When you are this cute you have to wear your #tags4tots sign right on you to remind others not to touch! You make it almost impossible with those cute cheeks! #heartwarrior#chd#chdawareness www.tags4tots.com
One of the many blessings of having Rosie is meeting her T21 buddies and families. Having the T21 community in my life is such a blessing.
After Rosie's eye test this morning, a few of us met for lunch. As ever, the main topic of conversation was the patchwork of NHS support locally, so it's great that there's going to be a pathway for T21 kids locally.
We also shared stories of diagnosis, ranging from the good to the terrible. Although life with Rosie isn't always easy, she is an amazing blessing. There is genuinely nothing to be sorry about. I'm so fortunate to have friends, such as @tibbskatie, who are strong and positive advocates for Downs Syndrome in the healthcare sector. It's so important that new mums and mums to be get an accurate representation of what it is like to be a mother to a child with Downs Syndrome. Really, all mums at higher risk of T21 should just be signposted to @lovedailydoseofbella @madelinesmodelling_ @flicks_on_fleek @thesanchezsix as well as the fabulous Ollie & Cameron and Don’t be Sorry on facebook.
We're creating a special heart pillow for #CHDwarriors currently battling CHD in the hospital and we need your Heart Warrior's help! Whether sketched in pencil, drawn in crayon or painted with water colors, we want to see it! (Mom and Dad, feel free to help out if your warrior is young). These heart pillows are meant to provide comfort to families who are in the thick of the battle and we need your little one's help to do just that! We will be collecting entries for one week starting today, let the creativity fly!
Time with these women always fills my heart-- a group of Moms who "get it" and who accept me despite my reality being many of their worst nightmares. These women have handed their children over to a surgeon to have their chests opened and their tiny hearts repaired, not knowing if they'd see them again with their eyes open-- they stay on top of rigorous medicine schedules-- they spend time away from their spouses and other children to hold vigil at their heart warrior's bedside-- they spend holidays, birthdays, and special occasions in the hospital-- they've traded kids' extracurricular activities for Dr appointments, recovery from surgery, therapy, and frequent ER visits-- they've pleaded with God to save their child, they've seen other Moms say last goodbyes to theirs, and they've wished SO HARD that they could take on their child's pain if it would make them all better. Some of them are new to this world and others well-versed. These women know REAL struggles and, although everyday is far from easy, they know that each new day with their warrior is a gift. And through it all, look at these smiles! There wasn't a quiet second during our 4 hours together last night ❤️❤️❤️ We call our children with congenital heart disease "heart warriors" but these women are warriors too! 💪🏼💪🏼💪🏼
How did we get here? Why? What went wrong?
We went from being excited to share that mama got to hold Mason back to intubation.
Today was a really emotional day. Mason seemed to be settling his episodes further out and less frequently. We stayed up all night only getting 2-3 hours of sleep watching him, waiting for his next episode.
This morning we got a new doctor come in who instantly made me feel at ease. Our new nurse also let me hold Mason for a little while. My heart was overjoyed! Just a few hours later, it felt like the walls were crashing around us.
Mason had another episode but this time it was bad. He quit breathing. His entire color turned. They had to make the decision to intubate. We knew yesterday evening something just wasn't right. It took a new doctor on shift and him seeing the episode and him not breathing to finally do something aggressive about it.
This little guy has struggled more than any child should ever have to. He's been poked, prodded, operationed on, tubes down his nose, tubes down his throat, tubes and wires in his chest, ultrasounds and x rays galore. He's fought and fought hard. He's continued to fight. He hasn't given up, even when we knew he was just barely hanging on yesterday and today. He's been so strong while we have felt so weak.
So whilst I wouldn't typically share the photo of him with his breathing tube. I'm showing you just how real and hard this ride has been. How real and raw this is. How he can go from seeming to progress to instantly taking the downhill battle. While many are complaining about it being a Monday and returning back to school and work, take a second and think of the fight that my little guy (and so many others) have to go through to survive. So be thankful and fight each day as strong as Mason.
I have spent almost every night here for the past 3 and a half months. It was a home away from home so that I could be here in Charleston everyday for Oliver. Last night was my last night there because Oliver was moved to a room where I can be with him all the time. I'm sad to leave, but hopefully this just means we are that much closer to coming home! I am so thankful that this house exists and that they have been here for me, because without them I don't know what we would have done living 2 hours away from Charleston. #littleolivergray#olivergraysheartjourney#heartwarrior#ronaldmcdonaldhouse#charlestonsc
T.O.U.C.H. Heart picnic!!!! We look forward to going every year!!!! CHOI is such an amazing hospital with amazing staff!!! Love being able to see them with a day of fun!!!! It is so wonderful for Lily to be able to meet other kids just like her!!!
He fell quite a few times today, but he got back up, chalked up and tried again. Some people would see this as a failure of a training day. In his case it isn't. It's proof that he is willing to try, try and try again. Coach Christine is a huge blessing to me. She pushes him just as hard as I do. She sees his potential. #adaptiveascents#adaptiveclimbinginitiative#northface#heartwarrior
It's been 2 years of his magical life.
You are wonderful.
You bring magic to our life.
Even if this is still a beggining of our journey.
But i know since i hold you for the first time, 2 years ago.
You are a warrior.
You are worth fighting for.
Whatever it takes, never never give up.
May Allah always ease your way, darling.
Happy birthday Muhammad Harsya Danendra. ❤️❤️❤️ #akulangka#rarewarrior#heartwarrior#digeorgesyndrome#chdwarrior#22qutie
"He/She who wants a rose must respect the thorn." A reminder to honor all the parts of a journey towards something awesome- every relationship and every goal is bound to have its prickly parts! May the thorns awaken our devotion even more... Grateful for this thought while sipping Hawthorn (heart protector medicine) tea! ❤️🌹🙏🏾 #teabagwisdom#heartwarrior#devotion#femmebotanica#womenempowerment#heartmedicine