A New Year...

I took a few minutes to look back on the carepage messages at our lives just one year ago. It is nothing short of a miracle how far we’ve come in such a short amount of time. I can say that knowing that we still have a long journey ahead of us but feel comforted knowing that I see God’s work everyday in my life and the life of my children. I know too that this is a journey – not an event – not a marathon or a relay. It requires endurance, a well articulated plan, and patience. A LOT of patience. I’ve been working on my patience this holiday and something I pray for everyday. Not just the daily patience I need to be a good mom but the patience it takes to handle three kids under 5 and the patience to get through all of their different hurdles. I pray for the patience that it will take to handle the answers to the questions I yearn for – “what if Mia never walks”, “what disabilities will she face”, “how will I handle those disabilities”, “what will her life be like”, “what will my life be like”…

Sometime this is easy – I need patience to answer questions from strangers and even friends and family when someone asks if Mia is walking. No she isn’t. I need the patience with family when people do not know that her shunt is permanent – yes, forever. Questions like how are they doing? Fine, but fine really doesn’t sum up all they’ve been through. It is really a typical question but one that usually gets a typical answer. My children are not typical. Or comments like boy your kids are so small – yes they are…and by the way they were all born that way and even close to not being with us at all. I really do understand that these are things not meant to harm or hurt but they do. Don’t be scared to ask about my girls but also know that with any parent of a child with special needs or parents of children that are different, that even the most normal question or comments shakes them. We are always out of our comfort zone even when we are around people who love and care for us. I don’t mean to be so sensitive – I wish I weren’t.

I need the patience to understand I do not have all the answers for my children. A luxury I think some parents have – even though who really knows these things. It isn’t easy for me to think I can’t solve some of these problems for them/ for my family but I think that is one of the most valuable parenting lessons I’ve learned in the last year. I don’t have to have all of the answers… Another lesson I’ve learned is that my children are not necessarily a direct reflection on my parenting. They are who they are – no matter how good of a parent I might be. Mia will walk when she walks, if she walks, no matter how much I might want her to and no matter how much we might practice. God’s will, not mine. Emma and Lily will have their own struggles and what will teach them about these is going through that experience, not just about the lesson I might teach them. Mia got her glasses the other day and although we haven’t wore them much I have really likened all of difficulties to these glasses. Its funny really – I can‘t correct her eyes no matter what I do. That is how God made her. I know that. Her eyes are just something that she’ll need help with and I’m okay with that. When I think about her legs, her walking, her mind, her abilities, if I can just use her glasses as my “vision” to her see her disabilities as just things that need extra support then I wouldn’t worry so much about what I am doing wrong but that she is getting everything she needs - from me and everywhere else.

We struggle with all of the unknowns but find strength in all of us as a family. We get through it together. I must admit J that I am not always the most pleasant mother- wife – but my family loves me anyway. Craig still loves me after all we’ve been through. I’m not sure many relationships would have stayed as in tact. We’ve struggled but we’ve also been there for one another through it all. There are times when I might say or feel otherwise but this past year really has been wonderful for us as a family and as a couple.

Thank you for your wonderful Christmas greetings and how great it is to get together with all of our friends and family over the holidays. We don’t get to see everyone often but love being able to spend time with the people that mean the most to us! We look forward to wonderful beginning to a New Year – and hope we’ll get to see everyone more and more as the year goes on! So many wonderful things happening this year – I can not wait to see and experience all of the exciting things ahead for us.

God’s blessing to all of you for a wonderful year filled with incredible moments and lasting memories. Prayers for strength – health – and happiness. Amen.

Love you all ~ Sarah

Halloween 2007

There are some things that are challenging for me to put in to words. And although some people might see that in me as a strength it really is one of those feelings that you just can not describe. A truth/ strength/ struggle/ reality of mine is that Craig and I both work. We love our jobs but we are not at home during the day to parent. Our jobs at home are sometimes much more difficult than our work environments but nonetheless we truly do miss some of the experiences we would otherwise normally have. However, I have found through that hardship what is one of the few treasures on this earth that makes putting in to words unspeakable. Shannon. I’m not sure if many of you know Shannon and if you don’t than I hope to share a little about her so that you will have an idea of what blesses my family’s life each and every day. I met Shannon while she was younger, as she grew up with my younger sister Ashley. She was like a sister of sorts – hanging out at our house even when Ashley wasn’t home or on the other end of the phone just to see how we all were. I, in a sense, watched her grow up. She helped our family through difficult times and I would hope to think that we did the same as she faced some of her own struggles and grief. While I am sure that some of her memories may not always be good ones I can certainly say that mine are filled with a great smile. As families move and grow, and as Craig and I had a family of our own, we lost touch as we find happens after high school ends and as new chapters begin in life.This past summer though, as the twins were born, we found Shannon again. Craig and I knew that daycare was not an option and neither was a stay-at-home career. We also knew that as we were faced with this challenge, and besides the ones that we were experiencing over and over every day while we were in the NICU, that our greatest effort needed to be focused on this important quest – providing our children with great care while we could not be there physically to care for them. I know it might sound cliché to say but Shannon really did just walk back in to our lives – unyielding to anything that we asked and graciously accepting all that becoming our nanny consisted of. At first it was just Emma as I went back to work and spent my days at the NICU. As hard as it used to be leaving Emma when it was just Emma – this really wasn’t hard in comparison as it had been even just months before. We knew caring for all of our girls was important – to be there – and we knew that with Shannon at home that we didn’t have to worry. As all of you have known or from reading our carepage we faced a few struggles as we brought the twins home. Not just with managing the needs of two infants but with providing for their many medical needs as well. I am not sure if any other person could have or would have done anything close to what it was I was asking this young woman to do. To put it at best I was not just asking her to care for three kids under four years of age but asking her to do that while feeding one through a feeding tube, monitoring shunt sizes and head pressure(through her soft spot), always making a medical assessment on anything from fevers and vomiting to sleep patterns and diaper changes. I wasn’t just asking her for her time but really for her care. I was completely reliant on her for this but what I got was much more. She gave them and me love.
Shannon is, as you can see in our pictures, a beautiful person – inside and out. She has become my rock – my dependable – as our lives were and are faced with a lot of uncertainty. And while our families and friends provide us with a lot of support, Shannon is there everyday. Everyday to love and care for my children. Any time you ask someone to do that for you you depart with some confusion. Guilt – uneasiness – pain – sadness. I am not saying that some of those still aren’t there because as a mother I am not sure if I can escape it but I can say that I have discovered a new way to be a mom and love my kids. It isn’t about the love that they get only from their parents but a collection of love that they receive every minute of every day. I know that my kids are amazingly fortunate. Each day I leave my house with lots of kisses and hugs but also a lot of smiles and happy children. To me nothing could be better than that. I hope that one day she realizes the true gifts she has given to me and someday I hope to repay her for it. I have learned a lot through my journey with the twins but I have also come to the realization that Shannon teaches me daily about personal patience, selflessness, and an endearing attitude through her own beliefs and responsibilities. Shannon has a commitment that goes well beyond feedings and nap times, but medicines, appointments, special needs, etc. It was and is a commitment that comes from the heart and encompasses a profound love. That same love we have for her, an unwavering and unconditional love. She is a true extension of our family. I hope that others come to know this same unspeakable love and compassion that we have experienced for our children. I hope too that you recognize the blessings that God has given us in our lives everyday. I am not sure that I can remember a time when I have been more happy. Thank you Shannon for being there at the times when I’ve needed you the most and all of the other times in between. We love you!