Just who is this sweet blonde cutie pictured with her equally lovely Mom? Let’s find out!
Tell me a little about yourself and your family.
My name is Lori. My husband and I have been married for 10 years and have 2 beautiful little girls. I have a degree in Health Science Education and was a teacher before I had my girls. I love being a mother. It hasn’t been easy, but I love it. I enjoy reading, hiking, walking, teaching, music, dance (watching it), and playing with my children. Our family enjoys the outdoors, swimming, playing games and just being together.
Tell me more about daughter’s disability. When did you first learn of her disability? Was it at birth or later?
Our little Myah was born with a rare chromosome deletion (7q22-31.1). When she was born, she was little but we were told she was a healthy baby girl. When we brought her home from the hospital we began to realize she was not. After 9 months, extensive testing, much illness and worry, we finally received a diagnosis.
I will NEVER forget that day. My children and I were out of town visiting when I received a call from our doctor, telling me what was ‘wrong’ with Myah. I remember my world flipping upside down that day. I remember hanging up the phone, running to pick up Myah, and I just cried and held her in my arms for a long time. A very long time. I was scared. I needed my husband and I knew he was going to have a very hard time with this news.
After everyone was told, we all went through a little shock and a little mourning (I’m sure some of you other parents can empathize). We didn’t want our little girl to suffer. We didn’t want her to have a hard life. We didn’t want her to be different . We knew so little about her disability. It all seemed so overwhelming.
After the first shock and hurt wore off, we decided we needed to move forward and give Myah the life she deserved. We have been trying to do that ever since
How did you go about making the decision to write about your daughter? What do you personally get out of blogging about her and her issues?
I have been very private about my daughter, but lately I have felt very alone on this journey. I decided it was my responsibility to share her story (our story). She is such a bright, beautiful girl who teaches us so much, I feel she is a gift I can share with others. I also need others. I need to know we really aren’t alone in all of this, and I am learning that daily.
It serves as therapy for me to write the truth, rather than painting an ideal picture of our family, pretending it’s been ‘just fine’ having Myah, I’m tired of telling people what THEY want to hear.
It’s also therapeutic to advocate for my Mya. I hope someone will learn or gain something from her and her life. Since I’ve strated blogging I feel like I belong to a ‘special club’ with people who really understand me, my daughter, and my family. Thank you all.
How has your daughter’s disability affected you as a person and as a mother? What did you do right? What do you wish you had done differently?
My daughter(s) have re-defined who I am. I have gained so much from having Mylah. Some of it is wonderful, and some is not . I used to be a very carefree, laid back girl. Having Myah has given me so much worry and anxiety, and I’ve become much more serious than before. I don’t really like that part so I am slowly trying to find a good balance between a fun, carefree mom and a good caretaker for Myah. I’ve also had to learn the hard way who my true friends and loved ones are, and the truth has hurt deeply.
Having Myah has made me realize I have strength I didn’t even know I had. The greatest thing that has affected me though, is her love. Myah loves me so unconditionally, and I don’t deserve it. I can have a very bad day and she loves me all the same, climbing up to give me hugs and kisses
I don’t know what I have done right. I think getting early intervention was a good choice. I think loving her is right. I think turning to my husband for love and support was right, even when we weren’t on the same page. It’s made us learn a lot about each other, and I love him for loving her so much and sticking with me through the ‘bad times.’
I wish I would have reached out to others earlier. I needed support. I needed friends and the friends I had (and much family) just couldn’t relate anymore. I would have also enjoyed Myah more. We were so busy with therapy, doctor appointments, more therapy, illnesses, more therapy, feedings, more therapy…..that I rarely took the time to sit and enjoy my sweet baby.
What do you want other parents fighting the same fight to know?
I’ve said the words, ‘I can’t do this anymore!’ and I’ve said them many times. But the truth is, somehow I DO do it. There is always another day…a new day.
The alternative to having Myah is NOT having Myah. I would not trade her for the world. She is ours for a reason, just like your child is yours for a reason…and I think the ‘reason’ is so much greater than any of us can imagine. Be sure to visit Myah and her mom!
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.