Thursday, September 9, 2010

He Speaks at She Speaks

There were so many moments of feeling God's presence & love at the She Speaks conference I attended in July that I had to share one of the best.
The moment that will be tucked away in my heart forever is being witness to God in His full glory through Wendy Pope.

Wendy stopped dead in her tracks, dropped to her knees,right in the middle of the hotel hallway,to scoop up my daughter from her wheelchair and display the most heartfelt love & affection for a girl she had never met. God's love shined in her and this moment & I was truly blessed to be witness to such love! AMAZING!

Oh My,I know God loved this moment too and there were so many more that He orchestrated. For me another one with Wendy at the cross Sunday morning. I have never had a moment in prayer like the one I had with Wendy! It was me,Wendy & Jesus. AMAZING!

My heart will treasure these moments forever.

To experience more from that moment with Claire, see Wendy Pope's video blog (August 2 post) she explains it so much better,tears will flow!
Claire's story:http

Tuesday, August 24, 2010

Captive Life

Claire had a seizure on Saturday that required an ER trip. She is better today,but I usually require a couple of days to recover mentally. I find God whispering to my heart through others, helping me see the light.

For example today as I was listening to a vlog speaking of captivity, I knew that Claire's seizures are a form of this. I don't think God is allowing these seizures as a consequence of sin,but He is definitely teaching me through this time of uncertainty.

 I feel a sort of isolation when we have to go through such times. I wonder when we will live normal lives again? Then I hear the whispers,I will use times such as this,I trust you with a time such as this,to accomplish My(God's) purpose!

I am honored that God has chosen our family for His purpose,even in the scariest times of Claire having a seizure! God appointed isolation is a gift that I need to be obedient in opening carefully.

Dear God,

I praise you for speaking to me during this time of isolation. I praise you for choosing me to be in this time and that you are using this for your purpose. Thank you for showing me joy in this time.Thank you for Wendy, for the vlog and all in this study!  ( Your grace amazes me! In Jesus Name, Amen

God Bless you all, Love Tina

Sunday, August 16, 2009


What Encourages You?
A question asked by the girls at (In)Courage, an awesome new site for women to come together for inspiration and encouragement.

My answer to the above question is simple: God’s Love!
But, that simple answer isn’t always simple for me to grasp. I have to remind myself often of that amazing truth. No matter the storm I am weathering, I can always find comfort and shelter in His loving arms. There is no better encouragement! He shows His love in so many ways in my life. If you read through this blog, or visit our daughter’s carepage:
You will see just how great our God is. Our lives have been truly blessed with a miracle. I also have the light in the eyes of my 4 children, to remind me of His amazing love.

What Encourages You?

PS. I am new to this Blogging, so please be patient with this site & patient with me, a not so computer savvy girl :) I just like to write!

Carepage Posting

Sorry I missed posting in July,but the only net I have right now is dial-up...need I say more? I am going to try to TWITTER,if anyone knows what that is or how to "tweet" I'm "omgmom",it is just a quicker way to follow our crazy lives!
Any how, Claire is doing great. We took another trip to the Shriner's Hospital & it did not disappoint. We learn so much every time we go. It is just such a good experience. They are specialized in pediatric orthopedics & they know their stuff! She will be getting her own wheelchair some time in the next couple of months. This was quite a process to find the perfect chair for her, mainly because insurance will only pay for one wheelchair every 5 years,so this one has to last! That is why we went to Shriner's for the wheelchair fitting,because they know what she needs. She was also evaluated for Occupational Therapy at Shriner's & the therapist concluded that she did not need Occupational Therapy!WOW,that was great news!She has come such a long way...Now remember...once upon a time we were told she had only brain stem function?? The miracle God has worked in our lives just keeps growing & growing! HE IS AWESOME!
And on that note... I still have to question His plan from time to time. How could I have such a huge miracle happen to me & still have the nerve to question??Questions on the death of children & young loved ones,questions on suffering & sickness & the evil things in this world? The only small answer I can find is, I will never know why or how God works? I am not supposed to have answers to all my questions.He Is God! I won't go into the details of how my mind works,but lets just say,MY MIND IS FULL! I have been having lots of questions as to how & why God does things. I have never questioned why Claire has to have a disability,but I have found myself questioning why she also has to suffer from these seizures on top of everything else? And not just a typical seizure,but why so life-threatening?? I can only live the life He has blessed us with & live it well! I can try to empty my mind of all the questions & fill my mind with all of God & His love!Make myself focus on all He has done & not all the "what if's". Like I said MY MIND IS FULL, but I know He can lift me out of the fog & open my eyes to all the good in this life & how much better the next life with Jesus walking by my side will be.JUST IMAGINE!
Alright,I hope you all don't think I'm rattling on too much,but you know how my writing things down help my mind! Thanks for listening.I hope some of you are brave enough to try TWITTER! GOD BLESS YOU ALL!

Monday, April 13, 2009

What's Wrong With Me?

I find myself asking this question often. I used to have pretty good social skills,especially when I was in high school. Do you loose social skills as you age? Or do you just loose the ability to give a darn? I've been told that I should just keep my mouth shut.(my 13 year old has been criticising my Easter day conversations) Apparently, I have a tendency to speak my mind when really no one wants to hear it. I speak the truth & sometimes I don't do it nicely. I talk before I think. I have been trying to have more Christ-like characteristics,but it seems the closer I get to better characteristics,the further I have to fall.

