Happy World Meningitis Day everyone! Being that I’ve battled viral meningitis twice I wanted to encourage everyone to check out all the fact sheets out there on meningitis. There are two kinds, viral and bacterial. Both can have some pretty devastating side effects and outcomes. Being aware of causes and symptoms is so important! And probably the biggest thing I want everyone to walk away with today is to TRUST YOUR INSTINCTS and ACT FAST. I only had a headache the second time around. No fever or other symptoms, and all my labs were normal. But I remembered THAT headache from the first time I had it and insisted that medical staff continue running more tests. I even had an ER doc yell at me! But I refused to back down. I just knew I was sick again. And I was right! Thank God I am a social worker with lots of medical experience because with as severe as my encephalopathy was, had I not adamantly advocated for myself, I would be lucky to have survived without significant neurological issues. OR WORSE! So please take the time to read up on meningitis today. Tuck the information away in your memory, just in case.
Well, I hope you all have a day where you learn some pretty important stuff!!!
I have mentioned before these Reese’s biggest delays are in her oral motor development. It’s common among people with Down Syndrome and speech therapy works wonders for them. Reese still only speaks minimally and when she does speak she is often hard to understand. Her family, teachers and caregivers understand her but most everyone else would have a difficult time. This means I have to trust that the people I leave her with will take the time and make the effort to figure out what she needs when she is distressed. Reese also does not chew. She is a choking hazard. All day, every day. Awake or asleep. If this isn’t enough to keep a mother from ever sleeping soundly at night, I don’t know what is. Again. I must trust the people I leave her with to make sure she is safe. That she is watched around food at all times. And that she isn’t forced to eat something that she can’t. It’s terrifying to think of the consequences. Terrifying. Especially on days when I go to clean out her lunchbox and find a chocolate chip.
A chocolate chip.
To most of us when we see a chocolate chip we think YUM. Or SWEET. Or COOKIE. And I admit, I am one of those people.
But Reese, is not.
To her, an innocent chocolate chip is something that could potentially harm her. It is anxiety provoking. It is not a treat. It is a threat to her well-being.
I don’t normally focus on Reese’s delays. To me she is developing just the way God intended. She is capable. She is smart. She is loving. And so so silly. I think she teaches me more than I teach her. She reminds me to slow down. To stay in the moment. That life is precious. Every. Moment. She is a gift. She is a joy. MY JOY. And I love her fiercely.
Whether you have a typical child or a child with special needs, parenting is not for the faint of heart. There are days when I feel like a warrior for my children. I would walk through fire for them. Literally. Loving them has given me a strength I never knew I had. An invincibility and fearlessness allowing me to protect them against any concern that comes their way. And yet, there are those days when I find myself reduced to tears by a single chocolate chip.
Well, I hope you all have a day where you don’t worry!!!
Happy World Down Syndrome Day everyone!!! WDSD is celebrated on 21st day of the 3rd month. Can you guess why? Because it is the triplication (trisomy) of the 21st chromosome that causes Down Syndrome. 3/21, get it?!?! I love it! And apparently the world agrees because since 2012 this day has been recognized by the United Nations as a GLOBAL day of awareness! Cool stuff!
I have always said that Reese is a gift, not just to me and our family but to everyone who has come to know her. Not many people know when and where I was told Reese had Down Syndrome. I was on my way to a little league game for G3 and Libs. My doctor called and I pulled my car over to a small side street in Villa Park, California. What I knew deep down, was confirmed. Reese had Down Syndrome. I did not cry that day nor any other day thereafter because of what I was told. Reese was who God made her to be. She was going to be perfectly her, and I was chosen to be her mom. I loved my daughter. Period. It was in that moment sitting in my car alone, hearing those words DOWN SYNDROME, that I felt a clarity wash over me. I thought, this child will change the world. I know it’s not a typical reaction that you hear about with situations like these. But those friends and family who walked with me through those first few months can attest, no tears fell from my eyes. What came was a fierce love and an excitement to see all the ways this little miracle girl would change hearts and minds. She is destined for great things. I truly believe with all of my heart that Reese was born at this time, in this world, for a mighty purpose … and WE are all part of that purpose. Either through knowing me or Reese personally, through social media or this blog many of you have come to have an awareness of Down Syndrome that you probably never had before. An awareness that you now live and spread to others. Your relationship with Reese, no matter how distant, coupled with your understanding of Down Syndrome has undoubtably helped change this world for the better. And I am abundantly grateful that each and every one of you was chosen to be a part of this beautiful journey with us. 💙💛
Well, I hope you all have a day where you love someone and all their extra parts!!!