Tag Archives: motherhood

Thankful For the Hard Times

I know that sounds crazy, but think about it. How can you ever really know good times without ever experiencing the bad times? If you never experienced pain, sorrow, and hurt, you would never know to recognize good health, prosperity, and joy.  Not to mention that learning to get through the hard times builds character and teaches you the courage and strength you possess.  We have been dealt our share of hard times and I’m certain they are far from over, but instead of being angry about them, I’ve learned to be thankful.

So, wait. You’re thankful that your child has a genetic disorder?  Well….yes and no.

BraxtonEvery mother of a child with special needs has wished their child’s syndrome away.  No child should ever have to suffer or fight for life the way our children do.  We learn to adapt, we step up and care for our children, wear the badge of “supermom” as both an accolade and a curse, and we love our children fiercely.  The sad truth is that we can’t simply wish the syndrome away or hope for a magic cure.  So in that respect, no, no I’m not thankful that Braxton has a syndrome.  I’m not thankful that he has significant delays. I’m not thankful that he can’t verbalize how he feels, what he wants, or what he needs.  I’m not thankful for the hours we spend in the doctor’s office, in therapy, or on the phone with insurance companies.  No child and no family should ever have to do those things.

HOWEVER, I AM thankful for what my son’s syndrome has taught me. Thankful for what he has taught me about myself, life, parenting, and truly unconditional love.  I’m thankful for the people we have met and the connections we have made.  I’m thankful for the love and support we have found in the special needs community.  I feel that I’m so much more thankful about everything than I would be if Braxton was ‘typical.’

The hard times have taught me patience.  I’ve learned to give Braxton the time he needs to figure things out, and while watching him instead of rushing him I see the wonder in his eyes, the intent with which he tries to accomplish a task, and the pride he has in himself when he does it all on his own.  I’ve learned to be more patient with others as well.  I’ve not perfected this yet, but I do notice that I lose my temper far less than I did before Braxton.  Sure, there are times that I just snap when I shouldn’t, but I recognize it and try to do better.

A single stepThe hard times have taught me gratitude.  I’ve learned to truly appreciate the little things and recognize that it’s the little things that mean so much to us.  I understand just how much work it takes for a child to learn to sit on their own, stand, roll over, pick up a cookie, put a toy in a bin, empty a toy box, wave – the list goes on.  EVERYTHING my child has done, he had to work for.  He had to be taught.  Hours of therapy were spent teaching him to do things many kids simply figure out on their own.  Braxton took THREE small bites of a cookie and I was so overly ecstatic and grateful for this incredible accomplishment.  Something I would not have experienced if it were not for the hard times.  I wouldn’t know THAT kind of joy and gratitude if Braxton was ‘typical.’

St. David's NICU ReunionThe hard times have brought my family closer together.  Joseph and I learned to really work together to care for Braxton.  Watching him hold Braxton, make him laugh, or simply watch him with pride has made me fall even more in love with him.  There is just something about seeing the man you love be an incredible father.  We have had our share of hard times, but we have come out stronger every time.  Our immediate families have also been more involved and learned to care for Braxton and spend time with us whenever possible.  Aileen has been an amazing big sister and now that Braxton is more mobile she is truly enjoying “showing him the ropes.” Seeing the two of them together warms my heart.

The hard times have taught me courage.  Never in a million years did I think 1) that I would have a child with special needs and 2) that I would be able to share our experience in such a public fashion.  I recognize the courage I had to build to be able to put our story out there for all of you to read.  The courage it took to share our experience with media outlets.  The courage it takes to stand in front of a room full of strangers telling our story hoping that even ONE person finds THEIR OWN courage to fight for what their child needs. The courage it takes to persistently call a doctor because you just KNOW something is not right and they aren’t listening.  The courage to question a doctor and ask them to take a deeper look.

The hard times have taught me about faith.  I’ve always held true to my faith and the values I learned growing up, but I took a step back some time ago.  It’s been about a year now since I’ve gone back to Church and pulled my faith closer to me.  I see the greater picture and I know the power of prayer.  I know God and see Him at work in my life each and every day.

