Anajee’ and Her Sister A’kirah Weldon
A’kirah was born Dec 1, 2005. Her sister Anajee’ was born on Aug 18, 2003. Before I even knew that this Disease existed my oldest daughter Anajee’ was dying, she got the feeding tube before the diagnosis. She was eating and losing weight at the same time because it would take everything in her to hold herself up and again she had been getting like this since she was 4 but I couldn’t even get the doctors to look at her until she started falling.
They have been diagnosed since they was 8 and 5 my older daughter progressed faster then my youngest with this. Within this past year(2018) my youngest daughter A’kirah, progressed rapidly. At the beginning of this year she was walking and talking now she is fully dependent and no longer can walk, talk, and can only feed though a feeding my older has been like this since she was 11. But she stopped walking at 8. It took the doctor years to even pay attention.
A’kirah broke her shoulder last year she started falling alot.
I am fighting so hard to maintain their lives but the support is nonexistent. I know that there are more of there family here suffering with this illness but we don’t know them because my kids father wasn’t raised with them.
Sleeping Beauty with a twist she want her to be a zombie lol but a pretty zombie, we was going to do that this year but she was in the hospital and heavy medicated. So the sleeping beauty part was right. I miss seeing them smile.
It is so hard watching my daughters dealing with this and I can’t stop it. My daughters are now 13 and 15, Both of them now are bedridden and on ventilators. I just want to stop this my oldest one has been in this stage of it for the past 4 years and my youngest daughter has been in the hospital since the week before Halloween and got her trach on the 4th of this month. I don’t know if i am making them suffer because I have them on ventilators I don’t want to decide when they transcend. That is between them and God.
Because at this stage of it and my youngest daughter is almost identical to her sister I am really afraid now more then ever. My oldest daughter this past year heart rate gets low more and more as time pass. My youngest daughter went from no respiratory illness not ever a cold to now on a ventilator and getting pneumonia for the first time this past October.
I got robbed of the most beautiful personalities I have ever known but also though them I have been able to see the truth strength of life especially Anajee’ she has survived the impossible and when I believe it is over she keeps fighting so far there is no one in this world that I know is strong then her but her little is becoming a runner up.
She was born on Aug 18 and loves being in front of the camera and getting her pictures taken you could never sneak up on her and take a picture she would always be ready and smiling.
She was born on born on Dec 1 and is just like her sister but at the same time she likes horror. She is pretty in pink meets the bride of Frankenstein and zombies. She loves Halloween and everything about it but at the same time she loves being a Disney Princess her favorite is Sleeping Beauty with a twist she want her to be a zombie lol but a pretty zombie, she’s too sick now though.
August 2, 2019- This week has been draining and emotional because I believe my baby girl Akirah is transitioning into the next level of this illness 😪😪😪😪
September 20, 2019 My baby girl A'kirah felt my pain and sadness when I went downstairs to check on her and I was trying my hardest to hold back my tears but she started to cry and it reactivated my tears and I started to hug and kiss on her like she use to do me when she would catch me crying over her big sister to make me feel better and by me doing that made us both find peace in this moment. God knows the heart and it will translate beyond any boundary, trust that! I am still sad but now I feel a lil better. The one thing hate about other people perception of this illness is that they truly believe that people with this don't comprehend or know what is going on around them I think this is so disrespectful I have had to repeatedly tell my daughters nurses that my daughters are very aware of their surroundings and are not just laying in that bed just breathing I woke up this morning missing my daughters Akirah and Anajee. I miss their smiles and laughter, I miss them mommying me, calling out to me fussing with me, playing around. I miss doing their hair and them loving the way they look when I was done , I miss them kissing me and hugging me. I miss them and the way they admired me for the color of my skin and the shape of my body no matter what size I was I was the most beautiful woman to them and they wanted to look like me. I miss them taking pictures in my phone, I miss me taking them to get their nails done. I just miss what I had with my lil divas and wish I had it back I wish I could have what you all complain about with these unruly teenagers, I want to fuss with my 13year old about what she can't do because it is not her turn yet, I am to look at Anajee' and tell her to sit herself down somewhere get out the mirror, I want to be at the cheerleading practices and competition and the dance rehearsals and events I want the sport activities because I know that A'kirah would have played basketball because he big sister did and she would have played volleyball because the other sister was doing that. I want the regular worries that parents have. I am missing my daughters, I am wishing for the life I did get to experience with my children. I woke up today and made a mistake I lived in my past and thought about the future instead of doing what keeps me together and that's living in the moment and now I am hurt and sad with wishful thinking smh!