Tag Archives: life

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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Filed under Kids and Family, Life, Special Needs Child

Finding Strength You Didn’t Know You Had

“Your blood work came back abnormal. These levels indicate your child may have Down Syndrome, so we are going to send you for a higher level ultrasound and we may need further testing like an amniocentesis ….”

The fog rolled in and the genetic counselor’s words sounded more like the teacher in Charlie Brown. I sat there, stunned, mouth agape, thinking, “I’m only 20 years old. I don’t even know how to be a parent, much less the parent of a child with Down Syndrome. How am I going to do this? What do I do?  I’m not cut out for this. I can’t do this.” I’m brought back to the sound of the genetic counselor’s voice as she’s explaining my “options.” Wait, what? Adoption? Abortion? This is MY baby we’re talking about. I’m not just going to get rid of her. And in that moment I knew, Down Syndrome or not, I was going to tackle this head on.  My daughter was born without any complications and without Down Syndrome.

Fast forward almost 5 years later and in walks the neonatologist and she slowly starts to explain “Your son has some interesting characteristics like a flat nasal bridge, thin philtrum, webbed fingers, and a significant heart murmur. On their own, these things aren’t usually anything to worry about, but when they present at the same time they indicate some type of syndrome….”  And cue the teacher from Charlie Brown. I’m speechless, what is happening? I’m vaguely listening to the doctor and as she tells me he is going to have to be transported to another hospital for further testing I feel the tears rolling down my cheek. I see my significant other jaw clenched, tears welling over. Our whole world rocked, in an instant. As she leaves the room we look to each other and start the “What are we going to do?” talks and wonder how we’re going to explain this to everyone. “I don’t even want to say anything about this on Facebook” he says. We have no clue what is going on, terrified that our son is being transported away from us all while I’m still stuck in a hospital bed. 14 hours post c-section I was walking around my room and 36 hours later I was discharged.

Over the years, our journey has taught me that I possess more strength than I ever thought possible. If you had told me 4 years ago, after that neonatologist left, that one day I’d be sharing my story and helping others on the journey I probably would have laughed in your face. Me? Me, who didn’t want to share anything with my friends or family on Facebook would be blogging, giving presentations, and helping others? Yea, right. Except, that’s exactly what happened.

Somewhere along the way I found the courage to tell our story and from that has come the most amazing opportunities, friendships, and healing. I have now become a mom who can walk with others on the journey and help them see hope even in the most hopeless situations; help them find the strength they didn’t even know they possessed.  I don’t pretend to be superwoman and I don’t want anyone to think that of me either. I’m not superwoman. I’m just a mom. A mom whose love for her child would move Heaven and Earth before giving up. Just like any other mom.

A few weeks ago, I witnessed the other side of the coin. I have accompanied families to appointments before, but not a single one jolted me back to that hospital room when the neonatologist flipped our world upside down like this one. I attended a genetics appointment with a family to take notes and help them figure out the next steps after receiving the diagnosis. Only, I wasn’t fully prepared for what happened next. As the doctor delivered a diagnosis I was unfamiliar with, I opened up Google on my phone and began researching then and there. Then, like a ton of bricks in an article –

This disease is always fatal. Most patients die before the age of 10.

The words blur together as I try to continue reading. I’m frantically searching for “success stories.” No, this can’t be right. I’m finding support groups, blogs, Facebook groups, calling in the troops – this family is going to need incredible support. Then, as quickly as it came, I’m brought back to the room and focused on the doctor’s words. He hasn’t told the parents yet. He’s trying to break the news easily and when he finally gets to it, they break down. Here come the tears, the cries of “How are we going to do this?” “This isn’t fair.” “I can’t do this.” “I don’t know what I’m going to do.”  The doctor proceeds to explain more about the disease. The parents are frozen. I step in with some questions. I’m frantically taking notes. When the doctor leaves the room, the parents are visibly shaken. I give mom a hug and tell her that she’s not going to have to go through this alone. I share in their grief. I tell her that she is going to have the strength to do this. I tell them to go home, take it all in, cry, scream, break stuff, grieve in their own way and when they are ready we can tackle this, together.

A few days later I check in with the family and send them my notes from our visit. I let mom know that I’m ready and willing to help as soon as she’s ready. By the next week, the family has started a Go Fund Me and Facebook page. Mom has made contact with a doctor in Chicago for further diagnostic testing and to begin participation in a clinical trial. I am in awe of this woman and this family. This mom who didn’t think she could do this has already moved mountains in a short amount of time. I am reminded that strength comes when we least expect it and often when we ourselves don’t think we even have the strength to keep breathing. 

