The music is playing and I am holding Lydia. We sing (well I sing and she sings in her own way), I turn her gently and she lets out a howl, showing me she loves to dance with mommy. We sway back and forth and turn a couple more times and she is smiling with delight. These are the moments that people need to see, she is just like anyone else. She is a child, she has a beating heart, she loves to experience things, she laughs and enjoys life. She is a child of God, she is special and she is just like my other children.
I cherish these moments with her. It was not too long ago that I could not because she was too sick. And too soon she will be too big to do this with, so I will savor these moments. I have danced with all of my children and it is has been something that I will remember as they do. It is quiet moments of pure joy to share with your children, to just embrace that moment.
It has been weeks since I have been able to pick her up and dance. I have allowed words to get the best of me. I remember that saying when I was younger "stick and stones may break my bones, but your words will never hurt me." I can't help but think how wrong that saying is. Words can crush a person. Yes, you have to let them, but they are hard to shake sometimes.
I just cannot shake the fact that a doctor told me to wash my hands of my child. Breaks my heart. If they are really in practice for children, why do you feel that way? Every life, no matter what, has purpose and is special. No matter what the circumstances were that that was said under, I think it is inappropriate. When I was pregnant and shortly after Lydia was born, I did have several people tell me that I should have had an abortion/aborted her. However, most of these were strangers or distant friends. People that I could disassociate myself with easily. However, when it is someone that you are suppose to trust and rely on for advice and knowledge of how to raise you child, it is really difficult.
I am not sure why so many people have to defend why they had their child. Why is she any different than anyone else? I praise God that our family has been pretty shielded and we have not run into that too many times. However, some people have to constantly defend the life of their child. Down syndrome does not make her any different. It does not define her. There may be some limitations, but we all have those. What she can offer is different than what I offer, but that is what makes life beautiful.
I can't quite explain how upset this subject makes me. Mostly because I don't understand why I need to justify her life, when there are other people out there that don't. A friend of mine just found out that her daughter has cancer. Does that make her child less of a person? Her life may have limitations, she has medical issues, and she is struggling. Does she have to defend why she had her? No. It just bothers me how judging and inconsiderate we are as a society. We want to be accepting of everyone, yet we go to great lengths to make sure our child is not that one. Oh I don't want Down syndrome, oh I am so sorry for you, oh it has to be so hard.
What I can say, however, is the blessing that these folks are robbing themselves of. Lydia, as all of my children, has been such a blessing. She has taught me more about myself and what in life is really important. And let me tell you, most of that is not because of her Down syndrome. It is because she has had some defects and yet has over come them with a smile on her face. She is determined. She looks at the glass as half full all of the time. She tries and tries until she get it, she does not give up. She looks at the good in things. She laughs....a lot. She smiles all of the time. She chooses to look at the good and not the bad.
So, I picking myself back up and trying to put all the pieces together. I have grieved over these words long enough and they have robbed me of some weeks. However, I know that I am stronger now because of it. I am more proud of my daughter (all of them because they also heard the comment) more than ever. What we are learning now is something that no one can teach you other than God. God loves our family enough to give us this miracle.
The road has been tough lately. There has been a lot of things going on. However, the blessings that we continue to get are amazing. Each day is something new. The road has been lonely and weary. The circumstance has gotten the best of me. However, now that the mud is getting clearer, I am stronger, and am more faithful, I am a better person. God is teaching me. God is showing me what is really important. God holds my tomorrow, and now more than ever, I am SO thankful for that. The world is a scary place, and I find GREAT rest knowing God has it, I need not worry!
I made a verbal complaint to the GI clinic about our doctor and that the nutritionist never returned a phone call or an e-mail for 5 weeks. I am getting past that and see just how resilient Lydia is....she is overcoming great obstacles. It is all because God is working in our lives. He is a miracle worker, big and small, He has everything covered. On a side note, if you are ever someone making a complaint about an inappropriate comment, don't defend the person and try to "cover up" why they may have said that. That may have gotten me a little more fired up.
So, yesterday Lydia had her 15 month appointment. Last week she was down weight a lot. She was only 15lbs 12oz. Yesterday, she was 16lbs 3 3/4oz. WOW!!!! Ellen yells, mom now that is something to celebrate. Yes, honey, yes that is. The prayers are working! Our doctor thinks that she looks great. We hope that we have changed a couple of things around with her nutrition and this will help her out greatly.
We still need the prayers as we are not out of the woods at all. We still need her to stay healthy, that is really going to be the key for us over the winter. She still needs to continue to drink. We are not at our goal, but we are getting closer! We have decided to stay away from the tube for the time being and see what she can do on her own. She also needs to continue to eat (just a side note for any of you mayo lovers...Helmans really is a lot better for you than store brands. We are using mayo instead of oil, but Helmans is like 60 calories and the store brand is 110...so we are using the store brand naturally!) Thank you for your prayers, we ask that you continue to pray for her. We ask that she continues to stay on this track. Well, maybe not 8oz a week, but at least 2oz a week!
We are not on as big of a push to get the tube out. Our concerns were that she was not spending anytime on her stomach because of the tube. She was also getting a lot of infections from it and it seemed to be causing her discomfort. Since switching back to the smaller tube, we seemed to have resolved many of those issues. So, as we discussed with our pediatrician, we will try to leave the tube in for the winter just in case she should happen to get really sick. The tube will allow for some different options then. We are satisfied with that.
She will see her new GI doctor the end of December. Please pray for that as well. It has been a long battle with GI and we just could use a break!
We are still waiting to hear back from cardiology as to when her Echo will be rescheduled. We would like to just get a clean Echo so we can put the heart stuff behind us for a bit! That would be awesome!
I will defend Lydia's life until I die. She deserves it. I guess it teaches me that we all classify life somehow. However, we should not. We have no business doing that. I am sure that I do it to and don't even realize it. Everyone has a purpose and is special. God does not make junk. I am just blessed to be able to realize that each and every day.
Education has been a big thing for me. Yesterday I ran across an amazing video. If you have about 14 minutes, I highly recommend you watching it. And don't just watch it, but pass it along. Continue educating one another on the blessings of life. May we all be able to embrace the life God has given us (sometimes I catch myself here because I am not asking you to embrace lifestyles, choices we make, but the differences in how God created us physically. I hope that makes sense, but I do believe the Bible and know that some lifestyles were not created by God and therefore I am not saying embrace those.)
I hope this link works! It is great!
As we start off November, it is the month to be thankful. I believe that I can't even begin to start to thank everyone in our journey, however, I give thanks to God for sending His Son to die for me. Without that, I am nothing. Thanks for saving me, Father!