Four Days Of Gastro Woes

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The past few days have been tough on Olivia (and to be honest, my husband and I). Reflux pain, vomiting and many sleepless nights has drained her completely. We never see these flare ups coming and when they do, it could be a day or days before she is over it. It usually entails one of us, myself or my husband, sleeping with her to make sure she doesn’t choke from vomiting in her sleep, positioning her throughout the night to lessen the pain on her abdomen, and giving her reflux meds  and pain meds around the clock, hoping to relieve some of the pain she’s feeling.

One of the many linked conditions to Cerebral Palsy is poor digestion.  Because CP affects all muscle function and control, the digestive system which is made up of soft muscle tissue is highly affected by this, leaving Olivia with gastroesophageal reflux disease  (GERD) and other issues surrounding her entire digestive system.

It’s during times like this I wish it were possible to switch places with her. It kills me watching her go through this.

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Medications offer little relief; instead excessive vomiting caused by mucus from her nasal passages that pools into her throat and chest, keeps this unending vomit cycle going, that in turn produces more acids affecting her reflux. You can understand our frustration.

And yet, despite it all, she still smiles and although completely exhausted, wants to play!

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This kid blows me away! She is such a trooper, as biased as that may sound because she’s mine, she honestly is one tough cookie. With everything this little munchkin has endured in her five years, she keeps persevering.

As I sit here rocking her in my lap, listening to her finally sleeping peacefully, and tears in my eyes; I know that tomorrow could be a better day. I know that despite these last few difficult, completely exhausting days; it won’t last forever. The medications will eventually begin to work and Olivia will be her vibrant, happy and funny self again.

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Keep Calm And Turn On Barney!!!!

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Dinnertime in our home is usually a toss up between a laid back family dinner to a full blown, chaotic gong show! A lot has to do with what type of mood Olivia is in. Today for instance, she was tired from a fun day at school; come 4:30, she was done and had it with the world! There was only one direction this evening was heading….Gong Show! Tears, sobbing and rivers of snot on top of trying to bust out of her chair meant epic meltdown. (Redhead….enough said)

Ugh…good times…

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I’m not gonna lie, everyone in the house reaches high levels of stress. Even our dog starts howling and barking, making the situation that much more interesting. It’s wine o’clock somewhere, right?

I have become a huge fan of Barney. Yes I’m talking about that big purple dinosaur that bounces around singing, asking everyone to be his friend. That beautiful purple bastard is my saving grace!

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Olivia just has to hear his voice and voila, all is right with her world.

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The tears slow and the screaming stops. Thank you Barney! You are my hero.

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We Really Aren’t That Different

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Today I had the privilege of sitting in with a fabulous group of special needs parents for a support group meeting. To be honest, this was my first time. As much as I had always wanted to organize or be able to participate in one in the early part of our special needs journey, one simply didn’t exist or come to fruition. Why? Well even though I felt every parent with a special needs child could benefit from information provided by seasoned special needs parents, not every other family shared in my opinion. It took some questions and input to understand how some parents would find a support group to be quite difficult to handle. 

The reality is each one of us are at different stages within our journey. Some of us are grieving and maybe extremely angry and lost. Some of us are dealing with medically fragile children and the thought of hearing another parent speak of their child thriving is disheartening to us. Some of us are still struggling to understand our child’s diagnosis and how to properly care for them. Some of us lack the proper resources and are struggling to have a few moments to care for ourself and our relationships, let alone be able to dedicate an hour per week to a support group.

Whatever your reason is….it’s absolutely ok.

What I would like to say to those who are on the fence about support groups; maybe not all of us have been where you’ve been or seen what you’ve had to see, but we have all been in that chair or office when our child’s doctor delivered a diagnosis that would forever change the life we thought we’d  have with our child. We have experienced loneliness,  loss, anger, sadness,  frustration, emotional breakdowns, moments of joy, happiness and celebration when our children overcome. We have had to fight for inclusion, acceptance,  equality and awareness for our children. We have struggled with marital relationships, friendships and family connections. We have been impacted financially by costly equipment,  home renovations, alternative therapies, and resources that were not covered by traditional means; like medical insurance. Believe it or not, we get you. Our children may have differing diagnosis, or similar. It doesn’t matter. What matters is we want to be there for you. We may have more in common than you think.

What I got out of today’s group was incredible. I felt like I was among my people. Each person in that room had a child with a diagnosis completely different from Olivia’s, but we all shared similar feelings, struggles and celebrated triumphs that were achieved. I also took away new information on products and resources I never knew existed. It was a safe space to share if I felt to, or to listen and absorb. You take away or put in what you choose. No pressure. No judgement.

I’m looking forward to the next time…

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It Takes A Village

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We have all heard the expression, “It takes a village to raise a child.” This couldn’t be more true for raising a child with special needs. When I look back at all the medical professionals, therapists, support people who have impacted our lives, I feel overwhelmed with gratitude. Without the help and guidance of these individuals, we would have struggled to provide our daughter with the proper support and care, which she so needed.

When you become a parent for the first time to a child without extreme needs, you are flooded with helpful advice from family, friends and other seasoned parents. But, when you become a parent to a child with severe needs, medical fragility and developmental delays; suddenly you feel isolated and alone. There is no one rushing to assist you in supporting your child because often, many can’t understand your situation because they have never experienced it before.

When we were first introduced to Olivia’s support team, I honestly wanted to jump up and hug them! The immediate sense of reassurance they instilled, allowed us to believe that there was hope and possibility of a future filled with opportunity for Olivia; whatever that may be. They became our village. They not only worked hard to support our daughter, they were also there (and still are) for us!

Without the dedicated and compassionate support they gave to our family, we would never have truly seen our daughter beyond the Cerebral Palsy. Today, these wonderful people have become as close as family to our hearts. Although they have countless clients, work long hours away from their own families, and put in an astounding amount of time to love and support our kids; they never make you feel unimportant. I have always felt like I had their undivided attention and literally could call them in any time of crisis (which I have). 

To all of the members of Olivia’s support team, I thank you from the bottom of my heart for being the best village any special needs family could ask for!

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