Four Days Of Gastro Woes

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The past few days have been tough on Olivia. 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. Craig and I will take turns, sleeping with her to make sure she doesn’t choke from vomiting in her sleep, positioning her throughout the night to lessen the pain and giving her 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; 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, continue this unending vomit cycle. When I see her go through all of this I can’t help but wonder, will she ever know what a pain free day is like?

And yet, despite it all, she still smiles and although completely exhausted, wants to play! She is a child who was born never knowing a life without pain and discomfort. Her tenacious spirit serves her well; pushing through the hellishness of this condition and striving to be a kid.

With everything this little munchkin has endured in her five years, she keeps persevering. Sitting 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, but I do know there will be more days like this that lie ahead. So try as I may to search for positivity in this moment, the harsh reality is Cerebral Palsy will continue to wage war on my daughter. We will make it through this battle, but there will be more to fight in the days, months and years to come.

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It Takes A Village

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When you become a parent to a typically developing child, you are flooded with helpful advice from family, friends and other seasoned parents. But, when you become a parent to a child with extraordinary needs, medical fragility and developmental delays; suddenly you feel isolated and alone. There is no one rushing to offer you supporting advice or wrapping you in this warm blanket of knowledge. The feeling of isolation and trying to navigate this new path can feel a bit like being dropped into the centre of some foreign land. You’re left alone, trying your best to learn the language, but don’t know who to turn to for guidance and support.

This is how we felt.

It took time for us to develop our village. I remember the feeling of reassurance I had, the first time we met the members of Olivia’s developmental team. It was then we began learning the language of Cerebral Palsy. From there our village grew. We began meeting fellow parents and families, each having children or siblings with extraordinary needs. I began taking Olivia to play groups in our community that were inclusive and accessible, where children and parents could connect. I developed a genuine feeling of acceptance amongst these parents. We shared information of therapies we had tried, some better than others. We offered advice pertaining to sleep, feeding and lifting. We shared our feelings and discovered a commonality; the feeling of isolation.

Our village continues to grow even still. We continue to participate in support groups for families raising children with extraordinary needs. If you have never attended one, I recommend you do. These groups offer support, understanding, and community for everyone involved.

We all need to feel accepted, supported, understood and heard. This is even more true for parents raising children with extraordinary needs. If I can give any advice to family members or friends who feel unsure how to help a family they know raising a child with exceptional needs; just be there for them, validate their feelings, offer to play or hold the child so the parent can take a shower or finish a hot cup of coffee. Don’t feel sorry for the family, celebrate their new baby! This child will face more adversity in its life than you will know, so don’t add to it. Be the change, be accepting, be supportive, be inclusive. It takes a village.

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