The love a parent has for a child is the ultimate source of strength. It is the love for my child that kept me going when I thought my daughter had Down Syndrome, when I refused to stay in the hospital for the required 72-hours post c-section after my son was transported, when the geneticist finally delivered his diagnosis to us 2 years later, and it is the love for a child that I have seen move mountains for this family. If you are a new parent hearing a difficult diagnosis for the first time or a seasoned parent entering unknown territory, just breathe. You WILL find the strength and everything is going to be okay.

 

 

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The Swingset That Almost Wasn’t

Earlier this year, I learned that Braxton became eligible for programs provided by the Department of Assistive and Rehabilitative Services (DARS) Division of Blind Services (DBS). One of the DBS’ main goals is to help individuals get involved in their community and to help them do the same things as their peers. As part of this mission, DARS-DBS will cover the cost of camps, alternative therapy (music therapy, hippotherapy, aquatic therapy, etc), learning toys, therapeutic equipment, and much more.

At a recent meeting with our case manager, we mentioned looking into buying a trampoline or playground set for our backyard. A few days later I received a call that there was money in the budget for DARS-DBS to purchase a playground set for Braxton. I was shocked and elated! Braxton loves going to the playground to swing, and now he would be able to do it anytime he wanted. Not to mention how beneficial it would be for our in-home therapists to implement in their programs. We were thrilled and made plans to meet our case manager at the local Walmart to make the purchase.

The elation was short lived.

We arrived to Walmart and ran into issues making the purchase. The cashier did not know how to process the transaction using the DARS-DBS state credit account, so he called a customer service rep. The rep (who was in no hurry at all to help) finally arrived and completed the transaction. As we waited for help to load the swing set into our truck, the rep frantically came back and told us there was a problem. He said that this type of transaction was not allowed and we could not take the set with us. Our case manager tried to explain the process to the young man and let him know that the program makes purchases like this throughout Texas and have never had an issue. As the rep repeatedly huffed, puffed, and rolled his eyes he continued to insist that this wasn’t allowed per his manager. He was reluctant to help and refused to call the 1-800 number on the voucher for further instructions. When we asked to speak to the manager, he made some calls, and then simply turned around and said “Yea, my manager said we can’t do this.” After demanding to speak face-to-face to a manger, one finally arrived. We explained the situation again, pointed them to a 1-800 number on the voucher and asked that they please call that number to verify the purchase rules and how to go about processing this for us. After some time, the manager and customer service rep returned to say that hotline was closed so they could not get through to anyone who could verify this type of purchase. This all happened over the course of about 2 hours.

At this point, the manager was at least somewhat apologetic about the situation, but adamant that this type of purchase was not allowed at their store. He even brought out the Asset Protection Manager who tried to tell us keying in the account number was absolutely against company policy. He stated that he would attempt to call the number the next morning to try and get it resolved. Our case manager made plans with us to meet again the next day.

The next day arrived and our case manager called before we all headed up to the store again. The manager said he had not yet called, but would call ‘within the hour.’ Over an hour passed with no word, so our case manager called him and he said that he had been trying “all morning” but the line would just ring and ring with no answer. The case manager called the number herself and got right through. She obtained some further information about the Walmart Corporate office to give to the store manager to hopefully resolve everything. After several phone calls and several hours, everything was finally resolved and the manager gave the okay for us to make the purchase. We returned to the store and again the cashier did not know what to do and called a customer service rep. We told them which manager we spoke to and asked that they please call him to verify that the purchase could be made. Finally, the purchase was completed and we got the swing set home.

The entire situation was so poorly handled by nearly every employee involved. Having worked in retail, I can certainly understand the frustration something like this brings, but I do not at all understand the pure lack of empathy and poor attitude by the entire staff. Not one person was willing to go above and beyond “what they’re paid for” to help a customer.

There are several things that could have been done to help us out from the beginning. For one, the customer service rep should have brought the manager over immediately instead of making us feel like a burden for making him do his job. Secondly, he should have called the hotline when we arrived and the office would have been open. Instead, his reluctance dragged the time on which made us miss the people who could have helped everything. Thirdly, when our case manager brought it to their attention that she has personally made these purchases at nearby Walmart locations, the manager could have offered to call one of the other stores to speak to a manager who has done this before, but that never crossed his mind. Lastly, once the manager finally learned that this type of purchase was allowed, he should have personally gone over to the garden center and/or Customer service to let them know we would be returning to make this purchase. None of this was done. In fact, absolutely nothing was done or said to help rectify the situation.

