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
Addendum A
Addendum B
Lost some "Mom Points" today
Addie had a bit of a rough night last night and cried all the way to school this morning. It wasn't until we were about to give Addie to her teacher that Chris noticed her right ear was draining. Yep, I missed it. So, now both of Addies' ear's are draining! Luckily, I had an extra bottle of Tylenol and Ciprodex in my bag and I was able to "doctor" her up before I left. Wow...so how many Mom points did I lose for that one? I felt just terrible...
The Mercedes Marathon - two weeks to go!
We are down to two weeks before the marathon! You still have time to make those last minute donations!
Bergen's First Birthday Party!
We were thrilled to join in the celebration for Bergen's First Birthday Party at the zoo today! We had a really great time! Addie really enjoyed watching all the animals that were brought in for the party.... up until the snake came in and we had to scoot over to the back of the room.... yuck! Although it was so cold outside, we took Addie for her first ride on the carousel and she didn't really know what to think about it. She loved watching the "animals", but once we started moving, she got a little upset so I had to hold her the rest of the time. Our "mystery illness" presented itself right before we got on the carousel.... Addie has another ear infection. So much for her catching a break. Right when I think we're getting one thing cleared up, here comes another! Thanks to Motrin and Floxin, Addie was able to relax and enjoy the rest of the day. In spite of that, we wouldn't have missed Bergen's party for anything! She is very special to us and we are so glad the party was so much fun for everybody!
Miserable baby girl
Addie has had a REALLY tough week. She is recovering from another URI and has been truly miserable! Addie never cries and tonight she was just so sad. I tried everything; including letting her play with my beautiful flowers and the ONLY thing that stopped her from crying was seeing the camera! Right before these pictures were taken, she was so upset but when she saw the camera she smiled, Chris took the picture and then she started crying again! She's funny even when she's miserable!
Another milestone met...
Praise be to the LORD our God!
Guess what my miracle baby can do now? She can give kisses and LOTS of them! "Giving affection" is a milestone and she has this one down pat! All we have to do is ask Addie for a kiss and she leans in and gives us a kiss! She has even started trying to give us a kiss without prompting and then she will lay her head down on our chest. I think this is absolutely amazing! This simple act proves to me that Addie understands what is said to her and is responding accurately! We just had Addie's speech evaluation and there were so many questions that I answered "no" to and it was so painful to have to confront her delays, but then God gives me this new blessing and reminds me that He will continue to show us all his miraculous powers!
Please say a prayer and thank God for this blessing!
Guess what my miracle baby can do now? She can give kisses and LOTS of them! "Giving affection" is a milestone and she has this one down pat! All we have to do is ask Addie for a kiss and she leans in and gives us a kiss! She has even started trying to give us a kiss without prompting and then she will lay her head down on our chest. I think this is absolutely amazing! This simple act proves to me that Addie understands what is said to her and is responding accurately! We just had Addie's speech evaluation and there were so many questions that I answered "no" to and it was so painful to have to confront her delays, but then God gives me this new blessing and reminds me that He will continue to show us all his miraculous powers!
Please say a prayer and thank God for this blessing!
Grief
Grief is a tricky emotion. You know, "they" say there are five stages to grief:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance
Whoever came up with this obviously never experienced true grief or either I fail to meet their psychological profile because I missed out on three of those stages. Grief isn't something that can be charted or outlined or compiled into stages, it is just an emotion that can either consume you or motivate you or in my case, can do both. To someone looking in on our situation, there is no way to make you understand our emotions or how we manage to function. It's something that you cannot assign words to and is certainly something you wish no one else ever truly knows. I was talking to someone about Addie just recently and I mentioned how the grief can be so consuming at times and they were surprised that I was grieving. I knew then, that I once again had failed to educate people. I in no way want to seem ungrateful for ANYTHING, but what needs to be understood is that when a child with special needs is born, it's a life-changing event. In my case, it changed my life for the better, but still brought with it an unimaginable amount of grief. The grief isn't for me or what I "lost", the grief is for the battles that my beautiful daughter will have to fight for the rest of her life. The grief is for the pain that she will endure, for the daily struggles to do everything that we take for granted and for the emotional pain that accompanies being different. The grief changed who I was, it made me a better fighter, a better Mother, brought me closer to God and yet alienated me from others who don't understand. So, the next time you have a conversation with a parent of a special needs child, remember their grief. It's not an emotion that is always visible, but IS always present. I am here to answer questions about Addie and to educate you on whatever you feel like you may not understand. Please do not hesitate to ask me questions.
