I know I haven’t blogged lately, especially about Hannah, but today I just needed to get it out. I’m single parenting again right now and that makes me even more tired and on top of being already so exhausted…..well, sometimes getting it out helps. If you see typos or grammar mistakes please ignore them….I will proofread it but I’m tired so there might be mistakes.
We had to do an IQ test on Hannah for a waiver we are applying for and the results came back yesterday…..it was so hard to read….not hard like I didn’t understand it, hard like in the results were hard to accept as her mom. I know how smart she is, it’s just not book smarts. We have always said her “receptive” language is beautiful, it is her “expressive” language that she struggles with. She gets a lot of things…..her memory is phenomenal, she can tell time, she knows all about Jesus and Heaven, she knows all the US Presidents by face, number and name and all her states. She can read and write. But, even with that, yes and I know she has that extra chromosome that is responsible for it, but seeing that IQ number hurt.
We had so many dreams for Hannah when we found out we were pregnant. Of course those dreams were shattered with the devastating diagnosis at week 17 of my pregnancy. New dreams were eventually formed; but more realistic ones and now those dreams are being shattered right before my eyes.
I’m in a constant state of grief and honestly nobody (except those who are living it or have lived it can understand). Grieving a loved one who has died is one type of grief but grieving your CHILD who is still alive is an overwhelming, heart wrenching, life shattering, lonely kind of grief that is so difficult to put into words. It’s a silent grief. People often wonder why I don’t ask for help, why I don’t share as much as I used to, why I’m so quiet…..it’s because there is no way to express this heartache. There is nothing anyone can do. Some friends have brought food or sent treats and gift cards and those things are a blessing occasionally because most days it’s so hard to plan and prepare dinner. I have found it easier most of the time when I need to buy groceries that delivery is better and easier than shopping (thank you Kroger delivery), even though I love to grocery shop. Door Dash and I are good friends….Lol! Running errands is often difficult and I have found curbside and shipping is far easier than trying to leave the house. It is easier to stay locked up in the house and only go out when necessary (most of the time that is for doctor appointments) and I only talk to people when I have to since I rarely have anything to say. Life is exhausting…..no sleep now for almost 2 years has taken its toll and I’m a complete zombie…..it’s a miracle I’m still functioning…..
Hannah gets medications (a plethora of them) at night at 6:30. Then it is bath time and bedtime routine of hair drying, book, music video (usually the Gaithers) and prayer time and then by 7:30 she is fast asleep. Now, due to new medications, Dennis or I one wakes her up at 11pm to put her on the potty, give her medications and then get her back to sleep. It kills me to wake her up when she is sound asleep but we have to. I’m having trouble staying up until 11pm and I set my alarm just in case I doze off, but on the flip side if I go to bed at 9pm (which the past 8 months or so has become my new bedtime) waking up at 11pm is harder than just staying up. It has been hard to find my groove since our recent hospitalization with Hannah. There is a reason why women in their 50’s don’t have newborns or toddlers and if you do, you amaze me. Hannah is 18 but let’s face it, she’s a toddler (I have the IQ test to prove it). I do everything for her…..always will. I’m good with that but the older I get the harder it is.
I watch her every single day spiral downhill physically. She’s constantly exhausted. She doesn’t feel good. I think she is in pain (but she never complains). I just see it in her eyes, the way she walks, how slow moving she is and how she holds her hips/legs. I see her once beautiful head of hair falling out (she’s lost about 3/4 of it) and I see her red swollen eyes and face. She’s lost so much weight and yet she still eats the same as always. All she continues to say is she is ready for Heaven……that is a grief in itself that shatters your heart.
Doctor appointment days are horrific for us. They are all consuming on those days…..between getting us both ready, getting her inside the doctor office (if you only knew what that took, thank God for her wagon), waiting, waiting, waiting for doctors, blood work, x-rays, spending time with the doctors (most appointments are longer than the average person), then getting her and her things back in the car and getting home it is a 4-5 hour event. I promise I’m not complaining, we do this all the time and I will continue to do it…..it’s just harder the older I get. I’m definitely not 20, 30 or even 40 anymore. Doing this when she was a baby/toddler in my 30’s was SO MUCH easier than now.
Well, I’ve said too much and it probably sounds like I’m complaining, I promise I’m not…..I knew when God gave me Hannah that He would equip me for whatever came our way. He knew I’d never quit, never walk away and have no regrets. He knew because He equipped me to always do exactly for my sweet girl what she needed. I always have and I always will…..the last 2 years have just been really hard…..the past year I’ve grieved for her, the life we wanted for her and the hand she’s been dealt. Losing my dad in August compounded that grief…..I’m thankful he isn’t here to see how far Hannah has spiraled health wise, it would destroy him. So for that I am thankful.
Today I am thankful for wonderful doctors, medications that without them Hannah might not be here, surgical interventions and a little girl who never fights or complains with any tests, procedures or surgery. She’s a rock star at doctor appointments and as a patient in the hospital. I know it could be so much worse. So, even though my heart grieves and stays shattered I thank God for not only equipping Dennis and me for this life but more importantly for equipping Hannah with the grace, strength, peace and joy to endure all she has had to endure and continues to endure.
But, just like my sweet girl…..I am ready for Heaven……
Until next time…….
Hannah's Heart, An Unexpected Journey 