Tag Archives: parenting special needs child

Every Day, We Choose Joy

When life deals you a hand you didn’t expect, you can sit and be mad about all the things you think you’ve missed out on, or you can adapt and learn to embrace the life in front of you.  Sometimes, you go back and forth between those choices as you go through stages of grief and mourning the life that could have been, before you learn to love the life you have and make a choice to be happy.

We are often asked “how we do it?” or told how impressive our positive outlook is or that we’re special people so God gave us a special child.  Truth is, most days I don’t know what I’m doing or how I’m even functioning. Some days I’m not so positive, I sit and think about all the what-ifs and cry and worry.  And we aren’t special. We’re normal people, just like you.  It doesn’t take a special kind of person to parent a child with special needs, over time you BECOME who you NEED to be for the sake of your child.  We all have it in us to rise to the occasion, but it’s up to you to CHOOSE to do so.  The path to making that choice can be tumultuous and you go through every emotion possible, but eventually you CAN find your way to happiness.  I can’t promise every day is going to be happy. There will always be hard days.  But I CAN promise that the good will always outweigh the bad.

Perhaps that’s a promise to myself, since we have a very important appointment coming up next week, and it’s been weighing heavily on my heart.  It’s possibly the culmination of this journey and the beginning of the next, or possibly not.  In December, we had blood drawn and sent off for Exome Sequencing.  After many genetics tests, I was certain this was the one we needed, the one that was going to answer all of our questions.  When we arrived and the genetics counselor told me that in reality, this test has only provided a diagnosis for 20% of the patients who have had it done.  This was much lower than I thought and my hope was once again deflated.  Then, a few weeks later, I got a call from the genetics office telling me results for our test would be in by April 13th and that the doctor wanted us to come in for our results.  I told the lady we had an appointment already scheduled for the end of May and asked if we could just keep that one.  She put me on hold and came back and said “No, the doctor would like you here when your results come in.” I was baffled. Then, I was excited! They found something! No, there’s no way, it’s too soon, it’s only been a few weeks.  I spoke with one of our therapists, and she too, said there must be a diagnosis or at least a lead.  Again, I was full of hope and also impatience. But I wanted to know now, if they knew something why couldn’t they tell me? Perhaps they knew nothing at all? But surely….SURELY they would not call and move my appointment UP to tell me no news…would they?

Hard to believe that conversation took place 3 months ago.  I didn’t know what I was going to do to keep from going crazy. All day long, I thought about that conversation.  Every possible scenario played through my mind.  What if they found something? What if what they found is so rare it doesn’t give us any information at all? What if the doctor was just going to be out of the office on our original appointment so they moved us up? How was I going to keep from wondering every single day what that call meant. That night, I cried.  I broke down. It was all too much. So overwhelming. And just like I had before when we came out of NICU, I made a choice.  I chose joy.  The what-if game brings nothing but heartache.  My life is full of enough uncertainty daily, I didn’t need to consciously entertain it any more.

21 months without a diagnosis. 21 months of worry. 21 months of uncertainty, fear of the unknown, wondering if my child would wake up the next day, wondering if my child would crawl, wondering if he will walk, wondering if he will speak.  Does a diagnosis change any of that? No, probably not. Best case scenario is that he’s diagnosed with something that there is already research for so we have some kind of prognosis to go by.  Sure, that’s not entirely accurate, but it would at least give us some idea about what life might be like.  Something to plan for. Something to teach my daughter about so she’s not scared and so she understands what’s going on with her brother.  Something to say this is a completely random gene mutation and it wasn’t caused by anything YOU did. (Because, yes, there are some days I do blame myself. I must have done something for this to happen. In all likelihood I did nothing, but it’s a feeling that is hard to shake)  Something that says if I decide to have children again I don’t have to worry about this. Or possibly that it will happen again…but at least next time I’d be prepared. I’d have a much better idea of what to do.  Worst case scenario…no diagnosis.  A “sorry, we still don’t know what’s happening with your child, but hey come back in 6 months and we’ll see if he’s grown into his diagnosis.”  Where do we go from there? What other tests are there? I’m sure there’s more, but what if there isn’t.  What if we’re to be 20 years with no diagnosis waiting for the science to catch up and give us the answers we want.  No, I’m not being crazy. There are families 20 years in to the journey still trying to find a diagnosis for their child.

These are the thoughts I suppress, because if this is all I focused on, I’d be a wreck.  I’d miss out on all of the wonderful and amazing things Braxton is doing.  Focusing too long on the unknown and the negative causes you to lose focus on the positive aspects of life.  Braxton is HERE. Braxton is ALIVE. Braxton is crawling. Braxton is making progress. Braxton is laughing. He is full of life. And he is full of so much joy that it just pours out of him and into the lives of others.  These are the things I choose to focus on.  I’m not going to sit here and pretend that I’ve got it all figured out, because I don’t.  I’m not a better parent than you.  I’m not a stronger person than you.  If you were in my shoes, you’d do exactly what I’m doing. You, too, would rise to the occasion.  You’d be surprised to learn the strength you truly possess.  However, I don’t wish this on you. It’s quite the paradox. I love the life I live, but I wouldn’t wish it on anyone.  It’s hard and some days it sucks. The rewards are great, but the hours are long.  But, it’s all about perspective.  Not just the journey with a child with special needs.  Life in general. Life is about perspective. It’s about what YOU choose to make it about.  You can choose to focus on all the problems you have, or you can choose to see the brighter side.  You can choose pity, misery, and uncertainty, or you can choose to have hope, love and joy.  For us, it’s simple…each and every single day, we choose joy.  We choose to live day by day cherishing each day and all the good in every day.  Yes, sometimes, we too complain about every day woes, but every day at the end of the day as we watch our children laugh and play we are reminded that this life, no matter how hard it gets (or what next week’s results might bring us), is full of so much joy and happiness.

Choose Joy Everyday

This post was also published on The Mighty.

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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