When Larkin was diagnosed with Down syndrome that was one challenge that we could meet because there is so much information from parents and families. I have heard and read horror stories about doctors delivering the news of Trisomy 21 to parents with such sadness or callous disregard for all that individuals with Down syndrome can achieve in life. Our doctors on the other hand were amazing. Even when we were going thru infertility treatments our Reproductive Endocrinologist and nurses encouraged us to carry our child (should we be lucky enough to conceive) if there was a prenatal diagnoses of Down syndrome or other issues. Our doctors were supportive and loving. In fact it was Dr Hill our Pediatrician who sat me down when Larkin was a few weeks old and said the best thing a mother could ever hear “Amy she’s a baby, enjoy your baby and stop worrying about all the other stuff”.
I sought out help online and that was a mistake because the internet and the general public are filled with misinformation about our children. I searched for a network online and found an amazing forum filled with parents who told me it would be OK, that my child would prove to be a blessing, and that my life would increase in value because of Larkin. It took a long time to feel the truth of their words but it did come.
And then seizures hit. The rug was pulled out from under us in the spring of 2006 and again in the fall of 2007 with such great force that I truly felt we would never fully recover or gain the strength to move forward. This time the journey was different because there was no forum to turn to. No parents who could help me brace the fall with words of “OK”. There is one forum but it was filled with negativity and dismal outcomes, plus parents who are dealing with our type of issues are so immersed in the care, medications, treatments, and life/death health crisis to deal with – so parents don’t have time to be online and cheer others on.
For me it was very important to change that. I wanted other parents who were in crisis to be able to reach me if they so desired. To hear from another parent; yes it’s hard, yes it’s a life long journey, yes you will feel defeated, BUT yes you will find a way, yes you will enjoy your child again, and yes you will recover and find the strength to move forward. I started this blog at first as a way to combat rumors and get facts straight as to how our family was doing. Whispers and gossip can abound when you go through something this horrific so I opened up my life and poured my grief out. I exposed my wounds and bled all over everyone who wanted to read it. What ended happening was I healed through writing and moving forward was so much easier when I felt a purpose in helping others. I also quickly learned that I had friends and cheerleaders in our community who truly cared and wanted our little girl to triumph! For that I will be forever grateful.
Right now I talk with about 6-7 families who are at the beginning of this road. One way or another they end up with my phone number or I theirs and the bond begins. Hearing another persons voice who has been there is like having a hug over the phone as the first thing I say after hello is “I want you to take a deep breath and relax your shoulders from around your ears back below your neck” and it always brings a laugh. A few months into seizure land I realized that I always had my shoulders tensed up waiting for the next blow and I held my breath a lot. There hasn’t been a parent yet that doesn’t immediately understand my opening line. I urge some to begin drugs that are terrifying, others I encourage to begin the Ketogenic diet, and with everyone I remind them this is a long road and they won’t cure their child but there is a light at the end of the tunnel.
I share pictures of Larkin when she was first diagnosed, a child gone. A child lost to seizures without smiles, no voice, no noise, no eye contact, and no affection. Nothing. Pictures of a child whose body showed the effects of a drug I injected into her 2x daily. Pictures of a 4 year journey of hope as I take them into her smiling, the spark of life returning to her eyes, her little body slowing returning to appropriate size, a child coming back to her parents. All to give a lifeline to those who feel the anguish in their soul from this terribly dark time.
Yesterday I found a blog that a mother has started writing to help her family and friends understand their child’s health issues. I saw myself in her words. The terror, drugs, doctors, hospitals, and everything else that comes with this diagnosis. It teleported me back to those harsh days and nights where I thought like Hezekiah “In the prime of my life must I go through the gates of death and be robbed of the rest of my years” and my chest grew tight and I remembered my grief and sobbed as I am so very grateful for where we are today.
It is why the scripture in Isaiah 38 from the King of Judah speaks volumes to me.
Isaiah 38:14-17 I cried like a swift or thrush, I moaned like a mourning dove. My eyes grew weak as I looked to the heavens. I am troubled; O Lord, come to my aid! 15 But what can I say? He has spoken to me, and he himself has done this. I will walk humbly all my years because of this anguish of my soul. 16Lord, by such things men live; and my spirit finds life in them too. You restored me to health and let me live.17 Surely it was for my benefit that I suffered such anguish. In your love you kept me from the pit of destruction; you have put all my sins behind your back.
What can I say? To use Hezekiah’s words. What can I say? It truly was to my benefit that I suffered such anguish, as it has been God’s love that kept me from the pit of destruction. God’s love that kept me going. God’s love and my faith when I cried and moaned like a mourning dove, which kept me moving forward to do anything to help this little girl.
As 2009 comes to a close and we welcomed 2 new babies who are currently healthy, the lessons learned over the past years are not lost and frankly are never far from our thoughts. To live our lives like Christ and reach out to others where and when we can to help those who are suffering in anguish. To extend a hand or in most cases a listening ear and a voice of compassion and hope.
Happy New Year and
May God give you…
For every storm, a rainbow,
For every tear, a smile,
For every care, a promise,
And a blessing in each trial.
For every problem life sends,
A faithful friend to share,
For every sigh, a sweet song,
And an answer for each prayer.