The really unfortunate thing is that we are not the only family in this area served by DARS-DBS, and now because of this experience it would be difficult for our case manager to take another family there only to be turned away. If the manager did not prepare his staff for our arrival the day he learned of this program, it is highly unlikely there will be any storewide training and every family who enters will be made to face this kind of treatment, which is absolutely unacceptable. They have lost business simply because of their unwillingness to learn, adapt, and go above and beyond their pay grade.

Braxton on his swing set

We finally put that swing set together this week. The pure and simple joy on my son’s face, made the hassle worthwhile, but it reminded me of the fight we face all too often with the “gatekeepers.” The gatekeepers who keep us from making appointments in a timely manner, the gatekeepers who keep us from services that could greatly help my son’s quality of life, the gatekeepers who show no emotion and no empathy for the very people they are supposed to help. Everything in our life has been a struggle. Getting a swing set to help my son be like other 4 year olds frolicking in their backyard wasn’t supposed to be so difficult. There was a time I didn’t know if he would ever be able to swing or slide down a slide at the playground, much less one in our backyard. Thanks to DARS-DBS he can now have that experience just like other kids his age.

 

Swingset Therapy

The set is also now a huge part of our therapy plan. Our Physical Therapist has already had Braxton outside working with him to climb the stairs so he can slide down all on his own. I stood by and watched as they worked together. I saw Braxton’s foot go up to the next rung unprompted and thought of all the hard work it took for him to gain that skill. For now, he needs help, but one day (soon) he will be able to maneuver the playscape with little to no help. What a shame it would have been had we allowed yet another gatekeeper to keep us from having this experience.

If this makes it back to our local Walmart, I want you to look at the joy on this little boy’s face, and I want you to know that YOU helped put that smile on his face. Yes, you made it quite difficult for us, but at the end of the day it doesn’t matter whether you apologized or admitted you were wrong (although that would be nice), what matters is this sweet face and the fact that YOU have the potential to help other kids like him with much less hassle. I hope that you learned something from having us in your store. I hope that you share what you learned with others so that this wonderful state agency can continue serving children in our area. All of our children deserve a chance to just be children. Not children with disabilities, just children. Children who want to play and be free and be loved. Please don’t take that away from our sons and daughters.

 

Braxton on the slide

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Welcome Back, Team Braxton!

The past few years, I have been writing a letter to introduce Braxton to his new daycare and elementary school teachers. This year, we are fortunate to have our same team of teachers and therapists, so instead of an introduction letter, I’ve written more of an update letter to let them all know how wonderful Braxton has done over the summer. I must add that we are SUPER lucky because his teachers also follow our blog and Facebook page, so they’ve gotten to see some pretty amazing things all summer! I really couldn’t have asked for a better team. Without further ado, this is the letter I am sending to our teachers and school therapists.

——————————————————-

Welcome Back, Team Braxton!

The Summer sure feels like it has flown by! I hope that you all had a wonderful, much deserved break. We are so excited for school to start again and look forward to another amazing year together. 🙂

Braxton has had a great summer of growth and excitement! One of the fun things we did this summer was go up to Dallas to meet up with other families with children who have Rubinstein-Taybi Syndrome. It was really incredible to meet other children and see where they are and what we have to look forward to in the future. We know that every child is different, but we have such high hopes for Braxton now and a little bit better idea of what we might expect and goals to add to our list. With your continued support, I know we will help Braxton reach his full potential.

I am writing this letter to you to update you all on the progress we’ve made over the summer, in lieu of calling a staffing or new ARD. I am, of course, more than happy to meet to further discuss or make any changes to our IEP, if necessary.

Gross Motor Skills

Braxton’s walking has gotten MUCH better over the summer. He is walking quite well independently, but does still require handheld assistance in new or busy environments to keep him going in the right direction. As you know, he is still fascinated by doors and windows and  will wander in that direction if not holding on to someone. He is also doing well going upstairs with standby assist, if there is a railing. Coming down he does need to hold on to someone if he needs to walk downstairs. He can scoot down all by himself though! I have also noticed that his endurance has increased and he can walk longer distances without taking a break. Braxton has also done pretty well on uneven surfaces (grass, gravel, rocks). We have been working on jumping on the trampoline and I have seen Braxton try to initiate jumping on flat surfaces.  He hasn’t come off the ground yet, but he bounces up and down. He has recently also started propelling himself forward on riding toys! Intense plasma car races are in the near future. 🙂 He also really enjoys playing catch and throwing a ball overhead. We’re working on kicking and he can do it as long as he has some help keeping his balance. Over the summer Braxton graduated to once weekly private physical therapy instead of twice a week.