This is an area that I will continue to work on. I think my recent way of conversation is due to the fact that when you have a child with medical problems, you become part of a world that speaks the truth harshly,even when you don't want to hear it. There is always an arrogant doctor to deal with, or a rude receptionist & the worst is an insurance adjuster! I have to have good strong shoulders to deal with all the attitude. Lately,it has been an argument over insurance paying,or I should say not paying for things. All just part of the territory,but I think it explains the recent change in my social skills. So, let me apologize to any one who has been or will be offended by my harshness,I will try to do better & be nicer :)

Any how, now that is off my chest....Our Easter was great!! Claire had been sick for a couple of weeks with a bad virus. We all have been passing around sinus congestion,cough & fever. But, Claire was healthy for Easter,YAY. I have posted a few new pics, you will see how fast she is growing. Our Early Intervention team came & tested her last week. She is right on track in the social/emotional area. That is not a surprise! There are other areas she is behind in,one being speech. I think she is doing pretty well,but when compared to others she is behind. One way to help out in this area is enrolling her in a play group. She seems too little to me to be in a class,but if it will help her then I guess we should do it.

We have missed physical therapy for couple of weeks now,hopefully Claire will be able to go this week. I can really see a difference when she misses it. She needs to keep working out her legs,or they get sluggish. We also need to focus on getting her standing. She is not doing much standing & if she does,it is more of a balancing act. This is not good,because she needs to have her bones develop properly by standing properly.SOOOO,she needs a piece of equipment called a stander. We want one that is mobile. The best way explain it is: it is like a wheelchair,except she is standing up in it. The reason we don't have one,is because our insurance will not pay for it!

I will be calling our insurance company later to try to understand the reasoning for this. So, I will need prayer to find those Christ-like characteristics that seem to be eluding me lately.

I think I have done enough venting for today...thanks for listening. Thanks for the continued prayers, Claire is thriving because of them. I hope everyone had a good Easter & remember,He died so we could live. Praise God! Love to all, Tina

Tuesday, April 7, 2009

More Carepage History

Cozy at Home
Posted Jan 31, 2009 11:46am
The warmth & comfort of home greeted us last night when we walked through the door. It is one of the best feelings after being in the hospital. The trip to Cleveland was a quick one, but no less exhausting. The doctors increased Claire's seizure medication & started an antibiotic.

Although,no CT scan was done, they are confident it was not her shunt causing this. I am trying to make peace with the fact that sometimes we will not have all the answers when it comes to Claire. I guess miracles are that way! I also had a little argument with God yesterday as I was holding Claire & seeing that scary look of lifelessness in her eyes. I have some growing to do!
In the past, I have made peace with God's plan for Claire. But, as she becomes more & more full of life,it becomes harder & harder to think that she may be gone one day. When she was born I accepted that it could be God's plan for her to not live a full, long life. She was so fragile, there was no doubt that she was being carried by Him. I should still have no doubt about that.
I'm sureI am not alone in this, a lot parents struggle with the fear of loosing a child. It is just that I thought I had made peace with that fact. It is a fact that has to be dealt with when you have a fragile child. Apparently it is a fact that has to be dealt with over & over.Yes, I have some growing to do! But, I know God will be patient with me, while I do this.
I don't need to know all the answers,I just need to know God has all the answers & He may not always reveal them to me, why should He? He knows the plan for all our lives & that is enough. I will continue to look into the face of my beautiful miracle & see her eyes full of God's love & know that He is still carrying us all. I will still hang onto the faith & love that He has given us & know He will never let go.
There is one thing I know for sure,the Rainbow shines brighter after Claire visits.I don't mean to brag,but every single person that saw Claire yesterday was smiling,or even laughing, when they left. Our attending doctor said "she really has brightened my day" & he was not the only one to say it. I love that God has given her the ability to spread His light through her smile.
Thanks to every one for all the love, prayers & messages of support. It means so much!! God Bless & Love, Tina

Friday, April 3, 2009

Catching Up

I fell behind maintaining this blog,but I did post on the carepage,soo here you go...
Rainbow Weekend
Posted Dec 9, 2008 11:19pm
I thought I should give a quick update on our Claire bear. She had another seizure Saturday morning. It was a definite fixed stare,her body was a little rigid,no convulsing,but she threw up. Then she started the same breathing difficulty as before. It seems like she forgets how to breathe. She did not need rescue breaths given, until the ambulance arrived. We were transported to our local hospital & from there to the Rainbow. We were discharged Tuesday morning. She again had an underlying urinary tract infection. So, her seizure medication dosage was increased & an antibiotic started. Otherwise,all other testing was normal for her. She is sleeping like a baby now,& I am not far behind. It is just amazing to me how strong this little girl really is. 4 hours after the seizure she was her normal smiling self. Every person that seen her over the weekend commented on her happiness. I guess God needed her to spread a little sunshine to the Rainbow & that is exactly what she did.Well, I am headed to bed my eyes are puffy little slits,not a pretty picture. Singing praises to our gracious God for His continued blessings & giving us so much! Love to all,Tina