Tag Archives: emotion

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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Braxton and Mommy Day

BIG Smile for momma :)

BIG Smile for momma 🙂

It’s been a while since Braxton and I had a day to ourselves. Aileen is with her dad this weekend and Joseph is gone for business, so it was just Brax and me. We had a pretty laid back day, but I noticed so many new things today and in the past week or so.

Braxton is really starting to recognize us and show emotion when does. In the past few weeks, every time I go to pick him up from his crib I stand over him and when he looks up and notices me, he flashes a huge smile. When I put my hands out and motion “come here” he gets noticeably excited and immediately rolls over, pushes himself up to his knees, looks right up at me and puts his hands out as if to say “pick me up, mommy!” Sometimes he will pull himself to a stand and kind of bounce in excitement. If I have to be up early, that is certainly what I want to wake up to. This is a picture my sister took when she saw him, but this is pretty much exactly what he does when I stand over his crib in the morning.

I see you!

I see you!

We came downstairs so I could feed him and I also tried to give him some applesauce by mouth. Surprisingly, he actually ate a good amount for me! Braxton ate about an ounce at breakfast and just over an ounce at lunch and dinner…yayyy!! It may not seem like much, but this is HUGE for him! He hasn’t been eating much of anything for us. It’s so funny because he puts everything, and I do mean EVERYTHING (that isn’t food) directly into his mouth and tries to chew on it. But if he even sees anything at all food related, he purses his lips, turns his head, and even puts his hand out to push me away – and sometimes screams and cries if I continue trying. I’ve tried everything from baby food, cookies, crackers, cheetos, french fries, pudding, yogurt…and every one of them as soon as they get anywhere near his face he refuses. So, getting even a few bites in is a big deal, an entire ounce is a HUGE deal, indeed! Our Speech Therapist is still very diligently working with Braxton, too. I got this photo the other day…apparently eating is also pretty hard work! He fell asleep today, too, after I fed him.

Nap after a full belly

Nap after a full belly

 

Braxton and I played a whole lot today! He is so much more interactive now and playing with purpose!! He actually mouthed his toys a lot less today than he normally does. He stood up at his little piano and played using his hands instead of his mouth. He even leaned over to find the buttons on the back and played with those. We made silly sounds back and forth to each other and when he made me laugh, hearing me laugh made him also laugh..it was so cute. We read a few books and it’s evident that Braxton actually likes being read to. He will sit still in my lap as I read to him (ok, point out pictures and describe what we see, but still) and is turning the page all by himself! [Thanks to our great Occupational Therapist, he’s doing soooo great with that….little bit less cheating today by reaching over with his left hand haha smart kid.] He even made some great transfers from our couch to the coffee table and cruised around the table!! Pretty impressive, little man! Showing off all the things he’s been working so hard to accomplish with each of his therapists. He of course sat at his patio window and I sat with him and pointed out the trees and the birds as they came in to the yard. Nice to just sit and be still.

We also went to the grocery store today, and Brax was so funny. He was making all kinds of sounds as we walked around the store. Also, as I was waiting to check out, I had my hands on the grocery cart (like I always do) and Braxton kept reaching out to me. So I turned my hands over so he could pat them like he often does, but he started clasping his hands around them and trying to pull them toward him. Each time I moved my hands like I was moving toward him he smiled and got really excited. Then, he finally grabbed my hands and pulled them to his side, and I finally realized what he was doing…he wanted me to pick him up AND he was telling me!!! This is the 2nd time he’s done this to me at the store. I tickled him and gave him a big hug and kiss since it was my turn in line and I had to put the groceries on the belt and check out. It was so awesome to see this kind of communication though. This is SO much more than he’s ever done before. Around the house, he does crawl up to us and look up and raise his hands until we pick him up, and if we walk away he cries big ol’ crocodile tears! haha Seeing him do something similar while we were out and about though, was a whole new level.

