Tag Archives: strength

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