Take today.
I had to lug Noal to some of Pip's appointments, usually I try to book them for when he is in daycare but some days that just doesn't happen...But I was prepared; a bag of snacks, my phone fully charged for a YouTube video if needed, toys and my patience fully charged and ready to go.
Two hours in, a few major toddler tantis, making a "fishing pole" out of a measuring tape and latex glove, snacks and 3 granola bars demolished and my patience now patiently waiting for a gin & tonic.
But it was during Pip's second appointment where I had to hold her down while two nurses poked both of her arms in search of her little veins, without any luck that I just about lost it...She was desperately struggling to be free, crying harder than I've ever heard her, saying "mum mum mum" over and over and her one little arm was already starting to bruise, when Noal turned his "fishing pole" into a sword and said, "That's enough, you ladies leave my sista alone".
When they wouldn't stop because they finally found a vein, Noal looked at me and said, "Momma tell them to beat it"...
In that moment when I was so close to tears myself, so jealous of others whose day revolved around which park to go to and not which arm to let a nurse poke, when I was so frustrated about how our day was unfolding, my little man showed his sweet, protective heart and made me realize it's all okay.
This is all part of our story...The endless appointments...The dreaded blood work...The heart defects, vision problems, Hypotonia and now the news that Pip has Hypothyroidism - Resulting in medication and continual blood work.
But it's still all okay.
Sometimes it all just feels a bit much, and that she was the unfortunate one who got all the other health complications associated with Down syndrome and just can't catch a break. Her vision problems are consuming in itself, her heart surgery just about did me in and now while this is definitely treatable it's still a serious thing.
At times, like Noal I wish I could just take her away, tell all the nurses and doctors and test to "beat it"....
But it's all still okay - She's here, glasses, patches, scars & pills and really that's all that matters...
4 Comments
WE have made it through heart surgery, 2 eye surgeries, 3 urinary surgeries, 5 ear tube surgeries, 3 mouth surgeries, tonsils and adenoids, c-Pap and oxygen at night, apraxia, aphasia, hypotonia, and hypothyroidism. It can be overwhelming. Wishing you strength of spirit (you have it!), love and support (you have it!) and an escape on occasion (you have it!). Stay strong. Isn't it ironic and karma to realize that when they have the most struggles, they seem to have the most to offer the world. Just a touch of poetic justice.
ReplyDeletePip is sooo beautiful!!! She makes me smile whenever I see her!!! She is so lucky to have a momma and big brother her love her sooo incredibly much :D fills my heart with joy!!! You're so great, momma!
ReplyDeleteBe gentle with yourself, T. Self-care is so important. This day was overwhelming and sometimes the best thing you can say about a day like that is it's over. (Okay, until the next one - but still.) You're doing the very best you can and that's all you can do. Your babies know that and they know how much they are loved. I hope you can spend some extra time this weekend, napping and destressing, cuddling with your sweet brood. Don't forget to take care of yourself! ♥
ReplyDeleteMy little boy was born full term at 3 pounds and I couldn't hold him for 3 days after his birth due to him being kept in a humidycrib and wired up as the nurses kept me away from him. Then 4 weeks of complications and separation from me and his daddy until we finally brought him home. When I read your post it makes me cry remembering the painful procedures my beautiful boy had to endure, and my helplessness in protecting him. I am sending you so much love and I adore your family
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