The hard times have led me to find my purpose.  My life is not at all what I imagined for myself, but I know it’s exactly what I’m supposed to be doing.  I KNOW that I’m supposed to be sharing my story with you and reaching out to others to walk with them on this journey.  I can’t tell you the joy and gratitude I feel when another mom reaches out to me to say that one of our experiences helped her through an equally hard time.  Or when a mom reaches out for help to find answers or asks where to turn and I’m able to answer her or direct her to the right place.  The thanks she gives me for listening when no one else would makes me feel good about myself and makes me want to do more.  I want to pay it forward for all the help I’ve had along the journey.  I enjoy helping people. I enjoy listening to their stories and finding the similarities in our journey so that they don’t feel alone.  I know that this isn’t what I had planned, but it’s where I belong.

The hard times have taken me through every emotion possible, but I’ve learned to stay strong and hold my head high.  I’ve learned that it’s okay to grieve.  It’s okay to cry, sometimes for no reason at all.  I’ve learned that I’m stronger than I ever imagined.

I’m thankful that I’ve seen hard times because I now know a joy that I could have never experienced otherwise.  Hard times are not the end of the world.  They are opportunities to learn what you are made of and teach you to be thankful when the good times come your way.

Choose Joy Everyday

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

The 2-year Hurdle

Yikes! I inadvertently went on a blogging hiatus. Sorryyy! While things have been relatively ‘boring’ medically, I have managed to keep us all VERY busy! We have been taking advantage of things slowing down medically by actually enjoying our weekends and doing things that seem almost…’normal.’ Hmmm…imagine that!?

Movie time!

Movie time!

Earlier this month, big sister, Aileen, was invited to TWO birthday parties in one weekend!  That same weekend, I also took the kids to a Sensory Friendly Showing of “Cloudy With a Chance of Meatballs 2” at our local AMC theater.  This is the 2nd movie we’ve done with AMC and both times have been really great! I love that the lights are low but not completely dark and the sound is much lower than normal.  Even with his hearing aids, Braxton did really well and did not startle during the movie.  He also did really well at the birthday parties with his sister.  It was so nice to be able to let her have fun with her friends instead of having to stay home because brother was sick or needed to be on continuous feeds.

Shortly after, I started a new job and have been juggling my old job as well until the end of the month.  AND since I don’t have enough to do, I had also been working with U.R. Our Hope preparing for our inaugural fundraiser gala.  We planned a very nice dinner and silent auction with friends and supporters of the rare and undiagnosed community.  I think it all went very well, and it was so wonderful to see such incredible support.  As part of that weekend, U.R. Our Hope also hosted a conference on Patient Advocacy and we had the amazing opportunity to film with a documentary crew for an upcoming feature on the Undiagnosed.  I was asked to speak on a parent panel at the advocacy conference and also share our diagnostic journey with the film crew for the documentary.

It was in sharing our story and looking back on this past month of the most ‘normal’ we’ve ever had, that I realized we’ve reached this “two year hurdle.”  In talking to other families who have children with special needs, I’ve found that many say the first 2 years were the hardest and that somewhere around age 2 things seemed to calm down.  I really feel like that has been the case for us.

The first year was by far the most tumultuous.  We went through so much from not knowing how long Braxton would be with us, not knowing what the future held, not knowing the exact cause of all the issues, surgeries, countless doctors appointments, so many therapy sessions, and our relationship was tested in ways that should have broken us apart.  We spent so long just going through the motions, fumbling our way through our routine and this ‘new normal’ and I don’t even see how we did it.  Somehow through that journey I found people to walk with us and build us up to find the strength and the courage to stand up for our son, for our relationship, and ultimately fight to find answers.  The only way to explain it is that God was with us every step of the way testing us to the brink of all that we could handle and every single time he was there to catch us as we were falling and bring us back to where He wanted us to be.  We came out stronger than we ever could have imagined.

Around 15 months, something clicked for Braxton and he really started to take off.  It really hasn’t been ‘smooth sailing’ since then, but we have certainly seen easier days.  We have gotten most of Braxton’s medical issues under control and have learned all that we need to really be able to care for him.  I remember when handling the G-tube was the scariest thing I could fathom and now it is so much a part of him that I forget to mention it when giving a ‘medical history.’