Not too long ago, I arrived at Aileen’s school to pick her up and I got Braxton out of the car, as we walked in the school, he put his little face right up to me and I felt his lips on my cheek. He caught me by surprise and when I turned to look at him he flashed me his big smile. It was the sweetest and most heart melting non-verbal “I love you” ever. Seems like ever since I wrote the post about wanting Braxton to talk, he’s been doing more things to communicate with me. Kids can usually pick up on feelings and always seem to find a way to comfort you as if you told them exactly what was going on. Or perhaps, God is working through Braxton to remind me that everything is going to be ok. To just trust in Him and the plans He has for our life. Just because things aren’t exactly how I imagined they would be, doesn’t mean that things aren’t exactly as they should be. I know that everything happens for a reason, and although waiting for that reason to become apparent is often very difficult, I am reminded that the important thing is to cherish the moments now, to live in the present and let God take care of our future.

Today has been such a great day with Braxton. I see all of the great things Braxton is doing and my heart is just so overwhelmed with joy. The simplest things, like turning a page in a book, I now understand exactly how much work went in to that and how things like that we take for granted each and every day. Days like today make me hold Braxton as he falls asleep, and when he finally does I watch him and tears just stream down my face. Not tears of sadness, but tears of joy, so much joy, as I think about where he was and where he is today. To see him do all of the things so many led me to believe he would never do, is such a miracle. To realize that he IS in fact developing communication skills and learning to communicate with us is such an indescribable feeling. This little boy never ceases to amaze me, and I can’t wait to see what happens next.

Sweet little boy asleep in momma's arms <3

Sweet little boy asleep in momma’s arms ❤

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This blog on our lives – Dad’s thoughts

I very rarely get on here to post my own personal opinions about certain subjects.  I normally let Vanessa do the talking as she is a much better writer than myself.  I can’t begin to thank you enough for showing interest in our son.  I will admit that it is hard to explain to people what is wrong with my son when I feel that there is nothing wrong.  The kid smiles, rarely cries, and is so motivated to learn new things that I don’t see his age, but rather his progress.  This is my first child.  So therefore everything he has done is a blessing.  The kid could barely crawl and now this dude is in the kitchen climbing up the pantry shelves trying to get candy.  Ok, so maybe that last little bit was a lie, but you get my point.  Back to the reason I am writing this blog.  I have seen such a HUGE improvement with Vanessa.  Not at all saying that she was crazy before, well… let’s not get into that PARTICULAR subject haha.  But, I honestly see an improvement on her outlook.  We can turn this unexpected reality into a blessing that no person could have ever imagined.  Her ability to reach out and help other people has just blown me away.   Her knowledge continues to grow on all of Braxton’s conditions.  I feel that I need to my handy dandy notebook around when she talks just in case there is a quiz later on this sermon.  HAHA.  I really mean it when I say thank you to everyone who reads and comments on this blog.  I know she is one dedicated person, especially to my son.  When she was breast feeding she would wake up every 4 hours to pump just so he had the proper nutrition.  This went on for over 9 months.  I was PRAYING for the day that she would be able to sleep longer than 3-4 hours.  She is similar to me in the fact that when we don’t have much sleep and we are hungry…well…Godzilla seems to come out in us and we attack the city.  😀 So when this blog came around I was all for it.  I know her being able to release her emotions and concerns has helped a lot because everyone needs to find some way to release their feelings.  This blended diet has been the best thing for Braxton which proves that formula is not always the best thing for a child.  I recommend it to anyone who is having problems feeding their children without throwing up.  I used to get an evil eye from people that would stare at my son while i feed him with a syringe.  I wanted to stand up and yell out “What are you looking at you ignorant MF!!”  But, then I realized that some people were never taught proper manners and are naive to think that feeding through a tube is so “special.” I honestly am all for the tube.  I think that it is a great thing.  I find out too that this is not uncommon either.   We have gone to meetings where the families talk about losing their son at 4-6 years old from an undiagnosed syndrome. 4-6 years old!!  That is horrible!  I can’t even begin to imagine their pain.  So if my son needs to be feed through a tube for all to see then so be it.  I am finding that is could be much worse so in stead of focusing on the negative, I need to focus on the positive. The kid laughs, smiles, and tolerates more than the average kid and I am proud to say that I am his father.  I fear him going to school and being teased about whatever his condition may be.  Hopefully the tube is out by then, but who knows.  I know his hearing loss is probably from my side of the family as I had hearing problems as a child also.  I know one thing tho, music is in his blood.  As son as I start to play some melody for him on piano he will stop, look, listen, and fall asleep.  I keep getting way off topic which is a very common thing for me.  I apologize.  So with all being said I appreciate all of you guys.  Some of you are old high school friends of mine and some of you are people I have never met.  All I know is that you guys have given Vanessa the strength to carry on in a normal happy life.  I appreciate that and will continue to do anything I can to help our family live as “normal” of a life as possible.  Now that I said that I don’t mean that.  About the “normal” thing.  IF anyone knows me then they know that I am not normal LOL. I just pray that we live the lives that God planned for us to.  There is a reason behind everything even if we don’t see the miracle yet.  So thank you and I hope you continue to keep up to date with these blogs.

