[Non] Expectations

Coming to Terms

What I have learned through this ordeal of coming to terms with a child who will be born in need of extra special care and love, is that it is a process. I cannot even begin to describe the agony, pain, and terror we have felt the last two weeks. I have cried, grieved, mourned, smiled, laughed, and most of all dreamed.  My husband and I have accepted that she will be in need of open-heart surgery when she is born, and really try to stay away from the thought that we will only have a few minutes with her upon birth to enjoy seeing her, smelling her, hearing her, kissing her, and holding her – before she is wheeled to the NICU. I guess as I get closer to delivery this reality will need to be accepted, but right now we feel it is a one-step-at-a-time process, we are trying not to overwhelm ourselves, which is really, really easy to do.

Find support

Other parents of TA kids and TA kids themselves have provided us with tremendous support we can’t thank them enough for their encouragement and for keeping it all real. We have joined several really great support groups that have not only provided support, but reality – it has prepared us for the long, hard journey we are about to face – but they inspire us to know her life and our lives will be great:

Truncus Arteriosus Kids: https://www.facebook.com/#!/groups/74129260045/

Broken Hearts: https://www.facebook.com/#!/BrokenHeartsFL

Mended Little Hearts: https://www.facebook.com/#!/pages/Mended-Little-Hearts-National-Organization/377812750472

Our Truncus Arteriosus Kids: http://groups.yahoo.com/group/ourtruncusarteriosuskids/

Prepare

I have officially set Cael’s bedroom up to be a one stop shop and have stocked it full of all the fun stuff he loves (he has enjoyed two rooms before the news of a new addition). No more separate toy room for you! Next we will begin to take all of the baby items we have received and purchased, and begin the process of setting up Ryleigh’s room. When I think about seeing her room set up, but empty I mourn, I can’t explain it, but it makes me sad. I need to feel these emotions as with each tear that I cry, I am becoming stronger.

Expect Disappointment, but Find Hope

I need to say that I admire my husband, he is an amazing man and I really can’t imagine going through this process with anyone else. I have seen him reduced to tears, but yet still so strong. We are becoming stronger together and the advice we have received is this has to happen to get through this ordeal. We have had major upsets and disappointments this last week, and I can only share that family has been one of the biggest disappointments and some of the best supporters. At this point, we are moving on and letting go as our focus needs to be on what is going to directly affect our lives and our son’s life. It is about us and it has to be that way. I am not surprised how ugly people can be, only surprised that the time they chose to display it, is a time of despair and turmoil, kicking us while we are down is inexcusable. Several other TA moms have shared that family hurt them the most because as we are hurting, we expect so much more out of our support system.  We expect them to be there and not be selfish, but the reality is we can’t change people and it is better to cut the negative people out than to try and make them supportive. We have also found tremendous support in other family members and friends when they know there is a gap in our support system, for that we can’t thank you enough and you know who you all are!

A loved one recently told me that my husband, myself, Ryleigh, and Cael are not losing anything, the loss will be felt on the end of those that chose to alienate themselves. I agree. Last Thursday (3/29/12), we experienced an upsetting situation that flared my heart condition and sent my own heart into a type of cardiac arrest, along with the inability to breathe, which brought on a full panic attack, my blood sugar dropped very low, which has never been an issue with me. My husband called rescue and I was treated, I am happy to report Ryleigh and mommy are now doing ok, but need to take it slow and stress free for a long while. I feel bad that Cael had to go through that and see that as he cried he said I thought you were dying, as a mom I never want him to see that!  I am so enamored with my husband’s ability to remain calm even though it was an unnatural position to be in.  Amazing man indeed. He saved my life and our child’s life because he made the right decisions.

Other parents have stated don’t feel guilty for what you cannot control, only focus on what you can control. Great advice and we are going to take it!

Look to the Future

We have several appointments coming up and will share what is going on as we know it. At this time we are putting on our big parents pants and preparing for the arrival of our daughter in about 16 ½  weeks now. I just know the time will fly by.

As we look into the future, I am pleased to announce I am now a doctor, yahoo I finished my degree, just in time! I would NOT have been able to do this without the support of my crew: Craig, Cael, and Ryleigh!

Here’s to opening new doors and looking toward the rainbow.