It has been pretty cool experiencing friends and people I don’t know from church coming up to me and expressing “that they like what I am writing”, or “that what I am writing has meaning for them”. Even much cooler for me, because I don’t consider myself even close to a writer, and with that has come pressure to write something really meaningful for others. Initially, when I decided to blog, I wanted to show the humor within my family…the humor that comes with all the challenges. However, it seems that even though we laugh consistently and try to make light of the most serious of situations (especially after the fact)…we haven’t heard our usual laughter in the Little household lately. The energy has definitely been different around here. This is explaining why I haven’t written in awhile. I wanted to have something light and humorous to write about since my last few entrys have been more on the heavy side…AND I started this blog to give you an experience of what truly happens in a home with raising children with special needs…the good, the bad, the loud, the quiet, and the ugly!! So that is what I am going to do. This is what I am called to do.
Last I shared with you, Taylor was having her headaches and vomiting spells again. I took her into the hospital that morning and for the third time and again after all the tests the Doctors couldn’t figure out what was wrong. She was admitted that evening and we stayed in the hospital for another five days waiting to see if the headaches went away and when they did waiting to see if they would come back. To make along story short, Taylor has a VP shunt (this is a tube that inside of her brain that is used to drain fluid from her brain to her stomach). She has had it for 16 years and we have been blessed to have never experienced any difficulties until now. They believe these headaches and vomiting spells are related to the shunt. They are almost certain she is having an intermittent shunt malfunction. The Doctor’s think she might have ”Split Ventricle Syndrome” or she is extremely constipated (Don’t tell her I wrote that!, hehehe) causing the fluid to not drain properly in her stomach. However, due to all her scans and x-ray coming back semi-normal..they are puzzled to what it might be. Due to the longevity of her having the shunt there are new difficulties that have occured…they can’t just take it out and replace it…it could cause major internal bleeding, so basically what is the outcome of all this…only GOD knows…we are at a standstill. Meantime, I am doing my hardest to find a Doctor in a different state to take her to that has a clue. I’m praying for that!
Meanwhile, since we have been home Taylor has not been the same, scared to sleep on her own, scared to go school, she clings to me daily. I believe she is having severe side effects from all the meds including the steroids they gave her in the hospital which has caused her extreme discomfort in all of the muscles in her body. She resists walking and refuses to do anything on her own anymore. Those who know her, know that she has an unbelievable spirit..one that is unforgettable! It is truly breaking my heart. I love that child so much and to see her go through this has been maddening and frustrating. Yesterday, I took her to a nearby pool. With her resisting , I carried her into the poo. She clung to me for a few minutes, but once she realized that her muscles didn’t hurt she spent the next hour in the pool swimming like she always had. She smiled and laughed just like she always had! Wow, what a blessing that laughter is from her. Today, the pain continued.
Meanwhile, I feel as if my two other children are being ignored from me. I am so wrapped up and puzzled by her illness, that I feel as if they are not getting the love and attention from me that they need and deserve. Erin has been waking up daily with blisters on her feet from her leg braces and the lack of proper shoes to fit them. Jorden broke his glasses (these were his back-ups) and I was so irritated…because it was ONE more thing I had to do was to go get them fixed! I felt so guilty for getting upset with him. When in reality, they are being extremely cooperative, loving, and patient with being shuffled between friends and not knowing who or what they are coming home to after school.
That brings me to today…I had a feeling for the last week that the message at church today was one that I needed to be present for. Do you ever fill that you walk into a building or a place and know that there is NO other place that you should be but there? Well, I knew when I walked in Central Christian Church in Las Vegas, NV that I was supposed to be there today! In fact, I think most of the people that know me knew I needed to be there because when I walked in the door I had many people telling me to go and sit down. I learned allot from this service today…but mainly I learned “Trust God no matter what!” I don’t know the answers, but I know and I have to believe that God does! Jud Wilhite, the pastor at my church said today “take your pain to God and work it out with him”. It is easy to forget that. Isn’t it? If you want to check out the service go to: www.centralonlinecampus.com on Tuesday @ 5 pm PST. Wow, what a difference it made for me today!
Also, on a side note…thanks for being patient with me. I promise that my blogs will come more frequently. I don’t know if it helps others…but it helps me to write…so I will attempt daily, even if just brief.
They sang this song at church today…And I believe it says it all! “There will be an answer.” Hope you enjoy!
[youtube=http://www.youtube.com/watch?v=P9FslIl2R-I]
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