The last couple of days have been filled with many supportive messages and offers of help. There have also been many people complimenting Mike and I about how we are handling this. I hear words like strength and courage and many other positive words. These words lift us up but I also feel the need to be honest, not just for all of you reading today but for those people that will read our blog in the future, for those who may have lost a child or are in the process of losing one .
My emails are written when I am in the mindset to do so. There are many moments where there is absolutely no way that I could read the screen and tell my brain to make my fingers type. The messages that I write have also been edited several times in my head. What you don't know is that Mike and I often cry on our knees because our legs will no longer hold us upright. In the hour before we left the hospital I was throwing my fists into his shoulder sobbing that this what not how I was supposed to be bringing my baby home. I can stare at Georgia for hours whether she be awake or sleeping and think that only a few minutes have passed. Last night I couldn't brush my teeth because my mouth kept filling with salty tears. I refuse to leave the house because I can't be away from Georgia. I'm afraid that she'll take a turn for the worse and I won't be here.
Again, I tell all of you this not to make you sad for us but to know that we need you still and will continue to need all of you. I hope that are moved by our story and are spreading the word about SMA. Did you know that it is the number 1 genetic killer amongst children under 2? I had no idea. I had never even heard of it 3 weeks ago. Did you know that despite words like 'breakthrough' we are at least 10 years away from trying anything significant on human beings? This is not a disease that can be fixed by diet and lifestyle. It doesn't matter that I ate mostly organic fruits and vegetable while pregnant. It doesn't matter how long I breastfed my baby. It doesn't matter that I tried to do everything right, I am still going to lose my baby.
Please continue sharing 'Georgia's Journey'. Knowledge is power.
Shores of Grief ~ 15 Years
1 week ago
I appreciate you sharing these private, personal moments with us. I'm not sure I could do the same...You are in our thoughts and prayers.
ReplyDeleteginette
I am speaking from my heart and wish so badly that I could make this pain all go away. We love you so much and are praying for you guys.
ReplyDeleteHuge hugs from your big cousin.
xoxox
Jo
Dear Kristen and Mike... You are all constantly on our minds and in our prayers. I said it before and I'll say it again. 'The blood flowing through Georgia's viens, is the same blood flowing through my viens. We are all connected by that blood. When you hurt, we hurt, when you cry we cry.' Your strength is so amazing. We are standing behind you all the way, just as much for your support as well as ours. I did not know those facts you mentioned above. I do know that it is so very rare and I ask WHY did it have to appear in Georgia... No answer comes. God Bless you all... Hugs and kisses for your little angel Georgia...
ReplyDeleteLove to you all,
Aunt Mary Lynn, Uncle John and family
Kristen and Mike,
ReplyDeleteThe strength you need can ony come from outside,no parent can do this alone which is why you are surrounded by people who love you and more prayers than you can imagine!We love you all and will continue to uphold you in our thoughts and prayers that you find peace and joy somewhere in each day-I know having Georgia home and hearing her laugh are things you weren't sure would happen and I am so thankful you have that-if only small things in such a difficult time.
Your ability to give others your thoughts and time and the fact you can think of people helping others and finding "good" is truly inspirational and you should feel proud-what an example you are setting for your girls! The sadness, being overcome etc. are all things that also will come, understandably (even thought hearing that doesn't help) but you are also showing your girls that grief is real, and no matter how strong we all go through that.
We love you all and send you our love, prayers and hugs....Bruce,Em,Tori and Jess.
Kristen and Mike, we too are always thinking about you guys. We are all saying many prayers for your whole family, and every night before bed my girls say a prayer for little Georgia.
ReplyDeleteLove Kristy, Jason, Gracy, Annabella, and Molly.
Kristen and Mike, tears roll down my face as I write this to you and while I also hold my 15 day old grandaughter asleep on my chest. Like you our daughter ate mostly organic, did everything right and is breast feeding. So far so good. Since we have heard about Georgias condition I have read up on SMA and everytime little Faith breathes unusually I jump to attention as does my daughter, and we think about the odds of SMA which are so high and which we were previously unaware. You are right, there is absolutely nothing you could have done to stop this genetic condition. You did everything right...very right. My cousins friends son has SMA but he got it at age 1 and now is 12. I was not aware of that until I shared Georgias blog with her. I have shared your emails and now the blog with people but now I will add it to Facebook in an attempt to educate more people and also give other parents who may be in similar circumstances a chance to gain support through you, because you may fall down together and weep together but you also have an inner strength that is unsurpassed. All that aside, though, if I could do anything in this world to alleviate even some of your unbelievably immense pain I would do so. hugs, Kate and John
ReplyDeleteI have a hard enough time reading this blog without breaking into tears. How you guys are managing day to day is truly amazing.
ReplyDeleteIn response to Kate and John's comment- there are different types of SMA. Unfourtunately, Georgia has been diagnosed with Type 1 or the infantile form.
ReplyDeleteKristen
Yes, Sorry Kristen if I made that hard to understand. I do realise unfortunately that Georgias is a different type. I just meant it as another example of how much more SMA information in general I have heard since hearing about Georgia. Hugs, K8
ReplyDeleteKristen and family,
ReplyDeleteYou are ALL very strong people, to go through the pain you are going through and to be trying to bring out the positives in others even though you yourself are hurting inside is true humankind.. You are by far a strong willed family who not only are thinking about yourselves but also the future of others as well.. Hats off to you guys!!
it must be wonderful to have an Angel with you.....My prayers go out to you all. As a mother and grandmother, i can't express my sadness except with tears rolling down my face. And pray for you and Georgia's gentle journey to Heaven.
ReplyDeleteKristen,
ReplyDeleteI have been thinking about this post (Honesty) a lot over the past few days. Just thinking about it brings tears to my eyes. Even though we really only know each other in passing in the halls at school, I feel so deeply for what you are going through. I don't think that anyone thinks you have the strength to NOT be on your knees, sobbing, as you try to deal with what is happening to your family. I think the strength to which people are referring is the strength you've shown in your ability to GET UP off the floor, to keep putting one foot in front of the other, to fight for what's best for your daughter, and even the strength to open up your lives and hearts here on the blog so that we can all support you in your journey, whether from up close or from afar.
Renelle