A Letter to My Daughter..... One Year Later....
At the time, I wasn't sure of the future.
I didn't know how we would meet. I just prayed that the Lord would show his grace and allow me to meet her alive. He granted my request and so much more. As one year has passed since her birth so much has happened in our lives. We have matured and changed. I want to share this letter with you and I pray it has an impact on your relationship with your own mother.
My Dearest Mylah,
Well, well, well... It's been one whole year since you were born into this world. In my last letter, I was preparing to meet you. I was preparing to see the child that I was carrying. I had so many questions and wondered all about you. Then I met you. From the start you were counted out, but you continued to grow and fight, you showed everyone how strong you really were. I remember bringing you home. I was exhausted at times and most times I was scared. The 1st couple months I would wake up to make sure your chest was rising. I was so scared you would leave before I got the chance to know you. I remembered how you would coo every morning, it was your way of telling me "good morning". I loved our days at home together.
In the beginning you were so small. Your heart condition required you to be fed by NG tube. I bought stickers for you so that people would see that although you were different it was still ok, you were still just like them. I used to be scared to take you in public, not because of the many stares, but the germs. You getting sick was my biggest fear. I heard so many stories about children with Trisomy 18 dying while sick, I found myself being overcome with anxiety when I had to take you out. I just wanted to be home, inside our house safe from all the germs. I knew that I couldn't be this way forever because I wanted you to be as normal as possible. I wanted you to experience life and that life was not being stuck within the walls of our home.
We worked hard with your aunts from Walk With Me to get you where you needed to be so that you could take on heart surgery. I always knew you would have your heart repaired it was just when. We prayed, attended appointments and many consultations and finally had made a decision to go with the Pulmonary Artery Banding, but Dr. Ohye said it wouldn't help you. Your saturations were not good enough for the band to be effective and he recommended the full repair. I was so upset and scared. He didn't pressure us for a decision, but I remember him saying "Let her write her own story". He would support our decision. I remembered having peace because I knew he was the one sent to operate on you.
On July 5, 2012 you underwent open heart surgery. I was terrified of the outcome. We gathered at the hospital with others to wait it out. I remember being sick all day. My nerves were bad. Then doctor Ohye emerged and said the you were "ok". You had survived what others said you could never have. You had a new start, another chance to LIVE.
The 1st time I saw you in the ICU it was so overwhelming. You were hooked up to so many machines. The room was very noisy. You were surrounded by other children, babies, who had surgery and their moms & dads were praying for them just as we prayed for you. The bed seemed to swallow your little 7lb body. The staff placed a patriotic headband on your head. Your scar was covered, you didn't look like the baby I had just handed off for surgery. I felt awful, I hated myself for putting you through that. I wondered if I made the right decision. For days I beat myself up about the decision. Each time something happened I blamed myself. Each time I returned to work I beat myself up. But once again you showed me what being strong meant. You started to recover and was out of that ICU in no time. You started to become a little superstar. Everyone was so impressed with your recovery and progress. We had a little setback on your 4 month birthday. You were having trouble breathing and at that moment I thought I was witnessing your last minutes of life. I felt so helpless and the only thing I knew to do was call on our Heavenly Father. I asked him not to take you. I asked him to spare your life. I shouted that I knew his abilities and what I had seen him do. He answered my prayer.
You ended up getting a trach. I remember fearing this from the beginning. I never wanted this for you. I was scared. It literally terrified me. When I signed the consent I cried. I felt so bad, like I had signed your life away. Another surgery. We hadn't planned for this and now you had to go through something else. I wasn't sure if your small body was strong enough to withstand it. But in Mylah style you pulled through just fine and our new way of life began.
We spent the next weeks learning about your trach and your vent. It was so scary at first, I wasn't sure I could do it, but I knew I had to. For you. You needed me just as much as I needed you. Your trach and vent then became like second nature to me it was our new "normal".
We brought you home after 81 days in the hospital and life at home began. We were met with some new challenges but we slowly conquered each one. You were met with a obstacle in December and it landed us back in the hospital for another week, but once again you bounced back.
We celebrated your first Christmas, New Years, and Valentines Day. You made strides in certain areas, you learned to hold you head up more, you began grabbing and holding things. You smiled more and more, we were overjoyed to hear that sweet voice again. The first time I heard it I cried. It was the sweetest sound that I missed hearing for so long.
As your 1st birthday approached my nerves began to get the best of me. I had been planning your party for almost a year. I stopped then started again. I couldn't be too confident. I prayed but sadly I wasn't still sure. I just wanted to have the luxury of not having to worry about you getting sick, suddenly being hospitalized or dying; which is my greatest fear.
Mylah you continue to defy odds everyday. I am amazed and so proud of all that you do. You have shown me how to love, how to appreciate the little things. You have shown me that it's okay to be scared. I learned how to celebrate more and complain less. You give me drive that I didn't know I had. You also taught me how to fight and slowly I'm getting my voice. You created in me a passion for helping those who may not be able to speak up. I've never been scared to speak in front of people and
I'm realizing that I will be needing that confidence more now that our story is gaining attention. There were days when I wasn't sure I could do it, moments when I didn't think I could make it, but your smile always made those feelings go away.
Mylah I would just like to thank you for being you. I've never loved this way before. You have taught me so much and I know I still have plenty to learn. I'm so proud to be your mother and I hope I make you proud.
Happy 1st Birthday Mylah....
GODS sweetest Angel & I pray we have many more years together!
Love your mommy.
|The Birthday Girl|