This was supposed to be posted yesterday, May 12, but when I finally got to sit down at the computer, Blogger was down. So, here it is now.
Yesterday was May 12, which means yesterday was 6 years since our first diagnosis. I was trying to figure out how I felt all day, but I think my emotions escaped me. Overall, I did well. Time does do a certain amount of healing. One thing that tipped me over the edge was a potty incident that happened to Ian at school. The mere fact that Ian won't be at the same school, with Daddy to be there to help out, just drives me insane. I hate all the thoughts I let roll around in my mind. Maybe for once, I should think about all the good "what-ifs". Like, what if he does really well at the new school. What a concept.
Okay, so back to emotions. As I was jogging last night I pondered it all in my head. I began to think about Christ, because I KNOW without a doubt, He has a plan (unbeknownst to me of course) for all that happens, including rotten Fragile X. My kids may have Fragile X, but they're still my kids...wonderful, happy, adorable children. Then I began to think about the Bible verses tell us that we have not suffered anything that Jesus himself did not (He actually endured worse, in my opinion. I wanted to apply that to our situation. Jesus may not have suffered with Fragile X itself, but He did suffer loss. There's a huge sense of loss with the news of a diagnosis...whether it's Fragile X, Downs Syndrome, Autism, Emotional Disorder...whatever. Jesus DID suffer loss. He suffered loss through the death of His friends while on earth. He suffered loss through betrayal. Most of all He suffered loss by time separated from His Father while on the cross. This biggest loss He endured to the end, as is evidenced by His words, "...into Your hands I commit my spirit." He knew that ultimately His spirit belonged to His Father, and He knew the joy coming. And I know that ultimately, my kids belong to Him as well. He has most graciously 'loaned' them to Jim and me. He trusted us to take care of them and to 'train them in the way they should go'.
I cannot answer those who ask the why's of God. I've asked my own. I do believe I will have them answered in heaven...and am thankful that He, the Lord Jesus Christ, found me, loved me, and calls me His own. I could not make it through Fragile X without Him. For those who know Him as your Lord and your Savior and your Friend, don't ever let Him go! For those who say that He is responsible for all your woes in life, I am truly sad you feel that way and hope that your eyes too will one day be open to what it REALLY means to have Him as your Savior. It's a lot to take in, but well worth it. It's the only thing that makes this journey bearable for me.
So, my final thoughts....does any of this make it easier to live life? Does it make having Fragile X (or anything else) great? Absolutely not. But it does lead me through each day. And it reminds me to find the joy in all things....the kids' smiles, the "I love you's", each accomplishment, etc. Because Christ was willing and able to endure all He did, it makes me want to do my best to 'endure' to honor all He did for me.
Okay, thanks for sharing this day (a day late) with me. I still remember it like it was yesterday, and I will remember the other 2 as they come along too. It's good to have friends and bloggers to share it with!
Showing posts with label diagnosis anniversary. Show all posts
Showing posts with label diagnosis anniversary. Show all posts
Friday, May 13, 2011
Tuesday, May 11, 2010
Year 5 Anniversary; Tooth Fairy Overrated
Well the time has come around again. The 12th will be the 5 year mark of our first of 3 diagnoses. It hits me differently every year. This year feels especially remarkable as I see how far Ian has come and how incredibly happy he is the majority of the time. I feel especially blessed as I realize that the only medication we have him on is clonodine, and at a very low dose (sometimes lower than we would like). Hearing about all the meds is one of the things that scared me the most about this diagnosis. I'm not saying that Ian will never need to be on anything 'heavier', but I am soooooo glad his quality of life is such that we have not felt the need to change things. So, Ian, I just want you to know how incredibly proud I am of you and how much I love you! You are my big boy! Now, could you work really, really hard on the potty training thing, PLEASE!
Okay, wait til you hear this. Avery lost her first tooth last week. We've never been big fans of the whole 'imaginary character' things...one being the tooth fairy. However, with Avery being the only one who will actually be interested in the whole thing, we decided to tell her that the tooth fairy is one of God's angels, and that when she leavese her tooth under the pillow, the 'angel' replaces it with gift from the God who formed her and created her teeth to fall out and grow another. Well, that night I had her tooth in a little box ready to put under her pillow. She just looked blankly at me and told me she didn't want it there. I explained that that is how the tooth fairy gets it and puts her surprise there. Again, weird look. Then, as she looks around her room, she tells me she doesn't want the tooth fairy to come. Hmmm, what do I do now? So, I tell her that if she doesn't want her to come, she won't, but she can't be mad in the morning. She told me she wouldn't be mad in the morning. So, I complied and took the tooth with me. Low and behold, I never heard another word about it! She said nothing about it in the morning, or any time since! What's up with that? I'm thinking it kinda freaked her out to think that 'someone' might come in her room while she's sleeping, although I told her she would never even know. That's my little angel!
Okay, wait til you hear this. Avery lost her first tooth last week. We've never been big fans of the whole 'imaginary character' things...one being the tooth fairy. However, with Avery being the only one who will actually be interested in the whole thing, we decided to tell her that the tooth fairy is one of God's angels, and that when she leavese her tooth under the pillow, the 'angel' replaces it with gift from the God who formed her and created her teeth to fall out and grow another. Well, that night I had her tooth in a little box ready to put under her pillow. She just looked blankly at me and told me she didn't want it there. I explained that that is how the tooth fairy gets it and puts her surprise there. Again, weird look. Then, as she looks around her room, she tells me she doesn't want the tooth fairy to come. Hmmm, what do I do now? So, I tell her that if she doesn't want her to come, she won't, but she can't be mad in the morning. She told me she wouldn't be mad in the morning. So, I complied and took the tooth with me. Low and behold, I never heard another word about it! She said nothing about it in the morning, or any time since! What's up with that? I'm thinking it kinda freaked her out to think that 'someone' might come in her room while she's sleeping, although I told her she would never even know. That's my little angel!
