Warning this is a very sappy and emotional filled post that some of you may not want to read. No facts and figures here. Only my thougths and feelings that I need to work through.
Last night was a nightmare. Abe had seizures and Mo wanted him on the pulse ox. Good thing cause his oxygen kept dropping so we put him on oxygen. I was scared to give him his new bigger dose of Ativan cause I was so tired and I really needed to watch him. I gave him the smaller dose which helped a little bit but soon he was awake having more seizures. I went ahead and gave him the larger dose and he is resting well. He even pulled his feeding tube and oxygen out. His numbers are good. So I thought I would send this email before I got busy putting the feeding tube back in and making him mad.
This morning I received one of the most precious emails. Brandi said I know you receive emails saying how wonderful you are, strong you are, how much faith you have, saying they are praying for you, scriptures and all that. She said well I just don't know what to say. You see Brandi and I were pregnant at the same time. We shared all the ups and downs of pregnancy. The feeling bad, the excitement and all the fun stuff. We were both so very excited that our children would grow up together. I went through this of course with other friends being pregnant at the same time as I was with Mary Elizabeth and then with Michala, then of course with Marlee Anne. Would I rather it be like it was with Marlee Anne yes. OK before I continue I KNOW what I am supposed to feel, how I am supposed to act, what I am supposed to say, what I am supposed to believe BUT sometimes I need to share how I feel. I do not dwell on these feelings. I feel them get them out and go on. Well lately I haven't shared these feelings with anyone and Brandi's email brought a flood of emotions that need to be dealt with.
First and foremost I have three very dear friends Brandi, Ashleigh & Jennifer who had babies right around the time Abe was born. Jennifer and I have discussed this briefly and now Brandi and I will have the opportunity to discuss it. None of them have shared with me very much about their babies hitting milestones and doing this or that. I didn't realize it at first then when Jennifer mentioned it and now Brandi it hit me. Is it hard for me to hear those things. Yes. Does it make me think about what Abe should be doing. Yes. However that doesn't mean ya'll should stop. I want to share in your children's lives. I want to know what's going on with them. God brought each of you into my life years ago knowing that this day would come. Ya'll are there to help me through this not to shelter me from what should be. Ya'll are all part of this healing process. So right now today stop keeping things from me. Share! Bring those babies over to see us. Will I hold them and cry. Yes! But I would probably do that even if Abe was fine.
When I see another child around Abe's age or younger doing all the things I long for Abe to do it does make my heart want more for him. I would still love to see Mary Elizabeth with those long legs walking around. I would love to hear her beautiful voice singing. I would love to see Michala getting into all kinds of trouble more so than she does now. I am so very very thankful for the blessings that I receive from each of my children. Blessing I would not receive, lessons I would not learn if it wasn't for their special needs. However that doesn't mean I don't long for their lives to be different. I learned a long time ago that I cannot dwell on that. I need each of my friends to help me through this. Some of you stand in the gap quietly praying for us, some of you speak out every now and then through email, a phone call or a card, some of you bring food to help nurture our souls, some of you pray with us, some of you send scripture to renew our souls, some of you get the blunt end of hearing my worries and woes more than others, some of you sit with our children while we have to take the others to appts, some of you bless us with trips away or time out for fun stuff with our family. All of you have a place in this journey with us. All of you are greatly needed. When you don't know what to say. Say that. Just like Brandi said this morning. Be honest with us. This morning I felt so lost. I didn't know what to say or what to do. God sent Brandi at the perfect time to say hey I am sorry. I needed that so bad.
Abe's first birthday is coming very quickly. I keep seeing Marlee Anne sitting in her highchair on her first birthday in her beautiful princess dress eating cake and Aunt Kim & Brooke letting her get it every where. I so want that for Abe. He won't be sitting in a highchair and he won't be eating cake but I will celebrate his life.
Honestly I do not understand. God chose us. WOOHOO!!! Why? Some of you will tell me I am not supposed to ask that question. OK I am asking that question. When I get to heaven I will not care about the answer and I am sure now the question doesn't matter. Right now to me life sucks. I don't say that I often because I don't feel that way too often. I hate that my children have to endure what they are enduring. I hate that the only way I am making it through all this is to allow my heavenly father to carry me through it when I know that He allowed it. It's a heavy load and lately it's been weighing me down. Breathe. Breathe? How can I breathe when I am drowning. I cannot even feel God's hands pulling me up out of this pit. Then Brandi says I am sorry I don't know what to say. I immediately begin to cry and my body relaxes and God says here here I am let me carry you. Sometimes I can be so hard headed. Hey if ya'll hear or see Mike in his office laughing histerically ya'll know he has just read this. Maybe not sometimes maybe most of the time I am hard headed. This is not going to get me. I went through a horrible depression with Michala. I remember not wanting to decorate for Christmas. I remember her amputation and me sitting and holding her while Mike and Kim decorated the Christmas tree. I remember Brooke planning a "White Christmas party" and me thinking how am I going to take my baby out some where with one leg. I am bound and determined to not go through that this year. Some of you bend over backwards to try to make life easier for us and to try to understand why we can't come to church during this time of year, why it's hard to load everyone up and get out in the cold for something, why it's easier to have Christmas here than somewhere else. Thank you for sticking with us through all this. Thanks for trying to understand things that I don't even understand.
The other day on the Aicardi listserv we had a conversation about our lack of faith being the reason we have special needs children. I was told that one time at Myrtle Beach while I was in the pool holding Mary Elizabeth. This lady asked me how old she was and what was wrong with her. As soon as I told her she said well if you had faith and believed she would be healed. I told her I did have faith and I do believe she will be healed but I think that will be when she gets to heaven. She said let me go up and get some scripture for you because you are not believing the right way and because of your lack of faith your baby is sick. I have since had several people that actually know us very well to tell us it's my lack of faith that is "causing" my children to be sick. OK believe whatever you want but the God I serve is not punishing me for anything that I have done. My faith is the only thing that gets me through each night and day.
I am not sure why I through that in this email. I should have started this email off by saying it was going to be a lot of rambling too. I will get settled and straightened out some time soon and start making more sense. In the meantime thank you for letting me ramble and share my heart with ya'll. I didn't proof it so I apolgize for any typos or dumb sounding stuff.