 

Fine Motor Skills

Fine motor is still a work in progress, but we ARE seeing progress! Braxton can now build a block tower up to 3 blocks on his own with minimal tactile cues. He can build up to 6 if he has some help keeping the other blocks together. We have really been targeting that pincer grasp as well and he is doing better, but does still try to grasp using his whole hand. When we cue him to hold his fingers back, his pincer is beautiful. We have also worked on chunky block puzzles and he is doing better with taking the pieces out and putting them back in to their correct place. Occupational therapy is still twice a week and we will also be starting Hippotherapy back up in September.

Speech and Communication

This is where things have been REALLY exciting for us this summer!! Braxton is doing so well with the full size iPad and Speak for Yourself. He is making 2-3 word utterances without assistance. His favorite thing right now is to ask for hugs and kisses. He very deliberately will say “Want hugs” or “want kisses” and expectantly turn to you for his hug or kiss. He also says “Give ___” where the blank is filled in with a toy he would like. The other day he also said “you, you, you, my, my, my, food.” after he threw his spoon, which I took to mean that he wanted me to feed him. Sure enough, he ate just fine after that. He also said “sleep, sleep, sleep” repeatedly just before climbing in to my lap and falling asleep. I’ve learned that when he appears to be stimming or fixated on a word, he is often actually trying to tell you something so you may need to help guide his hand to find what he wants to say. We are so excited to see his progress and have been actively trying to incorporate the use of the talker more in to his daily routine to express wants/needs, feelings, schedules, etc. Modeling is extremely important in helping him to interact with his peers and be an active participant in class, so I hope that we will be able to use it more throughout the school day.

Aside from using the talker, Braxton seems to be learning other ways of getting our attention and communicating with us instead of just whining or crying. He climbed in to the bathtub to ask for a bath, he pulled food out of the pantry and brought it to me (instead of just sitting in his chair and crying), and he’s taken my hand and led me to toy he wants.

He also seems to be understanding more and following directions better. I can call Braxton from another room when it is time to change or eat and he will come when I call him. He understands what it means when I say it’s time to go somewhere and goes straight to the front door and gets excited. He also gets a little upset when we don’t leave right away. (We’re still working on that patience thing).

Feeding and G-Tube

Braxton can now feed himself!!  He is able to hold the spoon, scoop his food, bring the spoon to his mouth, and back to the bowl. He does need help when it comes to the last bit of food and scraping the bottom of the bowl. Also, a word of caution! He does still want you nearby. If we leave he gets upset and will throw his spoon or the whole bowl of food. He also likes to throw his spoon when he doesn’t want to feed himself, but instead wants YOU to feed him. So, I’d try to stay out of the line of fire, so to speak. 😉 He does still need his G-tube for liquids, so be sure to give him 2-4 ounces of water after lunch and/or after you come in from outside since it is still so hot out there. He has recently started making a sound like he is clearing his throat and we’re seeing multiple swallows, but he is eating normally and our therapists/doctors are not seeing anything to indicate that we need to stop oral feeds. We have a swallow study scheduled for the first week of school to be sure there are no changes.

Hearing and Vision

Braxton’s ear had some fluid build up in June and his right ear tube started leaking. After a couple weeks his ear tube came out but the drainage did not stop. We visited with the ENT who removed the other tube since it was out of the ear drum and just sitting in the canal. Since the right ear had been draining almost 3 weeks, the ENT cultured the ear and it turned out to have been a staph infection. We started some new ear drops, but within a week of finishing the drops the draining started again. After a trip to the doctor we learned his left ear was now infected and the right ear still had fluid. We began an oral antibiotic and resumed drops in the right ear. He seems to have cleared up, but we have not yet followed up to be sure. As a result of all of this, Braxton has not worn his hearing aids in over a month. 😦 He seems to be hearing well enough to understand and respond to directions and his communication device.

