So here I am sitting not really wanting to write but I’m going to in hopes that it will help me feel better once I get it out. Let me first start out by stating that I am so thankful for Twink and I love with ALL of my being. I would be lost without her.
I am frustrated, angry, scared, sad, tired and just feeling down right now. I want to scream enough some days. Are we the only ones who are going through all of these problems? Doesn’t anyone else have problems once they come home from China? No one talks about it and to be honest, it feels pretty lonely. I refuse to brush things under the carpet because if I can help someone at some point than I will!
I am frustrated that Twink is not progressing as fast as “everyone” said she would. I just wish everyone would keep their assumptions to themselves. Please don’t make things fluffy for me; I do better with the raw truth. I can take it in and process it better that way. I am a nurse after all and I can’t stand doctors who sugar coat things! I am frustrated that people seem to think I know the answers that only the Lord knows. Questions as to whether she’ll be able to hear or talk. HOW THE HECK DO I KNOW!! I get so frustrated with the sensory issues. Holy if you’ve never had the joy of a child with sensory issues, count your blessings!
I’m angry that this little girl has not had a break from the doctors since we’ve been home. We’ve been to the doctors at least every other week since we’ve been home from China. We are still not done with appointments yet. We’ll be home 6 months on June 19th. I did know going into this adoption that there would be many appointments but never in my wildest dream did I think we’d have this many. Then again, we thought she had something completely different wrong with her. No fault to China, it was just how things worked out. It was what the Lord had planned.
I’m scared! I don’t know what my girl will be able to do and what she will not be able to do. Talking to her therapist about her hearing test and she said there is a very good chance that Twink has major hearing damage on her right side. Thing is that didn’t bother me. The thing that bothered me is if she does use sign language at this time she does not have the ability to use her right hand. Her therapist said that could cause her problems later. I worry when she runs a fever that she will have a seizure and we are not even sure it was a febrile seizure. Sure would be nice if we would hear back from the neurologist for an appointment!
I’m just sad, sad that she has to go through this.
I’m tired of going to the doctors but thankful that she has some awesome doctors taking care of her! Honestly, how much more does Twink need to go through?
I am so happy for those of you whose children are doing well, I don’t wish anything but good for them, honestly! I just don’t hear of anyone who really has any problems. Everyone comes home and all is peachy. So if your one of those who is or who has had problems let me know I’m not alone. (I like to hear from all you who are doing well too ;) )
Would I do it all over again - ABSOLUTELY! Would I do a special needs adoptions again if given the chance - ABSOLUTELY!
Oh honey, you and I need to chat!! Seriously!!! We didn't have the hard medical road but we had an extreme emotional road with Cana.
ReplyDeleteEmail me with your phone number and a good time to chat. You are NOT alone. I have yet to meet a family home from China that hasn't struggled...unfortunately some keep it to themselves.
It was HARD...REALY HARD...REALLY, REALLY HARD the first 7 months home and she still has occasional meltdown episodes.
I am praying for you...it will get better...I promise! Hugs, stacy
Cheri,
ReplyDeleteWe averaged 2 appointments a week for the first 6 months home. We had spinal cord surgery 4 months home and somewhere in the first four months we found out she has a genetic disorder, that if not closely monitored will cause her to go blind. Thankfully they caught it, and she will be monitored by a pediatric retinologist( who knew there was one of those!) for YEARS every 6 months. And there is additional anesthesia because they have to put her to sleep at the hospital to see all her retina...
We *thought* she would need VEPTR but now that is our reality. She will need surgery every 4-6 months FOR THE NEXT 15 YEARS! Skin coverage,infection and rod migration are huge issues....
And on top of all that, we have made the difficult decision to have her surgeries in PA at Shriners and we live in GA. So we have to add travel to the mix. They are state of the art, and we know she will get the best care there but I am terrified to travel post surgical.
I'm with you girl. I would NEVER change a thing. I love my sweet girl so much, but we have a really hard road ahead. And I am scared.
I'm here, I understand. I'm walking a similar road.