Along the way I also learned how to focus on the positive aspects of our life instead of the negative.  Finding life’s blessings even in the darkest of times saved me from severe depression.  There have been times when I didn’t understand why this all happened or why my son had to suffer, times where I thought I just could not handle one more thing and then bam everything seemed to crash down.  But every time, I’d look down at my little boy and see his smiling face and I was reminded of everything I have to be thankful for.  I met families who were going through so much more than us and families who were having to say goodbye to their child way too soon and I realized that despite our struggles, we were blessed to still have our little man with us.  No matter how difficult things were, he was with us and needed us. Braxton has made us better parents and better people in general.

In every interview I’ve had to do, I’m always asked “What advice would you give to parents in your situation or who are at the beginning of the journey?” I always be sure to say that I want other parents to know that they are not alone.  This journey can be so lonely and so frightening at times that we feel like no one else on this Earth could ever understand what we are going through, but I’m here to tell you that there IS someone who understands! What I’ve learned is that despite the diagnosis, the special needs journey is similar for all who go down that road.  We all share many of the same experiences and have so much to offer each other in the way of support.  Let your guard down. Let someone come in and share their story with you. You would be surprised to learn just how similar their journey is to yours. We all share so many of the same emotions, fears, hopes, dreams, and we all want the very best for our children.  If you are just starting this journey, try to reach out to someone or allow someone to reach out to you and walk BESIDE you along this path.  Having someone to walk with you or simply be there when things get hard makes all the difference in the world.

After looking back on our journey as I’ve shared it over the past month I’ve found another important piece of advice; it gets better.  The first year is definitely tough, I’m not going to lie about that.  There is so much to learn and so many specialists to see to get all the answers you need to care for your child.  There will be sickness, uncertainty, unexpected hospital stays, financial strains, and a roller coaster of emotions, but eventually it all slows down and things get better.  We are down to yearly appointments with some of our specialists and still every 6 months with a couple.  We had 3-5 appointments every month for the first year.   This month we had 1.  Your journey may be different from ours and perhaps your child is more medically fragile, but at some point you learn to manage everything and come to a place where things aren’t so hectic.

Braxton walkingI know we aren’t in the clear and there is always the chance that something will happen to set off the cycle again, but for now I’m enjoying what has been the most ‘typical’ month we’ve had in 28 months.  I’m so thankful that I’ve found a support community both virtually and in person.  That outside support has been my saving grace at times.  We are finally making it over this 2-year hurdle and Braxton continues to amaze us.  He is doing so well with walking!  His balance is getting better and his pace is getting faster.  I just know that one day soon he is going to let go of my hand and walk away.

28 months ago if someone would have said “hey it will get better, he’s going to be walking and doing just fine,” I probably would have slapped them across the face because in my grieving that was the last thing I wanted to hear.  So if you are reading this and at the beginning of the journey, (I hope that you don’t slap the person that tells you this in person) since you and I are a safe distance apart, I’m going to go ahead and say it….IT GETS BETTER! Hang in there, this journey is rough but the rewards are great.  You will find the strength and the courage to carry on.  Find a support group either virtual or face-to-face to connect with someone who has walked this path before and can walk WITH you.  And just when you think you can’t take ONE more thing on your plate, know that slowly your plate will become more manageable and you might even find some space for dessert!

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Forget What You Thought You Knew

Parenting: “You think you know, but you have NO idea!”

Forgive me for using a lame MTV catch phrase, but it is completely applicable here.  For those who have kids, remember BEFORE you had kids, when you were convinced that every other parent was doing it wrong and that your children would be angels because you were just THAT good and actually raised right?! If you don’t have kids and you think that…well, you will learn someday.

We ALL had it figured out once upon a time, and then we actually had kids and every parenting philosophy you thought was surefire just flew out the window.  If parenting has taught me anything, it’s that I knew nothing until my kids came along.  And let me tell you, it’s different with every. single. kid! After Aileen was born, I thought I had everything down pat.  She was a pretty “easy” baby and didn’t really give me a whole lot of problems…until she started school. Oy vey! I’m not so sure I even know what I’m doing anymore! Then, when I learned I was pregnant with Braxton, I was fully armed with all my tricks that had worked for Aileen, I knew what to do and what not to do since it didn’t work with Aileen….and then bam! I have a child with special needs.  What. the. heck am I supposed to do now!? I’ve absolutely been a parent before, but let me tell you, I’ve had to re-learn so many things that I actually feel like a first time parent most days.

