I wish you could see the beauty of being different through my eyes.
I wish you wouldn't stare or judge. I wish you could see that we live our lives as normal as we possibly can. I wish you could see the beauty of my child instead of judging the ability of what she can or can't do.
I wish you knew the old me and see how much I've grown since I've became a parent. How I rearranged my priorities. I'm nothing like how I use to be, my priorities are just not the same.My life is based on my child and I am happy where I am. I wish you could see how she made me stronger. My willingness to fight for her.
How my family became the only thing I am focused on.
I wish you could see the beauty of being different and that there is nothing wrong with it.
I wish you could see that I am not a super woman. I have my days where I just want to give it all up. But then I stare at my child and I forget all about it. Her smile, her laugh and ways to be, bring me a peace of mind beyond of what I can describe.
I wish you wouldn't use the words such " I don't know how you do it, I wouldn't be able to" or "it must be hard"
I didn't decide it, but I am glad she has me. If it would of happen to you, trust me , you would have done the same exact thing but I also know you are glad it wasn't you.
I was glad It was me.
God gave me a miracle, because he knew I could do it even if I had to find the strength for it first. Let me take you back to when we found out and why we found out about Naylahs trisomy so late.
I never did an amniocentesis. It was a choice. Problem or not my child is my child and it's a blessing. True I could of started my searches prepared myself better for what to come but I am almost certain I wouldn't of enjoyed my pregnancy the way i did, always worrying about what was to come. Didn't really matter at 20 weeks when finding the gender we also found out about Naylah's heart issue. So yes,from then I was always worried she could come anytime due to stress or distress from her part. I got home that day, took a long shower and just cried and cried and cried. Because life was being unfair to her. I rubbed my belly and asked for forgiveness, if it was because of me, I was sorry. And told her that I would give up on 2 things I liked until her 3rd birthday if she just promised me to hang there. That night, I slept with my hand in my tummy, so did David. I didn't sleep much, I wanted to make sure she was being active in there and that she was alright. I would think of what could possibly happen to her on daily basis, but I enjoyed being pregnant every second and would do it again in a heartbeat. Naylah stayed warm and cozy for 37 weeks... I thought she would need surgery right away, maybe she wouldn't make it. My baby is strong she is amazing.
I wish you could see how loving she is, the most cuddly little person I know. If I could, she would let me kiss her all day long. That's just how much she loves to get love from those she loves.
We found out about Naylah trisomy at 5 months because her cardiologist thought her head was too small and ears too low. Waiting for the genetics tests was the longest weeks of my life. That call from the geneticist office to come in proved my fears, I knew something was abnormal but didn't find out until we got there. We were there the three of us. David and I were nervous. David was trying to not to show too much. You know that moment they tell you to sit down and that they have bad news. That your child has trisomy 5q and you have no clue of what it is because it is so rare. Hearing those words just stopped me, as I was staring at Naylah I kept on thinking. Where did I go wrong? What did I do? I followed my pregnancy by the book. She already has a fragile heart and now this? I avoided all places where there was smoke, didn't drink an ounce of caffeine, not a sip of alcohol, searched all I could eat and not eat. Didn't dye my hair. Got plenty of rest, didn't allow myself to stress enjoyed fully my pregnancy. What did I do wrong ?
Guilt that I did something that injured my child even by hearing the doctors saying it didn't come from none of the parents. So why does she have something rare? Must be something I ate or did. Did I stress myself too much? Was I exposed to something bad? I was suppose to protect my child from any harm during those 37 weeks of pregnancy, why did I fail it? Tears dropped down while the geneticists advised the next step to take to help Naylah on her development. David was saying it will be alright, she will be extra smart with her extra chromosomes ... What about the ones she lost ? What would they do? I couldn't stop crying, while looking at her even with those reassuring words. I didn't want my child to have problems, to be "special" I wanted a perfect child like everyone else's. We left the office, that ride home was long and I kept telling David it was my fault, I must have done something wrong. Maybe something I ate or did even if I couldn't remember what that was... Getting home in my computer and reading the little info I could find, didn't help. It seemed horrible. My child can't have that... look at her she is perfect. So why is she having all this? Was I a bad person to deserve it? Was I not good to people and that was my punishment? But why punish my child and not me? She didn't do anything wrong she hasn't even live life yet... She is a child so innocent . It took a few weeks for reality check, to all this to sink in. That word trisomy sounded so awful... as time passed by I realized it is just beautifully different. That yes, David was right and so was the doctor it wasn't my fault it was destiny. God chose me to care for this child and I must be strong for her, for us. Nothing I could of ate could have done that. It wasn't me, it was just life bringing me a special gift to raise. Someone to help through this journey that has it's up and downs but it's mostly amazing, I have a child that truly loves me . She is my rock, my world and my life. For her I would do anything in this world even if that means putting myself for last. I don't mind it, she deserves it all. And I wish you could see her beauty shine, it's amazing. She may not walk , talk yet be behind so much. But my child is amazing. Beautifully amazing. I didn't do anything wrong, I don't need to feel guilty that's just how it is. And I have the strength for it, even if from times to time I wanna give it all up. I can't tho, she needs me and I need her. There are still days where I wish she was up and running, could call out my name and tell me what's bothering her, but i also know this time will come, even if it is taking longer than the usual. She will get there. She has what it takes and she has me, she will always have me and her daddy and all the amazing people, family that loves her so much.
If you reading this and your child has needs, you are not alone. Don't give up on her/him we are all they have. And you did absolutely nothing wrong for all this to happen. NOTHING AT ALL. it's just life and it's a miracle. We do a lot more than any ordinary parent, our priority and daily life is different but we also know to appreciate little achievements that can become huge victory at the end of the day.
I wish you could see through my eyes what yours can't see. I wish you could see that my miracle is amazing and even if I'm always worried something is bothering her. I am the happiest mom in this world. I have it all. I wish you could see the beauty of being simply different. No need of feeling bad for us, no pity needed, no need to look at us differently. We don't look at you in a different way, we are exactly where we need to be. What we do need is knowing you are there for us, it's not because our lives has changed , because my daughter has More medical needs, that our days are more on a schedule that we don't have time for friends and family anymore. We need you more than ever, we need to know you are there for us. I'm saying this because I use to have many friends prior to Naylah they would invite me for dinner, drinks, hang out, fun activities. I would always say yes I'll try my best and last minute couldn't do it. Not because I didn't feel like it. I would love to hang out but just because my child needed me and with time those invitations became less frequent. I can't blame you, you can't understand. But don't give up that maybe will turn into a yes and we will know, we still have you! Our life is just slightly different than yours but it doesn't mean that it isn't as great as yours! It's differently PERFECT. <3