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance
Whoever came up with this obviously never experienced true grief or either I fail to meet their psychological profile because I missed out on three of those stages. Grief isn't something that can be charted or outlined or compiled into stages, it is just an emotion that can either consume you or motivate you or in my case, can do both. To someone looking in on our situation, there is no way to make you understand our emotions or how we manage to function. It's something that you cannot assign words to and is certainly something you wish no one else ever truly knows. I was talking to someone about Addie just recently and I mentioned how the grief can be so consuming at times and they were surprised that I was grieving. I knew then, that I once again had failed to educate people. I in no way want to seem ungrateful for ANYTHING, but what needs to be understood is that when a child with special needs is born, it's a life-changing event. In my case, it changed my life for the better, but still brought with it an unimaginable amount of grief. The grief isn't for me or what I "lost", the grief is for the battles that my beautiful daughter will have to fight for the rest of her life. The grief is for the pain that she will endure, for the daily struggles to do everything that we take for granted and for the emotional pain that accompanies being different. The grief changed who I was, it made me a better fighter, a better Mother, brought me closer to God and yet alienated me from others who don't understand. So, the next time you have a conversation with a parent of a special needs child, remember their grief. It's not an emotion that is always visible, but IS always present. I am here to answer questions about Addie and to educate you on whatever you feel like you may not understand. Please do not hesitate to ask me questions.
Thanks Julien!
While I was busy making lunch, Julien decided Addie needed a nap. She fell asleep in his arms just like he has been begging her to do! What a GREAT big brother!
House for sale!
Ah, how picturesque...this beautiful home is just waiting for you! Snuggled in the breathtaking snowcapped mountains of...Alabama? Yes, that's right - Alabama! Fine...there's no mountains, but you have to go up a hill to get to the house! Who wouldn't enjoy the convenience of hopping into your car and being at the beach or the mountains in a matter of a few mind-numbing hours! Oh come on! This house is awesome, you will feel at home the moment you walk through the door! It is a buyers market, you know!
Snow day fun
Addie is enjoying the opportunity to destroy the house today! For extra fun, I filled a little tub with bubble bath and let her play with her animals this morning!
She has had a rough time since yesterday! Daycare called yesterday and asked me to come because Addie wouldn't stop crying. I stayed with her for a while, gave her some Tylenol and helped ease her back into the routine before I left. Her day didn't get much better and last night was tough as well...I think mean tooth number nine is trying to make an entrance. Addie has a low grade fever, so I'm limiting her snow day fun!
She has had a rough time since yesterday! Daycare called yesterday and asked me to come because Addie wouldn't stop crying. I stayed with her for a while, gave her some Tylenol and helped ease her back into the routine before I left. Her day didn't get much better and last night was tough as well...I think mean tooth number nine is trying to make an entrance. Addie has a low grade fever, so I'm limiting her snow day fun!
New class at school!
Today was Addie's first day in her new class at school! This was a big day for us because she got to move to the next class with her friends!
Addie did very well and seems to love her new teachers - Donna and Raquel.
Last week while I was talking with Donna about Addie, I told her how important it was to incorporate sign language into her new routine. When we came in today, Donna showed me a list of signs that she had learned over the past weekend. She even had her husband quiz her on the signs to make sure she was doing them correctly! I was VERY impressed that she had taken her personal time to prepare for Addie. Both teachers have went above and beyond to make Addie feel welcome in her new class - I just know she is going to do great!
Addie did very well and seems to love her new teachers - Donna and Raquel.
Last week while I was talking with Donna about Addie, I told her how important it was to incorporate sign language into her new routine. When we came in today, Donna showed me a list of signs that she had learned over the past weekend. She even had her husband quiz her on the signs to make sure she was doing them correctly! I was VERY impressed that she had taken her personal time to prepare for Addie. Both teachers have went above and beyond to make Addie feel welcome in her new class - I just know she is going to do great!
Sweet, sweet pictures!
These pictures are very sentimental to me...my precious daughter, words can never describe my love for her.
Special meaning
This picture is very special because in the last few weeks, Addie has started laying her head down against me when I give her a hug. That was something that I missed so much with having a baby. I think before, it was just awkward or uncomfortable for her.
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