I have no clue what i’m doing….

So, I had to teach my almost 12-year-old how to shave her legs last night. Now, this would see to be exciting for most moms. Their little girl is growing up, making changes and so on. But my situation is different. My daughter is 95 lbs and I’m still bathing her, dressing her, helping her brushing her teeth and comb her hair….you get the point. Kali is special needs. She has made some of  the most remarkable changes in the last few years. I am overjoyed, everyday at a new accomplishment she has made. God showed me her healed and whole and that’s all I have left to hold on to.

Let me let you in on a little secret…..I have no idea what I’m doing. Little things pop into my mind, “What if I can never go on vacation with just my husband?!”, “What if something happened to us, who will take care of her?!”, “She’s off today, did someone hurt her at school?!”, on and on and on…This is real. I can’t remember the last time I had a night away with my husband, let alone an actual vacation! Shes easier to look after now than an adult version! So my need for rest and a break, leak. It leaks into every crevice of my home and life. I find myself exhausted at the simplest of days, short-tempered at the littlest things and unable to give anything else. I feel things unravel rather quickly when I get this way. I panic. People say things like, “You can do it, God knew you could”, “He wouldn’t have given you this if He didn’t know you could handle it!”. Are these comments suppose to be helpful?  If you have a friend going through anything, don’t say these things to them. They aren’t helpful. You know what is helpful? Hug them, cry with them, pray with them, laugh with them, just check in on them, offer to give them a break, pick up the kids, run some errands, pour them a drink…. those things are helpful.

So I find myself at a cross-road, I can spiral deeper or suck it up buttercup. Lets be honest here, I have like a small window to panic, cry and then I have to pick myself up and move forward. I don’t have the grace to just check out. it doesn’t work that way. I find my center. I read, I clean, I take a walk, workout, cook…whatever. I do something to remind myself of the air I’m breathing, the ground beneath me, the sounds that I hear and the fact that I’m okay. Maybe I paint or write a song. Whatever it is, I find my way back to the present. I reel in the thought process that can get out of hand. Take it one day at a time, take a deep breath and move forward. This is an ever evolving process. I can be good one min and then something can take me for a ride into the “what ifs”. It’s a fight at times and other times I laugh that I even let myself be swept away. But this is real. This is the battle that we have has moms or parents. Weather you have a child with special needs or you’re in the terrible two’s, the preteen, the teenager years, or whatever. We go through things, we believe we have no clue what we are doing, we would love some paid vacation leave. Find your center, find what aligns you, give yourself grace, grace and more grace, love yourself more, think happy thoughts, laugh at everything and nothing, cry when you need to, morn the perfect life you had painted in your head and celebrate the imperfect perfect life you have, play with your kids, imagine, dream and dream some more. Ground yourself in the present moment, remember to love life and when life beats you up a little, take a deep breath and find your center again. Most importantly, remind others to do the same. We forget sometimes…

A long way from home…My journey as a mom having a child with special needs. (part 1)

On July 29th, 2003 My Kali took her first breath. She was perfect in every way. A chubby baby from the beginning. I love chubby babies! I truly believe it’s the only time its adorable to be chubby is when you’re a baby. Lets be honest here… She had a faint cry and didn’t really scream. Her sister was 2 and when she was born, she screamed. So that concerned me at first. Her scores came back perfect and her oxygen level was good, so I didn’t have a reason to be concerned…..or so I thought. My delivery wasn’t really a piece of cake and I had started to hemorrhage and bleed out. Now, I don’t really remember too much after that but I do remember a bunch of blood being rushed in for a blood transfusion and the Dr. and nurses rushing around. I remember 4 or 5 shots going into my legs to stop the bleeding. Meanwhile, I was more concerned with the faint cry of my child. I think they were able to get the bleeding to stop without the transfusion, but I honestly don’t remember and neither does anyone else. That’s how much chaos was happening at that time. You tend to block it all out and in that moment when your life is a huge concern, as a mother, your child’s life is more of a concern….always. We took Kali home and all was well until day 3. She was 8lbs and 13oz when we took her home and had lost weight since we brought her home. Completely normal, however, she had lost a good amount of weight. She started projectile vomiting. Ok, I’m not talking about throwing up a good distance; I’m talking about vomiting a good 4-5 feet. No exaggeration. I went in the room to take a nap and about 30 min later, my husband came rushing in with my 4 day old baby not breathing. She had vomited and aspirated it. She was blue. My husband was freaking out and I flipped out. I called 911 and started trying everything I knew to do in order to get her to breathe. I had even tried to pinch the bottom of her feet so she would let out a scream. Nothing. I just prayed and cried watching my 4 day old baby girl suffocate. I could hear the faint sounds of the ambulance in the distance. All of a sudden her color came back and she let out a scream.  My husband and I both were hysterical but trying to hold it together for our 2 year old. Her vitals checked out but her oxygen was still low for comfort. I got on the stretcher and carried my baby in the back of the ambulance. They put an IV in her and oxygen up to her face. Flipped her around like she was a rag doll checking all her vitals. We were transported to Loma Linda children’s hospital where we were there for 3 nights and 4 days. Little did we know that this was the start of many visits and stays at that hospital. They ran test after test after test on her little body. They took x-rays and didn’t let her eat. She was 4 days old, that’s it. The most innocent little baby and as a mother, I could do nothing. That’s the worst feeling in the world. She screamed for hours because she was hungry and hurt. She would only be soothed by me. So, I walked around the hospital children ward for 24 hours straight, bouncing her on my hip. It was the ONLY thing that calmed her down. We tried giving me a rest and having my husband or mom take her. She wasn’t having that. So in my exhaustion, mentally, physically, emotionally, I had a perseverance that I didn’t realize I had. That protective nature comes out, the “mama bear” so to speak, and I would do whatever it took for my child…..

After a long 4 days, they found nothing. Weird huh? A little acid reflux that they said was pretty bad, but that was it. They were still concerned about how much she projectile vomited and how often, that they prescribed her medication. After 4 different medications, some 2 and 3 at a time, and zero progress, I had enough. I told the Dr. I was done and to take her off all of the medications. Meanwhile, she had her immunizations. She was 5 months old and at one time, she had 9 different immunizations at one time (3 shots with 3 immunizations in each). 9!!! Now, with a 5 month old baby, who is already on 4 medications and then gets 9 more on top of everything, do you think that a baby’s body or brain could handle that? Would you take 13 different rounds of medications and viruses? I didn’t know any better. I just listened to what the Dr. said. Looking back now, I would do so much different. Isn’t that life though? We learn from our mistakes and life choices and move forward with the knowledge to make better choices.

This is my journey and it will take time to tell. Please be patient with me 🙂

To be continued…..