For vision, we did follow up with our ophthalmologist this summer and she said his vision still appears to be normal and again confirmed the CVI diagnosis. We have been working on identifying colors over the summer and he consistently finds the requested color when asked about 80% of the time. Sometimes when we hold up two blocks and ask him to pick a specific color, he looks right at it and grabs the other block while laughing or smiling, so we know he knows the colors and is playing with us. Our communication program also recently had an update that allows us to change the colors of background on the buttons as well as, the “desktop” screen. Instead of the black background, we can now change it to another color. I haven’t tried to change that yet to see if it helps with him finding his words, but it is an option we have now.

 

I’m sure there is something  I am missing, but I think I hit all the highlights. Overall, Braxton is making progress by leaps and bounds right now! It such an exciting time for us to see Braxton’s personality continue to emerge and be able to see him show us what he knows and comprehends. We’re really looking forward to this year working with all of you again and can’t wait to see what new things Braxton will learn. Thank you all so much for the work you do and the continued support you have given Braxton and our family. We really couldn’t ask for a better team! Please feel free to contact me if you have any questions or if there is anything you would like to discuss further.

 

All the best,

Braxton and his parents 🙂

 

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Filed under Kids and Family, School, Special Needs Child

I Can’t Believe Where We Are

FullSizeRender-3My sister sent me this today. It’s a photo of Braxton just 5 days old in NICU with a nasogastric tube, laying on a bilirubin blanket because he had jaundice. On top of a condition that doctors could not explain to us. It is crazy to think about where we were 4 years ago compared to where we are now. Every year since we left the NICU I think about the progress we’ve made and complete lack of hope we had in those early days.

 

4 years ago, we didn’t know what was going on with Braxton, and all the doctors led us to believe he was fighting for his life.

4 years ago, I watched my daughter’s face frown in sadness and confusion when we told her she couldn’t meet her baby brother. And every day when I left to sit with him in the hospital.

4 years ago, I sat in a cold hospital room surrounded by a number of other babies holding back tears and praying to take my baby home.

4 years ago, I couldn’t stop crying when I was alone because I wanted nothing more than to have my sweet boy with me at home, where he belonged.

4 years ago, I didn’t want to hear any “success” stories because instead of giving me hope, it made me feel like more of a failure.

4 years ago, I was lonely, sad, depressed, and desperately trying to hold myself together.

 

Today?

Today, we know that Braxton’s condition, while lifelong, is not terminal. It is not something that can be cured, but we embrace it as part of who he is and love him more than anything. We know that Braxton is full of life and spirit and joy.

Braxton

Today, Braxton’s sister is his biggest supporter and the bond they share is something incredible. The looks full of love and embraces mean the world to me.

Aileen and Braxton

Today, Braxton is at home walking and doing things toddlers do. Making messes, getting in to things he isn’t supposed to, taking all of the dishes out of the cabinets and drawers, climbing the stairs, crying when he doesn’t get his way, and so much more.

 

Braxton, doing typical toddler things, like climbing on the oven. (It wasn't on and it's now locked and secured)

Braxton, doing typical toddler things, like climbing on the oven. (It wasn’t on and it’s now locked and secured)

Today, I only cry on the hard days. The days when Braxton won’t stop crying and I can’t figure out why because he doesn’t have the words to tell me.

Okay, I take that back.

I still cry a lot, but there are more happy tears than sad. Especially when things finally come together and Braxton makes progress. Like when he recently learned how to use his Communication App (Speak for Yourself) to request hugs and kisses and in a matter of a few weeks it’s expanded to requesting other favorite toys and activities.

Today, believe it or not, I share OUR success story with others. I’ve shared our story through our blog, on tv, on radio shows, in newspapers (take a look here to see!), and I’ve even given presentations at conferences. I even have a pending webinar where I will talk to professionals about the family perspective and tips for making the experience better for families in those early stages.

Our first visit to KXAN for Feeding Tube Awareness Week.

Our first visit to KXAN for Feeding Tube Awareness Week.

Today, our family is not alone, we are happier, stronger, and full of life, love and laughter. What a difference from 4 years ago.

family-4

Our little family ❤ (Photo by Grease Man Photography)

 

4 years ago, I would not have believed we could be where we are now.

Today, I still don’t have all the answers to what the future holds, but I’m no longer scared and look forward to the adventures that are still to come. Some days I don’t have it all together, but we make it through the day and try again the next. We take it a day at a time, choosing joy every step of the way.

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Filed under Family, Life, Special Needs Child