Friday, July 15, 2011

Iyla

 I have been going through some personal issues that have brought up some very emotional things in my life. I normally do not post such personal struggles, but this is so heavy on my heart, I'm going to use my blog for an outlet today.... In my home I have a sign by my front door. It reads" Live Simply~ Love Generously~ Care Deeply~ Speak Kindly~ Leave the rest to God." I really try to live by this. Its simple and easy to remember, not that hard to do, but sometimes, I struggle with just giving it all to God. I know that I am where I am for a reason and a purpose, and if I have trials along the way, they will make me stronger. That  every one has anxiety of some sort, its all how you make it through it that. Just let it go give it to God, and pray. So that is what I have been doing, and It has brought up some issues I never talk about...I am going to tell you about one of them.  Some of you know about the loss of Devon, Taylor and Harleigh. But I've never mentioned my baby. My Iyla who is 23 mo. old. She was a child who would not have been born if we hadn't lost the 3 Yes there is a reason for everything... A child God wanted me to have. She was a perfect baby, a baby in my own image, my coloring, my temperament. My number 4. A brown eyed, brown hair beauty in a family of blonds with blue eyes. She was made to stand out. So smart, she was talking, yes talking. At her 6 mo check up she said "HI" to her Dr. when he walked into the room. He was blown away in 20 years he said he had never had a baby say hi to him.. She would also say "Hi , read this,  mom, dad,  book, bubba, baba" and a few others.. My earliest talker. It was quite the site to see a tiny little one talking to you. Telling my husband "HI DA!!"! When he opened the door from a long day of work!  And putting 2 words together no less!! A-mazing  I knew she would be an early walker. Her siblings walked between 10 and 11mo. All of them. But this wonder  and amazement in how advanced she was all came to an end just a short time after she turned 6 mo.  She started acting strange. She would shake, go stiff, and bend in half at her tummy (if she was sitting). Her eyes would glaze over and out her little  arms would fly to the sides of her body. She held out in her hands tight little fists would clench and her head would bob, when it was over, her head would flop down. As a mother of many. I knew this was not right. Everything in me screamed this was not normal. I took her to the Dr the first time, and they didn't know for sure what it was, I was told to call if she had more.... She did have more. And more, and more. The last day she had them, I lost count. They were happening right after another. in clusters that would last hours. My tiny girl so tired, I took her to bed with me and recorded her "spells" for the Dr. The tape was seen by her pediatrician, who then said the symptoms and tape look like infantile seizures, she is the right age to start them. Lets make sure...  so he sent me to  a neurologist who referred her to Children's Hospital, 2 hours away for a few days of observation.... but, that would have to wait for her referral from her insurance. So I prayed, my family prayed, by the time of her appointment, once we got the referral, and the stay scheduled,  her seizures had peeked and   had been decreasing.  She was now having them less and less each day! Then, they slowly went away, hour by hour, less and less. In the month it took to make the apt, and get her to Children's they were so mild they could no longer be called infantile seizures, just some type of seizure activity. The stress of my child's illness, and the uncertainty of her future with this disorder was all to overwhelming. I was working part time, and my mother would watch her for me or my husband on his days off. I started noticing she wasn't talking any more when my best friend called to ask about her and what new words she could say. I said none.... She has  lost her speech. She doesn't laugh like she used to, she wont look at me. My friend assured me I was just stressed out, she was fine, she" heard her talking a few weeks ago on the phone". The guilt of not being able to afford to just stay home with her to  help her achieve her gifts again, to get her to every playgroup, child screening, and program I could find really made me feel so guilty. I didn't want to go to work, I wanted to work with my child. To help her overcome this. The guilt was overwhelming. A year later, I know the seizures have changed Iyla, she is a great kid, I just don't know what they have done to her brain yet, her development is apparently delayed by comparison to her projected growth, but she is slowly and steadily making marked improvement. With a lot of work, and some help with developmental screenings, she could be just fine..I pray every day  that I can put this anxiety aside for the sake of my other children, that Iyla will grow up to be a very happy beautiful girl with God in her heart. This changed my baby forever. She will never be the same child I put to bed at 6mo..She is making steady progress, people that don't know of her delays may not notice, but I know. I know she is not talking like she was. We don't know how this is going to impact her future, or what is to come for us, we just push on, keep working, pray and thank God that it isn't as bad as it could be. After all she is walking, talking a little, and pushing on too.   So my message I guess is simple,  please be aware of this disorder. Google it, watch the videos. Be aware if you know some one with a tiny baby tell them about it.... some symptoms start off very small and may not be noticed. I had not heard of it prior to my child's episodes. It is something that will forever change your baby.  There is a long road ahead of us. Be grateful for your children, be grateful that the little quirk s/he has will pass with age, or that they can tell you what they want. Be grateful that putting your child to bed tonight, that your child can tell you s/he loves you. If they don't talk yet, be thankful that you KNOW that you will hear that someday.  If there is the music pounding from their bedroom door that  is to loud, be greatful they can hear it, that they understand and can remember the words to the song..That they know and understand who you are, and that you know they love you. Be greatful for the little things. the smiles, the unrequested hug, and  be blessed by watching them grow.

6 comments:

Marlene said...

Oh, big hugs. This must have been so very hard to write. I will keep you all in my thoughts and prayers.

Lisa's Creative Niche said...

Having a little one myself ( only 4 mo. ) my heart reaches out to you! I will keep you both in my thoughts!
Lisa

Flamenco92627/ Julieta said...

Thank you so much for sharing your message. I hope it has helped lift the burden on your heart a little bit. Sending prayers and ((HUGS)) to you for continued progress with your precious Lyla!

Angi @ CokiePop said...

What a moving and brave post. My youngest daughter has developmental delays and mild Autism so I know the struggles we as parents go through during difficult situations like these. My Rachel has made great strides and improvements. God has many blessings and he will do the same for your precious Lyla. Sending hugs your way. :)

Audrey Frelx said...

Oh my, how your story has touched my heart!!! I agree that it takes so much courage to relate this and how brave you are.

God does things for a reason and we may never know what the reason is, but you and Lyla are still so very blessed!!! Who knows what's in store down the road (?).

While we wait, I'm sending love, many hugs and prayers!!!

Thank you so much for sharing -- there are so many who will appreciate your telling this!!!

Rhonda Emery said...

oh kcee you are such a strong lady and god knows what hes doing. I am positive all will be okay and pray that it will. this touches my heart and saddens me you have to go through this but please stay strong for your little girl and family. i am sending you a big hug and thinking about you and family. hugs my friend