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Remember the Moments

“We do not remember the days, we remember the moments” – Cesare Pavese

Today was a pretty amazing day.  Definitely didn’t start out that way, but something amazing happened that I will always remember.

Today, we had a follow up with our GI doctor; our first since having switched over to the blenderized diet.  Started out just as any other appointment, waiting room, exam room, routine height and weight, nothing special.  Braxton is now 26.3 pounds and 32 inches long! He has gained a little over a pound since we started the new diet 6 weeks ago.  He is continuing along his growth patterns just fine.  When our doctor came in, he went through his normal routine of questions to see what has changed.  For the first time, in a long time, I was able to tell him that everything had been great! Braxton has vomited maybe 4 times in 6 weeks (and each time was due to feeding him too quickly and not anything to do with intolerance of the homemade blend). This is a HUGE turnaround from having dealt with vomiting several times EVERY DAY! He took Braxton off his medications since his vomiting was under control and considering he hadn’t been on them in over a week anyway.  We were waiting on refills, so he was without them, but turns out he doesn’t even need them now. Yay!

FINALLY! Finally, we have found something that works! But, that’s not even the best part.  Our Dr continued to examine Braxton, and then he sat Braxton right in front of him to examine him and Brax reached out to touch the doctors face.  His pacifier fell and Braxton leaned over the edge of the exam table to see where it had fallen.  When he realized it wasn’t there (mom picked it up) he focused back on the doctor.  He held steady eye contact and continued to reach out for the doctors face.  Braxton has a fascination with glasses, so we knew he was trying to get them off the doc’s face.  As the doctor moved back and forth Braxton continued to follow him and reach with both hands for his face.  The doctor then grabbed Brax under his arms to move him back and Braxton instead stood himself up to start bouncing, and all the while he was smiling….he was playing with the doctor.

And then it happened…. our doctor made a comment about how interactive Braxton was with him this visit and that he had never been like that before.  He said he was so happy to see such progress from Braxton considering where he was when he first saw him.  He said he was so happy that he wanted to CRY.  As I sat and watched him continue to play with Braxton I noticed the tears well up in his eyes and heard his voice waver as he tried to hold them back.  He had genuine emotion and was truly happy to see just how far Braxton has come.  It was an amazing moment.  Amazing to see that this man was more invested in my child’s success than I thought.  And it wasn’t simply the eating part of it.  He was thrilled to see Braxton growing and thriving and reaching milestones they never thought possible.  It warms my heart to know we have such a great doctor who truly cares for his patients. I wish I had gotten a picture, but I was just as caught up in the moment….and yes, I had to fight back tears too.  This is one of those moments we’ll always remember.  We may not remember today, but we will always remember the moment one of Braxton’s doctors was literally moved to tears over the outstanding progress little man has made.  This kid is destined for greatness.

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