After 3 long weeks we were discharged with a list of symptoms, a list of doctors and therapists to call, a load of supplies, but no definite answers. Despite everything we went through in that time, the journey had only just begun.

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Filed under Family, Kids and Family, Life, Special Needs Child

Reblog: What I Would Tell You

This is so heartbreakingly beautiful that I had to copy it over word for word. One, so I know you actually read it instead of following a link, and two, so that I could come back to it whenever I need some help getting through the hard days.  There are many times that I want to reach out to another special needs mom, but I can never seem to find the right words to say.   I don’t know her story, where she’s been, or where she’s at on this journey. Does she even want to hear from someone else who’s “been there”? I know there was a time I sure didn’t care about anyone else’s story let alone their advice or inspiring stories trying to tell me that it would all be ok.  If you are that mom, know that it WILL be ok.  There is so much that I could tell and I’d love to share, IF you are ready. For now, take the time to read this and find your strength along the journey and find comfort in knowing that you are NOT alone.  There is a sense of “sisterhood” amongst special needs mothers, and any one of us will welcome you with open arms and listen to you or offer our words of wisdom if you want to hear them, but if you just want to sit back and read and take it all in, that’s okay too. We’re here when you are ready.  This life we live is not easy and you don’t have to do it alone. With that, I leave you with this amazing post I came across recently. Enjoy.

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Originally posted at: Whatiwouldtellyou.com by Julie Keon

What I Would Tell You

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon
June 29th 2011

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Filed under Family, Life, Special Needs Child

Invaluable Support

The past 19 months have been quite the journey.  Braxton is not the only who has come such a long way from that first day in the hospital.  We’ve had many physical and emotional ups and downs since day one.  Although I don’t like to discuss those initial feelings often, I think it’s important now so you can understand this post.

SAMSUNG

In those first few hours/days/weeks of Braxton’s life we were so scared and full of uncertainty, and we were also in a very “us” centered world.  It did not matter to us about the countless others who had been or were in our shoes at that time.  Every time someone said “It could be worse” I wanted to punch them in the face…Joseph usually quipped back “Yea, well it could be a lot better too.” Most people didn’t know how to respond so they just stayed silent.  (I suppose that was as effective as a punch to the face.) I’d also cringe as well meaning family, friends, and strangers who wanted us to know we weren’t alone offered their unsolicited advice or story.  In those early days we were inconsolable, no amount of advice, happy-ending story, or tears was enough.  I just wanted my son to be better. I wanted to take him home. He belonged at home. I had another child who also needed me. Why is this happening? What did I do wrong? Everyone grieves differently, and the fact that things weren’t the way we had planned or imagined them to be was certainly reason enough to grieve.  We put on a happy face, pulled ourselves together and visited Braxton daily.  For a while I think I even fooled myself into thinking “I’ve got this. No big deal, I’m good, I don’t need anyone or anything right now.” Once we were able to take Braxton home, caring for him and getting him all the treatment he needed took over my life.  My needs came well below his and often were forgotten and not met anyway, not for lack of trying, but because he needed me around the clock and there was no time (or I didn’t give myself the time) for me.  It wasn’t until Braxton was essentially “stable” that I finally began to settle down and realize that I needed to take care of myself too.  During this time, even most of my family was left out of the loop.  We didn’t tell anyone very much.  Anything that was told was on a very “need-to-know” basis.  I was certainly not as forthcoming with details as I am now in my facebook posts or blog updates.  In fact, it wasn’t until I started this blog that anyone really knew the whole story.  My own family was shocked to learn many of the details…they had no idea what I was holding on to.

Fast forward to the present, and I’ve let go of many of those emotions and I’ve come to really value the stories of others who are on a similar journey. In fact, I now seek them out myself! *Gasp* It took a very long time to finally come to terms with what was going on and to begin to adjust to what was now our life.  Once we finally settled in to a routine and we realized that Braxton was doing better than we all initially thought, the “threat” was removed and I wasn’t as “on edge” and I was able to listen to others.  I slowly began to realize that we weren’t alone and that so many people truly wanted to help us. They wanted to relate, they wanted to understand….I wanted them, no, NEEDED them to understand.  That is about the time I finally decided that I wanted to start this blog as a cathartic release for myself, but to put our story out for others to read whenever they were ready to seek out the information.  Not too long after I published the site, we were invited to join U.R. Our Hope (an organization I’ve grown very fond of that helps those with rare and undiagnosed syndromes) Our PT supervisor is the co-founder and she is the one who invited us to begin attending the monthly meetings they had.  She introduced me to families whose children had similar diagnosis as Braxton and naturally, I found this to be something I didn’t realize I needed.  That once a month lunch/dinner with people who really “get it” was extremely relieving and helpful.  It was the first time I truly felt that we weren’t alone.  I love all of my family and friends, and although well intentioned, many will never truly understand what we go through daily because they’ve not lived it.  Being able to meet families who are living it was inspiring and hearing their stories and what their kids have overcome really helped me further open up about our journey.

In addition to this tangible support, I’ve sought out many virtual support sites, facebook pages, blogs, and articles.  I’ve joined so many virtual groups and met some really amazing families from all over and I cannot speak enough about how much this has helped.  NOW, the stories from others who have it worse or have been where we are and how they got through it is so meaningful to me.  NOW, I want to hear all of these things, I want to read as much as I can…I want to know we’re not alone.  The stories are all so inspiring to me and if someone feels the same about us, I’m humbled and glad we could be that for you.  One of the online groups I’ve really taken to is “Mommies of Miracles” which is probably the largest virtual support group around for mothers of children with special needs.  Their facebook page is extremely active and you can literally have questions answered within minutes whereas answers from doctors can take hours or days. (Of course, for most things you should really consult a doctor, but MoMs helps to give you ideas or questions to ask the doctor right away) MoMs also has regional groups you can join and of course I’ve joined the Texas Mommies of Miracles and have been able to “meet” and “talk” to mothers from all over the state.  We’re all on the same journey, trying to do what is best for our kids.

I often speak about Braxton’s happy demeanor and how easygoing he is, and to some it seems out of character for a child who has “gone through so much” to be so happy, but one thing I’ve learned from MoMs is that ALL of these children are happy.  Sure, some may have more mood swings than others or have a crying hour..err hours? but those moments of just pure happiness from our children is a true miracle.  They are just like any other child who needs love and attention.  They have REAL feelings just like any other child.  They are all so easy to love and bring light in to all of the lives that they touch.  Recently, the admins for Texas MoMs put together a slideshow of all the Texas Miracles and as I watched it, I couldn’t help but smile from ear-to-ear.  The pure joy on these childrens faces is so inspiring.  Despite their struggles, despite their challenges, they all know love and happiness and it is now displayed for all the world to see. I’d like to share the slideshow with you.  I hope that these smiles inspire you to fight on despite whatever struggle it is that you are facing.  No matter how big or small, remember these smiles.  If these kids can smile through some of the toughest struggles, you too can get through anything that you are facing.

 

I am ever so thankful for all of the invaluable support we’ve received from day 1.  If you happened to be around at day 1, we probably weren’t very nice, and we’re sorry.  For anyone who has offered a story, a congrats, a share, a ‘like’, words of encouragement, prayers, well wishes, a hug, a personal message…we thank you.

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