5 Years Old
Five years ago today A came into this world at only 24 weeks. I remember it like yesterday. I remember how scared I was. How oblivious I was to what was happening. I remember my midwife checking me and looking at me with sadness in her eyes telling me that she was sorry, but it looked like I would be giving birth that day. Of course I had NO idea that at only 24 weeks a baby could survive. I cried. My mom cried. I thought I would be saying goodbye to my baby. I remember seeing A for the first time. The love that I felt was just incredible. I never knew that a love like this was possible.
Since that day five years ago my little man has proved over and over how he has an amazing strength and fight in him. There are many times that he has defied the odds and survived. Many times we were told that he wasn’t going to make it, and he has.
I remember one time in particular, he was about a month old and I walked into the NICU and there were many people around his bed. His main doctor looked over at me as I washed my hands and just shook his head. My heart was pounding. The tears started to come. I knew it wasn’t good. A was very sick. His kidneys were shutting down. A was doing some “weird” things that they had never seen before. I was told that there was basically no hope that he would recover because of how sick he was. I sat beside that bed and prayed. Around 10pm that night he was settled and stable so I went back over to the Ronald McDonald around midnight to get some sleep. They would call if there was ANYTHING.
I never got a call. I went in the next morning and again his doctor was at his bedside. Only him though. When I walked over to him he was shaking his head again. This time in amazement. A was already a lot better than he was. My boy. My tough tough boy.
This child has been through so much. 227 days in the NICU. Hernia surgery, g tube surgery, countless pokes, IVs, antibiotics, scopes. Kidney failure, domperidone toxicity, severe dystonia, group B strep, sepsis, spinal taps, catheters, code blues.
Only home five days before being readmitted and ending up in the PICU on a vent. GJ tube surgery, CT scans, PIC lines, cut downs. Diagnosis of cerebral palsy, severe reflux, being legally blind, profoundly deaf. MRIs. Cochlear implant surgery.
Many hospital stays full of tests.
88 days in Sick Kids to try and figure out his “blue spells.” Ph probes, sleep studies, bronchoscopies, lung wash, fundoplication surgery, hiatal hernia repair. Helicopter ride after being intubated and in respiratory failure.
Skin biopsies. Muscle biopsies.
Surviving basically being on his death bed here at home as I cared for him. Holding him during the night crying my eyes out telling him that he needs to breathe. Begging him to breathe. Telling him I love him and how sorry I am for what he goes through. Telling him I try to get help but no one does anything. Knowing that he is TRYING to breathe but he is struggling SO much because he is so sick. Wondering if he is going to take his last breath while I hold him in my arms.
Struggling through those exact times where I know he needed help but not getting any. Laying side by side on the couch for two weeks as I make sure he has enough oxygen, doing deep suctioning, breathing treatments, watching his turn blue countless times. Holding him, crying, being beyond tired. Feeling his body stop moving countless times as he survives yet another blue spell. Almost begging his doctor to admit him but not being done.
Going into ICU for a trial of bipap to help with his severe sleep apnea. Ending up with a tracheostomy.
AFTER ALL OF THIS, HE IS HERE. HE IS ALIVE. HE IS MY LITTLE MAN.
Despite his tough life, despite his challenges A is amazing. He is happy. He is loving. He is determined. He is strong. He is a fighter. He loves life. He has taught me so much. It is him I can thank for the person that I am today. I cannot even imagine what my life would be like without him in it. Sure there are times that I wish he was running around and doing what a “typical” five year old would do. Sure there are times I wonder why on Earth he goes through what he does.
But in the grand scheme of things, he is perfect the way he is.
If he was not born early, if he had not gone through what he has in his life, I would definitely not be the woman I am today. God definitely has a plan for us and so far the ride has been bumpy but it has also been full of happiness and joy. Learning and love.
He has stengthened the love, devotion and relationship that J and I have. The midwife told me when A was born “June 10th….that means he is a gemini….an air/wind sign. You and J are both Sags….fire signs. The wind always makes the fire stronger.” I will NEVER forget that. That was about five minutes after A was born. Thank you Martha!
I am one of the luckiest moms in the world. I was chosen for this path and I know that God made the right choice when he gave A to me.
Thank you A for being the child you are. Thank you for your smiles, your cuddles, your laughs. Thank you for being so strong.
And don’t ever forget. I promised you the day you were born that I would fight for you. I have fought and will continue to do so as long as I live.
The happiest little boy that I know.
Happy 5th birthday monkey.
I love you.