I know how to feed a baby.  I had to learn how to use a feeding tube to feed my child.  I was determined not to let my 2nd child sleep in bed with me or even in the same room.  His crib was all set up in the other room.  Then we brought him home from the hospital and he HAD to be in the bassinet right next to me so I could make sure he was still breathing and change his feed every few hours.  I knew all these wonderful fun games to play with my child and couldn’t wait to get started.  He did absolutely nothing the first few months of his life, didn’t make much eye contact, no smiles, no laughs, and he rarely cried.  Yes, we still played and sang to him, but the interaction was missing.  I wasn’t prepared for that.  Every step of the way has been something new I’ve had to learn a different way of doing than I had originally planned/expected/assumed.  Obviously, all of the major tenets of care had to be re-examined and I had to learn the proper way to care for Braxton.  One thing I didn’t expect to have to learn was how to communicate with my child.

Good morning smiles

Good morning smiles

Just because a child doesn’t say words, doesn’t mean he doesn’t know how to communicate! It’s not that I thought he had no communication skills, I just didn’t know what to look for or how to understand the ways he was communicating.  I’m a Communications Major, but in his two years, I have learned so much more about communication than I ever did in school.  I took several courses in non-verbal communication and body language; and I’ve used some of that knowledge with Braxton, but he could write his own book.  As an infant (this goes for ANY infant), he communicated with his cries.  Infants cry when they are upset, need to be changed, need to be fed, are in pain or just want to be held.  Yes, there are different cries for each and as a parent, you learn to listen for each one.  This is a very early form of communication and essential in teaching skills that are needed later in life. NO, not to cry when you want something, but the importance of using your voice to indicate a need/want.  In toddlerhood, those cries are transformed in to pointing, grunting, and even words.  I can recall several instances where Aileen tried to just cry to get her way and I had to re-direct her and tell her to “use your words.” Braxton is in his toddler stages, but obviously, he has no words yet.  But he definitely has some communication skills.

Braxton still uses his cry as his primary form of communication.  He uses it more and more now to tell us when he is upset or doesn’t like something.  For example, if he is playing with a toy and we take it away, he will sit back and start to cry, well whine actually, but where most people would see a spoiled child, I see him telling me that he wasn’t done playing with that toy. After all, it’s his ONLY way to truly get his point across at this time.  His cry let’s me know that I did something that he didn’t like.   Sometimes, we can re-direct him and get his attention on another toy and he’s happy again.  The important thing is that he has an opinion and he’s learned to use his voice despite not having the words.  His cry is different than when he is truly upset or in pain.  We’ve had to learn how to tell the difference to address his needs.  And like any toddler, he’s used his cry to trick us in to letting him stay up a little longer or he especially gets his grandmas because they can’t stand to see him cry.  He absolutely knows this, so he will cry and undoubtedly he will get picked up and he starts laughing or has a goofy grin as if to say “haha I got her!” When he is happy, he smiles or laughs, of course.

Braxton isn’t really pointing, but he will crawl up to me and pat me to get my attention.  It’s usually when I’m cooking and he will come up behind me, pat my legs, and when I turn around he looks up at me with a big smile and lifts his arms up to me.  As I scoop him up he laughs and will nuzzle his head in to my neck or put his lips on my cheek.  It is the sweetest moment ever!  In that one moment, he speaks so much louder than his words ever could.  I feel so much love and happiness.  When I arrive at daycare to pick him up and he spots me from across the room, he crawls as fast as his little legs will go and comes right up to me and does the same.  So he knows how to get your attention and make you feel loved.

He is even waving goodbye! When I pick him up from daycare he lifts his little hand and gives a quick wave to his friends. It’s so interesting because he will not do it on command and he will usually do it just the one time.  But, it’s always at the appropriate time.  I’ve noticed it as we leave other places as well, so it’s clear that he understand what he’s doing, but just doesn’t have the ‘command’ down yet.

