Tuesday, January 18, 2011

Life as we know it...

I am back. I have taken a few weeks off from the blog not only because things got crazy around the holidays, but because our life as we know it now... is CRAZY. There are not words to describe how we have felt the last few months upon Lincoln's arrival home. I have had happy moments, sad moments, moments of absolute despair and times when I have felt downright depressed. I have been in complete survival mode, just trying to make it through the days. I do not say this to be dramatic or to make anyone feel sorry for me, but mostly because I want to be real. The real solid truth is no matter how strong I thought I was- this is HARD and I am barely making it. I try so hard to look for the good, and some days the only thing good is that we are all still breathing.

I have been battling mentally for quite some time between wanting things to be different and trying to accept and be grateful for my life as it now stands. I guess I am dealing with and mourning for the dream of how I thought being a mom would be. It is anything but what I had imagined. I had pictured snuggling and feeding and singing to my child and having him feel comforted in my embrace. What reality has given us is a child in pain most of the time, that is not comforted by feeding or snuggling or singing. He has had such a hard road and it is all I can do to not just sit and cry with him as he endures so much pain.

All that aside, he is such a good, sweet boy under all of the issues he has to deal with. He is making progress and each day brings something new. He is now discovering his hands and chews on them and stares at them, and he kicks his one leg so energetically when he is happy and excited. It is soooo cute. Today was a really good day and I actually felt happy again. I felt renewed, like I could handle the load I have been called to bear for now. Dave is so busy with school  (and doing very well) which leaves most of the weight of the days on my shoulders. We have 3-4 doctor appointments most days, which leaves little down time for snuggles and playing. Today was awesome though- we managed to have 2 appointments and fit in our playing and snuggles AND there was not as much fussing and boy was it soooo nice.

Good news from the retinologists- his eyes are improving and there is no need for laser surgery for now. The plastic surgeon looked at Lincoln's leg last Friday and said in about 2 weeks we will be able to schedule his skin grafts! Yeah. That will take a huge load off and will help Lincoln to be more comfortable we are hoping.

As far as feeding, he needs to get bigger and stronger and hopefully in time his suck and coordination will improve so that he can take a bottle and not get so upset. The speech pathologists seem to think he will get it eventually. I think he will too. He tried carrots today on his binkie and I think he was OK with them. :)

He is so stinking cute and weighed in last week at the docs at 10 lbs. He is maturing and his face is looking more round everyday. We went to Hanger prosthetics yesterday and he was fitted for a helmet that he will wear for 4-6 months to help get his head shape back to normal. 4 months in the NICU in the same position caused his head to be a little flat on one side.

He is making progress and I have come to the reality that this is all I can ask for. Progression needs to be my focus instead of the end destination. It is going to take a lot of time and hard work and patience to get to where we need to be and that is OK. It has to be OK. It will be OK. I know that God is with us, and never gives us anything that we are unable to handle. I am praying for the strength and the tools to be sent to me daily to keep going. Lincoln is what keeps me going. The fact that he is alive and well and is fighting everyday to be here makes it all worth it. His smiles make it worth it. He knows he is going to have an awesome life and I keep reminding myself of that too. He is one precious little dude! We love you all- thanks for your prayers, they are being answered!


The Andersens said...

If it makes you feel any better new babies are never the snuggles and fun you imagine even without the added difficulties. I admire you your strength , courage , love , devotion and surmounting ability. You are an amazing mother and have conquered more in these months than most do in a lifetime. Keep it up. I love you. You're amazing.

Aramelle said...

Awww, look at those sweet, chubby cheeks! Your little man is so, so cute!

I agree that bringing home a new baby is quite different from what one imagines, even in the "best" of circumstances. I know that the added struggles have got to make it even more difficult. I admire you both so much for the strength you've shown in the past few months. And I admire you for being honest here. It's important to have a safe place to speak what's on your heart.

Kirsty said...

You are such an inspiration to me Kim. You guys are all very much in our prayers. Keep on keeping on. You are awesome. xoxoxo (He is sooooo cute!!!)

Melissa said...

I wish I had the right words to say to lift your spirit, but all I can think to say is that I admire the strength your family has going through this difficult time.

I know it has to be so hard to not be able to always comfort your baby when he is hurting. Reading that was heart wrenching, but I do believe that soon it will be so much better.

It is an inspiration to see y'all smile and move forward. You are doing a great job and I know that Little Lincoln came to you for a very special reason.

I hope he feels better soon and that the skin grafts will help. :)

Becky said...

I loved catching up on your posts and seeing the pictures of you being a family at home. I am happy to hear of his progress and yet sad that he has so much pain.

You are just the parents he needed! When you are feeling low, lean on your family, friends and Heavenly Father ... there isnt a better support team!

Becky Goodrich

Apryl said...

You are doing such an amazing job. You are great. We love you!