{hug} You know how things are with us, and I'm working on a post about some of that (which you know). {HUG}
ReplyDeleteCheri,
ReplyDeleteWe will be thinking and praying for you. Even though we have not met, I feel a connection to you and to Carla B. A great sensory book that I am reading is called "The Out of Sync Child" by Carol Stock Kranowitz. It is a great book. I really feel that Meredith has some HUGE sensory issues and this book will help me with those. Also getting her evaluated by a OT that specializes in SPD. Email me and I can give you some great websites and checklists about SPD. We have been struggling, but yet I haven't written on our blog about it. I have mixed emotions about writing about it.
Love-
Ceci
Hugs hugs hugs hugs hugs!!!!!!!!!!
ReplyDeleteAnd in regards to hearing, there is a HUGE amount that can be done with today's technology so that she does not have to use ASL as her primary language (unless that is what you decide of course). So you can talk to a good audiologist about that too. But later. After you are settled and things feel more under control.
Cheri,
ReplyDeleteYou are so NOT alone, so many aspects of adopting have been hard, but when I sit down to write it always seems like the positive stuff outweighs the tough and I seem to concentrate on that. But, yes we have some sensory issues not to the point of overwhelming except when it comes to eating-AHHH! But one thing we do have is a very strong-willed, and independent little thing. This has been the most challenging for Jay and I. Our son Ethan is such a pleaser, we would tell him no once and he would never try that again. That does not quite work with our Sha Sha, sometimes I feel like I am about to pull my hair out. But then I remind myself of all this little girl has been through and still has to go through, so much more than so many of us. I have noticed many ups and downs in our 7 months home. Some weeks are wonderful, I see the progress, other weeks not so good, but I just try to keep praying and holding on, which I know you do to. Just know you are not alone and are so allowed to VENT-we all need to sometimes. Keep up your hard work, you are doing great at the hardest job in the world being a mom!!
Love ya,
Carla L.
i just wanted to tell you that I love you and when I say that I MEAN IT. I dont throw that word around unless I mean it. Im not going to try and give yo advice because I dont know what its like to be in your situation. All I know is that it has got to be tough. Just stay close to the Lord and he'll get you through this. You are in my thoughts and prayers.
ReplyDeleteYou are definitley not alone. We've been home coming up on a year now and still average a doctor's visit per week. Granted Anna was a waiting child to start with, but her needs have ended up being much more involved than anyone thought.
ReplyDeleteOur life is much different than I ever pictured, but I wouldn't trade my daughter for anything. It really irks me when I see people announce that they switched to the SN or waiting child route and were referred a child with such a minor special need, and it ends up being what my daughter was originally referrred for. People really need to do their research, what appears to be minor is not always so.
Julie Anne
You know, it's okay to be scared. It's okay to feel overwhelmed, mad, and everything else. I can't even begin to know what you are going through. I only know that you have many friends, just reach out. You and your family are so brave and so inspiring. We don't leave until the 10th so if you want you can email me your number.
ReplyDeleteHugs,
Carla
Oh Cheri- I so feel your pain. We were the host family for an AWAA seminar this past weekend and I wanted to scream "ITS SOOO HARD!!!"
ReplyDeleteThere are times when my anger and frustration with Mei Mei stun me. But I understand you also because of Sam, my oldest. He is 7 and has severe learning disabilities. One piece of comfort for you is that at 2 their little brains are still developing and you simply can't get a good idea of what is going on until she is 5,6 or 7. They can make amazing leaps in development.
I am attending a home school conference in July and the first session I am attending is for Special Needs parents. Its entitled "Anger and Depression in parents of Special Needs kids."
What you are feeling is NORMAL!!!
Cheri~
ReplyDeleteSending a big hug your way. You are doing a wonderful job with Lia, and trying to do everything possible to give her a healthier life...Trust in God knowing he will lift you up when you don't feel like you can stand anymore. I have no idea what the future holds for us and Lucy, but like you, have to trust that she is God's plan for our family.
Cheri,
ReplyDeleteI may not know what you are going through, but I do know that you are not alone.
I will keep you in my prayers.
Blessing to you from another AWAA family.
Regina