We have been very active in learning sign language, and I definitely know more than I think I do. It’s still a little difficult to practice, because we don’t need to use it regularly just yet.  Braxton has yet to pick up any signs, but we try to sign with him to give him at least the exposure.  We are making more of an effort to commit many of the signs to memory and have done pretty well.  Aileen has surely been the best.  She loves to learn new signs and is often asking for the sign to different objects.  It’s awesome to see her take to it and see the pride she has when she uses a sign correctly.  I’m certain Braxton will learn soon too, but until then, we are working very hard to learn and understand the ways in which he is communicating with us NOW.

There are days where I just have no idea what’s going on.  It’s frustrating for us and for him. He will just cry about everything and we offer his favorite toy, change him, feed him, try to cuddle, try to put him to sleep, and just nothing works.  Braxton is usually very happy, but just like any other kid, he has days where he is just a grump.   Just imagine not being able to express yourself or get your need addressed.  I had laryngitis pretty bad a while back and absolutely could not speak for about 3 days.  I was miserable.  Miserable after only THREE days! Couldn’t imagine being without words every day of my life! It’s a tough road ahead, but I know we will get through it.  Braxton has taught us so much and continues to do so each and every day.  He definitely reminds me to keep an open mind when it comes to new milestones and new methods of teaching him.  Just because “I’ve done this before,” or read a book once, does NOT at ALL mean I know what I’m doing.  We learn something new every day.  I notice new ways that Braxton communicates with us all the time.

If you are a new parent, new to parenting a child with special needs, or just having a day where you don’t understand your child, take a deep breath and relax! Allow them to teach you! If you just sit back and watch, you will see their communication skills come out in ways you never imagined.  They will show you exactly what they need if you give them a little time.  If it’s just a grumpy day, it’s ok to leave the room for a few moments, you can both use the space to clear your head.  Just forget what you thought you knew before you had kids, all that matters is what they are going to teach you every day for the rest of your life.

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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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Misplaced Emotions

So, here’s the root of my reasoning behind starting the blog.  All too often, I have feelings that I just can’t share with anyone else besides Joseph. I need some kind of outlet to put all these emotions down.  Not necessarily looking for anyone to have pity on me or offer advice, but getting it all out is good for me, and if anyone comes across it I just want them to “listen.”  This is the perfect way to do that.  Plus, it’s really a great tool for keeping family and friends in the loop.  I wish I could remember everyone who asks for an update, now you can just look for it yourself 🙂

The other day, I posted a video of Braxton trying to crawl on facebook. I was super excited about it….then I realized Braxton is almost 14 months old and barely crawling.  Another friend later posted about how their 10-month old was already walking and had several teeth.  She was just posting as another excited mother, not to spite me. But, as a mom, you can’t help but see that and think man my kid is older and not anywhere near that.  I see post after post like this, all the kids younger than Braxton hitting milestones left and right way ahead of schedule. I start to feel like maybe I’ve failed him in some way.  It really sucks. Anything that makes you feel like an inadequate mother is disheartening.  Then, I remembered that I just need to step away.  Braxton is a Special Needs child. He’s not like other kids, he’s never going to be.  And truthfully, the fact that he is ALIVE is a miracle itself! He wasn’t supposed to make it and he did. He continues to thrive and surpass expectations, and that is what I should be proud of.

Even “normal” kids develop differently and hit milestones differently.  But, for some reason we just can’t seem to keep ourselves from comparing our kids. Why do we do that?? It’s unfair to our kids and it’s unfair to ourselves.  We all do the best we can to raise our kids and overcome challenges that we face daily.  Just a hard pill to swallow I guess.  I took such good care of myself during pregnancy, I’d say even better than when I was pregnant with my daughter, and for what? My kid has all these issues to deal with.  It’s really easy for me to slip into these days where I blame myself and feel like there is something more I could have done. But the simple fact is..there isn’t.  There isn’t anything I could have or should have done differently.  This is just the hand we were dealt, and I’m going to do everything I can to ensure my son’s success.  He’s going to be ok. I’m going to be ok. We’re all going to be ok.

We’ve got a great team of doctors and therapists and they are all TRULY on our side.  It’s amazing how great they all are and how willing they are to help us.  To help us get the services we need and help us understand our treatment goals.  We’ve met a lot of people over the past year, and I’m lucky they’re all on our side.

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