Tuesday, May 12, 2009
4 Years Ago Today
Well, today, May 12, is the 4 year anniversary of our first diagnosis. Am I the only one who remembers their date? I don't mean to over-dramatize, but for me it was a date as much to remember as my miscarriage. Many of the same feelings and emotions. So, for my entry today I want to walk down a memory lane that took me closer to the Lord and showed me His great love for me and showed me that He really does care in the tough times. He cared so much, He gave me these great memories that culminate into His perfect and obvious orchestration of my precious Ian.
After Ian was born, but before his diagnosis, I was watching a Praise Baby video with him. As the music was going and the kids on the video were playing, there came a part with this boy in a wheelchair that had obvious special needs. It was the first time I had seen that part in the video, and I'll never forget the emotions that ran through me. I believe it was then that the Lord told me about Ian. (not audibly, but in my heart) Here's the part that took a while to figure out it was Ian. Ian had been born, but we had not yet had the diagnosis. I was pregnant with Avery as I watched the video. So, of course, I was convinced that it was Avery He was telling me about. It didn't take me long after our diagnosis for the video to hit my mind. It all clicked at that moment. The Lord was telling me about the specialness of Ian.
Ian is also the only child that I believe God gave us his name. Ian was never a name I would even have thought of. We had planned on naming him Brennan. I won't go into the long story of how I believe it was to be his name, but I remember it all happened as I was driving home. So, I immediately called Jim and asked him to look up the spiritual meaning in our name book. His name means "God is Gracious". I didn't argue. Jim and I both knew that was to be his name.
One more thing. I had chosen for my life verse(s) Jeremiah 29:11-13 early on in my Christian walk. At one point when I was so distraught and brokenhearted about the diagnosis, this part of the scripture reminded me that I'm not alone. "...plans to give you hope and a future." This wonderfully reminded me that as I seek Him and pray to Him, MY SON HAS A HOPE AND A FUTURE. It was then I realized that this part of scripture was not meant only for me to have as my life verse, but it was meant for me to have to turn to in that particular part of my life (and still today). God chose it for me to have it inbedded in my heart for just the right time.
Oops, I thought of something else. Again, I will shorten this story. My dad and I had never had what you'd call a great father/daughter relationship. It was just kinda 'there'. After Ian's diagnosis, something happened. See, my mom and dad had a son die at the age of 5. That son had Downs Syndrome. This was a place in our hearts where we could totally connect. It was not until we were talking about Ian one day that my dad opened up about things about my brother. He had NEVER talked about it to me before. Anyway, our relationship is so much different than it used to be. It's more like how its supposed to be.
So, I am one who believes that ALL things happen for a reason (even if I never know that reason this side of Heaven). And I believe that it's my role to bring all the glory to God that I can in all my circumstances. I fail miserably many times. But I do believe that Jim and I live out our life with our 3 Fragile X children well. (Again, not always, but overall) I want others to see a life of hope in me, not a life of pity. Afterall, Christ is all about hope.
After Ian was born, but before his diagnosis, I was watching a Praise Baby video with him. As the music was going and the kids on the video were playing, there came a part with this boy in a wheelchair that had obvious special needs. It was the first time I had seen that part in the video, and I'll never forget the emotions that ran through me. I believe it was then that the Lord told me about Ian. (not audibly, but in my heart) Here's the part that took a while to figure out it was Ian. Ian had been born, but we had not yet had the diagnosis. I was pregnant with Avery as I watched the video. So, of course, I was convinced that it was Avery He was telling me about. It didn't take me long after our diagnosis for the video to hit my mind. It all clicked at that moment. The Lord was telling me about the specialness of Ian.
Ian is also the only child that I believe God gave us his name. Ian was never a name I would even have thought of. We had planned on naming him Brennan. I won't go into the long story of how I believe it was to be his name, but I remember it all happened as I was driving home. So, I immediately called Jim and asked him to look up the spiritual meaning in our name book. His name means "God is Gracious". I didn't argue. Jim and I both knew that was to be his name.
One more thing. I had chosen for my life verse(s) Jeremiah 29:11-13 early on in my Christian walk. At one point when I was so distraught and brokenhearted about the diagnosis, this part of the scripture reminded me that I'm not alone. "...plans to give you hope and a future." This wonderfully reminded me that as I seek Him and pray to Him, MY SON HAS A HOPE AND A FUTURE. It was then I realized that this part of scripture was not meant only for me to have as my life verse, but it was meant for me to have to turn to in that particular part of my life (and still today). God chose it for me to have it inbedded in my heart for just the right time.
Oops, I thought of something else. Again, I will shorten this story. My dad and I had never had what you'd call a great father/daughter relationship. It was just kinda 'there'. After Ian's diagnosis, something happened. See, my mom and dad had a son die at the age of 5. That son had Downs Syndrome. This was a place in our hearts where we could totally connect. It was not until we were talking about Ian one day that my dad opened up about things about my brother. He had NEVER talked about it to me before. Anyway, our relationship is so much different than it used to be. It's more like how its supposed to be.
So, I am one who believes that ALL things happen for a reason (even if I never know that reason this side of Heaven). And I believe that it's my role to bring all the glory to God that I can in all my circumstances. I fail miserably many times. But I do believe that Jim and I live out our life with our 3 Fragile X children well. (Again, not always, but overall) I want others to see a life of hope in me, not a life of pity. Afterall, Christ is all about hope.
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