Melissa is 3 1/2 years old already! I can’t believe that it has been almost 3 years since she was first hopitalized with seizures.
Several people have asked me lately how I do it, if I ever get discouraged. The answer to that would be yes, I am after all a mom and only want the best for my children. Looking back over the last 3 1/2 years we are at such a different place. There were some very difficult times. Many nights I went to sleep wondering if Melissa would still be with us in the morning. Many times I would hold her as she was seizing and I would question every decision I ever made about her- was I doing what was best for her? I didn’t leave her not even to run to the neighbor for 14 months because no one else felt comfortable being alone with her if she had a seizure and needed Diastat or rescue breathing and quite frankly I knew if she died and I wasn’t there I would never forgive myself. People would tell me I needed some time for myself but for me being away from Melissa was not what I needed. Someone to do my dishes or laundry would have given me a break that I needed.
The months that followed her hospitalization took us one step forward and two back. Melissa was blind most days, her head control was so bad you had to hold the front and back of her head so she didn’t give herself whiplash(in essence it was worse then a newborn’s head control). She was loosing weight for no reason, when we supplemented her we had to use an syringe because she couldn’t suck out of a bottle. There was no spark left in her eyes.
I share this for those families who are in the mist of the worst. There is hope! Melissa is thriving now! I look at this little girl (she is still little wearing 24 month clothes) and thank God for how far she has come. No, she doesn’t sit up or feed herself yet. But, she smiles and laughs, and she can see, she can eat, and yells when she needs something, she babbles, and coos. She can hold her head up without giving herself whiplash! She can bounce herself in her hamock, she is seizure free without medication. She is growing (as slow as it may be it’s growth all the same)! She knows what she likes to eat and drink and who she wants to talk to and ignore(usually her big sister Shelby-accually I think it’s a game between the two of them). She is a very, very smart little girl trapped in a body that as of yet is not working for her. She thinks and acts like a 3 1/2 year old! Although, she doesn’t sleep like a 3 year old and I certainly could use some sleep!
So while yes, I do get discouraged at times I think often about where she was 3 years ago and more often then not I know that even if Melissa never walks or talks that because of her our family is becoming all that we can be!