All I Want For Christmas!

Hey hey my lovelies hope all is well, count down to Christmas is in full swing. This week am going to share my Christmas wish. It’s the first time I’ve ever had a wish for Christmas I don’t even believe in Santa or Christmas miracles but boy do I have a tall order! My list ain’t even long I think it’s a bit impossible.

All I want is for my baby to NOT HAVE SICKLE CELL DISEASE!

Yes that’s all I want, I know am an adult am suppose to just deal with it be grateful that Jahneveah is alive. I am eternally grateful that she’s alive, the fact that she’s my beautiful princess am honoured to be her parent. Watching her in pain isn’t so much a cheerful part of parenting & it sucks ass, having a child sick is hard on any parent. Raising a child with a chronic illness is something else it knocks the wind right out of you.

See mentally it’s exhausting living with schizophrenia makes it’s seem impossible at times. Don’t know if am coming or going with my baby girls immune system already low I don’t socialise much, am paranoid about germs especially with the current situation with covid. I spend nights after nights just watching my baby worry if she’s okay even when she’s not have a crisis.

Most people don’t even know what sickle cell disease is, those who do some are unaware of the actual impact it has on those who life with the illness nor do they know the impact it has on the parents & loved ones who care for the people they love, how it feels to watch them go from strong to being in unimaginable pain having to explain to health care professionals who are ignorant as they are sometimes not educated on this disease either.

It’s not a walk in the park watching doctors miss judge my daughter’s condition when I take her to A&E then invalidating her as they would do you or I instead of adequately checking her as a specialist would. The panic when you leave the hospital but the situation gets worst.

Try To be Understanding!

I hate when my baby gets ill, I share updates then people try to sell me their health supplements while telling me how medication is bad all the health shit am not saying it doesn’t work but my baby isn’t always sick n she’s two. Also hate people who ain’t there on a normal day trying to give general advice to me while she’s unwell as there is a time and place for that okay 👍🏾

Show some empathy or shut up because who needs that crap when their thinking about their kids worrying sick from watching your child hurt! Maybe a hug or ask if we are well.

Tell us to change or diet these things are apart of the illness there ain’t nothing that’s gonna take away sickle cell we can help her to manage her condition. Help her make the choices with what she eats by teaching her from now when am in charge of preparing her meals.

Ever fought maybe some of us do give our kids the right nutrients & they have a balance diet oh yeah while my baby is sick me knowing there ain’t a thing I can do, I feel useless & some of the advice I receive makes me feel more useless. Normally from people who have never spent a night with us or a day In our lives to see our routine.

How can you advice with what you don’t know, also when are you compassionate it’s not caring feeding your opinions to other people and it’s pissing me off see my baby and I are here with her siblings for months at a time before I see anyone.

Sometimes I forget that she is sick yes I do because this illness is invisible until she’s sick no one can see it. No one can tell she’s got a chronic illness she’s so strong 💪 she’s smart as can be. My little baby lives with such a monster inside. She loves to bake, she sings so cute why lord did you choose her why did you choose us.

Walk a Step In My Shoe 👠

Quick to judge me on my parenting do you know I don’t even like to have a break, a night off if she ain’t with my mother & grandpa she goes no where it breaks my heart that no one picks her up and takes her out, makes me cry night after night when I think of who Jahneveah has to depend on as most of the people NOT ALL I know are just there to protect their image it’s not because they want too. My other two kids goes their fathers for the weekend she goes no where all she has is me all I have is her!.

No day is the same everything goes up in smokes sometimes with the blink of an eye. We are all playing eating or going out then boom 🤯 she’s being rushed to hospital it took over a year before she got sick but boy was it bad. Her 2nd birthday was spent in the hospital it was beautiful as she was up an active for her birthday but sad she couldn’t spend it with the people she loved.

I spend the nights she’s sick wide awake as am Scared to go sleep she’s sick right now this very moment that’s why am writing this post to help deal with it. My baby’s hands and fingers swollen, she’s been having nose bleeds, I’ve took her hospital they said she can come home.

Yes like any parent my heart is broken which leads me to my wish, I wish she had no illness no pain. I want her to have no SICKLE CELL yes I know it’s not gonna happen but I can wish I can hope for a miracle not just this Christmas but everyday for the rest of my life. I wish no mother this pain no child this suffering.

I’d trade places in a heart beat but I can’t I am so angry 😡 I guess it will take time. The guilt I feel as it’s a genetic disease 🦠 I know I didn’t purposely give her sickle cell but atm I hate myself for it I hate that something I carry can be so harmful.

That it causes her so much pain, I will devote my life in giving her the best care all the love I will work hard so she can have the freedom & choice to see everything she wants to see. Supporting her every step of the way.

I’ve given up my profession & have found a new one, my heart is breaking, she’s in pain sometimes it’s too bad. So I will make up for this illness me & her father passed through our 🧬 I hate the people who made sickle cell disease as it’s man made just like corona virus.

Mentally, emotionally and physically drained, I salute all the mums who care for their kids with serious life long illnesses everyday. Taking on the weight & opinion of the world everyday, yes I should get counselling or something but am not ready for that. I just want to be here n not miss anything.

I hallucinate her in hospital repeatedly at least once per week or my other kids being ill. I hear their voices even when they aren’t here. Mental health makes me feel I don’t deserve her or my other kids most times I feel like a terrible mother but I keep going, depressed but loving my babies. It’s a lonely road not all because of sickle cell disease but because of my dumb ass that can’t check my mental state of mind.

Thanks for reading, bit raw an all over the place this blog emotions got the best of me. Please, share, like & comment.

Your fabulous just the way you are!.

P.s sickle cell disease & Schizophrenia not the best couple somehow we made it a power combination. love from Crystal & Jahneveah xoxo 💋