Showing posts with label Osteogenesis Imperfecta. Show all posts
Showing posts with label Osteogenesis Imperfecta. Show all posts

Friendships Have Ups and Downs, Good Times and Hard Times

Good Evening Everyone!! I hope you were able to enjoy your day. I did enjoy mine; the sunshine, just the warmth of it all. The gentle breeze, the coolness of the air. Watching the birds and animals playing around outside in the beautiful day. 

I want to tell you just how important friendship is and how you build and keep your friendship when trials come. I say this because I just went through a very trying time with a friend. I say this because friends are very important in our lives; how we continue our friendships really matter. I got to thinking about this being Friendship Sunday and with the events of this week I have to say that I am thankful, grateful that I still have my friend even with the hard time that we just went through.

I would like to open this with many of our issues were misunderstandings. Sometimes when we would disagree on things much hurt went between us. This was difficult to recover from sometimes. Now things have changed between us, we have agreed how we would communicate with one another.   Today we had a conversation that was going well then something was said that my first reaction was to get angry and let my friend know I was very hurt by what was said. I didn’t do that though. I paused, took a step back and answered my friend, but I did let her know that I was hurt by what she said. I was hurt by what it implied of me. She also paused before answering me; she said she was asking a question, nothing else and also said she was sorry I felt hurt. I told her I was hurt by the way it came across or was assumed. I took a moment to stop, wait do not react to what she’s saying. I had to tell myself not to jump in, but to wait, let her talk more. I did just that and even though she asked me to forgive her I said no need to forgive. I felt this was a matter of misunderstanding and rather than she and I to argue through the conversation we talked through the conversation. Now, we have agreed this approach to when things hurt us, we misunderstand or it makes us want to “attack” with words we now pause, wait until what is said is said then read it. Again pause before responding back right away this way there is less arguments and hurt feelings. This approach is different for her and I,  but this is going to the best way. I can say that it will make our friendship stronger for that. I give her Biggest Hugs for standing by me in our friendship to take us on a closer journey as friends.

I hope that this has and will help many of you that may have a friendship that has bumps in the road. Please take the time to really appreciate and talk with your friend when you hit one of these bumps. Do not let a bump cause a roadblock or a destruction in your friendship. Stay close to the Lord, dig in His Word. Look to Him when you have a bump in your friendship and your life He will get you through even when you feel all alone. I can tell you there have been times I have felt alone; not until later did I realize that He was carrying me when I was at my weakest.

I will close this with next Sunday, October 15th is Friendship Sunday be sure to invite your friends to church with you. You will have something else to talk about. A new subject, how great is that? 

Have a great day Moms!!

Grateful for my Family

Good Evening! Hope you all have had a wonderful day.  I titled this "Grateful for my Family" because I am. I know simple right, but it goes so much deeper than that.  I recently went through an injury that had me laid up these last three months; it was a difficult journey. I not long into it started sensing things with my husband. I didn't know what to think. I would mention it to one of the beautiful ladies that came out to help me. They really touched my life, my husband's life, and our son's life in so many ways, on so many levels. I said I didn't know what to think about what I was sensing, feeling from my husband. I must say that God moved in such a way with him to touch me to my core. I say that because he made himself so vulnerable. I mean I could have hurt him so big, I mean big if I was that kind of woman. Thankful that God made me not that kind of woman, but a woman of great patience. I listened to his words that he shared with me, he said he had to disconnect himself from me, separate himself from what is going on around him, separate himself from watching me struggle to walk. He said that it crushed him, it hurt him deeply to see me that way. I was humbled by his words because they spoke to me so deeply. I cried my heart out to him even through my pain. I told him I loved him so much already, but I love him even more. We are even closer now that I am starting to come around from my injury.

