Tag Archives: thankful

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

We Are Thankful

‘Tis the season of giving thanks and this year we have so much to be thankful for.  This time last year, Braxton was 5 months old and we were still trying to figure out what was next in our journey.  We have all come a long way in the past year.

As a family, we are happier and stronger than we were last year.  The undiagnosed journey has a way of turning lives completely upside down.  Through the year we’ve learned how to handle the stresses of it all [We’re no experts, but I think we do pretty well] and are finally able to enjoy our lives to the fullest. Make no mistake, the path to this acceptance is a long and treacherous road, but if you can make it through, and you will make it through, it’s completely worth it.

Today and everyday we are so thankful to wake up and see Braxton’s smiling face another day.  Once a doctor tells you that your child isn’t going to live more than a month, you truly realize the miracle that is life.  I’m thankful for 6 am wake-ups because it means my child is alive.  Braxton is so alive.  He has come so far this year, heck he’s come so far in the past two months! Four months ago, Braxton couldn’t sit, couldn’t crawl, couldn’t stand, he just laid there and we had to do everything for him.  Then, it was like a switch turned on for him. At 12 months he finally sat unassisted, 14 months he was moving from a sitting position to up on all fours trying to crawl and moving backwards, 15 months he was pivoting and moving with purpose, just before 16 months he finally started crawling, now at almost 17 months he is kneeling and pulling himself to stand….walking is not far away. We are so very thankful for each and every one of these steps.  There are so many little things we take for granted in life, but when you are told your child can’t or probably won’t ever learn to do these very basic things, the extreme joy you feel inside when he accomplishes any single one of them is unexplainable.  There are so many emotions at once – happiness, pride, joy, excitement, angst, anticipation for the next, and most importantly gratitude.  We are so grateful, so thankful to see our child growing and thriving.  He’s happy, he’s loving, he’s an adventurer, he’s a fighter, he’s a miracle, he’s the joy of our world. And there is still SO MUCH more in store for him and I can’t wait to see what goal he accomplishes next.  For now, we are living in the moment and are ever so thankful for every minute he is in our lives.

Halfway There

This is just 2 weeks ago. Braxton could only manage to pull himself halfway up.

Standing Tall

This was just the other night. Braxton found his way all the way up.

 

 

Aileen and Mom

Thankful for my mini-me

To my daughter, Aileen. [She’s 6 and can’t read this, but I have to share] I am thankful for my daughter. I am thankful Joseph has taken her in as his own and has been amazing with her the past few years.  I am thankful for her patience and impatience. I’m thankful that she makes me realize when I’m not being fair and ignoring her. I don’t mean to, but when your 6 year old tells you that she feels like you don’t play with her enough, it stings, but it’s honest, and I’m thankful for that honesty.  This is still new to me, having a child with special needs, I’m still learning to balance having 2 kids. Expecting a 6 year old to be patient with that is asking adult things of a child, and I’m grateful she still loves me no matter what. She’s so smart and such an incredible little girl. She’s gotten much more helpful with Braxton and less jealous. Now that he’s moving, she can actually play with him. I’m thankful for those moments. I’m thankful that Braxton has an amazing big sister. I love you with all my heart.

Mom and Dad

To my other half, Joseph. This year has been full of ups and downs, smiles and tears, fun and sleepless nights.  Thank you for being an amazing father.  There are so many guys who would have run as fast and as far as they could from this situation, but you have been a wonderful man and here for us in so many ways.  Thank you for running all over town because I booked 3 appointments in one day, thank you for waking up when you’re home so I can sleep, thank you for cooking and cleaning, thank you for sticking with a job that keeps you away because you know it provides for us.  Thank you for everything you do for me and our family.  I love you more than you’ll ever know.

We are thankful for our therapists. Oh gosh, our therapists! I love them! All of them!! They are so much more than therapists…they are our friends, they are our family.  They love and care for Braxton not as patients, but as children of their own.  I am so thankful our team has such incredible passion for what they do and aren’t just here for a paycheck.  They go through all our joy and sorrow with us. They cheer in excitement when I send them a video of Braxton doing something for the first time. They share my frustration when he regresses and we can’t seem to figure out why.  They answer every one of my questions, never tiring or making me feel like a burden.  I know you guys read this, thank you. I can’t say that enough. Thank you for all that you do and for loving our child, we are so thankful that you helped him get where he is today.  I watch him crawl, pick up a toy, take a few bites of food and I’m just in awe of the things you helped us do…things I never thought he’d do, but he does because you helped us.

We are thankful for our family and friends. Family is important in times like these and our families have been great.  Our family is there to answer our calls and hear our cries and join in our joys and sorrows.  They are here to watch Braxton when we have to work or need a short break to regain our strength. To our family, we love you and thank you.  To our friends, you don’t know how much it means to us to see you share our story or to see your words of encouragement when we express frustration because we’re at the doctor for the gazillionth time.  To understand that it’s a huge deal when we post statuses about milestones Braxton should have reached months ago, to see you share in our excitement without judgement is a blessing.  Thank you, each of you is amazing.

We are thankful for our readers.  We started this blog to keep our friends and family updated, but we’ve received so much support from complete strangers.  Thank you for your love and positivity.  We’re at over 7,600 views in just a few short months of me starting this blog and I still can’t  believe the impact it’s had.  To everyone who reads this, thank you. Thank you for taking time to enter our world. Thank you for taking the time to like, comment, or email us. We are so appreciative.

Today and everyday, we are thankful.  Happy Thanksgiving to you and yours!

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