I look back on those words from one year ago and my heart just aches. I remember writing those words and how difficult it was to make our lives public, but knowing that it was what I was called to do. I don't know why I felt the need to chronicle this journey; all I know is that it must be done. I can't read the words from that post without tearing up and without the unimaginable pain in my heart returning.
One year later...
I still wake up at all hours of the night...but now it is to touch Addie, to listen to her breathe and to watch her as she sleeps.
Oh, how Addie is proving "them" wrong! We were told Addie would never "function as a normal child" - well, she is "functioning" just fine! She laughs, she cries, she eats, she speaks, she gives kisses, she can sit up and she lights up this world with her amazing smile! That sounds pretty "normal" to me! Yes, of course there are the delays...but I knew they would come. What my heart wasn't sure of those first few days and weeks was whether or not my daughter would ever know me. The night that we got the news from the first neurologist, Chris asked our pastor and dear friend to come over. I was in a remarkable state of grief and didn't know where else to turn. I remember a lot of what he said to me, but the words I remember the most are "she will know who you are...she will know your smell and your touch, if nothing else". I clung to those words and prayed for her to know me. GOD answered those prayers - "Mama" was the first word that my miracle baby spoke.
We were told Addie would suffer terrible seizures. There is not a day that passes that I don't pray to God that Addie remains seizure free. We are not "out of the woods" yet and I know that it is still a possibility.
We were told that Addie would have severe mental delay. This is the toughest part for me. Severe - I don't think that is in God's plan for Addie. What is in HIS plan is unknown, but my daughter can speak and smile and give me a kiss...I wouldn't classify her as "severe". The last thing that I asked the neurologist on that fateful day was if Addie would ever be able to attend public school. For whatever reason, that was what I had in my mind would make the difference in the news that we received for her - if she were well enough to attend school, then I could accept that...if not, then that would be something I would have to find a way to deal with. His answer to me, "absolutely not". I remember that I gave Addie a kiss and walked out of his office without another word. My world fell apart for the second time in eight days. What kind of future did that leave for Addie?
I can now tell people that Addie was born with Microcephaly. It's a word that I can now say without agony. It took months for that ability to come.
Our appointments are still plentiful, just not as often:
We are scheduled for another vision screening in April. I don't anticipate any problems, but feel the need to make sure. I thank God for Dr. Metz. He was an incredibly compassionate man in a time in which we really needed it.
Addie passed her last hearing screening with flying colors. We are due to go back next month for our six-month re-check.
Thankfully, we don't have another neurologist visit until July. This will be an extremely difficult time for us. Addie will have her eighteen-month MRI to see how her brain has developed. The thought of having to go through those emotions all over again makes me sick.
The geneticists...One of the geneticists is an incredible source of information and wants very much for us to be part of a "test group" which would create a blood test that would enable the detection of Microcephaly in utero. I have extremely mixed emotions about this. I'm not sure that I can be part of a test that allows women to abort their unborn babies because to them, they are less than perfect. I would have been told to abort had Addie's condition been detected early enough. I can not think about the what if's...I couldn't have done it. So, for now I keep cancelling the appointments the geneticists makes for us and they keep rescheduling...this time for March.
Dr. Dudgeon continues to be wonderful to us. I honestly can't look at him without those words from the first day running through my mind - “It’s not good, Jenn”. I will never forget the look on his face when those words came out of his mouth and I will never forget how he called us every day for a week to check on Addie. I wish I could forget the pain that is tied to him. I have thought on occasion of changing doctors, but I can't. When I chose him for Julien seven years ago, there was a reason and I think God will allow Dr. Dudgeon to care for Addie to the best of his ability.
The Bell Center was by far my saving grace for Addie. I am so thankful for the therapy that she receives each week, for the therapists that work so hard with her, for the amazing people who are now my closest friends and for the beautiful children that I am blessed to know.
I made the comment last year, "Over the last four weeks I have prayed for peace. I feel that it is coming". Peace has a way of settling in every so often, God is my constant comfort; knowing that there is a purpose for all of this. I look at Addie every day and my heart skips a beat. My unwavering love for her is immeasurable. She is so beautiful and so perfect to me - if to no one else.
Each day I continue to "prepare for the worst and hope for the best" and I'm finding new ways to prepare...just in case. I know that sounds like my hope for her has diminished, but it's the complete opposite - my hope is alive and strong and I KNOW that Addie will continue to beat the odds. She will grow and develop and prove "them" all wrong! My job is to push her to excel and love her more and more each day. I never knew that I could be so proud to be the Mother of a special needs baby...what ignorance I had. The joy that Addie provides to me is one that I never could have imagined.
The hundreds of prayers for Addie has turned to thousands...
All I ask from you is to please remember Addie in your daily prayers. Please do not falter from this. We made it through the first year, because of your prayers.
Thank GOD for Addie, for each milestone she has met, for each day that we have with her and for the many blessings that he has bestowed upon my family.
Our "Wait and See World" continues...this year will be a year of miracles and blessings - just wait and see!
Our "Wait and See World" one year prior