I am not going to end the post here just quite yet. I must also include our son. I am so thankful for him. God really had me wait a long time for him. God knew the desire of my heart; that I wanted a child. God knew also that in 6th grade when we were asked to write a paper about what we thought our future families would be when we grew up and were married. I wrote in there that I wanted children, but I also asked God for a special needs child that I could love and nurture the way He would have me to do. I prayed that He'd give me the heart of a Mother for a special needs child. I prayed and watched, heard others and friends having babies around me. I remember saying "that should have been me;" I had shed so many tears in this time of waiting on God's timing. His wonderful timing that we are sometimes too quick to try to speed things up, but God still makes us wait. The time for me was fifteen years. I know that may seem like a super long time, but I am glad that God had me wait that long. He was making me be the mother I am today. Our son is such a wonderful young man. He is my special needs child that I prayed for and also shares the same bone disease with me; Osteogenesis Imperfecta. This is a speck in our lives it's not a part of us. You say, yes, yes it is. Hear me out, I said a speck in our lives because that's what it is. It's not a "part" of us meaning that when we meet someone we don't walk up and introduce ourselves and add on there "I have Osteogenesis,......"  We just don't do that and I have taught him that it is a piece of him that it doesn't identify him. Yes, his friends and others know he has it because they've been there with us through the infusions that we have to receive. I have received so many compliments from teachers, friends, family, and others about him. In fact, one teacher bragged on him because of his stepping up to ask if he could do his class project on his bone disease. She thought this was very big of him because he could have been ridiculed by classmates, put down, bullied, and others could be nice and accepting. I have to say that all his classmates have accepted him and they treat him like their other friends and will brag on him to me as well. She said he was very informed about the disease. He wasn't afraid to share about it; he explained about the anger that we deal with because of the continuous breaks with the bones. He even included in his project about my diagnosis after his. Mine being diagnosed as an adult; the teacher said you could hear a pin drop with the class. They waited eagerly for his next word. Then he told them how many fractures I've had. The sound they made, made the teacher laugh. He then told them how when he broke his elbow that after he fell and said "OW! My ARM!........Is my camera ok?" We got a good laugh when it happened. I told him we needed to get his arm fixed and we will find the camera. Our son is such a blessing. He and I have much time together and we enjoy one another. Yes, there are times when he may not be on his best behavior as is expected with children. I have a phrase that now I cannot finish without him interrupting. I have told him when he does he must tell me what it is. We then discuss his behavior and he then writes scripture out based on the behavior. I then have him write a prayer to God also about his behavior.  The phrase that I use with him during these times is the following, "When you choose the behavior, you choose the consequences!" I haven't had to use it a lot, but it really hit deep with him the first time I used it that it didn't need to be used much.  I now can get "When.....(that's it) and it's "Mama, no, please, please don't finish it. I would reply, "Ok, I need you to tell me what my phrase is and what it means." Well, I have gone on for a bit. Go spend some time with your families. Thanks for stopping, feel free to leave a comment. 

Have a great day Moms!!

Blessing A Mom's Heart



Morning Blessings to all of you wonderful Moms!!! This morning was a little challenging with rising from bed. My legs didn't want to work with me, but I took the time to thank God for waking me to have another day to spend with family and especially with Him. 

Once I was downstairs I got myself ready for the day. I then went to the living room to have my quality time with the Lord. I started by reading my morning devotional A Spectacle of Glory God's Light Shining through Me Every Day, by Joni Eareckson Tada. Today she wrote based on Ephesians 5:20. Paul tells us that we must be "always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ." For everything??? I have wrestled with these words, why, because there are things that I guess I keep to myself - this is futile because God already knows! The Bible tells us we're to give thanks, not only for the good stuff that happens in our lives but also for those hurtful, crushing, heartbreaking, out-of-control moments as well. He asks us to see life from His point of view. I look at this disease that my son and I have, the Osteogenesis days are challenging, but God gets us through. I think that He sees right now, right now how one day we will be healed and how the tears, the bruises, the setbacks and sorrows of this life have worked for the glory of His name. I spent time in prayer and I thanked the Lord for everything even for the Osteogenesis and the pain that have been my companions. Not that I like them, but God has a calling, a purpose for my life, for my son's life -- for that matter for your lives as well. We can endure whatever He allows touching our lives. He has our lives cupped in His hands and He loves us and He works every moment for the best and for His glory. 

