You learn to let it go

So our sweet little Caroline is six months old! Time is going by so quickly! Caroline is starting to show more of her personality by laughing and smiling quite often and is focusing on people and following them more! She is still working on holding her head up for longer periods of time and hasn't quite mastered rolling over yet. She can get her arm and torso turned but can't seem to lift that leg enough to roll. I know this isn't typical of a 6 month old but she is progressing at her own pace. We know that she will be delayed hitting her milestones but we are just happy she is progressing!

It's hard to believe that 6 months ago, we were sitting in the NICU with our sweet girl wondering what life would be like.  We sat by her side, not knowing what each day would bring or if she would make it....and just look at her now. We love having her home and being a family. She is such a good, happy baby and we are just so thankful for every day we get with her! She has changed our lives for the better!

So we are learning a lot as new parents. I feel we even get to learn a little bit more because of all the doctor appointments we have to go to with Caroline.  One thing I am slowly learning is that not all doctors are comfortable with treating Caroline or they may have doubts about her or us being her parents. We recently had a visit from a pediatrician who asked questions about our life which didn't seem to be relevant to the visit. It is frustrating because it almost seems that they are doubting us. To them, medicine/medical comes first. So when the doctor just nonchalantly asks if we are planning on getting a home health nurse...because I guess with full time working parents, we can't possibly take care of our daughter. It's frustrating. We are trying to give our daughter every possible thing she could need to be successful now and in the future. We go to several doctors because we want everything about her checked out and suggestions on how we can help. We are doing everything we can for her.

I am learning as a parent to let things go. I need to let the comments, questions, and stares just keep on moving and not let them get to me. I already carry around enough guilt with being a new mom, wondering if I am doing anything right....I surely don't need the guilt from strangers on whether I am a good mom or not. Jeremy and I have become quite the team and really work well with Caroline. We do all that we can for her and yes managing doctors and appointments would be easier if I didn't have to work, but I don't have that choice right now. I love my job and I love Caroline. We make it work as a family and that is all that should matter. Just because we have a special needs child, doesn't mean that we won't be able to handle what the future holds. Maybe some parents would freak out about all of these things and not be able to handle it, but not us. I am learning how to have more confidence in myself and letting other people know! One of Caroline's doctor, the child development doctor (who we love!) told us a couple months ago that we need to "go and do...take Caroline out as much as we can...she needs to see things and go places" and those words have stuck with me since then. I am getting better and more comfortable about taking her out and we just try to go and do as much as possible. I don't care if we are judged for taking her out..because to us, we are letting her experience all that she can..and to me, that is so important. We are doing the best we can.

I will tell you one thing....we would not be able to do all that we could without our friends and family! We are so lucky to have Jeremy's grandmother stay with Caroline while we work and am blessed to have family for backup anytime we need! We are also thankful for our friends who take us out and remind us to take care of ourselves too. Caroline has been such a blessing in our lives and I don't know what we would do without her. I really can't even picture a life without her!

Six months old already!

Finally an update!

I can't believe that it has been almost two months since I last updated! Wow has life been moving in fast forward and I can't believe it! A lot has happened since our last update- Let's see,  our sweet Caroline just turned five months last week and is growing like a weed! We love the chubby legs and her personality which is starting to show so much! I have had bronchitis (in which I think I have again). We have seen the Urologist at UVA and were told that we would have to eventually cath Caroline, probably within the next year. We knew that was likely for us but we had that slight hope she would be different and not need it. So that was hard news to take but know it will be good for her as she had her first UTI three weeks ago. We have also had her eyes checked (which were good!) and have switched pediatricians (finally) and have found one we really like so have been very thankful for that!  A lot of good and positive things have happened in which we have been moving in the right direction!

I am almost done with the school year, (18 days left!!) but we have SOLs this week. This is the craziest, busiest week for everyone at school and will be glad when it is over.  I know my kids have worked hard this year and even though I was out on maternity leave, I know that they will do great! I am excited to have time this summer with my sweet girl and get to be home with her! I feel she gets so big everyday when I get home from work. I want to be around to see all the little changes in her, especially while she is so young.

I did have a breakdown last week, which I considered to be pretty good since I hadn't had a major one since we were in the hospital with her 4 months ago! I knew that I would have hard days but still doesn't make things easier. I just get caught up in worrying about her future and stress myself out. I am thankful to have my husband who keeps me grounded. He told me, when I had asked what we would do if she had severe cognitive issues, "we will love her everyday, no matter what" -- man did my heart just melt when I heard that. Of course we are going to love her no matter what and that is what I need to focus on. My love for her will never change, no matter the situation that arises and I am thankful to have Jeremy as my husband and as a father to our sweet Caroline.

I follow a few posts on facebook that talk about Spina Bifida and ran across a particularly special post today. It was written by a mom who has an 18 month old son with SB and I could relate to so much to her words.  She talks about when she found out she would have a child with SB and says "How am I going to do this? You just do, you find strength you never thought existed within you and you fight for your child."  I know exactly what she means when she says you find strength you never knew you had. Some days I wonder how we will get through everything but you do. It becomes so much a part of your life that you just adapt. I know Caroline will have struggles but I see her as any other child in my eyes. I don't see disability. The mother also wrote, "I know there is always a chance he might need one or more surgeries down the road but worrying about the future does me no good. I would rather enjoy every step of our journey and create fun lasting memories." I would love to have that mentality of not focusing on the outcome of the future but just enjoying the here and the now.

I have to say though, that Caroline has taught us so much about appreciating all that we have and learning to see the best in every situation. We have been so thankful to be home and raise her.. (those 39 days in the NICU was exhausting, we are so very thankful to be home!), we are thankful for the love and support from our families, day in and day out, because we surely couldn't do it without them! We are thankful for Caroline's g-tube which allows us to feed her so she can grow big and strong, we are thankful for all the appointments she has because that means she is under the care of those that care and want her to succeed in all aspects of her life. We are thankful for the friendships we have and those friends that love our little family and support us in so many ways! We are trying to see the good in everything that comes our way, even if it is something small. I know that Jeremy and I will be able to handle whatever comes our way. I am so incredibly thankful for my little family and this journey we are on together!