Hoping to see a friend today. Not sure what they have planned for their day, God does. I will be spending some time in the Word and trying to do some therapy things. I pray that you have wonderful days, filled with the mighty blessings that God has for you!  Don't miss out on all the little and big things that God has to show you. I remember walking with our son when he was a lot younger. He said, "Mama, Mama, look at these tiny purple flowers!" I totally missed them why because I was in the "adult tunnel vision" - this is how we get as we grow up. We become focused on the things of life, things we have to do, what's next on our agenda. That day when we were walking my mind was on when we get back he will go down for a nap, I can get dinner started while he sleeps I can fold the laundry that's washed...and the list continues. When he said that simple phrase "...look at these tiny purple flowers!" Stopped me in my tracks!!! I looked down at him and said show me, baby. He showed me and they were what we consider weeds, but God created them for our enjoyment. I looked closer, then he picked one for me - they were so intricate.  The colors blended just perfectly. Now I pushed that "tunnel vision" to the wayside never to reintroduce. I look for all the tiny things that God created. When I see something new, or something I have seen even daily I still thank God for that blessing. I go for a walk (for therapy) I look for things asking God to show me what He wants me to learn or gain through the walk. I spend time talking to Him. No, I don't get funny looks from people that are around me if any because we don't have to speak out loud to God when we're outside, out in public unless we choose to. 

Thank You for stopping by and taking the time to read my post. Have a wonderful day!!
May God richly bless your lives,


A Beginning!




Hi, Everyone!!! This is a new blog for me. I thought I'd get into writing from the heart of a Mother. I am a Mother to a very special, special needs child. My son has many challenges before him, but he hits them head on one at a time. I love him he's my precious gift from God. His special needs are as follows although I do not let these define him. He has Sensory Processing Disorder, Developmental Motor Coordination Disorder, Dyspraxia, Hypotonia, and Aspergers. 

There is one that he and I share together is Osteogenesis Imperfecta. The last one Osteogenesis Imperfecta we have a funny beginning. Our son was eight years old at the time, his school nurse told me that she thought our son was fracturing way too easily. She then recommended that we have him seen by his pediatrician. I set the appointment and we were off. We went they sent us out for an x-ray from his current injury than after we returned to discuss the next part of the protocol.  We were then directed to a nephrologist, a kidney disease, and transplantation physician. We were a bit more frightened now being directed here. How much more serious is this we thought. Well, we found out that Osteogenesis is a fatal disease. Now, the funny begins, yes you heard right "the funny". The doctor calls me over to where our son is on the table to take a look at his eyes. Our son speaks up and says, "My Mama's eyes are blue too." The doctor says, "That's nice, but I am talking about something different". Here comes our son back at the doctor; "Ok, but the whites of her eyes are blue too." Yes, he did just say that. Ooops! Bad idea here comes that little light, you know the one, the famous one that likes to blind you when the doctor says "let me look at your eyes". Yes, that one that one came at me quickly. The doctor told me to look up, look to the side, look to the other side, now look down. Yes, I think you have it too. You need to see your doctor as well. Here have your doctor run these tests on you. I took the list of tests that he wrote and took them to my doctor, sure enough, my doctor added more tests to that list. After eleven vials of blood and a bone density test, my doctor came back and told me that I too have Osteogenesis Imperfecta. This was difficult to accept all together at the same time. I felt overwhelmed. I didn't know if we were going to be ok. They told us that this is fatal. We have a bigger God who is in control. He has been with us throughout this journey. He's shown me ways to help our son understand the disease from his point of view, but also to teach him what it is like at an adult point of view. While some of you may disagree with doing things this way. This is a disease that he's going to live with for the rest of his life as am I. I wanted him to know from both points so that when he grows to adulthood he wouldn't have surprises in the waiting for him. I didn't think this was fair to do to him. I would want him to know and be comfortable when he got to this point. We are a team and now we do things together. He goes for infusions I go with him and spend endless hours and days at the hospital to be with him and he does the same with me. Not only do we have that special bond and Mother and son, but now even closer bond with our both having Osteogenesis Imperfecta. If the moment you're in is a blessing or a challenge, realize that you're alive and one day God will call you home. Take each moment and find the blessing within that challenge. I say that because with the OI this is something to find a blessing can be challenging. I must say that a friend of mine sent me a shirt that says the following,"I am an Osteogenesis Mom, just like a regular Mom, but only cooler". This may sound strange or may be taken in a wrong way. The way that my friend took this was that she looked at my personality and how I was taking the OI - she said this is so you - you are so positive and fun. The shirt to me I took as the "cooler" part is we always have something going ... friends have laughed when I break because I say something like "Oh, I just went snap, crackle, oops!" So now you can see that the shirt fits me. I appreciate your stopping by. I will let you go now- enjoy your day. May God be with you - spend some time with HIM.


Have a great day, Moms!